2-week hospital stay after VATSappendix removalchest tube required overnight after VATSchronic pain from VATS proceduresclogged chest tube with 1 liter fluid buildupcomplications from hysterectomyloss of left fallopian tubemajormissed diaphragmatic endometriosispainful recovery
Self-reported by patients. Complication rates vary by case complexity.
Posts from users who described first-person experiences with this doctor.
Each "View on Reddit" link goes to the original public post for verification.
Patient 4Had SurgeryPositive29 posts
“Patient had two surgeries with Dr. Sinervo. First surgery (2016): excision, left ovary and tube removal (destroyed by recurrent endometrioma), PSN, and appendectomy. Recovery was dramatically easier than prior surgery with Nezhat — walking upright in hospital hallways the same day, able to explore Atlanta 4 days post-op. Nine months out: no daily pain, no bloating, no pain with sex or activity. Second surgery: endometrioma removal from remaining right ovary; no endo found. One year out from seco”
r/r/infertility
Interesting. Dr. Sinervo didn't seem to discourage me from using Toradol during periods. I stopped using ibuprofen during the rest of my cycle because it seemed to be causing cysts (my theory is luteinized unruptured follicle syndrome). Did the CEC say anything to you about IVF meds flaring endo/adeno? I asked and Dr. S said no, but I'm still worried.
Maybe call and clarify about Toradol use with them? It can be such a helpful drug for cramps.
By manual PT I meant that the PT was using her hands/fingers to massage and release muscles internally and externally. I did about a year of that PT in 2007, it helped a lot. I tried more in late 2014, right before my surgery, but I felt like it really wasn't helping my endo symptoms which were far worse than my PFD symptoms at that point. I just ended up crying every session and that was exhausting for me.
I'm sorry Dr. Sinervo wrote you off, that's super upsetting. I didn't realize they refuse cases, I've heard good things about them. I understand you're hesitant to start again, but from what I've read, excision surgery with a specialist has the best long term outcomes, everything else is kind of a band aid.
I have a retroverted uterus too, and I wonder if that had something to do with my cervix being bound to my rectum. In any case, if you have an obliterated cul de sac like I did, no pill or PT will make it better. So, not to belabor surgery, but I would encourage you to try again to find another surgeon. I totally get how frustrating it can be for a doctor to write you off. If you haven't already, you might look at the full list of excision specialists on Nancy's Nook Endometriosis Support group on FB, maybe they have a surgeon closer to you? They update it frequently.
Ugh, that blows about the insurance situation. I had Kaiser last year and they did just about nothing for me, and may have overlooked the endometrioma on my ovary for a year, leaving it basically trashed. Not cool.
I bet that it was a miscommunication with Dr. Sinervo. Would you consider sending your info again? I'm guessing your first surgeon didn't recognize all the disease. You definitely don't deserve to be in that much pain, none of us do. It's crazy to me how much suffering this disease brings and no one talks about it openly.
Just curious about what Dr. Sinervo does that you don't agree with? I'm considering seeing him next if my pain gets worse.
Just a thought, if you can find the right therapist (one that you jive with and is willing and able to research and understand endo), it might be beneficial to work through the trauma surrounding your last surgery. Not as any kind of 'fix that and your pain will be fixed' kind of thing, but to help you process what happened and why it happened. I know I went through a lot of emotions before my lap, I felt unfairly forced into doing it because my quality of life was so shitty at the time. It's not a good position to find yourself in, and therapy helped me unpack my emotions in a safe environment.
[This is a great talk](http://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355) by a leading endometriosis surgeon about endo on the bowel. He mentions that some women have constipation that then leads to reflex diarrhea. This might help explain the alternating between constipation and diarrhea. I would suggest keeping track of all your symptoms in relation to your cycle. There are some great apps for this, I like Clue. I would suggest going to the best endo surgeon you can access (check the map in the sidebar, you want an excision surgeon), if your bowel is involved then it's likely that you're at a higher stage of endo and will need greater expertise and possibly the involvement of a GI surgeon as well. These symptoms do sound like endo to me, but you need to weigh the pros and cons of surgery for your particular case, and whether your symptoms interfere with your life enough for you to want surgery. I would not necessarily recommend a lap for purely diagnostic reasons, it won't help your symptoms and you're out a week of work and whatever co-pays or co-insurance.
I'll reply to this since I did travel: I flew with my husband to Atlanta from across the country. Of course my period decided to come on the day I flew - UGH. I ended up requesting a wheelchair at the check in desk because I was in too much pain and too doped up from pain killers to stand in the security line without passing out. It was definitely worth the embarrassment and really cemented in my mind how much I needed this surgery.
I settled into a nearby hotel that had a mini-kitchen (fridge, stove, dishwasher, microwave). I went to my pre-op appointment the next day, met Dr. Sinervo, had an exam and ultrasound. We agreed on what procedures to do (we had discussed this via phone previously but the physical exam helped narrow down what needed doing) and I started my bowel prep that night. I didn't sleep much, and had surgery bright and early the next day.
Surgery went really smoothly. The staff at Northside is amazing, I was really worried about staying overnight in the hospital but it was actually really easy and not as depressing as I thought it would be. Because Dr. S and I had discussed a possible bowel resection which would have necessitated a longer hospital stay I planned my travel to stay in Atlanta for almost two weeks. When I woke up from surgery they told me they didn't need to do a resection, so I was free to go back to the hotel after the overnight in the hospital. I felt a LOT better after this surgery than my first excision. Right away I was walking upright through the hospital hallways.
After a few days I was ready to go out and explore Atlanta a little. Four days after surgery, my husband and I went out to lunch with a friend. A few days after that we went to a museum and walked around. I had a post op visit one week after surgery and I flew home 9 days after surgery. I probably could have flown home around day 4-5, but I wanted to give myself as much rest as possible. I requested a wheelchair at the airport on my way home again, but mainly just as a precaution, I could have done without it. I booked first class seats home so I could be close to a bathroom and have more room/comfort, but honestly I was feeling so good that I would have been fine without first class.
The CEC is very used to traveling patients, they have had patients from all over the world, so they work with you to make sure everything goes smoothly. After you send in your packet a doctor will call you to discuss your case. This is all free and it's a good time to ask about travel concerns.
Sounds like it could be any combo of the following: endometriosis, adenomyosis, or pelvic floor dysfunction. Please go see an endometriosis specialist. They should be well versed in all of the above conditions. The Successful Doctor's map on the sidebar of r/endo is a good place to start. Nancy's Nook group on Facebook has a vetted list of excision surgeons if you are interested in surgery. They will be able to do diagnostic surgery and excise any endo they find. Excision is the gold standard treatment for endo, and some doctors recommend suppressive therapy (like birth control or IUS) after excision. In the meantime, this is some good reading for info about IBS vs. endo and how to tease out what might actually be going on: http://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355
My personal recommendation would be the Center for Endometriosis Care in Atlanta. Dr. Sinervo did my last surgery and he was absolutely amazing. He is fully capable of handling the most complex cases, including endo on the bowel and thoracic endo. He is well versed in all kinds of pelvic pain generators. Many patients travel to see him from all over the world, they can consolidate appointments to help with people traveling. They also do a free records review, which is a good place to start, especially with complicated cases. He has virtually universal praise from former patients.
There aren't any docs in NC or SC on the list with Nancy's Nook. There is a doc in Buffalo, Dr. Ali Ghomi. In Florida, you could look into the Jacksonville Center for Reproductive Medicine. You might search NN for more feedback about these two places.
We should indicate which docs are doing successful PSNs since that's a very specialized skill specific to adeno. I saw Dr. Sinervo in Atlanta for my PSN, he did an amazing job with the PSN and with excision for endo. Can't recommend him enough.
I had surgery with Dr. Camran Nezhat in Palo Alto (already submitted feedback - I personally can't recommend him, but I know others have had success with him). I had a second surgery with Dr. Ken Sinervo including PSN. He was amazing, his staff is absolutely amazing, the entire experience was specifically geared towards reducing pain and healing time as much as possible (they humidify and heat the CO2, they use platelet therapy to reduce adhesions etc etc). I'm 9 months out and in no daily pain. No more bloating, much less fatigue, no pain with sex or activity (even running). Highly recommend him.
[This](https://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355) is a great read about endo and IBS. Personally having worked in IBS research... I actually think that most IBS in women is caused by (usually undiagnosed) endo. Alternating constipation/diarrhea is common with endo on the bowel.
I also liked my Mirena a lot. Forewarning, many women with endo need a new Mirena sooner than women without, there's a point at which the progesterone levels are too low to abate symptoms. I've heard a lot of women have symptoms kick up around the 3 year mark, at which point you should be able to have it replaced if you choose. If the Mirena isn't a good long term option for you, you should research excision surgery, it tends to be more effective and have longer lasting results than ablation. The Successful Doctors map on the right is a good place to start looking if you're interested in seeing an endo specialist.
Your history sounds almost exactly like mine. I thought I was just this bizarre woman with insanely painful periods and painful sex. It wasn't until my diagnosis and opening up to people online and in person that I realized that endo is really common, up to 10% of women have it. It's just criminally under-researched and it can be hard to find good care. I was blown off by plenty of doctors, hell I even get blown off now by some doctors. It has nothing to do with my reality. I know what I experience, and their opinion on my pain is just that, their opinion. If I disagree, I move on to another doctor. You can shorten this revolving door by getting in with a specialist. They understand more, and they won't make you feel crazy. The man who wrote that presentation is Dr. Ken Sinervo who is an expert in endo excision and did my last surgery. I traveled across the country to see him, and it was totally worth it. There are doctors that understand the pain we're in and don't belittle it. One of the things that blew me away about Dr. S was that he literally looked at every single part of surgery and figured out a way to make it less painful and make healing easier. He uses warmed and humidified CO2 during surgery to avoid post surgical gas pain. He uses platelet rich plasma therapy to speed healing times. Anyway, I'm rambling, I just mean to say that specialists are a different breed to general gyns and they are well worth the time, effort and travel to see one.
First off, your symptoms sound exactly like my endo symptoms. I also struggled with constipation for years too. I would recommend you check out [this talk](https://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355) given by Dr. Ken Sinervo, he is a leading excision surgeon and an endo expert.
For me, the constipation was caused by my colon being stuck to the wall of my body due to endo adhesions. My colon just couldn't move normally to push the stool out. This lead to constipation and straining.
Your symptoms are not normal. Throwing up from pain during your period is not normal. Ever. Coupled with your other symptoms which are essentially textbook endo. I strongly recommend you book an appointment to see an endo specialist. Often you can do this without a referral from your doctor. The Successful Doctors map on the right sidebar is a good place to look for a specialist near you. Excision surgery is considered the gold standard for endo care. Excision surgeons are marked with hearts on the map. You don't need to have a diagnostic lap before having excision. Excision is different than ablation, ablation burns off the top layer of endo but can leave behind the rest of the deposit, which can grow back and cause pain again (which is why many patients end up having repeat surgeries). Excision removes the endo by the root, which has lower rates of recurrence.
Excision surgery and a pre-sacral neurectomy (a treatment for adenomyosis which I also have) stopped my daily pain, nearly eliminated my bloating, nausea, and constipation. I no longer have pain during sex, deep penetration is actually pleasurable. My period pain is far more manageable, I no longer pass out or throw up during my periods.
You are young, and lots of doctors will want to try anything else before surgery. This isn't necessarily bad if (and only if) you are tolerating the medication well and it is controlling your symptoms. It sounds to me like your symptoms are not well controlled.
Most excision doctors will consider you as a candidate for surgery regardless of age, which is why I would recommend you see an excision surgeon specifically. Many women continue with suppressive therapies like Mirena or BCP after excision, some doctors feel this will keep the endo at bay longer, others think that with proper excision you shouldn't need hormonal suppression. It will probably depend on your particular case.
After you call and make your appt (some specialists book out months in advance), make sure you are tracking all of your symptoms every day. There are apps you can get that will help with this. You'll want to track your periods, pain, bloating, constipation, nausea, pain with sex, etc etc. This will be really helpful for your specialist to see, and it will give you a good idea of how bad your symptoms are. Plus, if you try something new to help the endo, you can clearly see if things have improved or not.
Good luck and please keep us updated :)
So I agree there is a strong link between IBS and endo, especially IBS-C. I had chronic constipation and some pain with bowel movements (never went to a GI so was never diagnosed with IBS-C), when I had my lap the doc found that my rectum and part of my colon were stuck to the side of my body with adhesions/endo, so that part of my colon was simply not able to move freely enough to push stool through, leading to constipation. [This](https://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355) is an excellent discussion of IBS and endo.
There are many theories on how endo arises, personally I favor the Müllerianosis theory which says that endo is laid down during embryological development, which helps explain why endo has been found in fetuses and in distal sites in adult bodies like the lungs, heart, and brain (all very very very rare). [This website](http://endopaedia.info/resources.html#key) has lots of information about the Müllerianosis theory.
From what I've seen in people on endo boards, I don't think there is a great link between body fat/weight and endo severity. If you look on endo boards you'll find plenty of average, thin and underweight people. Some people experience nausea or pain so badly that it becomes difficult to eat and they lose substantial weight with no reduction in symptoms. Also, the idea that you can control endo pain by losing weight or fasting could be potentially dangerous, I personally developed anorexia as a teen trying to deal with the pain of endo in this way.
Constipation can absolutely aggravate endo symptoms. What has worked for me is taking a bulk laxative like Miralax or psyllium husk each evening before bed. Some people have success with anti-inflammatory diets, but you need to make sure that the diet is something you would realistically be able to stick to long term. I've seen too many endo patients blame themselves for pain flares because they cheated on their insanely strict diet. It becomes emotionally overwhelming and again, it can be problematic to assume you have control over a chronic disease with a physical cause.
Lastly, excision surgery with an expert surgeon is considered the gold standard for endo treatment. We have a Successful Doctors map on the right sidebar, excision docs are marked with hearts.
I had excision, left ovary removal (due to recurrent endometrioma) and PSN with Dr. Sinervo and had amazing relief after. I'm about 14 months out now. Unfortunately I've had an endometrioma form on my remaining ovary, so I'm on my way back to them to deal with the endometrioma. Their practice is run AMAZINGLY with fantastic staff. The doctors are amazing and very caring. They literally look at the entire process of the lap and make it as efficient and pain free as possible. They even heat and humidify the CO2 gas they use to expand you during surgery which cuts down on gas pains after surgery SO MUCH. My first surgery with a local doctor I had gas pains for over a week, with the CEC I had minor gas pains for about 2 days. In my opinion they are completely worth it. There are ways to fight with insurance to get them to cover more of the surgery, but ultimately I feel like I paid less than I would have if I had needed repeat surgeries with a local doc and lost wages due to not feeling well.
They didn't omit him due to high expense, they omitted him for the missed disease that several members had confirmed after surgery with him. I have seen him for a several consults (he does do thorough ultrasounds and has a good working knowledge of modern concepts in endometriosis treatment). He is very nice, his staff is very nice. I don't think he has the surgical skill to really remove all endo, and he freely admitted to me that there are structures that he is uncomfortable excising on and chooses to use ablation on (fallopian tubes, ovaries etc). Ultimately I chose to go with Dr. Sinervo in Atlanta. For less that what Dr. Cook quoted you (including airfare and hotel), I got excellent surgery with no recurrence of endometriosis. When I look at actual feedback from patients of Dr. Sinervo, there is far less recurring disease and excellent overall feedback. Ultimately if you're going to invest in your health, it's worth going to the surgeon that can give you the most relief for the longest period of time (hopefully permanent relief).
This is worth doing right the first time. I promise you. My first surgery was done by a subpar specialist. I wasted time, money and a lot of pain for very subpar results. Dr. Sinervo does free record reviews and is very experienced handling out of town patients. Another couple hundred dollars is worth the investment to avoid flushing $12k down the drain.
Please do. Dr. Sinervo is certainly worth a look. Also I can also recommend from personal experience that you avoid Dr. Camran Nezhat as well, I had very poor results from surgery with him (or one of his fellows, it's hard to tell who actually did my surgery - which is a problem in and of itself).
I know NN has at least one doc doing good surgery in Los Angeles. There's also an excellent surgeon in Seattle, Dr. Cindy Mosbrucker, I would recommend looking into her if you don't want to travel all the way to Atlanta. Even among surgeons on NN list, there are stand outs, and I think Dr. Sinervo and Dr. Mosbrucker are definitely standouts.
This is a really great [talk about IBS and endo](https://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355). Alternating constipation/diarrhea is a symptom he specifically points out as being indicative of adhesions or narrowing of the bowel. It might be worth talking to your endo specialist or possibly seeking a second opinion from a different endo specialist. If there are adhesions it may be worth having surgery to free up your bowel, but you'll want to do that with a surgeon that works with a bowel surgeon and also uses effective adhesion barriers to prevent them from returning. It may also be worth seeing how you tolerate the Visanne and seeing if that helps. Most of all, your symptoms are normal and there are treatments out there, it just might take some time and the right specialist to find the right plan for you. Keep us updated :)
[This](https://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355) is a very good talk about endometriosis and IBS and the overlap between. Alternating diarrhea and constipation can be a hallmark of endo on the bowels. Personally I had chronic constipation because my endo had caused adhesions all over my colon/rectum and it was unable to move normally.
I would strongly recommend going to see an endo specialist, specifically an excision surgeon. They can do an ultrasound and see subtle signs of endo that many ultrasound techs miss. The ultrasound together with a physical exam and a history of symptoms will form a pretty complete picture for the specialist. Most specialists can predict whether a patient will have endo based on those tests with quite a bit of accuracy.
Your pain is real. Your pain is important. Your pain is treatable. It's easier for doctors to gaslight you when they don't have a good treatment to offer. It's easy to gaslight ourselves when we don't have any answers and doctors aren't helping. That's why it's so important to see an endo specialist.
In short, yes, your symptoms sound very much like endo, possibly endo on your bowel and bladder as well. A lap is worth it when it's done by a skilled surgeon, so I strongly urge you to see the best specialist you can access, excision surgery with a skilled surgeon is the gold standard for endo treatment. The Successful Doctors map on the right sidebar is a good place to start looking for a specialist, excision docs are marked with hearts. Good luck and I hope you get some relief soon!
[This](https://www.endofound.org/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md) is a good talk on the overlap between IBS and endo on the bowel. I have had similar GI symptoms and have stage 4 endo with endo on my rectum. It was essentially adhering my rectum and lower colon to the side of my body, keeping it from moving/functioning normally. I had constipation with some diarrhea around my periods. I would sometimes get excruciating cramps while using the bathroom. My rectum was also adhered to my cervix/vagina (obliterated cul de sac), coupled with adenomyosis making my uterus tender basically meant anything passing through that area was causing pain. Sex was also very painful. After excision surgery and a pre-sacral neurectomy (for adeno) I have no GI issues or pain with sex. I did not need a bowel resection or colostomy bag.
Your symptoms sound like endo and quite possibly bowel endo. It's possible that you may have endo deposits on your bowel, it's also possible that endo deposits nearby are causing inflammation near your bowel which is contributing to these symptoms. [This](https://www.endofound.org/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md) is a great talk about the overlap between bowel endo and IBS by a leading excision surgeon.
You could try progestin only treatments like Mirena or progestin only pills or shots. I would also recommend researching excision surgeons and taking a look at the Successful Doctors map on the right sidebar. Excision surgeons are marked with hearts. Excision is considered the gold standard for endo treatment, and sometimes hormonal suppression will work better after excision. You'll want an excision doc that works in tandem with a GI surgeon if you suspect bowel endo because on the off chance you need a bowel resection (very rare) you'll want a GI surgeon on hand. Most of the time the endo is near the bowel and is removed by the excision surgeon, sometimes it can also be shaved off the bowel without a resection.
My experience was similar to yours, I had chronic constipation and during surgery they found that I had an obliterated cul de sac (the space between my rectum and vagina which is normally open was fused) and my lower colon was adhered to my body. This made it difficult for it to contract normally and lead to my constipation. Surgery has helped a lot, I still take a bulk laxative (Miralax) every night to keep things moving. Excision surgery been key in controlling my pain and has made my periods tolerable with only a prescription NSAID (before I had extreme pain, vomiting and would sometimes pass out).
I hope you get some relief soon! Please keep us updated!
In my experience it's worth it to get to an excision surgeon. Getting knocked out by pain for a week is not normal and is not a great level of functioning. Your IBS symptoms could also be caused by endo on or near your bowel. [This](https://www.endofound.org/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md) is a good talk about the overlap between IBS and endo. Adding in bladder symptoms and you've hit all the pelvic bases, and at that point I would strongly strongly recommend talking to an excision expert. Your case is likely quite complex and will need some expertise.
I've heard the term 'lean PCOS' thrown around quite a bit, I haven't researched it much but my understanding is that it's all the PCOS symptoms without the weight gain. Might be something to research. I hope your test results help shed more light on what's going on. Please update us if you can.
Oh, and just to be super clear, ibuprofen is an NSAID and in my particular case, that's what I was taking which was causing my cysts. Sometimes people don't realize the meds they're taking are NSAIDs. Your wording was a bit vague in your last post so I just wanted to make extra sure we're on the same page.
I'm so sorry that happened to you. Something similar happened with me with Dr. Camran Nezhat, so much endo was missed including DIE. We think in my case a fellow did much of my surgery. I saw Sinervo after him and he found endo everywhere and I've had so much more relief following that surgery. Thank you for sharing, it's important to hear all sides.
I had surgery with Dr. Sinervo at CEC. My experience was excellent. They really think about every aspect of surgery and literally make it as easy as possible. The nursing staff and stay at Northside was amazing. If you're traveling I recommend Staybridge suites, very cozy and quiet, great place to recover. I had surgery with Dr. S in 2016, so scheduling might be a bit different now. I'm guessing you can get in with Dr. Arrington sooner since he's building his patient base. If you can hold out for Dr. Sinervo I think it's probably worth it.
During my 2016 CEC surgery I had excision, removal of my left ovary and tube (they had been destroyed by a recurrent endometrioma), PSN and appendectomy. Recovery was really easy, daily pain was zero, period pain was moderate. I had an endometrioma crop up on my remaining ovary about a year later and returned to have it removed. Dr. S didn't find any more endo and I've been doing great since then (1 year out). I have no daily pain and moderate period pain that I can control with prescription NSAIDs.
Hope that helps and feel free to pepper me with questions!
I definitely experienced this, usually on the first or second day of my period when my pain was at it's worst. For me the vomiting and cold chills were a responses to [peritoneal pain](https://en.wikipedia.org/wiki/Peritonitis) which caused a [vasovagal response](https://en.wikipedia.org/wiki/Reflex_syncope). Essentially my pain would get so intense and irritate my peritoneum triggering the vasovagal response which would then cause me to break out into a cold sweat and vomit and/or dry heave over and over and even start to black out (my vision and hearing would diminish if I was sitting up or standing, it usually got better if I stayed lying down).
I kept the pain and vomiting/chills at bay for many years with birth control, but eventually I had to go off for mental health reasons. Luckily excision surgery with an expert (including a pre-sacral neurectomy for my suspected adenomyosis) really helped. It's been about 3 years since my excision surgery and while periods are still more painful than a normal period, I no longer get the same vasovagal reaction, I haven't thrown up since before that surgery. I get somewhat nauseas, but Zofran helps with that, and I take a prescription NSAID called Toradol for the pain. Both have generics and are very cheap and I only need to use them for a few days a month.
I would strongly recommend seeing an endo specialist and looking into excision surgery, the Successful Doctors map on the right sidebar is a good place to check for specialists near you, excision surgeons are marked with hearts. I would also strongly recommend reading [this article](https://www.endofound.org/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md) about endo and IBS, I thought it was a really interesting insight on how IBS symptoms and endo symptoms overlap and diverge.
I really hope you find something that helps soon, I know exactly the hell you're describing, it's truly awful :(
I'm with you on wanting the endo out - you're right, it's not supposed to be there!! For me, I didn't worry too much about the PSN because most people, most of the time, don't feel their uterus. So to me it was like re-leveling the playing field. I was slightly worried about permanent side effects, but now almost 3 years on I haven't had any of those that I can tell (no urinary urgency, maybe some constipation but I had that before surgeries and manage it well now with Miralax). I can say from my experience, even though the PSN took care of the extreme pain, I can still somewhat tell when my uterus is cramping, I just feel it far less intensely and in different places. I wouldn't be worried about going into premature labor or not knowing I was in labor. Also, I should say, Dr. Sinervo at the CEC did my PSN, and I'm glad he did it because he does so many. It made me feel more comfortable to have very skilled hands doing such a delicate operation.
I did have nerve pain, I had sciatic pain in particular. That was resolved with my first surgery with Dr. Sinervo. Some other pains like around my vulva and anus/tailbone didn't fully resolve until my hysterectomy (the daily pain got better but the pain with periods remained until my hyst). A friend of mine had very bad sciatic pain and nerve pain which unfortunately was not completely relieved with surgery with Dr. Sinervo. Endo and nerve pain can be really complicated and it's all very dependent on where you have endo deposits and whether they're excised completely and how they heal.
I think going to endo excision experts will give you the best chance at a good outcome, but every outcome is individual and unfortunately surgery may not solve everything, or not right away. To me Dr. Sinervo stood apart from other surgeons I've seen because he not only legitimately cares about his patient's suffering, he actually takes measures to address as much of it as possible, from surgical technology and techniques to his office staff running the practice like a well oiled machine.
My nausea is gone after my hyst but I did still have nausea around my periods after excision. My endo belly is pretty much gone after my hyst (not that I have a flat belly, it's just not that horrible inflammatory bloat), but I did still deal with it after my excision. So in my case it's clear that even with the nerves to my uterus severed, just having that very diseased organ in my body caused a lot of inflammation and irritated nerves around it and just caused me to be very ill each month.
Patient 15Had SurgeryPositive29 postslaparoscopic excision surgery (first, with Nezhat)laparoscopic excision surgery (second, with Sinervo — extensive excision + left ovary/tube removal + PSN + appendectomy)endometrioma removal (right ovary, with Sinervo)
“Patient had excision surgery, left ovary and tube removal, PSN, and appendectomy at CEC. Traveled across the country. Recovery was significantly easier than first surgery — walking upright through hospital the day of surgery, able to explore Atlanta at 4 days post-op, flew home at 9 days. No bowel resection needed despite being on the differential. No daily pain, no bloating, no pain with sex, no vomiting/vasovagal response. Period pain reduced to manageable with Toradol only. Approximately 1 ye”
r/r/infertility
Interesting. Dr. Sinervo didn't seem to discourage me from using Toradol during periods. I stopped using ibuprofen during the rest of my cycle because it seemed to be causing cysts (my theory is luteinized unruptured follicle syndrome). Did the CEC say anything to you about IVF meds flaring endo/adeno? I asked and Dr. S said no, but I'm still worried.
Maybe call and clarify about Toradol use with them? It can be such a helpful drug for cramps.
By manual PT I meant that the PT was using her hands/fingers to massage and release muscles internally and externally. I did about a year of that PT in 2007, it helped a lot. I tried more in late 2014, right before my surgery, but I felt like it really wasn't helping my endo symptoms which were far worse than my PFD symptoms at that point. I just ended up crying every session and that was exhausting for me.
I'm sorry Dr. Sinervo wrote you off, that's super upsetting. I didn't realize they refuse cases, I've heard good things about them. I understand you're hesitant to start again, but from what I've read, excision surgery with a specialist has the best long term outcomes, everything else is kind of a band aid.
I have a retroverted uterus too, and I wonder if that had something to do with my cervix being bound to my rectum. In any case, if you have an obliterated cul de sac like I did, no pill or PT will make it better. So, not to belabor surgery, but I would encourage you to try again to find another surgeon. I totally get how frustrating it can be for a doctor to write you off. If you haven't already, you might look at the full list of excision specialists on Nancy's Nook Endometriosis Support group on FB, maybe they have a surgeon closer to you? They update it frequently.
Ugh, that blows about the insurance situation. I had Kaiser last year and they did just about nothing for me, and may have overlooked the endometrioma on my ovary for a year, leaving it basically trashed. Not cool.
I bet that it was a miscommunication with Dr. Sinervo. Would you consider sending your info again? I'm guessing your first surgeon didn't recognize all the disease. You definitely don't deserve to be in that much pain, none of us do. It's crazy to me how much suffering this disease brings and no one talks about it openly.
Just curious about what Dr. Sinervo does that you don't agree with? I'm considering seeing him next if my pain gets worse.
Just a thought, if you can find the right therapist (one that you jive with and is willing and able to research and understand endo), it might be beneficial to work through the trauma surrounding your last surgery. Not as any kind of 'fix that and your pain will be fixed' kind of thing, but to help you process what happened and why it happened. I know I went through a lot of emotions before my lap, I felt unfairly forced into doing it because my quality of life was so shitty at the time. It's not a good position to find yourself in, and therapy helped me unpack my emotions in a safe environment.
[This is a great talk](http://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355) by a leading endometriosis surgeon about endo on the bowel. He mentions that some women have constipation that then leads to reflex diarrhea. This might help explain the alternating between constipation and diarrhea. I would suggest keeping track of all your symptoms in relation to your cycle. There are some great apps for this, I like Clue. I would suggest going to the best endo surgeon you can access (check the map in the sidebar, you want an excision surgeon), if your bowel is involved then it's likely that you're at a higher stage of endo and will need greater expertise and possibly the involvement of a GI surgeon as well. These symptoms do sound like endo to me, but you need to weigh the pros and cons of surgery for your particular case, and whether your symptoms interfere with your life enough for you to want surgery. I would not necessarily recommend a lap for purely diagnostic reasons, it won't help your symptoms and you're out a week of work and whatever co-pays or co-insurance.
I'll reply to this since I did travel: I flew with my husband to Atlanta from across the country. Of course my period decided to come on the day I flew - UGH. I ended up requesting a wheelchair at the check in desk because I was in too much pain and too doped up from pain killers to stand in the security line without passing out. It was definitely worth the embarrassment and really cemented in my mind how much I needed this surgery.
I settled into a nearby hotel that had a mini-kitchen (fridge, stove, dishwasher, microwave). I went to my pre-op appointment the next day, met Dr. Sinervo, had an exam and ultrasound. We agreed on what procedures to do (we had discussed this via phone previously but the physical exam helped narrow down what needed doing) and I started my bowel prep that night. I didn't sleep much, and had surgery bright and early the next day.
Surgery went really smoothly. The staff at Northside is amazing, I was really worried about staying overnight in the hospital but it was actually really easy and not as depressing as I thought it would be. Because Dr. S and I had discussed a possible bowel resection which would have necessitated a longer hospital stay I planned my travel to stay in Atlanta for almost two weeks. When I woke up from surgery they told me they didn't need to do a resection, so I was free to go back to the hotel after the overnight in the hospital. I felt a LOT better after this surgery than my first excision. Right away I was walking upright through the hospital hallways.
After a few days I was ready to go out and explore Atlanta a little. Four days after surgery, my husband and I went out to lunch with a friend. A few days after that we went to a museum and walked around. I had a post op visit one week after surgery and I flew home 9 days after surgery. I probably could have flown home around day 4-5, but I wanted to give myself as much rest as possible. I requested a wheelchair at the airport on my way home again, but mainly just as a precaution, I could have done without it. I booked first class seats home so I could be close to a bathroom and have more room/comfort, but honestly I was feeling so good that I would have been fine without first class.
The CEC is very used to traveling patients, they have had patients from all over the world, so they work with you to make sure everything goes smoothly. After you send in your packet a doctor will call you to discuss your case. This is all free and it's a good time to ask about travel concerns.
Sounds like it could be any combo of the following: endometriosis, adenomyosis, or pelvic floor dysfunction. Please go see an endometriosis specialist. They should be well versed in all of the above conditions. The Successful Doctor's map on the sidebar of r/endo is a good place to start. Nancy's Nook group on Facebook has a vetted list of excision surgeons if you are interested in surgery. They will be able to do diagnostic surgery and excise any endo they find. Excision is the gold standard treatment for endo, and some doctors recommend suppressive therapy (like birth control or IUS) after excision. In the meantime, this is some good reading for info about IBS vs. endo and how to tease out what might actually be going on: http://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355
My personal recommendation would be the Center for Endometriosis Care in Atlanta. Dr. Sinervo did my last surgery and he was absolutely amazing. He is fully capable of handling the most complex cases, including endo on the bowel and thoracic endo. He is well versed in all kinds of pelvic pain generators. Many patients travel to see him from all over the world, they can consolidate appointments to help with people traveling. They also do a free records review, which is a good place to start, especially with complicated cases. He has virtually universal praise from former patients.
There aren't any docs in NC or SC on the list with Nancy's Nook. There is a doc in Buffalo, Dr. Ali Ghomi. In Florida, you could look into the Jacksonville Center for Reproductive Medicine. You might search NN for more feedback about these two places.
We should indicate which docs are doing successful PSNs since that's a very specialized skill specific to adeno. I saw Dr. Sinervo in Atlanta for my PSN, he did an amazing job with the PSN and with excision for endo. Can't recommend him enough.
I had surgery with Dr. Camran Nezhat in Palo Alto (already submitted feedback - I personally can't recommend him, but I know others have had success with him). I had a second surgery with Dr. Ken Sinervo including PSN. He was amazing, his staff is absolutely amazing, the entire experience was specifically geared towards reducing pain and healing time as much as possible (they humidify and heat the CO2, they use platelet therapy to reduce adhesions etc etc). I'm 9 months out and in no daily pain. No more bloating, much less fatigue, no pain with sex or activity (even running). Highly recommend him.
[This](https://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355) is a great read about endo and IBS. Personally having worked in IBS research... I actually think that most IBS in women is caused by (usually undiagnosed) endo. Alternating constipation/diarrhea is common with endo on the bowel.
I also liked my Mirena a lot. Forewarning, many women with endo need a new Mirena sooner than women without, there's a point at which the progesterone levels are too low to abate symptoms. I've heard a lot of women have symptoms kick up around the 3 year mark, at which point you should be able to have it replaced if you choose. If the Mirena isn't a good long term option for you, you should research excision surgery, it tends to be more effective and have longer lasting results than ablation. The Successful Doctors map on the right is a good place to start looking if you're interested in seeing an endo specialist.
Your history sounds almost exactly like mine. I thought I was just this bizarre woman with insanely painful periods and painful sex. It wasn't until my diagnosis and opening up to people online and in person that I realized that endo is really common, up to 10% of women have it. It's just criminally under-researched and it can be hard to find good care. I was blown off by plenty of doctors, hell I even get blown off now by some doctors. It has nothing to do with my reality. I know what I experience, and their opinion on my pain is just that, their opinion. If I disagree, I move on to another doctor. You can shorten this revolving door by getting in with a specialist. They understand more, and they won't make you feel crazy. The man who wrote that presentation is Dr. Ken Sinervo who is an expert in endo excision and did my last surgery. I traveled across the country to see him, and it was totally worth it. There are doctors that understand the pain we're in and don't belittle it. One of the things that blew me away about Dr. S was that he literally looked at every single part of surgery and figured out a way to make it less painful and make healing easier. He uses warmed and humidified CO2 during surgery to avoid post surgical gas pain. He uses platelet rich plasma therapy to speed healing times. Anyway, I'm rambling, I just mean to say that specialists are a different breed to general gyns and they are well worth the time, effort and travel to see one.
First off, your symptoms sound exactly like my endo symptoms. I also struggled with constipation for years too. I would recommend you check out [this talk](https://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355) given by Dr. Ken Sinervo, he is a leading excision surgeon and an endo expert.
For me, the constipation was caused by my colon being stuck to the wall of my body due to endo adhesions. My colon just couldn't move normally to push the stool out. This lead to constipation and straining.
Your symptoms are not normal. Throwing up from pain during your period is not normal. Ever. Coupled with your other symptoms which are essentially textbook endo. I strongly recommend you book an appointment to see an endo specialist. Often you can do this without a referral from your doctor. The Successful Doctors map on the right sidebar is a good place to look for a specialist near you. Excision surgery is considered the gold standard for endo care. Excision surgeons are marked with hearts on the map. You don't need to have a diagnostic lap before having excision. Excision is different than ablation, ablation burns off the top layer of endo but can leave behind the rest of the deposit, which can grow back and cause pain again (which is why many patients end up having repeat surgeries). Excision removes the endo by the root, which has lower rates of recurrence.
Excision surgery and a pre-sacral neurectomy (a treatment for adenomyosis which I also have) stopped my daily pain, nearly eliminated my bloating, nausea, and constipation. I no longer have pain during sex, deep penetration is actually pleasurable. My period pain is far more manageable, I no longer pass out or throw up during my periods.
You are young, and lots of doctors will want to try anything else before surgery. This isn't necessarily bad if (and only if) you are tolerating the medication well and it is controlling your symptoms. It sounds to me like your symptoms are not well controlled.
Most excision doctors will consider you as a candidate for surgery regardless of age, which is why I would recommend you see an excision surgeon specifically. Many women continue with suppressive therapies like Mirena or BCP after excision, some doctors feel this will keep the endo at bay longer, others think that with proper excision you shouldn't need hormonal suppression. It will probably depend on your particular case.
After you call and make your appt (some specialists book out months in advance), make sure you are tracking all of your symptoms every day. There are apps you can get that will help with this. You'll want to track your periods, pain, bloating, constipation, nausea, pain with sex, etc etc. This will be really helpful for your specialist to see, and it will give you a good idea of how bad your symptoms are. Plus, if you try something new to help the endo, you can clearly see if things have improved or not.
Good luck and please keep us updated :)
So I agree there is a strong link between IBS and endo, especially IBS-C. I had chronic constipation and some pain with bowel movements (never went to a GI so was never diagnosed with IBS-C), when I had my lap the doc found that my rectum and part of my colon were stuck to the side of my body with adhesions/endo, so that part of my colon was simply not able to move freely enough to push stool through, leading to constipation. [This](https://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355) is an excellent discussion of IBS and endo.
There are many theories on how endo arises, personally I favor the Müllerianosis theory which says that endo is laid down during embryological development, which helps explain why endo has been found in fetuses and in distal sites in adult bodies like the lungs, heart, and brain (all very very very rare). [This website](http://endopaedia.info/resources.html#key) has lots of information about the Müllerianosis theory.
From what I've seen in people on endo boards, I don't think there is a great link between body fat/weight and endo severity. If you look on endo boards you'll find plenty of average, thin and underweight people. Some people experience nausea or pain so badly that it becomes difficult to eat and they lose substantial weight with no reduction in symptoms. Also, the idea that you can control endo pain by losing weight or fasting could be potentially dangerous, I personally developed anorexia as a teen trying to deal with the pain of endo in this way.
Constipation can absolutely aggravate endo symptoms. What has worked for me is taking a bulk laxative like Miralax or psyllium husk each evening before bed. Some people have success with anti-inflammatory diets, but you need to make sure that the diet is something you would realistically be able to stick to long term. I've seen too many endo patients blame themselves for pain flares because they cheated on their insanely strict diet. It becomes emotionally overwhelming and again, it can be problematic to assume you have control over a chronic disease with a physical cause.
Lastly, excision surgery with an expert surgeon is considered the gold standard for endo treatment. We have a Successful Doctors map on the right sidebar, excision docs are marked with hearts.
I had excision, left ovary removal (due to recurrent endometrioma) and PSN with Dr. Sinervo and had amazing relief after. I'm about 14 months out now. Unfortunately I've had an endometrioma form on my remaining ovary, so I'm on my way back to them to deal with the endometrioma. Their practice is run AMAZINGLY with fantastic staff. The doctors are amazing and very caring. They literally look at the entire process of the lap and make it as efficient and pain free as possible. They even heat and humidify the CO2 gas they use to expand you during surgery which cuts down on gas pains after surgery SO MUCH. My first surgery with a local doctor I had gas pains for over a week, with the CEC I had minor gas pains for about 2 days. In my opinion they are completely worth it. There are ways to fight with insurance to get them to cover more of the surgery, but ultimately I feel like I paid less than I would have if I had needed repeat surgeries with a local doc and lost wages due to not feeling well.
They didn't omit him due to high expense, they omitted him for the missed disease that several members had confirmed after surgery with him. I have seen him for a several consults (he does do thorough ultrasounds and has a good working knowledge of modern concepts in endometriosis treatment). He is very nice, his staff is very nice. I don't think he has the surgical skill to really remove all endo, and he freely admitted to me that there are structures that he is uncomfortable excising on and chooses to use ablation on (fallopian tubes, ovaries etc). Ultimately I chose to go with Dr. Sinervo in Atlanta. For less that what Dr. Cook quoted you (including airfare and hotel), I got excellent surgery with no recurrence of endometriosis. When I look at actual feedback from patients of Dr. Sinervo, there is far less recurring disease and excellent overall feedback. Ultimately if you're going to invest in your health, it's worth going to the surgeon that can give you the most relief for the longest period of time (hopefully permanent relief).
This is worth doing right the first time. I promise you. My first surgery was done by a subpar specialist. I wasted time, money and a lot of pain for very subpar results. Dr. Sinervo does free record reviews and is very experienced handling out of town patients. Another couple hundred dollars is worth the investment to avoid flushing $12k down the drain.
Please do. Dr. Sinervo is certainly worth a look. Also I can also recommend from personal experience that you avoid Dr. Camran Nezhat as well, I had very poor results from surgery with him (or one of his fellows, it's hard to tell who actually did my surgery - which is a problem in and of itself).
I know NN has at least one doc doing good surgery in Los Angeles. There's also an excellent surgeon in Seattle, Dr. Cindy Mosbrucker, I would recommend looking into her if you don't want to travel all the way to Atlanta. Even among surgeons on NN list, there are stand outs, and I think Dr. Sinervo and Dr. Mosbrucker are definitely standouts.
This is a really great [talk about IBS and endo](https://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355). Alternating constipation/diarrhea is a symptom he specifically points out as being indicative of adhesions or narrowing of the bowel. It might be worth talking to your endo specialist or possibly seeking a second opinion from a different endo specialist. If there are adhesions it may be worth having surgery to free up your bowel, but you'll want to do that with a surgeon that works with a bowel surgeon and also uses effective adhesion barriers to prevent them from returning. It may also be worth seeing how you tolerate the Visanne and seeing if that helps. Most of all, your symptoms are normal and there are treatments out there, it just might take some time and the right specialist to find the right plan for you. Keep us updated :)
[This](https://www.endofound.org/video/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md/355) is a very good talk about endometriosis and IBS and the overlap between. Alternating diarrhea and constipation can be a hallmark of endo on the bowels. Personally I had chronic constipation because my endo had caused adhesions all over my colon/rectum and it was unable to move normally.
I would strongly recommend going to see an endo specialist, specifically an excision surgeon. They can do an ultrasound and see subtle signs of endo that many ultrasound techs miss. The ultrasound together with a physical exam and a history of symptoms will form a pretty complete picture for the specialist. Most specialists can predict whether a patient will have endo based on those tests with quite a bit of accuracy.
Your pain is real. Your pain is important. Your pain is treatable. It's easier for doctors to gaslight you when they don't have a good treatment to offer. It's easy to gaslight ourselves when we don't have any answers and doctors aren't helping. That's why it's so important to see an endo specialist.
In short, yes, your symptoms sound very much like endo, possibly endo on your bowel and bladder as well. A lap is worth it when it's done by a skilled surgeon, so I strongly urge you to see the best specialist you can access, excision surgery with a skilled surgeon is the gold standard for endo treatment. The Successful Doctors map on the right sidebar is a good place to start looking for a specialist, excision docs are marked with hearts. Good luck and I hope you get some relief soon!
[This](https://www.endofound.org/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md) is a good talk on the overlap between IBS and endo on the bowel. I have had similar GI symptoms and have stage 4 endo with endo on my rectum. It was essentially adhering my rectum and lower colon to the side of my body, keeping it from moving/functioning normally. I had constipation with some diarrhea around my periods. I would sometimes get excruciating cramps while using the bathroom. My rectum was also adhered to my cervix/vagina (obliterated cul de sac), coupled with adenomyosis making my uterus tender basically meant anything passing through that area was causing pain. Sex was also very painful. After excision surgery and a pre-sacral neurectomy (for adeno) I have no GI issues or pain with sex. I did not need a bowel resection or colostomy bag.
Your symptoms sound like endo and quite possibly bowel endo. It's possible that you may have endo deposits on your bowel, it's also possible that endo deposits nearby are causing inflammation near your bowel which is contributing to these symptoms. [This](https://www.endofound.org/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md) is a great talk about the overlap between bowel endo and IBS by a leading excision surgeon.
You could try progestin only treatments like Mirena or progestin only pills or shots. I would also recommend researching excision surgeons and taking a look at the Successful Doctors map on the right sidebar. Excision surgeons are marked with hearts. Excision is considered the gold standard for endo treatment, and sometimes hormonal suppression will work better after excision. You'll want an excision doc that works in tandem with a GI surgeon if you suspect bowel endo because on the off chance you need a bowel resection (very rare) you'll want a GI surgeon on hand. Most of the time the endo is near the bowel and is removed by the excision surgeon, sometimes it can also be shaved off the bowel without a resection.
My experience was similar to yours, I had chronic constipation and during surgery they found that I had an obliterated cul de sac (the space between my rectum and vagina which is normally open was fused) and my lower colon was adhered to my body. This made it difficult for it to contract normally and lead to my constipation. Surgery has helped a lot, I still take a bulk laxative (Miralax) every night to keep things moving. Excision surgery been key in controlling my pain and has made my periods tolerable with only a prescription NSAID (before I had extreme pain, vomiting and would sometimes pass out).
I hope you get some relief soon! Please keep us updated!
In my experience it's worth it to get to an excision surgeon. Getting knocked out by pain for a week is not normal and is not a great level of functioning. Your IBS symptoms could also be caused by endo on or near your bowel. [This](https://www.endofound.org/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md) is a good talk about the overlap between IBS and endo. Adding in bladder symptoms and you've hit all the pelvic bases, and at that point I would strongly strongly recommend talking to an excision expert. Your case is likely quite complex and will need some expertise.
I've heard the term 'lean PCOS' thrown around quite a bit, I haven't researched it much but my understanding is that it's all the PCOS symptoms without the weight gain. Might be something to research. I hope your test results help shed more light on what's going on. Please update us if you can.
Oh, and just to be super clear, ibuprofen is an NSAID and in my particular case, that's what I was taking which was causing my cysts. Sometimes people don't realize the meds they're taking are NSAIDs. Your wording was a bit vague in your last post so I just wanted to make extra sure we're on the same page.
I'm so sorry that happened to you. Something similar happened with me with Dr. Camran Nezhat, so much endo was missed including DIE. We think in my case a fellow did much of my surgery. I saw Sinervo after him and he found endo everywhere and I've had so much more relief following that surgery. Thank you for sharing, it's important to hear all sides.
I had surgery with Dr. Sinervo at CEC. My experience was excellent. They really think about every aspect of surgery and literally make it as easy as possible. The nursing staff and stay at Northside was amazing. If you're traveling I recommend Staybridge suites, very cozy and quiet, great place to recover. I had surgery with Dr. S in 2016, so scheduling might be a bit different now. I'm guessing you can get in with Dr. Arrington sooner since he's building his patient base. If you can hold out for Dr. Sinervo I think it's probably worth it.
During my 2016 CEC surgery I had excision, removal of my left ovary and tube (they had been destroyed by a recurrent endometrioma), PSN and appendectomy. Recovery was really easy, daily pain was zero, period pain was moderate. I had an endometrioma crop up on my remaining ovary about a year later and returned to have it removed. Dr. S didn't find any more endo and I've been doing great since then (1 year out). I have no daily pain and moderate period pain that I can control with prescription NSAIDs.
Hope that helps and feel free to pepper me with questions!
I definitely experienced this, usually on the first or second day of my period when my pain was at it's worst. For me the vomiting and cold chills were a responses to [peritoneal pain](https://en.wikipedia.org/wiki/Peritonitis) which caused a [vasovagal response](https://en.wikipedia.org/wiki/Reflex_syncope). Essentially my pain would get so intense and irritate my peritoneum triggering the vasovagal response which would then cause me to break out into a cold sweat and vomit and/or dry heave over and over and even start to black out (my vision and hearing would diminish if I was sitting up or standing, it usually got better if I stayed lying down).
I kept the pain and vomiting/chills at bay for many years with birth control, but eventually I had to go off for mental health reasons. Luckily excision surgery with an expert (including a pre-sacral neurectomy for my suspected adenomyosis) really helped. It's been about 3 years since my excision surgery and while periods are still more painful than a normal period, I no longer get the same vasovagal reaction, I haven't thrown up since before that surgery. I get somewhat nauseas, but Zofran helps with that, and I take a prescription NSAID called Toradol for the pain. Both have generics and are very cheap and I only need to use them for a few days a month.
I would strongly recommend seeing an endo specialist and looking into excision surgery, the Successful Doctors map on the right sidebar is a good place to check for specialists near you, excision surgeons are marked with hearts. I would also strongly recommend reading [this article](https://www.endofound.org/when-ibs-is-really-endometriosis-on-the-bowel-ken-sinervo-md) about endo and IBS, I thought it was a really interesting insight on how IBS symptoms and endo symptoms overlap and diverge.
I really hope you find something that helps soon, I know exactly the hell you're describing, it's truly awful :(
I'm with you on wanting the endo out - you're right, it's not supposed to be there!! For me, I didn't worry too much about the PSN because most people, most of the time, don't feel their uterus. So to me it was like re-leveling the playing field. I was slightly worried about permanent side effects, but now almost 3 years on I haven't had any of those that I can tell (no urinary urgency, maybe some constipation but I had that before surgeries and manage it well now with Miralax). I can say from my experience, even though the PSN took care of the extreme pain, I can still somewhat tell when my uterus is cramping, I just feel it far less intensely and in different places. I wouldn't be worried about going into premature labor or not knowing I was in labor. Also, I should say, Dr. Sinervo at the CEC did my PSN, and I'm glad he did it because he does so many. It made me feel more comfortable to have very skilled hands doing such a delicate operation.
I did have nerve pain, I had sciatic pain in particular. That was resolved with my first surgery with Dr. Sinervo. Some other pains like around my vulva and anus/tailbone didn't fully resolve until my hysterectomy (the daily pain got better but the pain with periods remained until my hyst). A friend of mine had very bad sciatic pain and nerve pain which unfortunately was not completely relieved with surgery with Dr. Sinervo. Endo and nerve pain can be really complicated and it's all very dependent on where you have endo deposits and whether they're excised completely and how they heal.
I think going to endo excision experts will give you the best chance at a good outcome, but every outcome is individual and unfortunately surgery may not solve everything, or not right away. To me Dr. Sinervo stood apart from other surgeons I've seen because he not only legitimately cares about his patient's suffering, he actually takes measures to address as much of it as possible, from surgical technology and techniques to his office staff running the practice like a well oiled machine.
My nausea is gone after my hyst but I did still have nausea around my periods after excision. My endo belly is pretty much gone after my hyst (not that I have a flat belly, it's just not that horrible inflammatory bloat), but I did still deal with it after my excision. So in my case it's clear that even with the nerves to my uterus severed, just having that very diseased organ in my body caused a lot of inflammation and irritated nerves around it and just caused me to be very ill each month.
“Phone consult 4/15, surgery 9/27. Performed hysterectomy, excision, lysis of adhesions, and appendectomy. Pathology confirmed endometriosis, adenomyosis, adhesions, fibroids, polyp, paratubal cyst, and partially obliterated appendix. Patient reports no longer needing heat pads or Aleve constantly, lost ~65 lbs post-op, bloodwork normalized. Describes recovery as better than anticipated. Staff described as 'absolutely amazing.' Remaining issues: proctalgia fugax (pelvic floor PT not yet pursued) ”
r/r/endometriosisApr 25, 2023+1 pts
Can you by chance get video or pics from your previous surgery? If so, you can include on a usb drive with your free case review with Dr. Sinervo.
Honestly, having out of network coverage isn't really a win. Insurers will bundle codes and say they "allow" the least number you can imagine for the codes they do allow (they'll say it's the allowed amount o by Medicare standards) and so you end up with $20k of surgeon fees and they "allow" $800 or $1500 of you're lucky. Let's say they "allow" $1500 & your out of network "benefit" is 60/40 vs 80/20 in network and you've spent $500 so far this year towards deductible. So you've got $1000 deductible left..
$1500 allowed
-$1000 left in deductible (you pay this)
= $500 "out of network" that they'll cover... At 60%
You pay 40% of $500 = $200 for the co insurance
$1000 deductible + $200 Co insurance = $1200
But...they only allowed $1500, so the out of network Dr bills you the remaining $18,500 because they were only paid $1500 so far between insurance and you.
$1000 deducible
+ $200 Co insurance
+ $18,500 balance bill
= $19,700
And your out of network "benefit" paid $300.
So don't be hoodwinked with the out of network "benefit" illusion. No matter what type of insurance, you need to appeal to get them to cover more... But how? Because the contract covers medically necessary care and if they cannot and do not provide it in network, then they need to cover the out of network provider that can provide the care and you should pay in network rates and the Dr should be paid reasonably for the time and expertise they have.
Personally, I'm going to try and get a single case rate agreement... I'm working on all the document building right now. I had my phone consult with Dr. Sinervo & should have the quote soon with the billing codes to move ahead on it. I don't expect the insurance company will play nice, but I believe they should cover this so I'm going to try.
Yeah unfortunately now you'll pay a few thousand for the in network between deductible and Co insurance... And then still pay for the out of network. It's very ridiculous that in network can't even recognize it.
I had asked the "chief of surgery" where I was going to this past year about excision during a hysterectomy (I have adeno too) and her answer was very evasive. That's what sent me down the rabbit hole.
I re-asked her on the patient portal and she was like "typically endometriosis will be excised during a hysterectomy if it has led to scarring or involves the uterus." So she basically admitted she can only recognize powder burn appearance and that she'd remove it if it involves the uterus... Because she's already removing the whole uterus. 🤦🏼♀️
She's fired. I'm going to Sinervo.
Here's the thing... I don't see how any Dr stays in business if they're "in network" when they're reimbursed as if they did a 20 min ablation when it's a 5hr excision. The billing /cpt coding is broken and there are not tiers for severity that would say allow them to add 15mins if time for each area to excise etc. I have seen/fired 3 in network doctors this year that were supposed to be "really good" according to other people/reviews. They fail to be able to describe endo in all its forms and not a single one is capable of excising from areas such as colon, ureters and so on. They all say "no one will do that."
So, while I do want everyone to get relief, I caution you that you are likely not going to get 100% of lesions excised and will end up with repeated surgeries and more scar tissue/lesions as a result.
Me personally? I'm going to CEC. I am not going to trust the local Dr's that have proven to me that they're incompetent. Having no surgery at all is actually better than an incomplete (or botched) one if you ask me. I'm going to fight to get insurance to cover as much as I can, but I am not going to stay in network because insurance told me to. I need proper care and I'm confident I will get that with Dr. Sinervo.
In short, none.
I've had issues since I was 12. I have brought up endo and Dr's blew me off. Since my pain is not isolated to just my uterus, I'm not content with just getting a hysterectomy.
As a background, I know for sure I had a 5.5cm cyst on my left side, because I was recently pulling need records and it was on a CT from a kidney stone. I was told in 2018, from a tvus that I have diffuse changes consistent with adenomyosis. 5/19/22 I had a uterine polyp removed via d&c. 1/27/23 i had a cyst rupture on my left ovary (confirmed on 2/22/23 tvus). On a follow up tvus 5/23/23 (new Dr, fired the old ones), they said I now had fibroids, another uterine polyp and another left cyst (they said probably fine but based on it being end of cycle I doubt it), so I had another d&c 6/1/23 (need an utd biopsy anyway for a hysterectomy) & they found a uterine polyp as well as a cervical one (not seen on the tvus). They noted some other stuff on the operative report as well.
But anyway, despite all the estrogen dominant type issues, pelvic dysfunction, and pain, none really seem terribly interested in diagnosing or managing it. So, I filled out a huge patient packet and sent it to CEC. Dr. Sinervo said I was absolutely likely/certain to have endo based on my history and accepted my application. I'm just waiting on the scheduling at this point.
As far as the cost stuff... I can tell you that at the time I got Mirena it was like $800-900 (covered at 50% by my insurance at the time). It wasn't worth it. On the other hand 10-21k to go to CEC and get the surgery I need... I feel it's totally worth it. I'm hoping to get an exception with my insurance to cover more than usual but either way, I've suffered 31 years with these symptoms and enough is enough.
For what it's worth, I'm going to CEC as well. I've heard so many good things about them. One thing I will say is based on symptoms /history Dr. Sinervo is very confident I have endo (I haven't had a previous diagnostic laporoscopy) and 98% confident he'll be able to give me at least some pain relief (obviously he was cautious as to the wording of how much in a phone consult). So I think the presumption of endo is a pretty accurate guess to Dr's that see endo patients day in m day out and do excision, so that part to me isn't a 🚩 on the part of the Dr you consulted with.
But, I would definitely say the patient reviews are #1 consideration to me. It sounds like that one isn't the best. I've seen so many patients say that Dr. Sinervo changed their lives and my heart is at peace with the choice to potentially have to spend a lot of money to see him. I'm not TTC (I'm 43, no kids, never married, lots of repeated cysts/polyps/fibroids & adenomyosis), so I'm going to end the pain and abnormal bleeding issues (also getting a hysterectomy for the non endo stuff), but I've seen so many patients from CEC say that after surgery they were able to quickly conceive within months after healing when they'd failed with ivf before... So absolutely go forward with excision but definitely consider other doctors to do that. While I haven't yet had my surgery, the entire team at CEC with paperwork, billing/insurance, and scheduling questions have been AMAZING! I submitted my application in the mail 3/20, received my consult call 4/15 & I'm awaiting scheduling and it sounds like I'll likely be going in September to give you an idea that it's about 6 months from when you apply to get scheduled... But to me, I've waited 31 years for a Dr to take my issues seriously and no other Dr I talked to passed the test for competency with questions I asked. I'll wait just a bit longer to do it once and do it right. 😁
Best of luck to you and your wife! I hope you are able to conceive and have a happy healthy baby at the other side of all the medical stuff. You sound like a really thoughtful and caring husband so you're the kind of person the world needs as a dad. 👨👩👧
I would ride out the bc for a few months as it takes time to adjust and at minimum it does prevent ovulation (so it can prevent the follicular/functional cysts). As far as surgery, I personally wouldn't just do exploratory/diagnostic because average gyn surgeons don't recognize every appearance of endo and they may do ablation and tell you it's excision when it's not. Plus every surgery can create scar tissue and adhesions so the fewer the better. Though, with your younger age it could buy time to get a little older, which gives a little better chance of more long term/permanent benefits with excision. I do recall one person indicating her had surgery as a teen with Dr. Redwine (who really pioneered the modern minimally invasive/laporoscopic excision & has tons of published articles) and because it was done as a teen, she later needed a surgery in mid-late 20's again with Dr. Sinervo at CEC. I think there's something to the body continuing to mature invisible endo cells until about age 25. I told my niece if she can make it to 25 & save up money, then get surgery with Dr. Sinervo, she'll more likely only need 1 surgery that way. We'll see what happens. She's 18 right now. I'm having surgery with Dr. Sinervo in a couple months (awaiting scheduled date but probably September).
Since you're so young though, the costs really fall on your parents. Do you know if they have an HSA or FSA with their insurance and benefits at work? If so, you could see if they are financially capable of according say... $10-20k out of network costs for a surgery. My Dr performs surgery at an in network hospital and I've hit my out of pocket max this year of $3000 already, so the hospital costs will be $0 for me and it's just the surgeon fees that may end up being about $15k out of pocket after the minimal insurance coverage out of network that I'll need to pay. If your parents could swing it, I would go straight to a specialist like mine and do it on Christmas or spring break.
Even if you meet with a specialist and they say that's their recommendation, does not mean that's what you have to do. Any great specialist will do everything possible to preserve your fertility if that is what you want. So if that's what 1 doctor says, you can seek another opinion. I know Dr. Sinervo, Dr. Colon, and Dr. Yeung have done interviews where they've talked extensively about how they do everything in their power to preserve reproductive organs. Please know you have other options if your particular Dr doesn't give you a plan you're comfortable with.
I haven't had my surgery yet but I've heard really good things about Dr. Yeung and watched a lot of interviews with him. You're in such good hands! I'll be having surgery with Dr. Sinervo in September. 💛
I'll be having a hysterectomy and excison with Dr Sinervo on 9/27. I'm 43 and I've been suffering since menarche at 12. I'm some ways I was second guessing myself at first, because I've never had a laporoscopic dx, but after my phone consult with him he said he was highly confident from my very detailed essay in my application packet that I indeed have endo and that he'll be able to reduce my symptoms. He said 98% chance he'll reduce symptoms but of course has to be careful in wording as to "how much" given the damage that's probably happened in all those years.
That said, I have every bit of confidence that he'll give me my life back from this constant pain. I know I have adenomyosis, polyps (well those as of June were gone again but I've had 3 in the last 2 years so they'll keep coming), at least 1 cyst, and several fibroids. So I do know some things already.
So if you've had symptoms and your Dr is a top notch specialist, they'll find the endo if it's there. And based on symptoms they should be confident it's the likely cause going into it.
Good luck with your surgery!
I placed my application packet in the mail 3/20. I received my consultation call 4/15. My surgery is scheduled 9/27. I think I misread am email though on the scheduling... I thought they'd call me with first available if I didn't state a preference but realized in July that I think I was supposed to reach out either way, so that's when I got the ball rolling on scheduling. In the end for my 2 people that will be traveling with me, September weekend better... So take the surgery date with a slight grain of salt.
I'll be having surgery at CEC with Dr. Sinervo.... God willing. My insurance company is being completely incompetent on preauth. As long as they get surgery ok'd and the hospital coverage is good to go, I'll be fine. I'll still fight to get them to cover as much as possible on Dr. Sinervo, but I wouldn't be able to handle hospital costs... And shouldn't need to since they're in network, but I got a denial Friday saying they weren't going to allow a "referral" to Dr. Sinervo for a cpt for a "consult" for "dysmenorrhoea" because they have "capable providers in network and per contract I have to go to them." Which, all of that is a lie. I didn't request a referral for a consult. I never gave them that cpt. And that diagnosis code was one of MANY. They ignored the info I provided of CPTs for surgical stuff (there's 7)and diagnosis codes (there's 9). And, it wasn't a referral request, it was pre auth for surgery. Also, I have a PPO.... I can choose any Dr I please without referral. I just run the risk of less coverage allowed amounts and % when it's out of network. So it's all garbage. This is BCBS IL. When I get on the other side of this I might make a video/series or a book on it. 😬
Oh cool! I couldn't find his fellowship info! I'm actually going to Dr. Sinervo 😁 Dr. Yeung is great too, though he focuses on fertility cases. I've watched interviews with him and he's great.
Ok thank you for all the clarification. So, I tried to lookup that Dr, but no luck in my initial Google search for me to vet any qualifications. I think the biggest thing is if a Dr doesn't give me a warm fuzzy feeling, I'm basically like NEXT! I need to feel that they really have a plan and that they take the time to convince me they've evaluated me and the history I've provided and communicated/answered my questions and given me truly informed consent. They should educate you on options and explain why the one they're presenting is best given all factors.
You're definitely going for a hysterectomy, but adenomyosis is also something that is chief by a hysterectomy and that is something up consider. I never had the option at 28 so it's hard to say what I would've done if I had.
I looked up the iud... Seems to be the same as Mirena in the hormone and dosage. I definitely had one cost that was like 5.4cm with Mirena (though no one told me at the time... Later found out requesting medical records and it was in a radiology report from a CT). At this point, I'm getting multiple complex cysts a year and I'm definitely "over it." But I'm 43 so the decision is a bit easier.
So what would I do if it were me? I would seek another opinion. With your lack of current insurance, you could consult with an endo specialist that does free record reviews. Given you have a few months anyway, it gives you time to get insurance and at least get the hospital part covered well since that is in network for most. For sure Dr. Sinervo in Atlanta fits that game plan. That's who I'm going to. I don't know your financial situation and whether you can do the surgeon fee portion given the move and new job, but it's something to consider. I'm attempting to get the surgeon fees "better" covered by my insurance, but at this point I don't how how that will turn out. Essentially I'll need to pay $10k by my surgery date and then I'll be battling insurance to repay some of that plus what remains... Or that's the goal, but k need to front the $10k understandably because I'm sure people would stiff the Dr after they've had surgery, so that's the bare minimum where they don't lose their 🍑 if someone doesn't pay a penny more afterwards.
I'm having the same thing done in a month with Dr. Sinervo!
Out of curiosity, what is the pain medication prescription situation for hyst with the excision?
"Around 70% of adolescents who exhibit pelvic pain will later go on to be diagnosed with endometriosis."
"Endometriosis isn't hard to suspect, if you actually listen to patients. Unfortunately, symptoms remain too often normalized, ignored, and dismissed - particularly among adolescents. Also, there are real differences in how this disease is treated - the earlier endometriosis is diagnosed and treated properly, the better the outcomes are for those who are struggling."
Both of these quotes are from Dr. Ken Sinervo @ The Center for Endometriosis Care's [Facebook](https://www.facebook.com/centerforendometriosiscare?mibextid=ZbWKwL)
Here is some additional info on adolescent endometriosis on their [website](https://centerforendo.com/endometriosis-in-teenagers).
Please share these resources with your mom and seek out an endometriosis specialist.
Yeah... Sadly in your situation it may require some extensive travel to get the care you need. I do see 3 in nz on an endo specialist [map](https://www.google.com/maps/d/u/0/viewer?mid=1L4Jdkbek6g7dyuLS_jA2mUfR8Yh8S-vj&ll=-39.04487652547119%2C175.13918048464768&z=6). Only 1 of them has ratings that show up from Google and it's a 3.4* though... So definitely vet anyone you consider as "lists" aren't golden.
Also, I've heard some people raving about results and pricing with Dr. Gabriel Mitroi in Romania. Even with travel they found him to be a good option (recently saw a lot of Canadians saying they were very happy they went to him).
Also, I know the specialist I'm going to, Dr. Sinervo at CEC in Atlanta gets patients from all over the world.
So... That's a bit of a loaded question. Yes, there are some great Dr's here and one renowned one recently moved his practice from Atlanta to Utah so you could seek care close to your new home when you move.
The clarification, however, most be made that everyday gynecologists that exist "in network" to insurance here are garbage. If you want excellent care, you can get it, but plan to pay out of pocket for all but maybe $500-1500 of what you're quoted as your not to exceed amount from a surgeon. So like 20k in fees you may owe like $18,500. If you're super lucky you may get insurance to cover $4k of that if they do a network gap exception/ppo waiver. In my personal experience navigating this all currently, I am finding the "self pay" (meaning I agree to not have the Dr bill my insurance and they give me a discount) is going to come out cheaper than even if the insurance was billed and paid $4k. So I'm going to self pay and then attempt to file a claim myself after the fact to see if I can get some bit of reimbursement from my insurance company (bcbs). No guarantees but I'll still be better off based on the self pay rate alone.
As for the Dr in Utah, check out [Jeff Arrington at Endo West](https://endowest.net/). He studied under Dr. Liu and then worked at the Center for Endo Care [(CEC)](https://centerforendo.com/)with Dr. Sinervo (who I'll be having surgery with in 3 weeks) in Atlanta for a period of time (I think 2018- December 2022) and Endo West opened this March based on social media posts.
Of course, disclaimer... I've never met or had surgery with Dr. Arrington. But based on his training, I would *personally* be comfortable in his care. I've heard great things from other patients as well. But as always, vet every Dr that a random on the internet recommends yourself as I can't be liable for results. 😅
Jeff Arrington is in Utah. She'll have one of the best in her backyard. He opened his new practice there (he was at CEC in Atlanta with Sinervo and trained under Liu earlier in his career) in March.
Yes, my surgery is with Dr. Sinervo 🙂 Dr. Arrington returned to his home state of Utah to open a practice earlier this year. Dr. Eugenio Colon has returned to CEC from St. Louis, so they still have a 2nd surgeon. CEC staff have all been so amazing at answering questions and making feel like they always have time for me. They really are the best!
Cannoli is my heart. She's so sweet. I always tell her she's my best fren forebbbberrrrr! 🤣
There's only a handful of Dr's in the entire 🇺🇸 that I would've entrusted for the endo side of things. I had surgery a week ago yesterday with one of them. If it were just hysterectomy I would've felt comfortable with most migs capable surgeons, but excison has proven to be elusive in the expertise of any Dr in network, which they either revealed by condescendingly saying "less than half of people with as many issues as you are satisfied after having a hysterectomy with me" (and when I asked about excision along with the hysterectomy gave weird vague responses... Or admitted altogether they wouldn't even look/address anything ureter, bladder, diaphragm, or bowel related (my current local gyn basically said she'd only excise pelvic sidewalls beyond the reproductive organs themselves). So, I went to an excision specialist and he did the hysterectomy related stuff as well as excision/lysis related...oh and appendectomy too. I'm a week post op as of yesterday and on the long trip back to Michigan from Atlanta. 10/10 would recommend Dr. Sinervo to anyone with endo along with adeno/fibroids/polyps/cysts/retroperitoneal fibrosis/fibrous obliteration of appendix etc. He handled it all in a few hours and my recovery is going much better than I anticipated thanks to his skill along with the platelet rich plasma and experel used to help with recovery.
I'm curious why they thought endometrial ablations would help for endometriosis though? That means inside the uterus. Did they do any excision or only a hysterectomy? Unfortunately, if you have endo, you'll almost certainly still need excision as well, unless all the endo was ONLY on the exterior of the uterus (rarely the case). According to my pathology I did have adhesions on the uterus but endo was found in all kinds of places elsewhere. If you're limited to in network funds, Dr. K in the Detroit area is the only one I considered here. I ultimately went to Dr. Sinervo at CEC in Atlanta. Lots of endo people in MI do love Dr. Kliethermes though and he is in the provider finder for BCBS so I think he's in network generally speaking (rare for an endo excision specialist).
Went great! Despite me being the three types to always slowly heal, I expected wayyyy more pain and issues than I had and I honestly think it's too be attributed to the surgeon's skill. It was an investment no doubt but I didn't trust any local gyn I spoke to for this. And the local one I'm going to dismissed all the pathology and the surgical pics she didn't go, "Oh hey you were right you made the right choice." She obviously didn't know how to recognize what was there and even with the appendix, she called it healthy looking when the psychology said otherwise. So 100% I recommend my surgeon, Dr. Sinervo.
Yeah it seems like there's a panel that does the video vetting. I figured the ones you mentioned are likely at least in part on that panel. Personally, I went to Sinervo because I'm kind of a do it once and do it right the first time type of person.
I'm so sorry that happened to you! Are you stopping it ASAP? No sense in additional lifelong consequences. I had excision/lysis (and other things) with Dr. Sinervo in September. I no longer need heat pads and aleve constantly. It was worth the expense and travel for sure.
I know the Colo rectal surgeon (Cici Zhang) that works with Dr. Sinervo is in network (at least for BCBS) and so is Northside Hospital. So, while you'd be dealing with travel, only the endo surgeon fees would be out of network in that case. I think Sinervo handles quite a bit alone though compared to most "Nook" doctors. I personally liked the vetting with icarebetter than Nook. As far as west coast, I think I'd go with Arrington. But, I'm not sure who he uses for colorectal when needed and it's an in network or not. I presume it's more common for colorectal to be in network than with endo surgeons. But as far as that goes, I'd expect Sinervo and Arrington can do wayyyy more solo than most other surgeons. What most "minimally invasive gyn surgeons" would say can't be done /isn't safe, they do daily. My local gyn is chief of surgery at the local hospital nearby. She's DaVinci certified and has a healthy ego. I imagine she's decent with cysts, hysterectomies, and delivering difficult babies. But when I asked about endo she basically said pelvic sidewalls only and that "no one" would touch ureters, bladder, or colon. One of my symptoms was bladder and I did have adhesions there and in left and right Para rectal spaces with endometriosis. She wouldn't have touched it. Sinervo did it with ease (I have my surgery video). She also said I had a "healthy" looking appendix and the pathology showed it was partiality obliterated. So she wouldn't have removed that either. I know I made the right choice for sure. It was worth the expense and the travel. I got an Airbnb for a week and then made the trip home. They only require 72 hours, but I was glad I gave myself extra time with a bed first. The only bad part was that my then boyfriend was there and that was the end of the relationship. He failed that test. 😅
I feel sooo much better! There's only one symptom that still plagues me occasionally; proctalgia fugax. And granted... I still haven't pursued pelvic floor physical therapy... I just can't bring myself to deal with getting up early for appointments at this time. I have a lot going on. But anyway... Had endo and adhesions removed, appendix removed, and total hysterectomy but kept ovaries. Confirmed diagnoses were endometriosis , adenomyosis, adhesions, fibroids, another polyp, and a paratubal cyst.
Being I'm not in debilitating pain 24/7, I have focused on eating a lot better and I've lost I think like 60lbs. Not any special restrictive diet either. I eat a big brunch of at k minimum a huge bowl of oatmeal (3/4c quick oats) with 3Tbsp chia seeds, and 2Tbsp of pb along with a banana to start my day. If I'm doing work outside, I'll sometimes add Greek yogurt or a hardboiled egg. And then at dinner I have something cruciferous for sure and often a bowl that involves cauliflower rice in it....but just whatever proteins and fats that sounds good... Mozzarella caprese salad, raw broccoli with hummus, peppers, Buffalo chicken cauliflower rice bowl, Greek yogurt, flat out wrap "pizza", homemade applesauce, spaghetti with zoodles for half the noodles, and things like that are some of my staples. I don't count calories on any of it. I just measure the breakfast stuff so I get a consistent mix of everything. Oh and water... I cut out pop/milk/juice and it's all water with lemon juice now. 🙂
I went to Dr. Sinervo at CEC and I'm so thankful for him and his staff! They were absolutely amazing!
I'm SO MUCH BETTER. The positive ways in which my life has changed can't be understated. Not being in constant pain crisis mode, I've been able to focus on eating really well and being able to get more done. Now, as an aside, I also started a medication for my sleep disorder that has improved sleep quality and that's made a huge difference in energy too during the day. But I've lost about 65lb so far and my bloodwork is all normal now. I had a ton of stuff that had been in the high or low ranges and getting increasingly worse over the years. To have NORMAL bloodwork is something I wouldn't think I'd get to with heredity and trajectory with how things were going. I truly feel like a new person and I'm so thankful for Dr. Sinervo. ❤️
Really my only issues now are proctalgia fugax and reynaud's. The PF could likely improve with pelvic for physical therapy but I have not desired the getting up early for appointments regularly and that would be the only way to get appointments in with my schedule. So that is on hold for the foreseeable future. No idea what the reynaud's issue is from. It actually started after surgery after I had been out on an extremely cold day. I tried to bundle up as much as I could and just clear a bit of snow so I could get my car out for an appointment, but I ended up rescheduling the appointment and waiting for my driveway to be plowed. The extreme windchills had so much wind to them that the drifting caused an area to pile up like 4'even though there was nowhere near 4' of snowfall. Anyway, it triggered reynaud's and I still have odd reactions to fingers/toes to cold and even opposite... With very hot water. But other than those 2 things I'm better all around.
I went to Dr. Sinervo which is a lot closer to you and I'd wager about half the cost of Vidali. I fully trust Sinervo and had great results. Be sure to check him out too! Very skilled surgeon and so compassionate to our suffering! Best wishes through your journey. My surgery was worth every penny. I am so thankful to not be in chronic pain and survival mode. I feel better than I ever have since age 12 when it all started.
“Surgery with Dr. Sinervo was worth every penny. I trust Dr. Sinervo wholeheartedly and I am really disappointed.”
Reported complications: major
r/r/EndoDec 2, 2020+4 pts
I traveled to the CEC for treatment. It made the most sense for me financially because I had already spent around $8000 on failed surgeries with in-network providers. I also have thoracic endo so that influenced my decision to go to the CEC as well. Ultimately, my endo was much more extensive than I thought (it was on my cervix, bowels, bladder, ureters, diaphragm, right lung, uterosacral ligaments and my pouch of Douglas was obliterated) but Dr. Sinervo and Dr. Arrington were able to remove all my endo in a single surgery. They said the recurrence rate is 5-10%. It was worth every penny and I acknowledge that I am extremely fortunate that I had the savings to go. My coworker also had a good experience at the CEC. You can always submit your records for a free review and see what they have to say!
Sorry for the late reply! My previous surgeries were not with a Nook doctor, and he used a combination of excision and ablation.
Did you doctor discuss the possibility of adenomyosis?
Did he excise the rectovaginal endo? Did you have to do a bowel prep?
Did the office give you a copy of the surgical notes? I didn’t know how extensive my endo was until I read the report.
I was not nervous about the bowel endo because Dr. Sinervo takes a multidisciplinary approach to treating endo. This means he will work alongside surgeons such as Dr. Macik or Dr. Gouldman to make sure all endo is removed.
The typical cost for Dr. Sinervo is $9,000-$21,-000. Though, you may pay less depending on the amount of work that needs to be done and your insurance benefits. You can also petition your insurance company to treat the CEC as if it were an in-network facility. I think there are resources available on Nancy’s Nook.
I hope you get better soon!
I had combined VATS/laparoscopy at the CEC in Dec 2020 with Dr. Sinervo and Dr. Gouldman. I was offered a surgery date within 3-4 weeks but it may be a longer wait now.
I previously had an extensive surgery (i.e., bowel, diaphragm, bladder, etc.) with the CEC in Dec 2019 and was in the hospital for only 3 days. This last surgery I was in Northside for 2 weeks due to complications and had to go back a few weeks later for chest tube removal. I also planned to stay in Atlanta for 7 days after both surgeries but it may be a good idea to budget/plan for a longer stay if Dr. Sinervo is expecting to perform a possible bowel resection and VATS. It may also be a good idea to look for accommodation where your caregiver can easily extend their stay if you are not discharged from the hospital within the expected time frame (I regret not doing this. My family had to move from one Airbnb to another and it added more stress to an already stressful experience).
The nurses got me up and walking within a few hours after getting back to my room from the PACU. If you’re having a cystoscopy then expect to have a catheter for at least 24 hours after surgery. If you’re having VATS then expect to have a chest tube for at least 24-48 hours until your lung is fully inflated.
Provera may work for you - you won’t know unless you try it! And you can always stop taking the pills if the side effects are too much. Though, it is always a good idea to have a conversation with your doctor before starting so they can recommend the correct dose and write a new prescription.
I had a combined laparoscopy/VATS so I didn’t have immediate relief due to the chest tube they placed during surgery. It took a few weeks before I noticed an improvement. As long as all diaphragmatic endo is completely excised from both sides of the diaphragm and not ablated then additional surgeries should not be required. However, there is a small percentage of patients who will continue to have symptoms even after having a proper excision and my doctor cannot explain why (and he has treated hundreds of thoracic patients over the years).
The Center for Endometriosis (CEC) website also has a lot of information on thoracic/diaphragm endo. I think Dr. Sinervo wrote a paper last year on patient outcomes after surgery.
I had the same concern so I traveled to Atlanta for an in-person consult. I know it’s not an option for everyone, but it did put my mind at ease actually meeting with Dr. Sinervo before my first surgery.
Maybe it would help to talk through the treatment plan again? I think you can schedule online consults nowadays. I know I had a difficult time absorbing all the info thrown at me during the initial phone call.
Dr. Sinervo removed all my pelvic and diaphragm endo during the first surgery. The only reason I went back for a second surgery was to remove the endo on my other lung and get a PSN for the adenomyosis-related pain. I also needed to have adhesions on my bowels/ovaries lysed.
Surgery with Dr. Sinervo was worth every penny. And I’ll be going back when I’m ready for a hysterectomy.
I hope everything works out for you!
I had two surgeries with Dr. Sinervo. I have suspected adenomyosis as well and a hysterectomy was offered to me as a treatment option, but I ultimately decided to opt for a PSN.
You can always send your records to the CEC for a free case review and see if the treatment plan he recommends is right for you.
Good luck!
I have Anthem BCBS (POS). Northside billed my insurance around $90K for my first surgery but the hospital and anesthesiologist was considered in-network so I only had to pay my deductible. I ended up paying over $10K for Dr. Sinervo’s portion of the surgery.
Have you had a consult with the CEC? I think you can call Northside and ask them how much they expect your surgery to cost
It could be scar tissue. I had my first surgery with Dr. Sinervo in December 2019 and noticed that my original symptoms were returning by July 2020. I went back to the CEC for my second surgery in December 2020 and he removed a significant amount of adhesions, which were tethering my uterus and ovaries to my small intestine. He said that some people, especially those who had an extensive excision surgery previously, are more prone to forming adhesions.
Have you had an ultrasound to see if your right ovary is mobile and free of cysts?
Dr. Sinervo is very good at what he does, but even he cannot guarantee that your endo will not return after surgery. The CEC offers free case reviews so Dr. Sinervo would be able to address your questions/concerns during the initial phone consult. He was incredibly thorough during my phone consult; I think I talked to him for over 30 minutes (and it was after 10 pm when he called!). While it is true that he might recommend birth control post-op, he definitely doesn’t push it on his patients since my friend also wanted to TTC as soon as possible following excision and did not take anything
I’m sorry that you’re in this position. You’re right that it is not an easy decision to make. To the best of my knowledge, pregnancy does not decrease the likelihood of disease reoccurrence.
I ultimately had to undergo two excision surgeries with Dr. Sinervo (2019 & 2020). I fortunately did not have a reoccurrence after my first surgery, rather a lot of adhesions that had to be removed since the first lap was fairly extensive. I did not have to pay a significant amount for the second operation at the CEC either; I believe I only had to paid my insurance deductible. I’m not sure if that helps at all
I have had multiple VATs procedures for recurrent lung collapses due to thoracic/diaphragmatic endo. Two of these procedures were performed with Dr. Sinervo (CEC) and Dr. Gouldman (his thoracic surgery partner at Northside).
Treatment of thoracic/diaphragmatic endo would not typically require a cut to the sternum similar to open heart surgery (Dr. Gouldman doesn’t even do this procedure as he specializes in minimally invasive surgery…). Most cases of thoracic endo are treated via VATs, which involves ~3 small incisions along the rib cage (one for the camera and the other two for instruments). Only in extreme cases would they need to convert to open surgery, and even open surgery would not result in a sternotomy but rather a ~6 inch incision below your shoulder blade.
Do you know why they did not offer VATs for your lung collapses in 2020? Were any of your collapses treated with chest tubes? Did you have any imaging completed (MRI, CT scan) to check for blebs or other conditions such as LAM that can contribute to the symptoms you’re currently experiencing? Have you seen a pulmonary geneticist who can rule out genetic causes of your chest pain such as Marfan syndrome, EDS, BHD, alpha-1 antitrypsin deficiency, etc.?
I would not recommend VATs unless you have exhausted all of your options. Surgeons do a really crappy job of explaining the potential complications and long-term consequences of VATs procedures.
I agree that the the billing practices of most private endo clinics are shady. I also have really good insurance and Seckin’s office still wanted $20K upfront for the surgery.
I ultimately went to the CEC because I have thoracic endo. The surgery deposit was still a lot of money don’t get me wrong, but it was more reasonable than going to Dr. Seckin. Dr. Sinervo also has considerably more experience.
Have you looked into Dr. Vidali or Dr. Lora Liu? There are a few other endo doctors in NY that have been mentioned on this sub too.
Is the hospital considered in-network with your insurance company? If so, then you will be responsible for your in-network deductible and any coinsurance up to your out-of-pocket maximum.
Also, your insurance company may still pay for a portion of Dr. Vidali’s services even though he is considered out-of-network. They just pay each code at the out-of-network rate, which could be nothing or a significant amount. I had surgery with the CEC and my insurance plans paid Dr. Sinervo several thousand dollars despite him being out-of-network.
Dr. Sinervo and Dr. Gouldman are considered one of the best teams in the world for treatment of thoracic/diaphragmatic endo. That is one of the main reasons why I chose the CEC over Dr. Seckin. However, the nurses on the thoracic floor at Northside were mediocre at best; I had to stay for a few weeks after complications from VATS and pain management was non-existent. They also failed to realize that my chest tube was clogged until I built up 1 liter of fluid in my chest. Thus, if you decide to have VATS, be sure to read up on all of the potential complications and expect that you will need to advocate for yourself at some point.
The CEC offers a free records review and Dr. Sinervo will personally call you to discuss your treatment options. If you decide to go ahead with the surgery, then they will send you a detailed contract with the out-of-pocket maximum. The CEC will submit a claim to your insurance on your behalf and file an initial appeal.
It will depend entirely on your insurance. I luckily had two insurance plans at the time of surgery, and my out-of-network deductible for my primary insurance was $300 with a $2,000 out-of-pocket maximum. Northside was in-network with my primary insurance so those bills were covered 100% with no deductible. Even with great insurance I still ended up paying the CEC over $10K. I submitted appeals to both my insurance companies and they paid the CEC an additional $6K at least.
Yes, the combined VATS/lap alleviated some of my symptoms. My pain is at least manageable now and Dr. Sinervo has continued to work with me to create a treatment plan for the issues that cannot be fixed by excision surgery (i.e., adenomyosis, interstitial cystitis, recurrent lung collapses, etc.). I’m glad that he did not abandon me as a patient and brush me off to pain management when I returned to him a year later with similar symptoms.
I hope this helps!
I could not find any endometriosis specialists to treat my thoracic/diaphragm endo in CT. There are no highly skilled endo surgeons with multidisciplinary teams in the state. It’s really important that your surgeon knows how to properly mobilize the liver to fully evaluate the left side of the diaphragm. They should also work alongside a thoracic surgeon so both the abdominal and thoracic side of the diaphragm is evaluated for lesions. The other concern is that most unskilled surgeons will place a mesh to “fix” fenestrations of the diaphragm; however, the proper technique is to fully excise any lesions then suture the diaphragm. This is most effective in preventing recurrence and lung collapses.
I have a family friend who works in the OR for OBGYNs at UConn Health as a first assist and the only endo surgeons she recommends are the Luciano’s, but even they do not treat diaphragm endo and use ablation rather than excision.
I personally traveled to the CEC because Dr. Sinervo and Dr. Gouldman are a world-renowned team for treating thoracic endo (I had BCBS and you can check my post history for my out-of-pocket costs). I’ve heard good things about Dr. Kip McKenzie, Dr. Martin Robbins (Maine) and Dr. Vidali if you’re looking to stay in the New England area. Dr. Nicholas Fogelson (Oregon) and Dr. Jeff Arrington (Utah) are on the west coast but also very experienced in this type of endo.
Good luck!
You’re right that the outcome of a PSN can vary significantly between patients. For some patients the PSN permanently eliminates their pain, others for a few years and for some it has no effect. Only you know if the risks outweigh the potential benefit of being pain-free for several years.
There is a 5-10% chance of experiencing complications (https://centerforendo.com/presacral-neurectomy), but they are generally not severe for most patients and can lessen over time. I personally noticed a gradual return of the IBS-like and interstitial cystitis symptoms within 1.5 years after the PSN, so the effects were not permanent for me. The incidence of complications also decreases with the skill of the surgeon.
I completely understand your hesitation regarding a hysterectomy; I also wanted to exhaust all treatment options before going that route. It’s not an easy decision to be faced with at such a young age. I’m still torn about getting the hysterectomy even though my uterus is the primary source of my chronic pain; I have no idea why I’m so attached to it.
I would definitely reach out to Dr. Sinervo and discuss any hesitations that you have regarding the PSN vs a hysterectomy. I usually send an email to his personal account (the one he used to contact you for the initial consult) whenever I have a change in symptoms or a question and he gets back to me right away; it’s a lot easier than going through the office staff. Feel free to DM me if you need his email address.
I went to Dr. Sinervo, but I’ve heard good things about Dr. Fogelson and he seems to be skilled in excising diaphragmatic endo.
It sounds like you are very committed to having VATS and it is great that you are strongly advocating for yourself. However, I highly recommend reading about others’ experience regarding exploratory VATS for endo prior to your surgery. The ExtraPelvic Not Rare Facebook group has a lot of useful information. Hopefully you have been able to rule out other conditions that can mimic thoracic endo, especially if you are not experiencing lung collapses, hemoptysis or diaphragmatic fenestrations that are visible on imaging.
There has been a big push in the endo community lately for exploratory VATS, and many patients are not given all of the facts regarding the statistics of actually finding endometriosis and the long term consequences of the VATS procedure. I personally have chronic pain from multiple VATS procedures and chest tubes, and it has significantly impacted my quality of life. There are a lot of other patients who have had similar experiences as mine and many endo specialists neglect to tell prospective patients about the risks of such a major surgery. I know that Dr. Sinervo and Dr. Gouldman have changed their criteria for selecting patients for VATS after realizing that the risk of surgery does not always outweigh the benefit of a potential diagnosis (I was in the hospital for 2.5 weeks post-VATS and had a chest tube for an additional 2 weeks at home).
Good luck.
Yes, this was the quote with really good out-of-network insurance (no deductible or out-of-pocket max). I still paid over $10,000 to the CEC for surgery #1 despite my insurance paying out very well on each claim.
I no longer have this health insurance and need to go in for surgery #3, and I was quoted $10-14,500 as a self-pay patient. Based on other people I have talked to, this self-pay estimate seems to be standard for all patients who do not have insurance (i.e., the estimate is not determined on a case-by-case basis as the office staff claims). They do offer financial assistance, but you will need to provide proof of all income, assets and expenses (even retirement savings!), proof of Medicare/Medicaid enrollment, etc. in order to qualify. I cannot give the CEC another $10,000 deposit for surgery, so I’ve started looking for other endo specialists.
I am currently dealing with worsening adenomyosis and adhesions; my endo was completely excised during my first surgery and none was found during surgery #2. I trust Dr. Sinervo wholeheartedly and I am really disappointed that I have to find a new surgeon, but I guess that’s life — everyone wants to make money off of desperate patients.
I am in the US. I had surgery with Dr. Sinervo of the Center for Endometriosis Care in Atlanta and Dr. Gouldman (Northside Hospital) is my thoracic surgeon.
I was recently quoted 10-15k at the CEC for a simple hysterectomy with lysis of adhesions. This would have been my 3rd surgery with Dr. Sinervo, which means I have already paid over $20k to his office. I do not doubt his surgical skills, but I will not be recommending his office anymore to my family and friends. My latest experience with his office staff really opened my eyes to how they are taking advantage of endo patients.
The Sinervo’s do not run any Facebook group. They do comment when patients ask questions, but the do not control the narrative. The ExtraPelvic NotRare group was founded by Wendy Bingham, a DPT that has dedicated a significant amount of time to develop educational resources on all types of endometriosis. The other Facebook group was founded by Donna, whose daughter has suffered from thoracic endo for decades.
Also, I was treated by Dr. Sinervo. He and Dr. Gouldman are very conservative on who they will accept as VATS patients. They do not push VATS surgery; this is factually incorrect. Dr. Gouldman actually tried to talk me out of having VATS and regretted performing my second surgery. This team of doctors is currently managing my thoracic endo with hormonal suppression, so it is also incorrect to say they only push surgery and do not believe in using hormones to control symptoms.
I was not going to engage, but I do want to respond to your edit. Studies have shown that the most effective treatment for diaphragm and thoracic endo is VATS combined with hormonal therapy. Here are two papers that may be helpful in understanding why surgeons such as Dr. Sinervo recommend repeat VATS:
https://www.atsjournals.org/doi/10.1164/rccm.200704-587OC?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmedhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4154426/
Many people are active in the Facebook group because previous VATS combined with hormonal therapy has not been enough. In most cases, they continue to have lung collapses because their previous surgeon did not fix diaphragmatic fenestrations, remove endometrial implants from the diaphragm and/or lung pleura or perform the proper type of pleurodesis. Thus, most surgeons perform repeat VATS with the intention of removing all visible endometriosis and performing talc pleurodesis since the rate of recurring pneumothorax is much lower.
I agree that it is unprofessional for Dr. Sinervo to make treatment recommendations on Facebook. I also agree that repeat VATS surgery should be an absolute last resort given the risks of long-term pain and the fact that hormones may be enough for some patients. However, most thoracic patients go to the CEC or specialized clinics because other treatment modalities (either surgical, hormonal or both) have failed and their local doctors are not familiar with the condition. That is how I ended up in Atlanta.
I can confirm that Dr. Sinervo explains all of the data behind repeating VATS during the initial consultation. He was spewing statistics from case studies and his own practice when I was deciding whether I wanted to pursue additional surgery. I understand your frustration that he is recommending repeat surgery on Facebook without giving data to back up his claims. Dr. Gouldman also makes sure that his patients understand the data behind thoracic endo before performing repeat VATS.
I am being treated by Dr. Sinervo personally; not another doctor in his practice. He said that at least 10% of his thoracic endo patients continue to have collapses and he does not understand why (most likely due to fluctuations of prostaglandins during our cycle). In our cases, he recommends hormonal suppression and it is up to the patient whether they want to take continuous birth control. He even prescribes lupron if it is in the best interest of the patient! He may come across as anti-hormone, but that is far from the truth; hormone management is a big part of his practice.
You were incredibly lucky to have a team familiar with thoracic endo during your first VATS that could excise lesions. Most of us in the Facebook group were not that fortunate.
I do apologize for my deleted post. The general thoracic/lung Facebook group is not a good resource; it is primarily run by a mother whose daughter was treated by Dr. Sinervo - that is why you see such a strong push for the CEC. I had a better experience in the ExtraPelvic NotRare group, but it is possible that it has also been taken over by the “excision is best” groupies - it was not that way when I was active a few years ago. It was more of a support group with patients even sharing their failed VATS surgeries at the CEC and asking for recommendations on how to stop the lung collapses - that is why I joined.
Sorry again. You might want to consider establishing a new thoracic endo Facebook group that has not been infiltrated by CEC groupies.
Good luck.
I was referring to ExtraPelvic Not Rare. I do not believe that Nancy’s Nook is a registered non-profit.
The CEC has never stated that patients will be cured after excision surgery and I know that Dr. Sinervo uses hormonal suppression to manage symptoms post-op. He never promises patients that they will not need hormonal treatment post-op.
No, I do not work for Dr. Sinervo. I honestly would not even recommend the CEC to anyone based on my experience with an issue unrelated to thoracic endo. Limited research has been conducted on thoracic endo and patient outcomes vary widely. It is difficult to develop a standardized treatment for a disease that is so poorly understood. Treatment, for some of us, is just not as simple as “here, take this hormone for the rest of your life and you will be pneumothorax-free.” Hormones work on a case-by-case basis - what works for one patient, may not work for the next and it could have potentially deadly consequences.
I am glad mechanical pleurodesis worked for you. Again, everyone’s mileage varies. Mechanical pleurodesis failed on both of my lungs, which is not necessarily uncommon among thoracic endo patients and the general pneumothorax community. Please do not forget that there are many of us that deal with tension pneumothoraces. Thus, some of us do not have an option but to receive chemical pleurodesis after a failed pleural abrasion. We should not be shamed for a treatment that we had no control over. It was a last resort for me - my lung would not re-inflate after two weeks with multiple chest drains and multiple rounds of blood patches and betadine.
I am also glad that you didn’t need a wedge resection. Again, it’s highly dependent upon the patient. Some of us do not have an option because we have blebs that can no longer heal when they rupture and need to be removed in order to prevent a persistent air leak and increase the odds of a successful pleurodesis.
Nevertheless, it’s great that you are in the community and can advocate for repeat VATS as a last resort. Not all doctors practice informed consent and often fail to recommend alternatives to surgery. I wouldn’t wish a VATS procedure, wedge resection or pleurodesis on anyone. Or pigtail catheters…those really suck.
“Two surgeries completed successfully. First surgery removed all pelvic and diaphragm endo. Second surgery removed adhesions tethering uterus/ovaries to small intestine plus lung endo. Endo fully excised; no recurrence found at surgery 2. PSN provided temporary relief (~1.5 years) before IBS-like and IC symptoms returned. Patient reports pain is manageable post-treatment. Later very dissatisfied with office billing practices; would not recommend the CEC to family/friends based on billing experien”
Reported complications: 2-week hospital stay after VATS, clogged chest tube with 1 liter fluid buildup, chronic pain from VATS procedures
r/r/EndoDec 2, 2020+4 pts
I traveled to the CEC for treatment. It made the most sense for me financially because I had already spent around $8000 on failed surgeries with in-network providers. I also have thoracic endo so that influenced my decision to go to the CEC as well. Ultimately, my endo was much more extensive than I thought (it was on my cervix, bowels, bladder, ureters, diaphragm, right lung, uterosacral ligaments and my pouch of Douglas was obliterated) but Dr. Sinervo and Dr. Arrington were able to remove all my endo in a single surgery. They said the recurrence rate is 5-10%. It was worth every penny and I acknowledge that I am extremely fortunate that I had the savings to go. My coworker also had a good experience at the CEC. You can always submit your records for a free review and see what they have to say!
Sorry for the late reply! My previous surgeries were not with a Nook doctor, and he used a combination of excision and ablation.
Did you doctor discuss the possibility of adenomyosis?
Did he excise the rectovaginal endo? Did you have to do a bowel prep?
Did the office give you a copy of the surgical notes? I didn’t know how extensive my endo was until I read the report.
I was not nervous about the bowel endo because Dr. Sinervo takes a multidisciplinary approach to treating endo. This means he will work alongside surgeons such as Dr. Macik or Dr. Gouldman to make sure all endo is removed.
The typical cost for Dr. Sinervo is $9,000-$21,-000. Though, you may pay less depending on the amount of work that needs to be done and your insurance benefits. You can also petition your insurance company to treat the CEC as if it were an in-network facility. I think there are resources available on Nancy’s Nook.
I hope you get better soon!
I had combined VATS/laparoscopy at the CEC in Dec 2020 with Dr. Sinervo and Dr. Gouldman. I was offered a surgery date within 3-4 weeks but it may be a longer wait now.
I previously had an extensive surgery (i.e., bowel, diaphragm, bladder, etc.) with the CEC in Dec 2019 and was in the hospital for only 3 days. This last surgery I was in Northside for 2 weeks due to complications and had to go back a few weeks later for chest tube removal. I also planned to stay in Atlanta for 7 days after both surgeries but it may be a good idea to budget/plan for a longer stay if Dr. Sinervo is expecting to perform a possible bowel resection and VATS. It may also be a good idea to look for accommodation where your caregiver can easily extend their stay if you are not discharged from the hospital within the expected time frame (I regret not doing this. My family had to move from one Airbnb to another and it added more stress to an already stressful experience).
The nurses got me up and walking within a few hours after getting back to my room from the PACU. If you’re having a cystoscopy then expect to have a catheter for at least 24 hours after surgery. If you’re having VATS then expect to have a chest tube for at least 24-48 hours until your lung is fully inflated.
Provera may work for you - you won’t know unless you try it! And you can always stop taking the pills if the side effects are too much. Though, it is always a good idea to have a conversation with your doctor before starting so they can recommend the correct dose and write a new prescription.
I had a combined laparoscopy/VATS so I didn’t have immediate relief due to the chest tube they placed during surgery. It took a few weeks before I noticed an improvement. As long as all diaphragmatic endo is completely excised from both sides of the diaphragm and not ablated then additional surgeries should not be required. However, there is a small percentage of patients who will continue to have symptoms even after having a proper excision and my doctor cannot explain why (and he has treated hundreds of thoracic patients over the years).
The Center for Endometriosis (CEC) website also has a lot of information on thoracic/diaphragm endo. I think Dr. Sinervo wrote a paper last year on patient outcomes after surgery.
I had the same concern so I traveled to Atlanta for an in-person consult. I know it’s not an option for everyone, but it did put my mind at ease actually meeting with Dr. Sinervo before my first surgery.
Maybe it would help to talk through the treatment plan again? I think you can schedule online consults nowadays. I know I had a difficult time absorbing all the info thrown at me during the initial phone call.
Dr. Sinervo removed all my pelvic and diaphragm endo during the first surgery. The only reason I went back for a second surgery was to remove the endo on my other lung and get a PSN for the adenomyosis-related pain. I also needed to have adhesions on my bowels/ovaries lysed.
Surgery with Dr. Sinervo was worth every penny. And I’ll be going back when I’m ready for a hysterectomy.
I hope everything works out for you!
I had two surgeries with Dr. Sinervo. I have suspected adenomyosis as well and a hysterectomy was offered to me as a treatment option, but I ultimately decided to opt for a PSN.
You can always send your records to the CEC for a free case review and see if the treatment plan he recommends is right for you.
Good luck!
I have Anthem BCBS (POS). Northside billed my insurance around $90K for my first surgery but the hospital and anesthesiologist was considered in-network so I only had to pay my deductible. I ended up paying over $10K for Dr. Sinervo’s portion of the surgery.
Have you had a consult with the CEC? I think you can call Northside and ask them how much they expect your surgery to cost
It could be scar tissue. I had my first surgery with Dr. Sinervo in December 2019 and noticed that my original symptoms were returning by July 2020. I went back to the CEC for my second surgery in December 2020 and he removed a significant amount of adhesions, which were tethering my uterus and ovaries to my small intestine. He said that some people, especially those who had an extensive excision surgery previously, are more prone to forming adhesions.
Have you had an ultrasound to see if your right ovary is mobile and free of cysts?
Dr. Sinervo is very good at what he does, but even he cannot guarantee that your endo will not return after surgery. The CEC offers free case reviews so Dr. Sinervo would be able to address your questions/concerns during the initial phone consult. He was incredibly thorough during my phone consult; I think I talked to him for over 30 minutes (and it was after 10 pm when he called!). While it is true that he might recommend birth control post-op, he definitely doesn’t push it on his patients since my friend also wanted to TTC as soon as possible following excision and did not take anything
I’m sorry that you’re in this position. You’re right that it is not an easy decision to make. To the best of my knowledge, pregnancy does not decrease the likelihood of disease reoccurrence.
I ultimately had to undergo two excision surgeries with Dr. Sinervo (2019 & 2020). I fortunately did not have a reoccurrence after my first surgery, rather a lot of adhesions that had to be removed since the first lap was fairly extensive. I did not have to pay a significant amount for the second operation at the CEC either; I believe I only had to paid my insurance deductible. I’m not sure if that helps at all
I have had multiple VATs procedures for recurrent lung collapses due to thoracic/diaphragmatic endo. Two of these procedures were performed with Dr. Sinervo (CEC) and Dr. Gouldman (his thoracic surgery partner at Northside).
Treatment of thoracic/diaphragmatic endo would not typically require a cut to the sternum similar to open heart surgery (Dr. Gouldman doesn’t even do this procedure as he specializes in minimally invasive surgery…). Most cases of thoracic endo are treated via VATs, which involves ~3 small incisions along the rib cage (one for the camera and the other two for instruments). Only in extreme cases would they need to convert to open surgery, and even open surgery would not result in a sternotomy but rather a ~6 inch incision below your shoulder blade.
Do you know why they did not offer VATs for your lung collapses in 2020? Were any of your collapses treated with chest tubes? Did you have any imaging completed (MRI, CT scan) to check for blebs or other conditions such as LAM that can contribute to the symptoms you’re currently experiencing? Have you seen a pulmonary geneticist who can rule out genetic causes of your chest pain such as Marfan syndrome, EDS, BHD, alpha-1 antitrypsin deficiency, etc.?
I would not recommend VATs unless you have exhausted all of your options. Surgeons do a really crappy job of explaining the potential complications and long-term consequences of VATs procedures.
I agree that the the billing practices of most private endo clinics are shady. I also have really good insurance and Seckin’s office still wanted $20K upfront for the surgery.
I ultimately went to the CEC because I have thoracic endo. The surgery deposit was still a lot of money don’t get me wrong, but it was more reasonable than going to Dr. Seckin. Dr. Sinervo also has considerably more experience.
Have you looked into Dr. Vidali or Dr. Lora Liu? There are a few other endo doctors in NY that have been mentioned on this sub too.
Is the hospital considered in-network with your insurance company? If so, then you will be responsible for your in-network deductible and any coinsurance up to your out-of-pocket maximum.
Also, your insurance company may still pay for a portion of Dr. Vidali’s services even though he is considered out-of-network. They just pay each code at the out-of-network rate, which could be nothing or a significant amount. I had surgery with the CEC and my insurance plans paid Dr. Sinervo several thousand dollars despite him being out-of-network.
Dr. Sinervo and Dr. Gouldman are considered one of the best teams in the world for treatment of thoracic/diaphragmatic endo. That is one of the main reasons why I chose the CEC over Dr. Seckin. However, the nurses on the thoracic floor at Northside were mediocre at best; I had to stay for a few weeks after complications from VATS and pain management was non-existent. They also failed to realize that my chest tube was clogged until I built up 1 liter of fluid in my chest. Thus, if you decide to have VATS, be sure to read up on all of the potential complications and expect that you will need to advocate for yourself at some point.
The CEC offers a free records review and Dr. Sinervo will personally call you to discuss your treatment options. If you decide to go ahead with the surgery, then they will send you a detailed contract with the out-of-pocket maximum. The CEC will submit a claim to your insurance on your behalf and file an initial appeal.
It will depend entirely on your insurance. I luckily had two insurance plans at the time of surgery, and my out-of-network deductible for my primary insurance was $300 with a $2,000 out-of-pocket maximum. Northside was in-network with my primary insurance so those bills were covered 100% with no deductible. Even with great insurance I still ended up paying the CEC over $10K. I submitted appeals to both my insurance companies and they paid the CEC an additional $6K at least.
Yes, the combined VATS/lap alleviated some of my symptoms. My pain is at least manageable now and Dr. Sinervo has continued to work with me to create a treatment plan for the issues that cannot be fixed by excision surgery (i.e., adenomyosis, interstitial cystitis, recurrent lung collapses, etc.). I’m glad that he did not abandon me as a patient and brush me off to pain management when I returned to him a year later with similar symptoms.
I hope this helps!
I could not find any endometriosis specialists to treat my thoracic/diaphragm endo in CT. There are no highly skilled endo surgeons with multidisciplinary teams in the state. It’s really important that your surgeon knows how to properly mobilize the liver to fully evaluate the left side of the diaphragm. They should also work alongside a thoracic surgeon so both the abdominal and thoracic side of the diaphragm is evaluated for lesions. The other concern is that most unskilled surgeons will place a mesh to “fix” fenestrations of the diaphragm; however, the proper technique is to fully excise any lesions then suture the diaphragm. This is most effective in preventing recurrence and lung collapses.
I have a family friend who works in the OR for OBGYNs at UConn Health as a first assist and the only endo surgeons she recommends are the Luciano’s, but even they do not treat diaphragm endo and use ablation rather than excision.
I personally traveled to the CEC because Dr. Sinervo and Dr. Gouldman are a world-renowned team for treating thoracic endo (I had BCBS and you can check my post history for my out-of-pocket costs). I’ve heard good things about Dr. Kip McKenzie, Dr. Martin Robbins (Maine) and Dr. Vidali if you’re looking to stay in the New England area. Dr. Nicholas Fogelson (Oregon) and Dr. Jeff Arrington (Utah) are on the west coast but also very experienced in this type of endo.
Good luck!
You’re right that the outcome of a PSN can vary significantly between patients. For some patients the PSN permanently eliminates their pain, others for a few years and for some it has no effect. Only you know if the risks outweigh the potential benefit of being pain-free for several years.
There is a 5-10% chance of experiencing complications (https://centerforendo.com/presacral-neurectomy), but they are generally not severe for most patients and can lessen over time. I personally noticed a gradual return of the IBS-like and interstitial cystitis symptoms within 1.5 years after the PSN, so the effects were not permanent for me. The incidence of complications also decreases with the skill of the surgeon.
I completely understand your hesitation regarding a hysterectomy; I also wanted to exhaust all treatment options before going that route. It’s not an easy decision to be faced with at such a young age. I’m still torn about getting the hysterectomy even though my uterus is the primary source of my chronic pain; I have no idea why I’m so attached to it.
I would definitely reach out to Dr. Sinervo and discuss any hesitations that you have regarding the PSN vs a hysterectomy. I usually send an email to his personal account (the one he used to contact you for the initial consult) whenever I have a change in symptoms or a question and he gets back to me right away; it’s a lot easier than going through the office staff. Feel free to DM me if you need his email address.
I went to Dr. Sinervo, but I’ve heard good things about Dr. Fogelson and he seems to be skilled in excising diaphragmatic endo.
It sounds like you are very committed to having VATS and it is great that you are strongly advocating for yourself. However, I highly recommend reading about others’ experience regarding exploratory VATS for endo prior to your surgery. The ExtraPelvic Not Rare Facebook group has a lot of useful information. Hopefully you have been able to rule out other conditions that can mimic thoracic endo, especially if you are not experiencing lung collapses, hemoptysis or diaphragmatic fenestrations that are visible on imaging.
There has been a big push in the endo community lately for exploratory VATS, and many patients are not given all of the facts regarding the statistics of actually finding endometriosis and the long term consequences of the VATS procedure. I personally have chronic pain from multiple VATS procedures and chest tubes, and it has significantly impacted my quality of life. There are a lot of other patients who have had similar experiences as mine and many endo specialists neglect to tell prospective patients about the risks of such a major surgery. I know that Dr. Sinervo and Dr. Gouldman have changed their criteria for selecting patients for VATS after realizing that the risk of surgery does not always outweigh the benefit of a potential diagnosis (I was in the hospital for 2.5 weeks post-VATS and had a chest tube for an additional 2 weeks at home).
Good luck.
Yes, this was the quote with really good out-of-network insurance (no deductible or out-of-pocket max). I still paid over $10,000 to the CEC for surgery #1 despite my insurance paying out very well on each claim.
I no longer have this health insurance and need to go in for surgery #3, and I was quoted $10-14,500 as a self-pay patient. Based on other people I have talked to, this self-pay estimate seems to be standard for all patients who do not have insurance (i.e., the estimate is not determined on a case-by-case basis as the office staff claims). They do offer financial assistance, but you will need to provide proof of all income, assets and expenses (even retirement savings!), proof of Medicare/Medicaid enrollment, etc. in order to qualify. I cannot give the CEC another $10,000 deposit for surgery, so I’ve started looking for other endo specialists.
I am currently dealing with worsening adenomyosis and adhesions; my endo was completely excised during my first surgery and none was found during surgery #2. I trust Dr. Sinervo wholeheartedly and I am really disappointed that I have to find a new surgeon, but I guess that’s life — everyone wants to make money off of desperate patients.
I am in the US. I had surgery with Dr. Sinervo of the Center for Endometriosis Care in Atlanta and Dr. Gouldman (Northside Hospital) is my thoracic surgeon.
I was recently quoted 10-15k at the CEC for a simple hysterectomy with lysis of adhesions. This would have been my 3rd surgery with Dr. Sinervo, which means I have already paid over $20k to his office. I do not doubt his surgical skills, but I will not be recommending his office anymore to my family and friends. My latest experience with his office staff really opened my eyes to how they are taking advantage of endo patients.
The Sinervo’s do not run any Facebook group. They do comment when patients ask questions, but the do not control the narrative. The ExtraPelvic NotRare group was founded by Wendy Bingham, a DPT that has dedicated a significant amount of time to develop educational resources on all types of endometriosis. The other Facebook group was founded by Donna, whose daughter has suffered from thoracic endo for decades.
Also, I was treated by Dr. Sinervo. He and Dr. Gouldman are very conservative on who they will accept as VATS patients. They do not push VATS surgery; this is factually incorrect. Dr. Gouldman actually tried to talk me out of having VATS and regretted performing my second surgery. This team of doctors is currently managing my thoracic endo with hormonal suppression, so it is also incorrect to say they only push surgery and do not believe in using hormones to control symptoms.
I was not going to engage, but I do want to respond to your edit. Studies have shown that the most effective treatment for diaphragm and thoracic endo is VATS combined with hormonal therapy. Here are two papers that may be helpful in understanding why surgeons such as Dr. Sinervo recommend repeat VATS:
https://www.atsjournals.org/doi/10.1164/rccm.200704-587OC?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmedhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4154426/
Many people are active in the Facebook group because previous VATS combined with hormonal therapy has not been enough. In most cases, they continue to have lung collapses because their previous surgeon did not fix diaphragmatic fenestrations, remove endometrial implants from the diaphragm and/or lung pleura or perform the proper type of pleurodesis. Thus, most surgeons perform repeat VATS with the intention of removing all visible endometriosis and performing talc pleurodesis since the rate of recurring pneumothorax is much lower.
I agree that it is unprofessional for Dr. Sinervo to make treatment recommendations on Facebook. I also agree that repeat VATS surgery should be an absolute last resort given the risks of long-term pain and the fact that hormones may be enough for some patients. However, most thoracic patients go to the CEC or specialized clinics because other treatment modalities (either surgical, hormonal or both) have failed and their local doctors are not familiar with the condition. That is how I ended up in Atlanta.
I can confirm that Dr. Sinervo explains all of the data behind repeating VATS during the initial consultation. He was spewing statistics from case studies and his own practice when I was deciding whether I wanted to pursue additional surgery. I understand your frustration that he is recommending repeat surgery on Facebook without giving data to back up his claims. Dr. Gouldman also makes sure that his patients understand the data behind thoracic endo before performing repeat VATS.
I am being treated by Dr. Sinervo personally; not another doctor in his practice. He said that at least 10% of his thoracic endo patients continue to have collapses and he does not understand why (most likely due to fluctuations of prostaglandins during our cycle). In our cases, he recommends hormonal suppression and it is up to the patient whether they want to take continuous birth control. He even prescribes lupron if it is in the best interest of the patient! He may come across as anti-hormone, but that is far from the truth; hormone management is a big part of his practice.
You were incredibly lucky to have a team familiar with thoracic endo during your first VATS that could excise lesions. Most of us in the Facebook group were not that fortunate.
I do apologize for my deleted post. The general thoracic/lung Facebook group is not a good resource; it is primarily run by a mother whose daughter was treated by Dr. Sinervo - that is why you see such a strong push for the CEC. I had a better experience in the ExtraPelvic NotRare group, but it is possible that it has also been taken over by the “excision is best” groupies - it was not that way when I was active a few years ago. It was more of a support group with patients even sharing their failed VATS surgeries at the CEC and asking for recommendations on how to stop the lung collapses - that is why I joined.
Sorry again. You might want to consider establishing a new thoracic endo Facebook group that has not been infiltrated by CEC groupies.
Good luck.
I was referring to ExtraPelvic Not Rare. I do not believe that Nancy’s Nook is a registered non-profit.
The CEC has never stated that patients will be cured after excision surgery and I know that Dr. Sinervo uses hormonal suppression to manage symptoms post-op. He never promises patients that they will not need hormonal treatment post-op.
No, I do not work for Dr. Sinervo. I honestly would not even recommend the CEC to anyone based on my experience with an issue unrelated to thoracic endo. Limited research has been conducted on thoracic endo and patient outcomes vary widely. It is difficult to develop a standardized treatment for a disease that is so poorly understood. Treatment, for some of us, is just not as simple as “here, take this hormone for the rest of your life and you will be pneumothorax-free.” Hormones work on a case-by-case basis - what works for one patient, may not work for the next and it could have potentially deadly consequences.
I am glad mechanical pleurodesis worked for you. Again, everyone’s mileage varies. Mechanical pleurodesis failed on both of my lungs, which is not necessarily uncommon among thoracic endo patients and the general pneumothorax community. Please do not forget that there are many of us that deal with tension pneumothoraces. Thus, some of us do not have an option but to receive chemical pleurodesis after a failed pleural abrasion. We should not be shamed for a treatment that we had no control over. It was a last resort for me - my lung would not re-inflate after two weeks with multiple chest drains and multiple rounds of blood patches and betadine.
I am also glad that you didn’t need a wedge resection. Again, it’s highly dependent upon the patient. Some of us do not have an option because we have blebs that can no longer heal when they rupture and need to be removed in order to prevent a persistent air leak and increase the odds of a successful pleurodesis.
Nevertheless, it’s great that you are in the community and can advocate for repeat VATS as a last resort. Not all doctors practice informed consent and often fail to recommend alternatives to surgery. I wouldn’t wish a VATS procedure, wedge resection or pleurodesis on anyone. Or pigtail catheters…those really suck.
“Patient reports pain lessened significantly after excision. Less than 10% chance of recurrence per Sinervo. Not 100% pain free but major improvement. Lost fallopian tube that endo had destroyed. Ovarian suspension performed to reduce adhesion risk. Expresses strong satisfaction and wishes she had seen him years earlier. I had my excision with Sinervo last Monday. I like him. He got it ALL. Less than 10% chance of recurrence.”
Reported complications: loss of left fallopian tube, appendix removal, surgery over 4 hours
r/r/endometriosisJul 7, 2021+2 pts
Yes! Dr. Sinervo. The big thing is cost/insurance. Working out how much to budget for it…but husband and I are already planning to do it.
I’m still not sure. That’s the number she gave me over the phone (I think). I started the process earlier this year, dropped it when we moved to Alabama, and now I’m picking it back up. All I know so far is that Sinervo is out of network with my insurance. The hospital is in-network, the anesthesiologist is in-network, the bowel resection surgeon is in-network. I sent all this info to the team and they’re supposed to be getting back to me soon and I’ll have more of an idea of final cost. Hopefully Tricare will pull through for me. I know nothing about how insurance covers things. All I know is that I’ve tried every available treatment up to and including laparoscopy (ablation) and my endo is getting worse. I’ve had two miscarriages and almost 3 years of crap fertility. Not to mention the pain. I’m so over this.
Excision Surgery Totals
Excision Surgery Totals
Hey everyone!
I’m planning to have my excision surgery with Dr. Sinervo in Atlanta. Was wondering if anyone else has gone with them and did you have to call everyone involved in the process for a quote? Was getting an estimate easy or did you have to jump through hoops? So far I have on my to-do to call the Anesthesiologist office, the pathologist, northside hospital, and bowl resection surgeons office for estimates. Missing anything? Anyone have a cheat sheet for me?
Having Excision Surgery in Atlanta in October
Having Excision Surgery in Atlanta in October
I’m so nervous—but hopeful. I really don’t know what to expect really. I had ablation surgery in December of 2019. The surgery went well…they found endometriosis (stage 4) and burned off what was found. Somehow my tubes were in good shape. He removed two polyps. He thought I shouldn’t have any problems getting pregnant (we had been trying for a year by that surgery with no success). He did, however think I’m old and should just do IVF—but I’m not doing that.
Fast forward about 4-5 months, my pain returned. Painful and heavy periods, hurts to go #2, sometimes hurts to go #1, painful sex (in certain positions), painful if I have gas, constipated, etc. I managed to get pregnant one month after my surgery, lost the baby very early. Got pregnant again last Jan, lost again. Pain is better some months and worse other months. I just turned 40 last weekend. I’ve almost lost hope of having a healthy pregnancy. Hope is still there—I’m not giving up. But at this point, I hate this endo so much, I’m tossing a grenade at it.
Scheduled surgery with Dr. Sinervo. I really don’t know what to expect. I’m going in with hope and positivity. Hoping that if I can’t have what’s left of my fertility restored, I can at least take the first step towards managing this pain.
If you have any uplifting stories, feel free to share. I could use some positivity. ❤️
Time is not your friend if you have endo. I’m stage 4 and just had excision surgery yesterday. Prior to surgery I had 2 early miscarriages. I wouldn’t wish that emotional pain on my worst enemy. If I were you,
I’d go see Dr. Sinervo in Atlanta and have excision.
Endo gets worse with time. The sooner you can have excision surgery, the better. You shouldn’t have to live in pain. You shouldn’t feel rushed to settle down and have a baby. Just see what you can do to preserve your reproductive functioning. Go speak with an actual endo expert…not your typical obgyn. I waited too long…ended up losing a tube yesterday because endo mangled it. Don’t wait to get help…and once you do, you’ll be in a better place to make decisions to try for baby.
I’m actually parked right outside of CEC right now for my follow-up visit. Dr. Sinervo was great! We also traveled from out of town—though only 3 hours. Just research and find a good Airbnb. Ours was not so great…sofa was hard as a rock. But everyone at Northside Hospital was so sweet. I think most of their patients are people from out of town.
Laparoscopic excision is a type of surgery where the endometriosis implants are removed from the root. It also tends to be more extensive in scope…for example, they’ll explore and excise any endometriosis on the bowels or colon. Once the implants are excised, they’re gone forever. No growing back.
The more common surgery is ablation. This is where the surgeon will basically burn the endo off, but can leave the root intact. This is unfortunately the kind of surgery most of us first have…and keep having over and over after the endo grows back. I had ablation in December of 2019. This was painful surgery that gave me only 5 months of relief before it all grew back. The fact that so many of us, especially endo patients here, keep having this surgery is a major problem. It’s mistreatment and very unfair.
Excision surgery on the other hand is a great option for patients who are good candidates. That’s the surgery I had this past Monday. It was 3.5 hours long and they got all of it. I lost a Fallopian tube and my appendix but I’m recovering nicely. My surgery was with Dr. Sinervo with CEC in Atlanta. The man is a walking encyclopedia on endo and popular with patients. Unfortunately too many of us see him when our endo gets to stage 4. He can help stage 4 patients but outcomes are way better early on before the disease advances too much.
There are several excision specialists all over the US—not sure where you are located. I had to travel 3 hours for my treatment but it has been so worth it.
I had my lap in December of 2019. Was diagnosed stage 4. Mine all grew back and I think that’s just something common with ablation unfortunately. It leaves the root behind so recurrence is just common.
Excision surgery on the other hand removes the root and trust me…it’s worth the travel and expenses to have this kind of surgery done.
So here’s a “what-if” scenario.
Get better and see what happens. Pay attention to any symptoms (should they return), where they are, etc. mine retuned in 5 months but if I know anything about this condition, it’s SO different with every patient. I’ve heard of some not having too much trouble after their first lap. It never ceases to amaze me we have the same disease but we’re so different.
If your symptoms return, look on the about section for this sub. Find a surgeon who does excision where they remove from the root and address system-wide endo. I had my excision surgery with Dr. Sinervo at CEC in Atlanta. I’m 5 days post-op. He got it ALL. Less than 10% chance of recurrence. Some still have symptoms after excision but between ablation and excision, excision tends to have the best outcomes.
So you have a path forward even if things don’t turn out the way you hope. You have stage 3 endo—you are STRONG and you’ve got this. There is hope.
Your doctor is full of shit. You can have surgery and probably need to have surgery sooner rather than later.
You do not need a referral. Research laparoscopic excision surgeons for endometriosis. If the surgeon does not use the excision technique, move on. Do your research and find the one who is most skilled. You may have to travel but it’s worth it. I went with Dr. Sinervo at CEC in Atlanta. Others have had success with other excision specialists.
Be your own advocate and do no rely on bad recommendations from doctors who are ignorant.
I’m so sorry you’re going through this. You have hope…don’t give up.
My doctor was Dr. Ken Sinervo at Center for Endometriosis Care in Atlanta. Their office is one of the older and more established centers. Sinervo and Arrington are both there. Both are EXCELLENT. Sinervo has a slightly different technique…doesn’t use robotics. Arrington does. Both do excision. Both are true experts and tell it to you straight. Very kind staff members.
https://centerforendo.com/
There is also a list of resources on the about section of this sub. Use it to do your research on different doctors, etc. They are great resources.
Here is a good article on menopause and endo. [link](https://www.everydayhealth.com/news/why-menopause-wont-cure-endometriosis-fibroids-ovarian-cysts/)
Dr. Sinervo, mentioned in the piece, was my surgeon for my excision last Monday. I found him very knowledgeable.
My guess is that you could continue taking whatever birth control is helping your symptoms…but you may need to change course once you’re at a point where you need to consider hormone balance after your body isn’t producing the hormones it was. As long as endo is present in your body, hormones will always be an issue.
Regardless of which path you choose, you’d probably benefit by speaking with a doctor who is far more familiar with endometriosis. Your current doctor isn’t helping. Sinervo is good. There is also a link in the about section of this sub with doctors.
That would be a question that would be a great one to ask someone like Dr. Sinervo—or a doctor intimately familiar with the condition. I’ve never had to use it.
Just a guess…I’m sure they are busy with everyone that held off on surgery because of COVID. Northside hospital had a policy back in fall of last year that you couldn’t be admitted for surgery without an on-site COVID test if you were not fully vaccinated. I was only partially vaccinated so had to drive 4 hours there and back to get the test before surgery. I imagine the policy created a backlog from people out of state, in addition to the backlog from people just holding off for other reasons due to the pandemic. I’m sure it will normalize back out. This is why we need more doctors like Dr. Sinervo and Dr. K.
I wouldn’t recommend any corrective surgery for endometriosis unless it’s an endo surgeon that uses excision and teams with a gastro surgeon on the procedure. I went with Dr. Sinervo in Atlanta. They removed a heck of a lot of endo from the sigmoid colon region, which is a big problem area for endo patients.
If you are able to find a good excision surgeon like Sinervo and you’re ready to make the travel/expenses commitment, do it sooner rather than later. Endo progresses…and the more it progresses, the more damage is done to your body. I lost a Fallopian tube that couldn’t be saved and still have fertility issues even after surgery. But the pain has lessened significantly. I’m now also working with a napro doctor and treating my hormone imbalances and other health issues impacting fertility.
There is treatment. Don’t let anyone tell you there isn’t anything than can be done about it. In hindsight, I would have had this surgery years ago. It may have spared me these years of pain, infertility and miscarriage. These doctors are doing a tremendous harm to endo patients by not being honest about their options. Just because they aren’t qualified to do the surgery, doesn’t mean other doctors are not.
It sounds like you have a good gut instinct about this. I’d advise you not to compare your symptoms with those of others. Many of us have some overlap but we are all so different—which could mislead you. Some of us have other conditions also causing pain that we unknowingly attribute to our endometriosis. It happens…we are all patients and not doctors. Some of us have severe endometriosis and it hardly hurts at all. Some have mild endometriosis that hurts like hell. Our bodies are different and this disease impacts us all differently.
If you are speaking with doctors who are not taking your concerns seriously or being dismissive, you need to find someone who will be willing to do what is necessary to rule out endometriosis. Endometriosis isn’t some rare disease—a lot of women have it. And it gets worse the longer it goes untreated. I speak from experience and wish everyday I could talk to my 20 year old self. This disease has brought me incredible pain. It has damaged my mental health. It damaged my GI tract, colon and cost me a Fallopian tube. My husband and I have been trying for a baby for 4 years now. We got pregnant twice and lost both in the first trimester because of this disease—painful beyond belief. I’ve spent so much on doctors and surgeries to treat it. It took almost 25 years to get a diagnosis—by then I was stage 4 and in pain so bad, I had to give up exercise altogether. Not trying to scare you but giving you one more reason to not waste time on doctors who do not take your concerns seriously. You have to treat this as if it was cancer—find the best specialist you can and make an appointment. Don’t waste time. Do telehealth if no one competent is around you. I traveled out of state to Dr. Sinervo. Worth every penny and I wish every day I had seen him years ago before suffering all this physical and emotional pain. I’m now working with Dr. kongoasa in Atlanta (telehealth).
I can’t tell you if you have endo. But if you’re here then that is a sign you need to have someone confirm it. Sometimes they can see things that point to it on ultrasound. Sometimes they can’t. You’ll need laparoscopic surgery to confirm. Don’t let that scare you. Get your answer and then get a plan ready for how you want to treat it.
I’m so sorry you’re going through this. You may just need some time to heal up. I had two surgeries. The first was laparoscopic and they ablated the endo off. Big mistake but at least I got a diagnosis. My second surgery was with Dr. Sinervo. They excised all the endo out. It was in the sigmoid colon area, around urinary area, bladder, bowels. My left Fallopian tube was destroyed and needed to be removed. My appendix needed to be removed. He did an ovarian suspension which helps the ovary areas heal better from surgery so it lessens the chances of adhesions forming. It’s basically a wire that secures your ovaries to your pelvic wall and is knotted on the outside of your abdomen. I had to remove it myself a couple weeks after surgery—which was crazy. That was my second surgery and it was intense—was in the OR for over 4 hours.
I don’t know how intense yours was but I can tell you that you’re probably still healing. It took me a few months before I was back to normal. And believe it or not, even though I had the best possible surgery with the best possible surgeon…pain isn’t 100% gone. It’s not nearly as bad as it was before. But the damage that endometriosis can do can have some lingering effects that you may need so pelvic floor therapy for. I have stage 4 endometriosis. I don’t know if I’ll ever be completely pain free. But it was still a game changer and I don’t regret my last surgery at all.
If you’re still having pain after surgery, definitely let your doctor know. And if your doctor can’t help you, seek another opinion.
Because endo grows outside the uterus—on your bladder, bowels, colon—all in your abdominal region. You need your ovaries since important hormone production happens there. So if you had a hysterectomy, you’d likely still keep your ovaries as well as the hormones that trigger your endo. So you have the hormones still present and your endo still present even if you’re missing your uterus.
An analogy to trying to solve endometriosis with hysterectomy would be having your entire arm giving you terrible pain. And deciding you will have your hand removed to solve the issue. It’s true your hand will not hurt anymore—because you got rid of it. But the rest of your arm still will and you still haven’t addressed the source of the pain. What you’d want instead is a solution where you can keep your hand (if it’s still possible) and remove the things inside your arm causing pain so you can restore functioning of your arm with less pain than you had before.
Hysterectomy is a drastic way to approach endometriosis. Some patients might need it, such as those with a sister condition called adenomyosis. That’s endometriosis that’s deep within your uterus walls that can cause a great deal of pain in the uterus specifically. But if you don’t have it and your uterus is otherwise healthy, then hysterectomy is pointless. You’re instead looking at a scenario where you might benefit quite a bit from laparoscopic excision (do not confuse this with ablation). Excision digs your endometriosis implants out, piece by piece, from all over your problem areas. It’s highly advanced and only a few surgeons have the training to do it with minimal adhesions. It’s also multidisciplinary as you’d probably have GI surgeon in the OR with your endo surgeon to work with the delicate tissues of your colon and bowels. Accept nothing less than this. Your local OBGYN likely isn’t going to be able to do this as they usually ablate endo and that’s been proven to cause endometriosis to grow back. It’s a useless procedure—which is why many of us are covered in surgical scars from 2 or more surgeries. It’s medical mistreatment and needs to stop. Do not expect local OBGYNS to refer you to an excision specialist. They are oblivious, by and large.
You can ask the people here who they used for their excision (I went with Dr. Sinervo in Atlanta) but there are others who are good too. Find a few and schedule a consultation to talk about your situation and their approach. Use this time to get your finances and travel plans in order. Don’t let costs scare you—they vary quite a bit and you’d be surprised how things can work out. I would have still done this surgery even when I was a broke 20 year old. It would have saved me thousands and a world of pain if i addressed it early. You lose out on nothing, just talking to a surgeon like Dr. Sinervo and you’ll learn more in 15 minutes talking to him than you will in 15 years of talking to local doctors.
No one has options unless they’re lucky enough to live in a city where a real specialist is located. I live in Alabama…I had to travel to Atlanta. Now I do telehealth GYN with nurse practitioners 2 hours away from me. That’s how most of us have to manage this awful disease—if we even try to. You have Dr. Andrea Vidali located in your state. I went with Dr. Sinervo in Atlanta. Dr. Kongoasa’s nurse practitioners care for me now via telehealth. Kongoasa used to work with Sinervo and now has his own practice. They’re both excellent. I cannot promise you that only one surgery with either of them will get rid of your pain completely. But it’s better than the local status quo.
Also look up Napro and restorative reproductive healthcare. A lot of these providers are Catholic—meaning they reject birth control as a fix for reproductive health problems and if you’re infertile they’re going to fix the root cause instead of shuffling you off for IVF. There are no shortcuts with their approach. If you come to them in terrible pain, they are going to ultrasound you, bloodwork you, put you on every anti inflammatory pain relieving medication they can, get you scheduled for surgery,permanently remove every last shred of endo and diseased tissue they can find and put you in months of pelvic floor therapy. They will exhaust the hell out of you but they are the Delta team of the field of gynecology. These are the only doctors I will work with when it comes to reproductive health. I’ve been managing this pain for a long time and went through doctor after doctor after doctor. I can tell you the difference between a restorative GYN and these local GYNs is night and day different. I wish the others would get with the program.
“Patient had excision surgery with Dr. Sinervo (~6 months relief, found additional endo on utero-sacral ligament missed by prior surgeons), then partial hysterectomy (significant improvement), then final surgery removing cervix and adhesion-affected ovary with no further endo found. Pelvic pain free since 2020 (last surgery). Doctor gave patient his personal phone number during post-op complication. Doctor did not push hysterectomy, respected patient's fertility goals and led with patient's own g”
I actually got 3 years off my first one(ablation) then another with little to no relief(ablation again), then baby #1, then lap #3(doc said it was excision but specialist later confirmed it wasn't really) baby #2, then after a year of breastfeeding I finally saw Dr. Sinervo(Center for Endometriosis Care) had excision and the nerve cut (I think PSN?) got about 6 months of relief but by then we had confirmed adenomyosis and PT wasn't helping anymore so after a couple of months agonizing over the decision (and having mirena and Nuva ring at the same time) I finally had a hysterectomy 2 months ago. He also found some more endo on my utero sacral ligament that they must have missed in the first surgery. Anyway, pain free besides regular healing pains and probably some adhesions since then.
I had a hysterectomy with Dr. Sinervo (center for endometriosis care in Atlanta) I had 3 surgeries (ablations) and one excision surgery before the hysterectomy. First surgery I felt better for about 3 years, next two brought no relief. The first excision with dr. Sinervo helped some but he said I was suspicious for adenomyosis, I held out for another year and a half before going for the (partial)hysterectomy. I chose not to have my cervix out then because the recovery is longer and I had 2 and 4 year old kids at home to look after. After the partial hysterectomy I felt much better but still had some pain. This summer I went back in for my 6th and hopefully final surgery- removed my cervix and ovary that had adhesions intermittently cutting off blood supply. In that last surgery there was no sign of endo and with those last tweaks I’m finally pelvic pain free! I’m still having some digestive issues but the pain is gone. There’s hope- it may take a specialist and may take longer than you want but there’s hope.
I cannot remember if I had it during my earlier laparoscopies but I definitely did when I went to Dr. Sinervo at the center for endometriosis care in Atlanta. I’m sure you can ask about it during a consultation. I think you could probably even have it done in a urologists office. There are treatments for IC that urologists can do- I think mine just had more to do with irritation from endometriosis and adhesions obstructing things than an internal bladder issue.
I’ve had surgeries with Dr. Sinervo and he checked and said he didn’t see any but I still have some breathing issues- it feels like something grabs my diaphragm area and squeezes. Mostly been dealing with it in PT- my therapist said that the diaphragm and pelvic floor work together so since my pelvic floor has been seized up for so long my diaphragm hasn’t been working to it’s full capacity and that means all the fascia in between my ribs are also tight. I’m still not sure if it’s just a habitual response to the hormones or what but it all gets tight and harder to breathe cyclically. Cardio Exercise helps the most- forces me to take deeper breaths. I had a CT with contrast recently full body (except head and legs)and they didn’t see anything of note. Been 2 years since my last (6th) surgery and pelvic pain is gone but these symptoms still happen. It’s gotten better with the PT but still very discouraging. Not really sure what they would do if it is endo but I’m so over hormonal treatment that I think I’d rather just deal with it this way.
My endo specialist(Dr. Sinervo) never ever pushed for a hysterectomy- even after he went in and cleaned up my endo and saw my uterus was much too large and “soggy” he just told me that did not push hysterectomy. Even when I started asking questions about a hysterectomy he directed all his responses to me, not my husband. We started the doctor patient relationship with my goals- I did not want to give up my uterus, I wanted to preserve fertility. He was on my team and followed my lead. I did end up having one and it was the right decision but I can’t imagine how much more traumatic it could have been if I had felt any more pushed into it. Endometriosis already forces you into such vulnerability- good doctors listen and empathize and put the control back in your hands. I cannot emphasize enough how important that was to my healing. I’m tearing up writing this- you can find a good doctor and you’ll know when you do- keep looking.
If you can make it up to Atlanta Dr. Sinervo at the Center for Endometriosis Care is the best! He sees a lot of out of state, even out of country patients.
I wanted and had kids. I love my babies but I put them through 3 more surgeries and one really rough month long stay at the hospital for a post op infection. It was incredibly hard to be a mom and have chronic pain. I sometimes question whether it was a selfish decision on my part- but here we are. They’re 10 and almost 8 now and thanks to Dr. Sinervo I’m pretty much pelvic pain free. Luckily my kids are boys. I had heard the myth for a long time that pregnancy and breastfeeding would help alleviate the symptoms- it did not, just want to help dispel that myth. And validate any woman who chooses to remain child free.
Last surgery was 2020, pelvic pain free since then. That was my 6th surgery and they removed one ovary and my cervix that I didn’t have taken out during my partial hysterectomy - no more endo was found. The pain was from my ovary’s blood supply getting cut off by adhesions. That was with Dr. Sinervo at the CEC. I had one excision surgery with him before my hysterectomy and when he went in for my uterus he only found one more spot hiding out on my utero sacral ligament. Before him I had little to no relief from any of my surgeries. Still have some digestive issues and inflammation but not writhing on the floor in pain half the month anymore!
Everything came back for me too with a regular surgery- I had to go see Dr. Sinervo at the Center for Endometriosis Care in Atlanta. And the hysterectomy only helped because I had adenomyosis- endo in the uterus muscle. I had it a few other places too but I think the uterus was causing a lot of my pain. I hope you can find some relief.
I don’t remember signing anything that was an NDA type thing but I will admit I was highly stressed out at the time and very possibly did not read things carefully. The billing process was a nightmare our first go around but that was more because of insurance greed than his office trying to accumulate more $, we actually had an advocate from our health plan work with his office and his office changed the order things were billed in to create less demand on the patient after my first surgery and it was fixed by my next one. The out of network costs definitely create a barrier to people who don’t have the money to get appropriate care but they also allow the doctor a lot more flexibility to actually meet the needs of the patient. I’d say the best care I’ve received has been out of network for that reason- but that is an insurance tying doctors hands issue and a bigger problem than one surgeon can solve. I also had post op complications that weren’t well understood but Dr. Sinervo actually gave me his personal phone number and answered my call while I was in the hospital. I live in Atlanta and stayed at Northside hospital while addressing my complications(abscesses in my abdomen) so that may contribute to his ability to follow up with care. No doctor was able to definitively say where my complications came from but I strongly believe the anesthesia and recovery created an opportunity for underlying issues to emerge. Like my digestive tract has been messed up for years and these abscesses are probably around all the time but constantly being cleared out so when my body was under so much stress from surgery it just couldn’t clear out these bad spots anymore and so they were able to grow and create problems. I don’t think the surgeon did anything to create these problems but I am open to medical professional telling me another reason- I do not have a medical degree- so I really don’t know. I also think I’ll be biased towards defending Dr. Sinervo because he helped me in my own personal journey so much. That does not mean he hasn’t let down others though.
Patient 23Had SurgeryMixed10 postsRecurrenceexcision surgery (Dr. Mini, Columbus OH)excision surgery + bowel resection + diaphragmatic endo excision (Dr. Sinervo, Atlanta GA)
“Sinervo performed bowel resection and excision of diaphragmatic endo missed by prior surgeon. Patient conceived naturally within ~2 months post-surgery after 6 years of infertility. However, endo recurred ~4 years later with a large endometrioma; patient reports symptoms feel worse than before surgery. Patient critical of Sinervo's claims of being able to 'cure' endo as misleading. Patient would return only for confirmed severe bowel involvement requiring resection. Dr. Sinervo was my second exc”
r/r/EndoJul 19, 2016+3 pts
I'm from Metro Detroit. Unfortunately, there is NO ONE in MI who can provide adequate care for endo, especially assumingly severe endo if it's bowel related. Every doctor I've come across has pushed Lupron and quite honestly is incompetent when it comes to the treatment of endometriosis.
I had to travel to Columbus, Ohio for excision surgery. Every doctor here pushed Lupron, which isn't going to help my stage IV endo. I will be needing a bowel resection next.
Dr. Mini in Columbus, Ohio was great. Unfortunately, my endo is too bad (in my opinion) so I am going to Atlanta, GA to meet with Dr. Sinervo. His practice ONLY treats women with endo.
Good luck!! This disease is absolutely horrible and your wife is so lucky to have someone looking into this for her. <3
I had surgery there the beginning of this year. Dr. Sinervo was my second excision surgery, and he performed a bowel resection and found diaphragmatic endo that the previous endo excision expert missed. I would do it again in a heartbeat, but remember that after the surgery you still may have issues. I’ve needed pelvic floor physical therapy because my stage 4 endo caused so many issues... however, I fell pregnant naturally less than two months after my surgery!
Good luck!!
If they booked you with Dr. Sinervo, then it’s likely they think you have pretty severe endo - which I was both happy about & nervous about. Hooray world renowned doctor but having such severe endo is still scary. But you’re going to be in good hands and he knows exactly where to look to find the sneaky endo! I went 6 years unable to get pregnant and bam! Right after I saw him I fell pregnant after I accepted that my body wasn’t having it anymore lol - surprise!
Here’s hoping you can regain normalcy in your life! F endo! I’m certain you’ll have positive results. :)
Ha, I have stage 4 endo and went to two different Nook recommended doctors, one being the CEC in Jan 2018 where I required a bowel resection along with excision literally everywhere in my abdomen. Per NN, I should have been practically cured and Dr. Sinervo said I had a 10% chance of recurrence. Four years later, and the gigantic endometrioma on my cyst says otherwise!
I saw Sinervo in 2018. He performed a bowel resection on me, which was much needed, in addition to excision of all the usual pelvic organs. My endo is back and actually feels worse than it did before. I don’t regret going to him since my bowel endo was so severe, but I wouldn’t go to him until you have 100% confirmed bowel involvement. I first saw Dr. Mini in Ohio. She was great but wouldn’t touch my bowels so I had to make the trip (and spend thousands of dollars) to the CEC.
I saw Sinervo in 2018. He performed a bowel resection on me, which was much needed, in addition to excision of all the usual pelvic organs. My endo is back and actually feels worse than it did before. I don’t regret going to him since my bowel endo was so severe, but I wouldn’t go to him until you have 100% confirmed bowel involvement. I first saw Dr. Mini in Ohio. She was great but wouldn’t touch my bowels so I had to make the trip (and spend thousands of dollars) to the CEC.
ETA: I also have a tick-borne infection, Bartonella. I think that and endo is what makes some so severely anemic. I feel your pain. ❤️
Dr. Sinervo has treated lots of complicated cases, many including the bowels, so I trusted him with my case. I didn’t want to be worried about needing a colostomy. He reassured me that I wouldn’t need it and I didn’t. That was my biggest fear. Dr. Mini said she could only shave off the endo from my bowels and when I pressed her further (the majority of my symptoms were bowel related and I had endo blocking 2/3 of my colon), she scared me by saying I may “need to wear a diaper for the rest of my life”. My bowel endo was so bad that I wanted to go to someone absolutely competent in that area.
Other than that, when Sinervo was in surgery he said Dr. Mini did an amazing job at “cleaning me up” two years prior to my surgery with him. I think the majority of excision surgeons can handle moderate cases and if I didn’t have a severe case, Sinervo wouldn’t have made much sense. He said I had a 10% cure rate, which wasn’t true and I honestly didn’t expect that to be the case. I was just desperate because I didn’t want to have a bowel blockage and die so I had to turn to him to ensure I was treated appropriately.
How do they suspect you have bowel involvement? Have you had a colonoscopy? My endo was so bad it was actually diagnosed via colonoscopy. Was it just based on symptoms. A lot of people with IBS-like symptoms DO have bowel involvement but it could simply be on the exterior walls and not actually penetrating through, which is much easier to treat and wouldn’t require any major resection or anything.
No, I wouldn’t go back to him unless I had confirmed bowel endo and needed another resection. I plan on going back to Dr. Mini or another expert to see what exactly is going on inside before I will even consider Dr. Sinervo.
If I do have bowel involvement again requiring a resection, then absolutely I’d go back to him. If it’s superficial bowel endo then most other specialists should be able to treat that.
Since you haven’t had a lap yet, I would recommend finding a different excision specialist to at least see what you have going on. There’s quite a few great doctors out there that take insurance, if that’s an option for you. That’s what I did. Then once I discovered just how bad it was I made the decision to go to the CEC.
I guess I just dislike Dr. Sinervo’s claims that he can essentially “cure” endo. It’s misleading and sets patients up for disappointment. I totally understand that you want to go to a doctor that has great reviews and seems like a miracle, but he wasn’t it for me or many others I’ve talked to. I can say I had about 2.5 years of little to no symptoms, which was amazing.
Yes, Dr. Sinervo works with a colorectal surgeon. He had him on standby since he was certain I’d need some sort of bowel procedure. I trusted his surgeon because he routinely performs resections due to endo. Dr. Mini did not have a colorectal surgeon but her husband is one so I thought she was a good option for me at first, until she was hesitant to treat me.
I’m honestly not too sure. Dr. Sinervo said he’d keep the bowel surgeon on “stand by” but based on my medical records he was fairly certain I’d need a resection. When I went under anesthesia the bowel surgeon wasn’t there and I didn’t meet him until a day after recovery so I’d assume he was on call and available during my surgery.
“Sciatica and endo pain improved significantly after excision. Surgeon identified subtle endo lesions that a non-expert likely would not have caught. Urinary/bladder symptoms did not improve post-surgery. Patient became dissatisfied when she learned Sinervo donated to the Republican party and was critical that he did not offer Clenpiq as a bowel prep option. The HUGE patch of endo that Dr. Sinervo found on my right uterosacral ligament explained my mysterious sciatica pain. I still have hip weird”
r/r/EndoMar 4, 2021+2 pts
Thank you! I'm leaving next week to head down to Atlanta for my surgery with Dr. Sinervo. I'm exhausted, scared, anxious, and burnt out, but also excited to have the opportunity for a better quality of life. It will be my first laparoscopy/excision surgery. I KNOW that they'll find something, I just don't know what yet.
I'm hoping that it's actually endometriosis, and that I don't have a sneaky, weird case of adenomyosis. I don't want children, but I'd still rather not have a hysterectomy if it can be avoided.
I was talking to one of my trans friends recently about hysterectomies. They said they'll have to make a decision about that eventually. It sounds really difficult, and I hate that they have to deal with that on top of all of the other BS they get for being trans. I guess what I'm trying to say it's that I'm so sorry you're facing these **additional** difficulties. Endo is hard enough already!
The HUGE patch of endo that Dr. Sinervo found on my right uterosacral ligament explained my mysterious sciatica pain. I still have hip weirdness, but it's MUCH better after excision surgery. I'm so sorry for what you're going through. ❤️❤️❤️
Hey. I'm here to validate you. I have a VIDEO of my surgery from Dr. Sinervo. ONE patch of my endo was very dark and obvious. But in the other locations, it was NOT. There are several places where he excised endo and the endo tissue BARELY looked any different from the normal tissue surrounding it.
The video from my surgery showed one patch of endo that was dark, and several other patches that were very light and difficult to see. Dr. Sinervo spotted them, but I doubt that a non-expert would have been able to see them.
I could cry reading this. I've had urinary retention issues for a long time now, and they flare up right before my period. I had endo surgery with my Dr. Sinervo at the CEC and my endo pain is better but my urinary problems aren't.
I've been in pelvic floor therapy for over a year now (every week for the first 8 months or so, then every 2 weeks) and I'm still having problems.
Fwiw I also have a retroverted uterus. Please DM me if you want to talk about symptoms and compare notes!
Yes, and I think I have some sort of dysautonomia. I had endo surgery with Dr. Sinervo and my bladder was clear (he did a cystoscopy, too). I've been in pelvic floor PT for over a year now with very little improvement. I have other symptoms of dysautonomia, so that's what's I'm going to look into next.
Ducolax and miralax gave me terrible cramping and gas pains. I was doubled over from the pain. And I was literally up all night. The surgery prep was worse than the surgery recovery.
Clenpiq worked, but it worked gently. It wasn't painful, violent, and drawn out.
I was PISSED that my endometriosis surgeon (Ken Sinervo) didn't offer it as an option. (And then I was later pissed to learn that he pretended to be inclusive yet donated to Republicans, but I digress...)
Patient 25Had SurgeryPositive8 postsdiagnostic lapablation (prior failed surgery)excision (wide excision for Stage IV Endo)
“Patient had excision for Stage IV Endo and hysterectomy for Adenomyosis with Dr. Sinervo. At hysterectomy (8 months post-excision) no visible or pathological signs of Endo were found anywhere. All pain resolved after the third surgery (except pre-existing IC pain). Patient reports full remission. Dr. Sinervo also diagnosed the Adenomyosis and IC that previous doctors had missed. I had excision done for stage IV Endo with him, as well as full hysterectomy for highly suspected Adenomyosis. At my h”
r/r/EndoNov 10, 2020+3 pts
Hysterectomy does nothing to affect Endometriosis. Wide excision is needed, however a Hysterectomy does effect Adenomyosis. I'm in remission from Stage IV dieases. Please seek an expert opinion at the Center for Endometriosis Care in Atlanta, GA, USA. That's where everyone I know has had surgery and has lasting remission. Dr. Sinervo is one of the best.
Dr. Sinervo of the CEC (Center for Endo Care) in Atlanta, GA, USA has some of the best patient outcomes I've heard of in the world. He's had positive and lasting outcomes with patients from all over the world and is highly skilled. He operates 5 days a week only on Endo patients and has been trained under some of the best (Dr. Albee & Redwine). I had excision done for stage IV Endo with him, as well as full hysterectomy for highly suspected Adenomyosis. At my hysterectomy, which was 8 months post excision, there were no visible or pathological signs of Endo anywhere. All my pain was gone after that 3rd surgery, except for my IC pain (I had a diagnostic lap + ablation done first, 4 months prior to the excision that failed miserably & that doctor who called himself a specialist mistreated me, dismissed my concerns for emotional support, tried to push Orillissa post op, and was just severely misinformed so I fired him and found Dr. Sinervo). Also he was the only medical professional to listen and actually hear me AND the only one to find/diagnose the Adenomyosis and IC. He gives free records reviews so it won't hurt to get his opinion. Good luck and keep me posted! You can get through this awful disease. There's a light at the end of this tunnel, don't let anyone tell you remission isn't possible. 💛
You're welcome! You are very close to me in Atlanta. Please look into The Center for Endometriosis Care. Dr. Sinervo is one of the top rated Endometriosis experts/surgeons in the world. He will do a free records review and give you some good advice & options.
Hey, appreciate your comment and thoughts on this. I, however, strongly disagree with you, as I'm sure many others in the community would as well but I won't speak for them. I'm curious what information and data you used to come up with your perspective here. Would you mind sharing? The doctor who is quoted in the graphic I shared has been in practice over 30 years, and is one of the best, well-known, learned Endometriosis specialists in the world. How much experience do you have treating the disease?
You're right about utilizing diet, stress reduction techniques, and castor oil for pain, however your comment shows me that you don't have much extensive knowledge about Endometriosis. Lifestyle choices do not cause, nor do they heal, Endometriosis. Balancing hormones isn't a valid treatment, as Endometriosis lesions create their own estrogen and need to be removed from the body- which can only be done successfully via laparoscopic wide excision by a trained expert in the field.
I encourage you to research the work of Dr. David Redwine and check out his website via http://endopaedia.info/ for more accurate information. Natural remedies may help some symptoms and may help treat some cases, but there's not enough clinical evidence currently, anywhere in the world, that proves such treatment to be superior to wide excision when performed by a well trained expert. Please also visit the Center for Endometriosis Care website and research Dr. Ken Sinervo's patient outcomes. Be well & happy learning.
EXACTLY!!! I'm glad you find this info and graphic helpful! Dr. Sinervo is a wonderful physician, surgeon, and human being. His experience and patient outcomes are remarkable! I'm in remission because of him.
Hi, I appreciate your comment and questions! I hear you. This is a tough journey. Let me ask you this: just because chemo doesn't work for some cases of cancer, would it be fair to say one cannot claim it can help reach remission? What makes you think the statement is not true? Just because it's hard to get quality care doesn't mean there's no hope. Yes, human sight isn't perfect, but Dr. Sinervo is one of the most experienced excision surgeons out there with the highest rates of remission I've found in the world. I'm also one of his and Dr. Arrington's patients who has successfully reached remission.
Do you know why his practice doesn't take insurance? I encourage you to do some research, if you haven't yet. If you have and still don't understand why, I'm happy to explain. There are many issues right now with health care, especially in the US, and the very basic reason he cannot go through insurance is because the mainstream and widely accepted, though wrong & outdated, reason is because white male doctors believe hormonal treatment & ablation are the best treatments. Insurance doesn't recognize excision as a different type of surgical procedure than ablation, and in doing so, any gynecologically- trained surgeon can claim they are able to widely excise, which in many cases isn't good. Surgeons like Sinervo, Redwine, Cook, Orbuch, Cook, and other top rated Endo specialists have gone through much more thorough and extensive training to be the best. Would you accept minimum wage as after earning a PhD? Most people likely wouldn't.
That may seem or sound selfish, which I understand. However, it's much more complicated than just compensation, however that's a big part of it and it ties into insurance. It's a mess, honestly. But, there are some of us in this community who are fighting to change the rules and help more people get the correct treatment. Obviously, excision will be different with each case and with each doctor, but the more we learn, share, advocate, and act for change the better and more widely available & affordable treatment will be.
Don't give up. I encourage you to keep the discussion going, keep asking questions, keep learning, and keep fighting. One day, excision will be the norm and will be the standard of care. I, for one, have dedicated my personal and professional life to making sure this happens in my lifetime. We will get there. 💛
Hey, I appreciate your perspective here! This is a very tough and complicated disease (and that's putting grossly simply). I hear you when you say you struggle with info like this. Do you mind sharing with me how you came to feel like this post was claiming perfect knowledge on the condition/treatment? The reason I ask, is because you said "anyone saying they can fix it or know everything immediately"... this post, nor Dr. Sinervo, has ever claimed to know it all, though I would say 30+ years experience is pretty reliable, and he never claims perfection or absolute remission. I understand how you may have come to this thought, but I don't assume I know how other people think and I would love to hear your perspective. Perhaps there's a better way to convey this info in a way that doesn't make people jump to the same conclusions? What do you think? 💛