Dr. Kenny Sinervo

He did my surgery, he and his staff are amazing. I had a great experience at the CEC. I'm about 9 weeks out and healing really well. My sex life has dramatically improved, which I think was both the excision and the pre-sacral neurectomy I had done. Doing pelvic PT now and feeling super optimistic about my long term prognosis.

They draw blood from your body (from my arm, they put me out with Versed for this part so I don't remember it). Then they spin down your blood and extract your platelets and mix them with some of your plasma. Then the surgeon does the surgery and applies this mixture to places that need to heal well, like areas where adhesions were removed or areas where endo was excised. I've had two excision surgeries and this one was by FAR much less painful in terms of recovery. I can't say for sure if it was surgical technique or the PRPT, maybe both? The CEC also uses [heated and humidified CO2 gas](http://centerforendo.com/post-surgical-shoulder-pain/) to distend the abdomen during surgery. I had almost no shoulder pain at all after my second surgery, which was a stark contrast with my first surgery where the gas pains were overwhelming the first few days and lasted for over a week. Yeah, the CEC actually cares about every aspect of surgery and they work hard to improve by using new techniques.

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 b

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.

Hmmm.. Yeah I'm a bit stumped. I will say I had surgery with a Nook doctor that was supposed to be the top in my state. I didn't get better after surgery and ended up having a second surgery at the CEC. They said that I had endo everywhere, and more than could have grown back since surgery. My gut instinct was that a fellow did most of my first surgery, not the Nook doctor. I had far more pain relief with my second surgery at the CEC. Not saying you need to go to that extreme, but it might be worth a records review with the CEC to see if they have any better ideas for treatments or what might be causing your pain. From your symptoms it sounds like incomplete excision. Why are you not getting a period?

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.

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

If the only thing that's holding you back is travel and you're interested in excision surgery... As someone who traveled across the country to the CEC, the travel was worth it a million times over. My first surgery with a local specialist was horrible and I got very little relief. My second surgery at the CEC was so much better and I have no daily pain still 1 year out. I have some cramping during periods that I can control with a prescription NSAID called Toradol. Travel seems daunting at first, but these specialists are used to traveling patients and they will set up your appointments in a condensed way that makes it much easier. They can usually do phone consults too.

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 we

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 lo

I had surgery at the CEC with Dr. S and it has been profoundly life changing for me. But I will say this, there ARE other super talented surgeons available, some that deal with thoracic endo, and it's worth investigating ALL of your options, even if that means traveling further (sometimes it can be cheaper). I had a great experience at CEC and recommend them to the ends of the earth, but it is worth getting several opinions. Have you had a full case review from the CEC? It's the first step to getting on the schedule, it's free, and it gets you towards a surgery date (they book out many months in advance). I think this could be important to get a sense of what may be going on with your thoracic symptoms. If the CEC says thoracic endo needs to be investigated then you'll want to narrow your search to docs that treat thoracic endo, and get some second opinions and price quotes for your specific case from a few docs and the CEC. Then have a frank discussion with your husband about everythi

I didn't recover well from my first excision surgery (with a local Nook doc that ended up being removed from the list), only had a small reduction in pain and over time the pain was creeping back more and more. About a year after my first excision I had surgery at the CEC and he found endo everywhere, more than what could have grown back in a year he said. I had one of my ovaries removed due to a botched endometrioma excision during my first surgery (endometrioma had grown back and my ovary was in pieces). I had a much smoother recovery after that surgery. A year later an endometrioma grew on my remaining ovary and I opted to go back to the CEC and have that removed. He saw no other endometriosis and the removal went well. In my case I don't think the endo grew back as much as it was missed in the first place. I think a fellow may have done part or most of my first surgery. I think sometimes age can play into it, there's a theory that endo deposits mature or activate slowly over a fe

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 peri

I flew cross country to the CEC for excision including appendectomy and PSN (and potential bowel resection). If they resect your bowel you are usually admitted into the hospital for up to a week to make sure your bowel is functioning properly, so be aware that you may need to alter your returning flight in that case. Generally speaking I think it's better to spend several days to up to a week recovering before flying home. With a long car ride and a flight ahead of you, I think you should plan to stay longer in TN if possible. It worries me that you won't have anyone with you, usually surgical centers won't discharge you without someone to drive you home and be with you the first day or so. If it's possible I really think you should bring someone with you to help you out. Tips for flying - book an aisle seat so it's easy to get in and out of the plane. I used miles to be able to book first class which helped a lot. Bring a small pillow to place between you and the seat belt. When you

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 made that same journey twice. I stayed in the Atlanta area for about a week after surgery to recover as much as possible. I booked my ticket on the aisle so I could get to the bathroom easily but didn't have lie flat seats either time. Recovery from his surgeries was far, far easier than recovery from surgeries I had with local docs. He uses heated and humidified CO2 which cuts down on the gas pains tremendously. You won't feel great but you'll be ok. Be sure, no matter how good you feel, to get a wheelchair at the check in counter (you may need to arrive earlier to do this). This was key for getting through security without having to stand for long periods of time. I woke up in much less pain after surgery than my usual endo agony. Be sure to get up and walk around on the plane several times and be sure you book a seat that reclines at least a little (seatguru.com is helpful for this). Be sure you have enough pain meds to help you through the flight and don't fly alone, have someone

He did a super thorough job with my first surgery, unfortunately I lost an ovary and tube to an endometrioma (there was just nothing left to salvage) and he did a PSN because we were TTC. About a year after surgery I started having burning pain on my remaining ovary and had a scan showing a new endometrioma had grown. Since it was painful I made the choice to go back to him to have it removed. He said there wasn't any endo elsewhere in my pelvis during that second surgery. I felt a lot of improvement on day to day symptoms after both surgeries but periods were still very painful unfortunately. The PSN worked to quiet the pain from my uterus but I had adenomyosis that cause inflammation and pain throughout the rest of my pelvis during periods. So eventually I had a hysterectomy with a local specialist. AFAIK most of my issues were contained to my uterus when she did that surgery (I had adeno, fibroids and issues with my fallopian tube), I may have had a couple of endo deposits in my pou

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 techn

I would be rather wary of doctors from BWH claiming to be excision specialists. I was diagnosed with superficial endo at BWH but repeat surgery at the CEC one year later identified thoracic endo as well as endo on my sigmoid colon, appendix, both uterosacral ligaments, right ovary, right ureter and bladder. The surgery at BWH also caused extensive fibrosis. Hopefully you have a much better experience than I did but I just wanted share mine (especially if you suspect diaphragmatic or bowel involvement).

I have confirmed endo on my lungs and diaphragm, and my story is similar to yours. I noticed that I was having a difficult time catching my breath after walking up a flight of stairs or between classes but my doctors brushed it off as anxiety. I still had a difficult time getting doctors to consider thoracic endo even after both of my lungs collapsed around the time of my period. I ultimately had to travel to the CEC in Atlanta for a combined VATS/laparoscopy. There is this misconception that thoracic endo is rare. It’s not rare; it’s under diagnosed. There is a really great Facebook page (and corresponding website) called “Extrapelvic Not Rare” if you’re interested in reading about others’ experiences. I really hope you’re able to get some answers!

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!

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 wit

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 suc

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!

There are no endometriosis specialists in CT unfortunately. However, I know quite a few people (including my cousin with stage 4 endo and frozen pelvis) who are happy with Dr. Luciano at UConn Health. She uses a combination of excision and ablation, but she accepts insurance and attends all of the major endo conferences to stay up-to-date on treatments/techniques. My current endo specialist even had nice things to say about Dr. Luciano. I personally traveled from CT to the CEC in Atlanta for surgery because I have thoracic endo. Dr. Vidali and Dr. Lora Liu are top endo surgeons in the NYC area. Dr. Kip Mackenzie in MA is a highly recommended endo specialist (and I think he accepts insurance). Some people have recommended surgeons at Brigham and Women’s in Boston, but I had a terrible experience with one of their endo surgeons and the hospital in general.

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.

I do not recommend the CEC. I got sucked into the whole “excision is the gold standard” and paying tens of thousands for subpar medical treatment. I regret not going to a university hospital. I have realized that coordinated care between multiple specialities is essential for endo patients since co-morbidities are very common yet dismissed by the self-proclaimed “excision specialists”.

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.

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

Hope you are feeling better. Not sure where you live but my daughter’s go to for years has been medical marijuana. It’s far less dangerous than opioids. Between that and her heating pad they definitely to the edge off. She has stage 4 endo and has had 7 surgeries. Her last surgery was with Dr. Sinervo in Atlanta. We are from Ny and flew there for surgery. She is having minimal pain since.

Find another doctor who specializes in endo. My daughter went back and forth for years between gastro and gyno doctors. Misdiagnosis and surgery by a doctor who was afraid to go near her bowels while it continued to grow. He didn’t suggest we look for another surgeon that an operate on the bowel area. Two years later she was back in surgery with a different doctor Who did surgery, but thought she may need about resection. Two months later, she had surgery with both the gynecologist and a Gastro surgeon. She ended up with a bag for four months and a hell of a lot of pain. This could’ve been avoided if we had researched doctors and knew more about endometriosis and bowel endometriosis. We traveled, November 2022 Atlanta and Dr. Sinervo. endometriosis is not a curable disease, but he is a very well trained specialist. It was worth our money. She still has some Endo that came back due to medicines for egg retrieval, but her pain is minimal. Do you research and if there’s anything I could d

My daughter has had 7 surgeries and we have learned a lot. The pain can take a long time to subside. Have you done pelvic floor therapy? That helped my daughter and she still goes. The surgeon who operated makes a huge difference in how you feel after. My daughter had three different endo surgeons. She had a lot of problems with bowel endo and also had a gastro surgeon. The third endo surgeon was in Atlanta. We live in Niagara Falls. She still had pain for a while after his surgery but little by little felt relief. Dr. sinervo is a top endo surgeon and removed a ton of scar tissue from previous surgeries. Make sure your surgeon is well versed in endometriosis and has top ratings for surgery. Scar tissue can be just as painful and poor surgical skills can cause more scarring.

Dr. Sinervo is in Atlanta. We made the trip there from Buffalo. My daughter had so much scar tissue that he removed from previous surgeries with some endo. Most likely caused by poor surgical skills. She has had her appendix and gall bladder removed. She had 4 surgeries in 4 months in 2020. One was emergency following a bowel resection while she was still in the hospital that left her with a bag for months. There is so much PTSD from that ordeal. She hallucinated from reglan for days while in the hospital. Post op care with Sinervo sucked and it took a while to feel better but her pain is gone. She also did pelvic floor therapy and still does. She froze eggs and when she later froze embryos with her now fiancé. She is now 12 weeks pregnant with twins which is nothing short of a miracle. We pray daily they make it to full term. Our heartache and I say “our” because (when it’s your child you suffer with them) has turned to cautious joy. She did have to have another surgery to remove a

I am a mom of a stage four endo patient. My daughter has been through hell and back and has had 7 surgeries. We have fought with her the whole journey. She had last excision surgery with Dr. Sinervo in Atlanta. She isn’t in pain now and is 12 weeks pregnant with IVF twins. It’s literally a miracle. Endo is a life long illness so we pray her pain never returns. My daughter has good insurance but she has fought with them on the phone for hours. It sounds like your parents maybe in denial or just don’t know enough about this disease and how debilitating it can be. I am so sorry you are going through this on your own. I can’t imagine. I have researched so much and if you or your mom have any questions you want to ask me feel free.

My daughter has had 7 surgeries and they have always given her oxy or hydros. They have refilled once as well. That’s crazy. If she has no history of drug addiction she should be given more. Also my daughter also had colonoscopy and every gastro test known to mankind. The endo was on her bowels. She ended up with a bowel resection and a bag for 4 months. She has no gallbladder or appendix because the endo adhesions fused the organs together. After many surgeries and very painful recoveries we went to Atlanta to Dr. Sinervo. If she is not feeling any better after her surgery I would look for a specialist. She went through so much hell that could have been alleviated had we known otherwise. If you want to message me at all I have researched so much as did my daughter. Pain started for her at around 14. She is now 32 and pregnant with twins through IVF. It’s literally a miracle. I would love to help someone else to prevent more surgeries.

Get a new doctor asap. Look for someone who specializes or you will waste years of your life. My. Daughter’s last endo surgery was with dr. Sinervo in Atlanta. He is one of the top specialist in the country. She has felt much better and is pregnant through IVF with twins. I would suggest freezing age for future if you plan to have children. Thank God my daughter did this.

Sorry I missed your question. Dr. Sinervo did her surgery. My daughter was stage 4 as well. She finally had relief and is due with twins through IVF. It’s been a long journey for her. If you have any other questions I will check this daily to make sure I answer. I have researched so much for her. Hope you are having some relief. 🙏🏻🙏🏻🙏🏻

I’m sorry I missed your question. Her last doctor is not there anymore. Her old gynecologist took over for him and she thinks she is very good, but hasn’t had surgery with her. Dr. Griffin did her first surgery. He’s very caring and a nice but don’t think he is very good. Dr Sinervo in Atlanta did her last surgery.

My daughter is 32 had symptoms for about 8 or so years before her first of eight surgeries. She has been to hell and back but is now due with IVF twins. She suffered terribly for years. She’s a kindergarten teacher and brought her heating pad to school with her every day. My advice to you is to do your research and find a top specialist in endo. So many doctors don’t know enough on how to treat it. My daughter had a horrible experience in 2020 and ended up with an ileostomy bag for 4 months. Had we found a specialist right from the start she wouldn’t have gone through what she went through. We flew to Atlanta and had surgery with Dr. Sinervo. He is a well known surgeon. While the after care sucks no matter where you are these days, he helped her finally get to where she is today. That surgery was in 2022. It is costly but I would have mortgaged our house to make her feel good. Something needs to change in women’s health care. No one should live in pain. Probably not the best advice but

My daughter is delivering twins in 6 days. She has had 8 surgeries. One with Dr. Sinervo in Atlanta who is a top specialist. She has no appendix or gallbladder. She had an ileostomy bag for 4 months after one of the surgeries. She was pretty clear of endo until she started the meds for egg retrieval. She got pregnant with twins through IVF. They are doing a c section and will have a bowel and bladder specialist on call in case there is a problem with adhesions with the organs and getting the babies out. I am starting to freak out a bit worrying about the delivery. Please let me know if anyone had anything similar to this and their outcomes.

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 abnorma

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'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 symptom

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

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! 🤣

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.

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 s

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.

We refinanced our house to pay for some bills to make my surgery doable (Dr Sinervo so out of network) so I was forced to do it. But it was something I knew I would've done regardless. I think just knowing I wasn't sure how long recovery would need to be contributed. There were things I also said I didn't NEED to do. Trust your body. Don't overdo it.

I did the decision last year with provider who said they knew what they were doing. It didn't fix the issue, it did diagnose, but it contributed to so much to medical trauma. I did a course of Orilissa and pain returned while I was on it. I did a consult with Dr Sinervo this spring. He absolutely was able to say that he wanted to pursue surgery with a theory of other diagnoses in addition to the Endo. I had surgery (drive 8.5 hours each way) last week and it was game changing. No trauma and he was correct with the endometriosis diagnosis but also found and treated adenomyosis, adhesions, fibroids, multiple types of cysts, and a scarred appendix. I highly recommend doing all the pelvic physical therapy you can and ruling everything you can out (pelvic congestion, pelvic floor dysfunction, IC, PCOS are some of my rule outs). A true excision specialist will tell you if it is worth it or worth exploring other options first. For what it is worth, Dr Sinervo changed(and saved) my life.

I was told at 15 I was having chronic constipation and put on birth control and miralax. At 18 I was told I had IBS. I was 31 when I was diagnosed with endo, adeno, and fibrosis tissues and adhesions. Since expert surgery with Dr Sinervo this summer, I haven't had a single issue with my stomach, digestion, and BMs. Go to the next doctor. Go to one that will listen. If the next one doesn't, find someone that will. A pelvic floor PT may bring some relief and they're usually amazing advocates. You deserve care.

It will not fix endometriosis, but if you have adenomyosis it should alleviate those symptoms. The Center for Endometriosis Care in Atlanta offers free case reviews. Their surgeons are experts, but surgery is out of network (all hospital services are often in network) and requires you to travel and stay for almost a week, but the surgery is well worth it if Dr Sinervo or Dr Arrington see the need.

Can confirm! I am so glad others have had success. I had surgery with Dr Sinervo and once I was past my initial surgery/anesthesia constipation, I've had no more constipation, diarrhea, pain, or urgency. I didn't have bowel endo, but my ovary had adhesions and had been adding pressure, as well as my appendix that was in the wrong place. I highly suggest the Center for Endometriosis Care.

The Center for Endometriosis Care does mention weight on their website, but it seemed as if Dr Sinervo was fine with my weight of 255. He said not to gain more if possible because anesthesia becomes more difficult. You might reach out to someone in the Healthy at Every Size community and see if they can help you find a provider or help you advocate for yourself because weight is just one data point and shouldn't stop you from getting the care you need. Good luck!

I did!! It seemed to be worse on pain days with food and evening onset. No doctor ever figured it out and few acknowledged it. I saw Dr Sinervo this summer, and I have had not one shake episode. Not necessarily helpful for all, but with expert excision it may be a thing of the past for you?

Sorry you're struggling with this! It can grow anywhere, as others have said. I had a ton of what seemed to be kidney issues that would never test as such, prior to seeing Dr Sinervo at Center for Endometriosis. He did find that my appendix was scarred pretty badly and just in the wrong place in my body... However the positive piece has been no kidney symptoms since that expert excision. Best of luck finding your solutions!

We tried several treatments and then finally had a laparoscopy when none of them worked. It actually wasn’t my endo, it was a fibroid that was keeping me from conceiving. We conceived just at a year post op and after we had decided to take a break from treatments. I’m not sure there are many things outside of those that are scientifically proven to help. I had been on a strict anti-inflammatory diet and supplements and gave up on all of that too when we decided to pause treatments. I think the most important thing is finding an actual endo/fertility specialist (we used center for endometriosis care in atl) that can listen to you, help you achieve your fertility/endo goals, and has the expertise to do both. Most ob/gyn’s and reproductive endocrinologists don’t Edit/update: we were fortunate to have one baby girl in 2019 before my hysterectomy/appendectomy/excision surgery last week. We weren’t willing to do IVF (zero judgement for others) but did all the meds and IUIs.

They are so great!! So thankful to have her after everything we have been through! That’s so amazing you got that surgery 5 years ago, I never even heard of it until last summer! We decided on a hysterectomy for a few reasons, mostly quality of life, but also adenomyosis. I had also never heard that word until last summer. I was in so much pain daily that I could barely get through the day. When I saw dr sinervo in Atlanta, he mentioned adenomyosis as my stage II endo really shouldn’t have been so debilitating. Adenomyosis was confirmed on the ultrasound and pathology report post op. I’m only a week out of my surgery, but I can already tell there is a HUGE difference. Thankful to finally have explanations and answers!!

Ugh sis, my heart shatters for you!! Here’s a bit of my story that may be helpful to you. I am 33 and was diagnosed with stage II endo at 15. I got married at 28 and had our daughter at 31. We got pregnant after a laparoscopy and 2 years of fertility treatments. It wasn’t actually my endo preventing pregnancy, it was a fibroid in my uterus. When I had my lap, they ablated the endo and removed the fibroid. I got pregnant a year after that surgery after several rounds of IUIs and fertility drugs. Fast forward to now, I’m 33 and just had a total hysterectomy, appendectomy, and excision surgery. I wish I would have never let any doctor that wasn’t a true endo specialist touch me. I went to the center for endometriosis care in Atlanta and I wish I would have seen them while trying to get pregnant. At that point, they would have excised me endo (DO NOT LET YOUR GYNO OR RE DO THIS), helped me control my pain, helped me get pregnant, then moved on the the surgery. I went through way too mu

First step is to get far away from a regular gyno. They are not equipped and do not have the knowledge or the expertise to treat endo. If you have adenomyosis, something gynos rarely discuss but 78% of us endo sufferers have, you won’t have relief from endo symptoms. So then you will be years with a doctor or multiple doctors that don’t really know what they are doing and just loading you up with meds and ablating endo that will grow back or excising it when they don’t have the skills to do this. Im 33 and finally have relief. I went to the center for endometriosis care in Atlanta and I’m devastated that I ever let a regular doc and reproductive endocrinologist treat me. While the outcome may have been the same if I got to the CEC sooner, at least I wouldn’t have suffered so much in the hands of people that had no idea what they are doing. All the pain meds I was having to take to function put me into acute kidney failure. The hormones all but ruined my body and my mental health. B

I did! I paid out of pocket for my surgery with Dr. Ken Sinervo at the Center for Endometriosis Care in Atlanta. Luckily, my insurance covered my hospital stay, but didn’t cover the actually surgery or surgeon. Cost $8,000 for my particular case (every case is different) and I had an appendectomy, hysterectomy, and excision surgery. He did a free virtual consult, pre-op, the surgery, then a post op virtual visit. I will follow up and get cleared by my OB/GYN that I hate, but whatever, it’s just one visit every once in a while now. I had so much anxiety about the cost and how taking that out of savings would effect us. I couldn’t even worry about the surgery because I was so worried about the money! I’m 7 weeks out and it’s the best 8 grand I’ve ever spent. I would do it again in a heartbeat

Are you in the US? I have a very similar story to you! I’m 32, but with an 18 month old. There was NO way I could care for another child with all the symptoms I was having (could barely take care of the first) so I went the route of pain management as my priority, but the endo specialist I went to is very well known for help women with Endo maintain or help with fertility. I saw dr ken sinervo at the center for Endometriosis care in Atlanta and wish I would have gone there when we were trying to get pregnant with our first. We saw a fertility specialist and reproductive endocrinologist and it didn’t help much, but I think that’s because my adenomyosis and endometriosis were so out of control

Surgery changed my life. I had a hysterectomy, appendectomy and excision surgery at the CEC in Atlanta and I literally cry sometimes because I never knew life could be like this. I am 8 weeks out and have ZERO pain for the first time in 20 years. Check out Nancy’s nook on facebook- they are a bit much, but they have awesome resources

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 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 treatme

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.

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.

No worries! After asking a bunch of people, all of them seemed to have the same vibe w Seckin. I’m glad I didn’t move forward w him. Ended up traveling to Atlanta and had excision with Dr. Sinervo.. really amazing surgeon and overall great experience considering that the surgery ended up being a lot more involved than anticipated. Would definitely recommend him 1000%.

The social media stuff was a huge turn off for me. But what made me decide not to go with him was how he treated the no-cost consultation. He called on the wrong day, didn’t have my files up for the call, sounded like he barely read them, and had this rushed monotoned voice. The call lasted all of 10 mins, half of which was me trying to think of what else to ask him and a few minutes of his matter-of-fact content. I ultimately decided to go with Dr. Sinervo at the CEC in Atlanta and could not be happier with my decision. He took his time during the no-cost consultation, actually READ my files, and was kind and caring throughout the call. The CEC is on IG but the office does not post very often and it’s always just factual knowledge on endo, nothing weird and creepy.

After consulting with 4 or 5 surgeons, I decided to go with Dr. Kenny Sinervo in Atlanta and I could not have been happier with my decision. He found endo that was missed on my bowel in the last 2 laps, and causing me so much pain. I ended up needing a bowel resection. Him and his staff are amazing, and so worth every penny that I spent out of pocket. I would do it over again if I need another surgery in the future.

I’m probably biased by saying this, but you’re more likely to get better results with a surgeon who doesn’t accept insurance. Tough pill to swallow, but I’ve had 4 laps and my last one was by a surgeon who was out of pocket and by far was the most in depth and complete excision. The surgeon who was in network rushed my lap and missed endometriosis, because insurance only covers so much of their time (as I’ve been told). It suck’s to have to pay a small fortune, but many of these doctors have payment plans and financing available. The surgeon I chose was Dr. Sinervo at the CEC in Atlanta and he was an absolute gem. I felt so comfortable even tho I had to travel out of state, and in my opinion he’s one of the best endometriosis surgeons there is. Fully worth the time and money spent. I would never go back to an in network doctor for this type of surgery.

I am so sorry to hear about your experience with Dr. Vidali. I did the free consult with him, and he called me on a totally different day and time than what was scheduled. I was confused and unprepared, and he said “can you just meet now?” so I felt pressured to continue the call. He had the same cold and rushed tone that made me feel uncomfortable, and when I asked him questions about my medical history, he didn’t even have my paperwork pulled up. It was clear that he didn’t even review it prior to calling me. It was a complete and utter red flag, on top of putting down the surgeon that I had seen previously. I went with my gut and did not move forward with him. If you are still in the market for a surgeon, I HIGHLY recommend Dr. Kenny Sinervo at the CEC in Atlanta. I had to travel, but it was so worth it. He sees patients from all over the world, so the entire office makes traveling patients feel very comfortable and prepared. I have a very severe and complicated case, and Dr. S

I was 28 when I yeeted my uterus. I had adenomyosis on top of stage 4 endo so I was miserable. My hysterectomy quite literally saved my life. The pain and contraction cramps were so horrible that I was suicidal and had to be hospitalized. By that point I’d had several endo surgeries with different specialists, including Dr Sinervo at the CEC in Atlanta. He’s one of the leading endo specialists in the world. My hysterectomy was 1.5 years later at a local hospital. I would say that keeping your ovaries is a great plan. That was my plan originally but my body had different plans. I did end up losing my ovaries too, which was really difficult. Endo and adeno just destroyed my reproductive system

TLDR: your docs don’t know what they’re talking about. Endometriosis on the bowels isn’t rare at all. It’s usually indicative of more severe disease. Check out Dr Andrea Vidali on Instagram or YouTube. He’s an endo surgeon in NYC and posts videos of surgeries explaining what he’s found. Hopefully one of the doctors treating you will watch it! Endo can grow directly on the outside of the bowel, it can also grow deeper into the bowel and cause blockages. It’s relatively common for people to need bowel resections. When I went for surgery at the CEC in Atlanta they had a bowel surgeon on standby because they thought I would need a resection. The first time I had surgery was for “appendicitis”. My entire colon was stuck with adhesions to my abdominal wall. The surgeon said it was a “forest of adhesions”. It turned out not to he appendicitis, but I did have endo on my appendix. Didn’t find that out for several more years.

Yes, but it’s a sad story. I didn’t start getting treatment until I was 26. The endo and adeno had a massive head start. After repeated excision surgeries, it became clear that I also had adeno. Between stage 4 endo and adeno, my entire reproductive system was destroyed. I have very minimal pelvic pain now, which is pretty amazing considering how horrible it used to be. I am a major believer in early treatment for endo & adeno. If anyone had helped me 20 years ago, I might not have lost my entire reproductive system by age 31. Pre covid I had surgery at the CEC in Atlanta. I will never forget seeing a little girl there with her parents who was also having surgery. She couldn’t have been more than 13. At that point I was in a wheelchair because I could hardly walk. She was looking at me with fear in her eyes. But I was looking at her with hope. Hope that the future will be better for the next generations. Hope that girls won’t be ignored, mocked, gaslit, and left to suffer like I wa

No you’re not silly! Surgery is scary. The problem is that endometriosis is an incredibly destructive disease. So surgical treatment is really important to preserve your organs. I saw that you live in GA which is great news. The CEC in Atlanta is one of the leading specialty centers in the world. I had surgery there and would do it again if my insurance would cover it. Unfortunately since I’m on NY Medicaid now it would be entirely out of pocket which I obviously am not going to do. Endo is an incurable disease and our treatment options are really limited. So we have to work with what we’ve got. If

I had a great experience at the CEC. Everyone was so kind and supportive there. Unfortunately I have needed further surgery since then, but that was for adenomyosis. I’m very fortunate that my parents paid for my surgery- it was about $10k With the amount of endo you have it’s definitely dangerous to leave it to grow. It damage or destroy all the organs it grows on. Endo and adeno destroyed my entire reproductive system. It’s really important that you get expert surgical care ASAP!

If you have the money go to the Center for Endometriosis Care in Atlanta. They are among the best endo surgeons in the world. They’ll be able to help her. Dr. Sinervo operated on me in 2017. My surgery wasn’t entirely successful because I had adenomyosis as well as severe endometriosis. I didn’t want to have a hysterectomy yet because I was only 26 and desperately trying to hold on to my fertility.

My mom"s friend had great luck with Dr. Corvin but it seems she only will accept surgery as an option if you're older/want kids. I ended up going to Atlanta and seeing Dr. Sinervo. He respected all of my requests and did an amazing job, but it was hella expensive, but worth every penny.

It's $9,000 up front and the final bill including that will max out at $21,000 thru insurance or much less than that if self pay. This does not include the hospital bill. He uses Northside Hospital to operate and it's considered outpatient in most cases barring extreme circumstances like bowel resection. I had my surgery in February and because I am billing insurance as mine does have some out of network coverage it'll be a long time before I get the second half, and once I do I can split it across 12 months with no interest.

I had blue cross so Northside , being inside of blue cross GA, was indirectly in network for me. However they're being stubborn and refusing to refund what overshot my in network deductible. My mom is currently twisting their arm. So in total I only had to pay up to my deductible of $3,000 to Northside. As of right now I'll owe CEC anywhere from $0 - $11,000 and of that we will see how much insurance covers. But since it can be spread over 12 months even if I pay $11,000 more I can afford that. It was the initial lump sum -- my husband's bonus ended up covering most of it thankfully.

I paid CEC $9,000 only. I paid Northside the morning of my remaining in network deductible (about $2,800 at the time). I may owe up to $11,000 more to the CEC only. Northside cannot get any more money from me. They complained blue cross didn't pay them enough but it's not my problem 😂

Oh my gosh I had stage 2 and I still felt it totally worth it especially just because I was able to get my hysterectomy and he found adenomyosis too. The compassion and listening and validation I received from him and the nurses already were a step above everyone else. I'm so sorry you've had to deal with so much discouragement. I think you have more than enough of a case to apply for the CEC and be accepted -- I didn't have a single referral or prior diagnosis and he still saw me. As expensive as it was I'd rather pay a big lump sum now for long term relief as opposed to multiple surgeries , and have to recover each time. I do indeed have to wait to see what my insurance will cover. CEC has insurance staff who will fight and appeal every step of the way for you. I don't have to do anything. I can make my own appeal after and as my mom worked for decades in insurance she will go to war if she doesn't like what she sees but CEC was very explicit with me that they WILL fight for me as

Dr. Sinervo did my surgery! He is one of the best in the country at finding and excising endometriosis. He told me he is confident he removed everything and it won't come back. Dr. Arrington is also on staff but I believe Dr. Sinervo does the majority, ESPECIALLY difficult cases like thoracic endo. I applied at the end of October 2021 and got a call back after Thanksgiving from Dr. Sinervo about how he wanted to help me. I confirmed I did not want an IUD and wanted a hysterectomy in addition to excision and he said I will hear from the scheduling dept. This is where the longest gap happens because they will be looking at your insurance too, it took until mid January to hear back at which point my surgery was scheduled for one month later. I stayed overnight but it was classified as out patient. I was there for under 24 hours ☺️ Overall the nurses took wonderful care of me. They were very nice. At the time I had my procedure COVID policy stated only one person can come and stay with