Dr. Nicholas Kongoasa

Hey Margo! First, I’m sorry you need a lap, endo is so shitty. When I was first getting diagnosed I went to a local surgeon/specialist who did excision, but she didn’t do *complete* excision which meant as soon as I started stims I fed my endo and it came back with a vengeance. Nine months after my first lap I needed my left tube out so I decided to go to the same surgeon since she’d be able to clean up anything in there that was new. She was shocked at how exponentially bad it had gotten. At that point she told me to “get pregnant asap” because I’d need a hysterectomy. My rectum was attached to my uterus and she didn’t feel she could separate them without compromising my uterus. That when I really did a deep dive into Nancy’s Nook and looked for someone who could deal with stage IV DIE and would do complete excision. I chose Dr. Kongoasa in Atlanta who had recently left the CEC to start his own practice. Kongoasa had a particular interest in restoring fertility by getting the reproductive anatomy back to “normal” (I’d later find out he’s quite Catholic and Atlanta is still the south so his views on IVF were not awesome… sigh). In hindsight I would have gone to Vidali because he’d have been helpful with RI stuff at the same time, but the surgical care I received was top notch and life changing. I’m sure there are lots of good endo surgeons out there who aren’t listed on the Nook but I didn’t want to be a guinea pig trying to find one. I had 3 laps in 12 months and I’m happy to report that 5 years out I don’t think I’ll need another for a very long time, if ever. Seeing someone who is vetted by Nancy’s Nook and who has good patient reviews and outcomes is worth its weight in gold IMO.

Fellow endo sufferer here… it’s true many of the best excision specialists don’t take insurance (because insurance reimbursement rates are woefully low for what these experts are doing) but often the hospitals they operate out of are in network. I went to Dr. Kongoasa in Atlanta and paid his surgical fee (at the time he charged a flat rate) and then the rest of my surgery and hospital stay were covered in-network with my plan. Might be something to research more because if you find someone operating out of an in network hospital the bill likely won’t be as big as you’d imagine.

It would really depend on your policy, what they cover, and if Vidali and the hospital he operates out of is in or out or network. When I had my big excision surgery I saw Dr. Kongoasa in Atlanta and he was out of network but the hospital was in network. I paid him his fee and then submitted for reimbursement with my insurance (I got a small portion back but not much). The hospital took up bulk of the bill and they dealt directly with my insurance since they were in network so it didn’t end up being as expensive as if it had all been out of network.

I had excision surgery (pretty major, it was 7.5 hours). My surgeon also suggested that we should ttc immediately after but we weren’t successful. He didn’t take into account that I have poor egg quality and only one tube so spontaneous conception is unlikely to happen for us. I will say that I’ve done 6 retrievals since that surgery and the recovery from them is night and day compared to the recovery and periods I had when I did two retrievals before excision surgery. It didn’t necessarily make my treatment go better but it improved my quality of life immeasurably. ETA: I saw a NN surgeon, Dr. Kongoasa in Atlanta.

I go to Vios Fertility which is in Chicago. I had excision surgery in Atlanta with Dr. Kongoasa at the Center for Restorative Reproductive Surgery. I absolutely love Dr. K, but he’s not an advocate of IVF (for religious reasons from what I can tell), so it was very much a situation of he takes care of the endo, my RE takes care of the fertility treatments.

I’m so sorry for all you’ve been through. I haven’t had a hysterectomy, but I had/have stage 4 endo and had surgery with a nook doctor in July 2019. My story is a little different from yours in that I didn’t have any symptoms that worried me until I was off of bc at age 34 and started ttc. After stopping bc my endo came on with a vengeance and I had three laps in one years time with the final one being in Atlanta with Dr. Kongoasa. I was very worried about my fertility but the pain I was in was so severe that there was no way I could take care of a baby when I could barely take care of myself at that point. We did two egg retrievals about 7 months after my first lap (non-nook doctor who I still love but my case was too advanced for her) and at that time my AMH was 0.7. A year later, about six months post Nook surgery my AMH was retested and had risen to 1.10. There was a study that speculated that initially AMH decreases after endometriomia removal but at 12 months post-op it increases, and that seems to be the case for me. I’m now 15 months post op and my quality of life is immeasurably better. We’re still dealing with infertility, but treatments don’t cause me crippling pain, my periods don’t keep me awake at night in tears, and I don’t have to take muscle relaxers most days of the month just to function. Recovery was slow and I did months of physical therapy (both regular PT and pelvic floor PT), but that surgery was life changing and I have no regrets. While my uterus is still there, I don’t trust it and I’ve never gotten pregnant so while it appears to be “okay” we don’t know if it really is. It’s been a long road and the thought of throwing my body into an unknown and possibly risky state of pregnancy is scary so we’ll likely end up using a gestational carrier. My endo was on my diaphragm and bowel and surgery 7.5 hours... no matter how hard my surgeon tried to keep scar tissue at bay with his fancy PRP and other techniques I don’t think my pelvis is a safe place for our hard to get embryos. That’s a hard thing to come to terms with, but it is what it is. I hope your Nook surgeon understands your feelings and is compassionate in their care... I think that was one of the most valuable parts of my experience was that Dr. Kongoasa was so sensitive to my situation that I knew he was doing his absolute best to both heal me and comfort me. If you ever have any questions or just want to talk feel free to DM me and be kind to yourself. 💜

I’d recommend looking into Dr. Vidali in NYC since he also works with fertility patients, or the Center for Endometriosis Care in Atlanta... the CEC handles very complex cases. I had two laps here in Chicago before going to Atlanta (I saw Dr. Kongoasa at the Center for Restorative Reproductive Surgery, he used to work at the CEC) because my surgeon here said she wouldn’t be able to remove all the endo without a hysterectomy. Fortunately, Dr. Kongoasa was able to! It hasn’t fixed my egg quality issues, but I feel leaps and bounds better than I did before that operation. There are records review appointments you can set up with all those offices so they’ll consult with you based on your personal medical history. Good luck!

There are some women, but honestly when it comes to this surgery I don’t know that it makes a huge difference. The compassion and empathy my specialist (Dr. Kongoasa) treated me with was truly touching. He’s one of the most sensitive human beings I’ve ever met and really just wants help women who are suffering.

Huge red flag. Excision is absolutely different than ablation. Excision removed all of the endo from that area, and ablation burns the top off, leaving endometriosis remaining below the surface. Having expert excision surgery (by a true endo specialist like Dr. Fox or the doctors at the Center for Endometriosis Care in Atlanta) gives a recurrence rate of under 20%. Having ablation surgery has a recurrence rate around 80%. That’s an enormous difference! There are doctors who are hesitant to use excision in certain areas, but that likely means they don’t have the skill and experience to confidently excise that, not that it’s the wrong thing to do in the hands of a true expert. Excision is the gold standard for endometriosis treatment. As far as my fertility, from what we know based on my hysterscopy, my uterus is fine. I lost a Fallopian tube from endi damage and have poor egg quality, likely from many years of endometriosis going undetected (I didn’t know I had any problem until I stopped birth control at 34). If I wasn’t struggling with infertility I wouldn’t be in this group, but I am in a much better place than I was before my expert excision surgery last year. I used to have chronic, debilitating pain 20+ days a month and now I sometimes get my period without even realizing it... it was life changing. I traveled from Chicago to Atlanta to see Dr. Nicholas Kongoasa at The Center for Restorative Reproductive Surgery, who focuses on removing all the endometriosis and restoring anatomy to improve fertility. If you’re willing to travel, you might really like him... I saw you mentioned your religious beliefs in another comment and Dr. Kongoasa is Catholic. He doesn’t care for IVF and really tries to improve fertility with surgery and some various other methods stopping short of IVF. I went to him based on the fact that he would both remove all of my endometriosis and that he was actively trying to improve my fertility rather than just getting rid of the endo.

The Center for Endometriosis Care (aka the CEC) is in Atlanta and people travel from all over the world to go there. I ended up going to Dr. Kongoasa who used to be at the CEC and then started his own clinic, The Center for Restorative Reproductive Surgery in 2018. Dr. K has a specific interest in surgery to restore fertility and that’s why I chose him. He’s not a big fan of IVF, but I really appreciated his method of trying to restore your anatomy to how it’s supposed to be in order to restore/promote fertility. I’ve not found success yet, but I’m not totally surprised considering how bad my endo was. My surgery was 7.5 hours and he said I was “up there” as one of his worst cases, and from a pain and symptom standpoint he’s changed my life.

First let me say I’m so sorry you’re dealing with this, endo is such a hard disease and there’s so much conflicting information. I was all set to suggest you join Nancy’s Nook, and then I got to the part where you’re going to see a nook doctor! I’m almost 11 months post-op from a 7.5 hour surgery with Dr. Kongoasa and it changed my life. Prior to stopping bc to ttc I had very few symptoms of endo and none that made me think I had it. After several months off bc each subsequent period became more painful to the point my husband commented that he was worried. My mom and aunt both had endo, so I went to my gyno to talk about how I had been ttc for 8 months without success and that the pain was so bad I felt I needed surgery. She sent me away with a recommendation for extra Advil during my period. A second opinion with a pelvic pain specialist led to my first lap. She confirmed I had endo and removed “a lot of it” and said I should be able to get pregnant but to try to do so in the first three months post op. My left tube had needed a lot of pressure to open up during that lap. After 5 months we went to an RE and did all the preliminary tests and my HSG showed my left tube was collecting fluid which didn’t hurt me but was toxic to embryos so removing it was the best course of action. We did an ER while waiting for that surgery, and my post ER period was the worst by far I’d ever had. Had surgery (same surgeon) and she was shocked by how much endo had grown back in 9 months. Said to get pregnant ASAP (well, duh, that’s what we’re trying to do) and that I shouldn’t worry about how bad it’s getting because I’m going to need surgery again regardless. By then I’d joined the nook and what she was telling me didn’t sit well. The following month we did another ER and about half way thru stims I sent my info to Dr. K for review. Everyone has a different idea of what is best for them, but for me I knew I wasn’t comfortable getting pregnant knowing that my endo was growing. I couldn’t take care of a baby when 15 days out of the month i was in pain and another 5 were crippling. There was blood in my stool for the days leading into my period and during it. My thigh pain was starting to radiate all the way into the soles of my feet. I was afraid to eat because bm’s hurt so bad. The only way I could get through the day without crying from the pain was to take muscle relaxers like clockwork. That was no way to live much less try and take care of another person beside myself. Dr. K believed pregnancy in that state could be flat out dangerous for me. We finished that cycle and two months later we flew to Atlanta for surgery. My endo had grown out of control and he said I was one of the worst cases he’d had. They removed two nodules off my diaphragm, 12” of bowel, and endo from all over my pelvis, abdominal wall, bladder, uterosacral ligaments... everywhere. I was in the hospital for three days, and flew home two days after they released me. Recovery was slow, went back to work (I’m a hairstylist) at 5 weeks and did pelvis floor PT for about 6 months. It was a long road, but it worked! I’ve actually gotten two periods that I didn’t even know started! We just got back into the fertility game, so I’m on stims now and definitely nervous about what my post ER period is going to be like, but I feel so much better than I have in the past 2+ years it’s unbelievable. Not everyone would take the radical approach, and not everyone would want to do it prior to finding success... but for me it was the only route I felt comfortable with. Some nook doctors are more conservative... Dr. K is actually very religious and doesn’t agree with IVF (I didn’t know this until after surgery, he wasn’t pushy) and because of that his mission is to restore anatomy so that you have the best chance possible to conceive naturally. That hasn’t worked for us, but I’m relieved to know that he got everything he could see in there. He said even if there were microscopic cells

These are the surgeons I’ve landed on, please let me know thoughts! These are the surgeons I’ve landed on, please let me know thoughts! Through much research, talks with my OBGYN & doc at PRM, and helpful advice from this community as well, I’ve landed on three potential surgeons in Georgia. I intend to speak with all three and decide who I will go with after. Please let me know if you know (of) them and have any tips. Dr. Nathan Mordel Dr. Nicholas Kongoasa Dr. Soyini Hawkins I do not intend to go to CEC right now, as it is financially not on the table. Thank you!

Hi, happy to share!! I’m in the US, based in Georgia. My primary referred me to Dr Sallie McSwain, who did the first surgery. I love her, but she is not a specialist and eventually told me I should consider seeing one. I did a lot of research with Nancy’s nook, Reddit, etc. I found Sinervo, but his surgery was going to cost 19k. Eventually found Dr Kongoasa, who trained under sinervo. He didn’t even want to do another surgery right away - he wanted me going off continual contraceptive to be able to see the whole problem. Two years later he suggested surgery. Today I learned that he’s an incredibly well respected surgeon at Northside, and everybody here was so kind as well. The downside is his surgeon fee was out of network (6k for me), but I think his knowledge and guidance through this whole process has been immaculate.

My endometriosis journey My endometriosis journey (TLDR at bottom) I had more anxiety going into this laparoscopy than any surgery prior. I actually counted how many I’ve had - and if memory serves correctly, this was maybe #12, not counting wisdom teeth or ear tubes, etc. This was my second laparoscopy to look for endometriosis - which I’ll explain in just a bit.  I was 11 years old when I started to menstruate. From that point, my periods were never super regular. When I was 14, I started experiencing heavier periods & pain in my legs during those. I saw a gyno, who told me that it was very likely I was dealing with endometriosis, just based on symptoms.  I put it in the back of my mind - this was about 2004 anyways, and I was young. I wasn’t really ever educated on these types of issues, much like every woman I know. So I just kept pushing through, thinking it was normal pain.  I remember leaving class for period pains, all to go home and lay in bed. My mom was the same way - heavy & irregular periods that would send her home.  Once I got to college, I remember being doubled over in pain, feeling like I was crawling up the wall, sobbing on the phone to my mom - on more than one occassion.  It was around this time (age 19) that I got mono. And like many viruses, they bring out things that are lying dormant in your body. For me, I started to have what I now refer to as “flares”. Excruciating pain for about 2 hours, diarrhea, swelling, inflammation, adrenaline rushes, etc. I went to the ER and urgent care multiple times. These symptoms took the forefront of my mind. I was diagnosed in college with IBS, but I knew this was a bandaid diagnosis. IBS is not a culprit.  It took several tests, plenty of advocation, and about 7 years to get diagnosed with Mast Cell Disease (mastocytic entercolitis) and POTS.  I remember seeing a research study on the link between endometriosis and mast cells - that if you have endo, you likely have a higher mast cell count.  Once again, these things went to the back of my mind. Meanwhile, I was on my third gyno who told me I was likely struggling with endo. And while I understood, I didn’t think it was the culprit of so much of my pain.  It wasn’t until I was even two more gyno’s later (the former wanting me to try Lupron) that I started to really consider shifting my focus. My pelvic pain was getting worse, and I started feeling like just existing was becoming harder.  I ended up on 5 years of continual birth control. No sugar pills, no skipping - just straight into the next pack. The idea was that, if I was dealing with endo, this would at least suppress it. I was also struggling with multiple UTIs, ovarian cysts, and mast cell flares that continued to land me in the ER.  For so much of this time, I felt lost in my physical health. I knew I had some answers, but I also knew they were chronic conditions - and how the hell did I get here?  It was several years later that I got a new diagnosis - hEDS. While this was an incredibly helpful diagnosis in many ways (including new medications), it muddied the waters of what I might be dealing with. Could the pelvic, hip, back, and leg pain be endometriosis, or was hEDS the culprit of my pelvic pain? Could it be both?   The last gyno of that series was the first to suggest surgery. She knew I had been battling so much for so long - so why not see if we can at least get a diagnosis? Why not see if we can find a root issue?  Part of me regrets having had that first laparoscopy. This gyno wasn’t a specialist. So while she saw signs of inflammation, red spots, white plaque - she didn’t know what to make of it.  The other part of me feels forever indebted to her. Because of this surgery, she suggested that I see a specialist. She pushed me toward pelvic therapy & pelvic injections.  I’m going to pause here to say: if you struggle with any type of core/pelvic pain, pelvic therapy is worth it. Talk to your doctor about. The fact that I was \~31 years old and had zero idea I could do specific therapies for my pelvic pain is wild. We just aren’t educated enough on female anatomy and pain. We aren’t researched enough. All of that to say - look into pelvic therapy. I highly encourage it.  At this point, after this surgery, I was at a fork in the road - do I want to move forward and seek out a specialist, or just call it a day based on no findings in that first surgery? Do I want to accept that all of this could just be hEDS and Mast Cell Disease, or do I want to keep going?  One thing I know about myself is that I can’t stay stagnant when it comes to my physical health. I need to always be pushing forward, or I will go stir crazy. Granted there are always times where I take breaks and sit with it all. But overall, I am someone who feels like pushing for answers is the only way to keep my sanity.  So I looked into specialists. I live in Georgia, and knew that Sinervo is a well respected surgeon. I called his office - it was going to be 19k for surgery. NINETEEN THOUSAND. They did not accept insurance. While I respect the specialists in any field, this felt like robbery. I’m over here struggling and in pain, and you are willing to accept 19k from me? I get it - specialty surgeons are miracle workers more often than not. But this amount didn’t sit right with me. Nothing through insurance at all? I kept researching.  I landed on Dr. Kongoasa, who actually completed his fellowship at Sinervo’s practice. I knew that outside of his surgeon fee (under 7k which could go on Care Credit), everything else for the surgery would go through insurance. When I started talking with him, he did not want to jump into surgery right away anyways - and this was a huge relief for me. I wanted someone who’d look at the picture as a whole. He took me off of the continual birth control, and had me start with hormone panels. Through these, we found that my testosterone was low, and my insulin was high. Insulin resistance and endo go hand in hand - inflammation is everywhere in the body because of these two!  Two years after first seeing Dr. K, after a ton of pelvic therapy and injections, and with me still experiencing daily pain, he wanted to examine my photos from the first surgery again (the version he had before was photos of photos - so not super helpful). We had a video consultation where he told me that from the photos alone, it looked like how Stage 2 endo would appear when someone is on continual contraceptive (which was the case for that first surgery). He told me it’s time for surgery, if I wanted. And I did. I came in for pelvic exam and transvaginal ultrasound. My uterus was tilted backwards (not totally uncommon), but it was also being pulled to the left. Dr. K told me this was a sign of endo, but that it could also be from hEDS causing weakness in my ligaments.  Every day that got closer to the surgery, I was so anxious. This surgery with an endo specialist was going to give me answers one way or another. If I had endo, then he’d find it. If I didn’t, then is it just hEDS? Why am I always so inflamed? How do I help myself?  I was so nervous up until the moment they gave me Verced on the morning of the surgery. From that point on, I was loopy and ready.  When I came out of surgery, throughout waking up and falling right back asleep, I could feel pelvic spasms still occurring. My heart sank, thinking “well if I’m feeling that, he didn’t find it”. But the nurse said that they were prepping my extended recovery room. This was my first clue that something was found.  My boyfriend finally was able to come see me, and the first thing he told me was that they removed my appendix. This was clue #2.  Once we were in the extended recovery room, my boyfriend showed me the video of Dr. K reviewing the surgery photos. While I was watching, I started to cry. They found it. Happy tears flooded down my cheeks.  It was on my bowel - the adh

My endometriosis journey My endometriosis journey (TLDR at bottom) (Mods, I also put this in r/endometriosis, so if I need to remove this please let me know. Just hoping to help people out there struggling.) I had more anxiety going into this laparoscopy than any surgery prior. I actually counted how many I’ve had - and if memory serves correctly, this was maybe #12, not counting wisdom teeth or ear tubes, etc. This was my second laparoscopy to look for endometriosis - which I’ll explain in just a bit.  I was 11 years old when I started to menstruate. From that point, my periods were never super regular. When I was 14, I started experiencing heavier periods & pain in my legs during those. I saw a gyno, who told me that it was very likely I was dealing with endometriosis, just based on symptoms.  I put it in the back of my mind - this was about 2004 anyways, and I was young. I wasn’t really ever educated on these types of issues, much like every woman I know. So I just kept pushing through, thinking it was normal pain.  I remember leaving class for period pains, all to go home and lay in bed. My mom was the same way - heavy & irregular periods that would send her home.  Once I got to college, I remember being doubled over in pain, feeling like I was crawling up the wall, sobbing on the phone to my mom - on more than one occassion.  It was around this time (age 19) that I got mono. And like many viruses, they bring out things that are lying dormant in your body. For me, I started to have what I now refer to as “flares”. Excruciating pain for about 2 hours, diarrhea, swelling, inflammation, adrenaline rushes, etc. I went to the ER and urgent care multiple times. These symptoms took the forefront of my mind. I was diagnosed in college with IBS, but I knew this was a bandaid diagnosis. IBS is not a culprit.  It took several tests, plenty of advocation, and about 7 years to get diagnosed with Mast Cell Disease (mastocytic entercolitis) and POTS.  I remember seeing a research study on the link between endometriosis and mast cells - that if you have endo, you likely have a higher mast cell count.  Once again, these things went to the back of my mind. Meanwhile, I was on my third gyno who told me I was likely struggling with endo. And while I understood, I didn’t think it was the culprit of so much of my pain.  It wasn’t until I was even two more gyno’s later (the former wanting me to try Lupron) that I started to really consider shifting my focus. My pelvic pain was getting worse, and I started feeling like just existing was becoming harder.  I ended up on 5 years of continual birth control. No sugar pills, no skipping - just straight into the next pack. The idea was that, if I was dealing with endo, this would at least suppress it. I was also struggling with multiple UTIs, ovarian cysts, and mast cell flares that continued to land me in the ER.  For so much of this time, I felt lost in my physical health. I knew I had some answers, but I also knew they were chronic conditions - and how the hell did I get here?  It was several years later that I got a new diagnosis - hEDS. While this was an incredibly helpful diagnosis in many ways (including new medications), it muddied the waters of what I might be dealing with. Could the pelvic, hip, back, and leg pain be endometriosis, or was hEDS the culprit of my pelvic pain? Could it be both?   The last gyno of that series was the first to suggest surgery. She knew I had been battling so much for so long - so why not see if we can at least get a diagnosis? Why not see if we can find a root issue?  Part of me regrets having had that first laparoscopy. This gyno wasn’t a specialist. So while she saw signs of inflammation, red spots, white plaque - she didn’t know what to make of it.  The other part of me feels forever indebted to her. Because of this surgery, she suggested that I see a specialist. She pushed me toward pelvic therapy & pelvic injections.  I’m going to pause here to say: if you struggle with any type of core/pelvic pain, pelvic therapy is worth it. Talk to your doctor about. The fact that I was \~31 years old and had zero idea I could do specific therapies for my pelvic pain is wild. We just aren’t educated enough on female anatomy and pain. We aren’t researched enough. All of that to say - look into pelvic therapy. I highly encourage it.  At this point, after this surgery, I was at a fork in the road - do I want to move forward and seek out a specialist, or just call it a day based on no findings in that first surgery? Do I want to accept that all of this could just be hEDS and Mast Cell Disease, or do I want to keep going?  One thing I know about myself is that I can’t stay stagnant when it comes to my physical health. I need to always be pushing forward, or I will go stir crazy. Granted there are always times where I take breaks and sit with it all. But overall, I am someone who feels like pushing for answers is the only way to keep my sanity.  So I looked into specialists. I live in Georgia, and knew that Sinervo is a well respected surgeon. I called his office - it was going to be 19k for surgery. NINETEEN THOUSAND. They did not accept insurance. While I respect the specialists in any field, this felt like robbery. I’m over here struggling and in pain, and you are willing to accept 19k from me? I get it - specialty surgeons are miracle workers more often than not. But this amount didn’t sit right with me. Nothing through insurance at all? I kept researching.  I landed on Dr. Kongoasa, who actually completed his fellowship at Sinervo’s practice. I knew that outside of his surgeon fee (under 7k which could go on Care Credit), everything else for the surgery would go through insurance. When I started talking with him, he did not want to jump into surgery right away anyways - and this was a huge relief for me. I wanted someone who’d look at the picture as a whole. He took me off of the continual birth control, and had me start with hormone panels. Through these, we found that my testosterone was low, and my insulin was high. Insulin resistance and endo go hand in hand - inflammation is everywhere in the body because of these two!  Two years after first seeing Dr. K, after a ton of pelvic therapy and injections, and with me still experiencing daily pain, he wanted to examine my photos from the first surgery again (the version he had before was photos of photos - so not super helpful). We had a video consultation where he told me that from the photos alone, it looked like how Stage 2 endo would appear when someone is on continual contraceptive (which was the case for that first surgery). He told me it’s time for surgery, if I wanted. And I did. I came in for pelvic exam and transvaginal ultrasound. My uterus was tilted backwards (not totally uncommon), but it was also being pulled to the left. Dr. K told me this was a sign of endo, but that it could also be from hEDS causing weakness in my ligaments.  Every day that got closer to the surgery, I was so anxious. This surgery with an endo specialist was going to give me answers one way or another. If I had endo, then he’d find it. If I didn’t, then is it just hEDS? Why am I always so inflamed? How do I help myself?  I was so nervous up until the moment they gave me Verced on the morning of the surgery. From that point on, I was loopy and ready.  When I came out of surgery, throughout waking up and falling right back asleep, I could feel pelvic spasms still occurring. My heart sank, thinking “well if I’m feeling that, he didn’t find it”. But the nurse said that they were prepping my extended recovery room. This was my first clue that something was found.  My boyfriend finally was able to come see me, and the first thing he told me was that they removed my appendix. This was clue #2.  Once we were in the extended recovery room, my boyfriend showed me the video of Dr. K reviewing th

That’s insane and I’d report her so fast. Also - since you’re near atlanta - absolutely look into RHM (Dr. Kongoasa). That’s where I’ve been going for the last 2.5 years and just had surgery Friday where they found endometriosis (after having had one before by a regular OBGYN who didn’t see anything classic).

I had surgery with a nook doctor out of state. Many of the good excision surgeons are not covered by insurance. As I understand it, insurance billing would not allow them to do the type of surgery actually needed for endo - tends to be long and very precise. I had surgery March 24th and it was worth every penny. My surgeon caps his fees at 8k, based on complexity. I am going to submit to see what out of network benefits I might have to help with this. I used care credit to cover this fee. Someone mentioned RHM gynecology- that’s Dr. Kongoasa. He is a miracle worker.

I had surgery with a nook doctor out of state. Many of the good excision surgeons are not covered by insurance. As I understand it, insurance billing would not allow them to do the type of surgery actually needed for endo - tends to be long and very precise. I had surgery March 24th and it was worth every penny. My surgeon caps his fees at 8k, based on complexity. I am going to submit to see what out of network benefits I might have to help with this. I used care credit to cover this fee. Someone mentioned RHM gynecology- that’s Dr. Kongoasa. He is a miracle worker.

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.

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.

Endo Excision due to Infertility Endo Excision due to Infertility Hi! I am scheduled to have an endo excision surgery in February with Dr. Kongoasa in ATL. I’ve always suspected I had endo due to painful periods, IBS, and an Intercystial Cystitis diagnosis but our recent infertility journey has led us to the surgery. My husband and I have been TTC for a year now and have received all normal results until our HSG showed both fallopian tubes blocked and one tube having Hydrosalpinx. I’ve never had an STD or pelvic infection so my doctor is further suspecting this to be linked to endo. I’m going to Dr. K for an endo excision/exploratory surgery where he will also attempt to clean up and save my tubes. My end goal is of course to get pregnant so I’m considering doing an egg retrieval/IVF cycle before doing the surgery just incase anything goes wrong. This is a loaded post I know but I wanted to see if anyone had any knowledge or experience in fertility preservation surgeries linked with endo. Feeling very overwhelmed by all the upcoming decisions so would love any thoughts on the surgery, the surgeon, or timing of IVF. 💛

Endo excision and IVF Endo excision and IVF Hi! My husband and I have been TTC for a year now and our HSG uncovered that I have two blocked tubes - one tube with Hydrosalpinx. We believe this is due to endo. I’ve always had all the typical symptoms but have never been formally diagnosed. We are seeing an endo excision specialist in ALT (Dr. Kongoasa) who is also focused on fertility preservation and is going to try to save my tubes. Our end goal is to have a family so trying to figure out where IVF might come into play. I’m very fortunate to have 3.6 AMH and am worried the surgery might damage egg quality and/or quantity. Does anyone have any recommendations on timing of an egg retrieval? I’m leaning towards an egg retrieval prior to surgery to ensure IVF as an option.

Hi! I know this was a while ago but how did this turn out for you? I have a right sided Hydrosalpinx and a blocked left tube. Likely from endo. We’ve been TTC for a year now and just found this out. I had a consult with Dr. Kongoasa and am nervous what route to take next. Would love to hear how your journey has been!!

I’m in Atlanta! When researching specialists, I went back and forth between CEC and RHM gynecology (they have a surgical team), and I heard about Dr Kongoasa with RHM on a podcast actually, and Google reviews of CEC came back kind of mixed, so I went with RHM- they have been AMAZING. I called and got scheduled for a phone call consultation with the surgeon within a week or so. My first in person appointment was in late Feb/early March and I told them I suspected endo and am also looking to try and conceive later this year. I just had my lap last week, and Dr K excised the endo that they found, and I’m scheduled for follow ups regarding fertility and hormone imbalance in the upcoming months. They’ve got me set up with pelvic floor therapy after I heal as well. The specialist fee is not covered by insurance, but they do cap it so they give you an amount that they guarantee they won’t exceed regardless of the time or severity of the surgery, and the entire staff and supporting drs have been great to work with as well. I have garbage insurance so much of this I’ve had to pay out of pocket, and it’s been very expensive, so I am eternally grateful my husband and I can afford it with the help of medical credit cards lol. But overall I would highly recommend RHM.

If you’re willing to travel, I just had my lap done with Dr. Kongoasa with RHM Gynecology in Atlanta. Could not recommend them more. The whole staff there is kind and knowledgeable, and I felt taken care of and listened to every step of the way. I believe there’s a Facebook group as well called Nancy’s Nook where you can find recommendations for specialists in different areas across the USA. Good luck to you and your daughter!

Hydrosalpinx Tubes Hydrosalpinx Tubes Has anyone in the group had their hydrosalpinx tubes repaired by Dr.Nicholas Kongoasa in Atlanta? Or anyone else? I have a very low AMH 0.05 and struggling with IVF. I have bilateral hydrosalpinx and did a consult with him at which he recommended the following if needed: Your proposed procedures: Excision of Endometriosis HSP D&C (Hysteroscopy Dilation and Curettage) Chromotubation Ovarian PRP (Hysteroscopy) Novy Tubal Cannulation (possible) Tubal Fimbrioplasty (possible) Appendectomy (possible) I am 35 and have no kids. I grieve the possibility of never becoming a mom and I’m just not sold on donor eggs when I still have regular cycles every month despite my low AMH. He gave me a 15% chance of the surgery working and for me that’s a higher chance than IVF.

Bilateral Hydrosalpinx Bilateral Hydrosalpinx Has anyone in the group had their hydrosalpinx tubes repaired by Dr.Nicholas Kongoasa in Atlanta? Or anyone else? I have a very low AMH 0.05 and struggling with IVF. I have bilateral hydrosalpinx and did a consult with him at which he recommended the following if needed: Your proposed procedures: Excision of Endometriosis HSP D&C (Hysteroscopy Dilation and Curettage) Chromotubation Ovarian PRP (Hysteroscopy) Novy Tubal Cannulation (possible) Tubal Fimbrioplasty (possible) Appendectomy (possible) I am 35 and have no kids. I grieve the possibility of never becoming a mom and I’m just not sold on donor eggs when I still have regular cycles every month despite my low AMH. He gave me a 15% chance of the surgery working and for me that’s a higher chance than IVF.

post lap- feeling sad. post lap- feeling sad. Hi y'all. Posted in here a few days ago. Just had a lap wtih Dr Kongoasa in Atlanta. All my reproductive organs looked great, no endo on the ovaries, fallopian tubes, uterus, cervix... however he found that the bowel was stuck to the uterus making it stage 4. A lot of deep lesions were excised in the posterior cul de sac region and outside the bowel. My whole goal of surgery was fertility and pain management, and now I fear I might need a second surgery because of the bowel involvement. I'm speaking to him tomorrow to ask questions and go over everything. Just wondering if any of you have been in the same boat or have had similar findings after your lap? Were you able to ttc naturally?

Hey girl, I’m kind of in the same boat as you. I am in Orlando, FL and can’t find an excision specialist. I went to Center for Endometriosis Care in Atlanta and had excision surgery in 2017 with Dr. Kongoasa and he excised all of my endo. I was still having pain so I went to Dr. Fox in 2018. I had excision surgery again and a presacral neurectomy. He excised the endo that was there and said that the other surgeon must have missed it because it does not grow back if properly excised. I had a very similar experience to you, I did not like the way he treated me and told me the same thing that my endometriosis would not grow back after this surgery. He basically said endometriosis is the least of my worries and fat shamed me. I was only 19 at the time and had been dealing with this pain ever since I was 10 and Dr. Fox completely crushed my self esteem. My pain and symptoms somewhat improved but never fully went away. Fast forward 6 years later I am trying to find a different excision surgeon. I have been in severe pain for the past year and it has got significantly worse these last few months. I went to a gynecologist a few weeks ago and she did an ultrasound and mri that shows an endometrioma and hemmoragic cysts. This Dr said that she thinks my endometriosis has grown back and jumped to wanting to do surgery “to see what’s going on” and do ablation. I had explained to her my previous excisions and felt she was very uneducated on endo. I did not feel comfortable so now I am back at square one. This Dr says my endometriosis has grown back when Dr. Fox said it would not grow back. I went back on the Nancy’s Nook page and don’t have excision drs near me other than Dr. Fox or down south. Right now I am researching Dr. Aileen Caceres in Kissimmee. I went to the search bar and searched her name and found some positive posts a few years back. I am in so much pain and am in a loss at what to do. It’s nice to know I’m not the only one in this situation and wish you nothing but the best going forward❤️