I also did IVF because of endo.

I didn’t go to a endo specialist - I was pretty sure I had it due to my symptoms and family history. I had a lap to prove it (for insurance purposes - otherwise my insurance would have forced me to do 6 pointless IUIs), but the gyn wasn’t a specialist - she just got biopsies to prove it. She also noted that I had what she estimated to be a liter of free fluid sloshing around in my pelvis, which she thought might impede fertilization/implantation.

Because of the diagnosis, the RE started me on steroids right after the retrieval and through the transfer to try to reduce inflammation. So I never had a full excision of the endo - just meds to settle down the inflammation. It worked. We have 2 kids.

Fellow endo and ivf warrior here.

In my opinion the best of the best is Dr. Andrea Vidali out of NYC. He is both an endometriosis surgeon (primarily) and fertility specialist. He is honest and will tell you the pathway best suited for your fertility history. In my specific case, he recommended against another surgery as I had already had two endometriosis excisions and told me to bank embryos and try transfers instead when I was facing IVF. I think the best indication of an honest doctor is one that does not always recommend surgery if not needed.

Endometriosis is an extremely mismanaged disease and there are only a 30-40 doctors in the country that are knowledgeable enough to properly counsel patients. Fertility-only doctors tend to have outdated knowledge of endo. Many endo doctors are not fertility doctors. It is very hard to navigate. This is why I specifically recommend Dr. Vidali, or other endo surgeons that also specialize in fertility.

Nancy’s Nook (fb group) is a wonderful resource for identifying surgeons. You want someone who does endometriosis surgery all the time where it is their main purpose. Run from any doctors that do not have their main focus on endometriosis. I got burned during my first surgery for trusting a doctor who said she was capable of treating endo and did a couple endo surgeries a year. You want a dr doing at least a couple endo surgeries a week. Looking back, and especially at my surgical records, I see she was nowhere near competent and the specialists I worked with afterwards also told me this.

If I were you, I’d bank some embryos and then, depending on dr advice, get endo excision surgery.

It is worth the time spent educating yourself. Nancy’s Nook is the best place to start, there are also facebook groups with useful information such as Endometriosis and IVF.

In the DMV, there is unfortunately a dearth of endometriosis specialists. The only doctor I would consider trusting is Moawad. Get second opinions. Makoul is not an endometriosis specialist.

Anonymous wrote:Can I be honest here?
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If money isn't a problem, I agree that you should start banking (tested) embryos while you pursue the possible endo diagnosis. Kindly, I would also think about donor egg and/or gestational carrier. After my "regular" DOR infertility turned into RPL, we went down a rabbit hole looking for uterine issues and spent a ton of time and effort treating potential issues. Then proceeded to have more chemicals despite a clean bill of uterine health. You've seen a lot of doctors and done a lot of IVF already. Things will just get harder as you hit your 40s. Sometimes it's just egg quality and more IVF just results in more bad embryos and failed cycles. If you can get normal blasts, try a gestational carrier while diagnosing and treating the endo. If you can't get normal blasts, then it's time to move onto donor eggs. I know it feels impossible that all of those embryos over all of those cycles could be abnormal, but sometimes they really are. It's so hard and so unfair. I'm sorry you've had such a hard road. I wish you peace and success.

I agree w/ this. A healthy baby is your ultimate goal, and 10 years from now you will care much less about the path it took to get there than seems possible right now.

Hugs and all my best wishes to you OP.

Anonymous wrote:

Anonymous wrote:I am sorry for what you are going through, OP. I have adenomyosis and there’s no cure for it other than waiting for menopause or a hysterectomy.
I was also at SG and my RE briefly mentioned a protocol with lupron that creates a temporary menopause and supposedly a more favorable uterine environment. But I was already 43 and we had just 2 embryos left so we ended up with a gestational carrier.
It can be tricky finding a good specialist for endometriosis. If you can afford it I’d go to someone like Tamer Seckin in NYC.

Thanks for the recommendation of Seckin. Money isn't the primary problem; it's time. My partner in particular is eager to avoid delay, and I imagine getting an appointment with a famous NYC doctor would take some time. I just saw Dr. MacKoul at the Center for Innovate GYN Care in Rockville. I like MacKoul; his honesty was refreshing and he seemed knowledgeable. He over promise in terms of fertility, but he said he prioritize my surgery if one is necessary. I have an appointment with Dr. Moawad at the Center for Endometriosis and Advance Pelvic Surgery in a couple days. If anyone is familiar with these practices or doctors I'd appreciate it. And in general, if one endo surgeon has a better chance of improving fertility than another. I know that some doctors/researcher don't believe that removing endo improve fertility at all. Such a range of views. I will note that after she had her endo removed, my SIL got pregnant naturally at 40/41 after several cycles of IVF. Hard anecdote to ignore.

If money is not an object do egg retrievals and freeze blasts while you find the right doctor for the endo issue.

Anonymous wrote:Dr. Nadim Hawa may be worth a consult for endo.

https://www.cwcare.net/profile-provider/288

NP and was just going to recommend him. My young adult DD has endo and has finally found the right practice. She loves Dr Hawa.

Can I be honest here?
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.
.

If money isn't a problem, I agree that you should start banking (tested) embryos while you pursue the possible endo diagnosis. Kindly, I would also think about donor egg and/or gestational carrier. After my "regular" DOR infertility turned into RPL, we went down a rabbit hole looking for uterine issues and spent a ton of time and effort treating potential issues. Then proceeded to have more chemicals despite a clean bill of uterine health. You've seen a lot of doctors and done a lot of IVF already. Things will just get harder as you hit your 40s. Sometimes it's just egg quality and more IVF just results in more bad embryos and failed cycles. If you can get normal blasts, try a gestational carrier while diagnosing and treating the endo. If you can't get normal blasts, then it's time to move onto donor eggs. I know it feels impossible that all of those embryos over all of those cycles could be abnormal, but sometimes they really are. It's so hard and so unfair. I'm sorry you've had such a hard road. I wish you peace and success.

Did you do aReceptivaDX test? That's what identified Endo for me. I had a successful transfer after Surgery and lupron after many failures

I saw Dr. Moawad when he was still at GW and had surgery done with him to remove endometriosis lesions - I'd recommend him.

Dr. Nadim Hawa may be worth a consult for endo.

https://www.cwcare.net/profile-provider/288

Consider a consult with Dr. Payson at CCRM NoVA. He's the Medical Director of the NoVA clinic.

I would start banking embryos now if you want to keep trying own egg. Commit to two more cycles at shady grove with a different doctor- tell them Davis’ low dose protocol had good results and insist and a similar protocol. Shady grove has the best lab around here, just see someone who is not Widra and get your embryos genetically tested. Also since you have so many chemicals I’m surprised no one has suggested an ERA. Your uterine implantation timing may be off. That will buy you a little time to figure out the endo and how you want to proceed. Once you have the endo figured out you will hopefully have some embryos banked.

I was sort of like you- had a uterine issue but made eggs. I banked 3 Euploid embryos at 40/ 41 with shady grove, then saw Davis and transferred untested day 3s with him- which didn’t work (even after surgery to correct my uterine issues). I then wasted two of my euploid embryos on my uterus and then with my last one I used a gestational carrier. all the doctors thought I could carry on my own but I wasn’t willing to chance it - and I’m sitting here feeding my three week old now. I’m not saying gestational carrier is the answer for you- it’s expensive and takes a lot of time because of the dearth of carriers…

My donor egg baby is almost 6 now so it’s hard for me to remember the details but I saw two different surgeons who told me to leave my endometriosis alone because they would end up removing some healthy eggs along with the endometriomas during surgery, and I would end up less furtive. They recommended only removing the polyp. That said, I didn’t end up pregnant with my own eggs, so maybe don’t do what I did?

I’m not telling you you need to switch to donor egg now. You definitely shouldn’t switch until you’re ready. But I am telling you that if you have to switch, it’s really, truly, completely ok. My daughter is amazing.

Good luck to you. I hope you get your baby.

Anonymous wrote:I am sorry for what you are going through, OP. I have adenomyosis and there’s no cure for it other than waiting for menopause or a hysterectomy.
I was also at SG and my RE briefly mentioned a protocol with lupron that creates a temporary menopause and supposedly a more favorable uterine environment. But I was already 43 and we had just 2 embryos left so we ended up with a gestational carrier.
It can be tricky finding a good specialist for endometriosis. If you can afford it I’d go to someone like Tamer Seckin in NYC.

Thanks for the recommendation of Seckin. Money isn't the primary problem; it's time. My partner in particular is eager to avoid delay, and I imagine getting an appointment with a famous NYC doctor would take some time. I just saw Dr. MacKoul at the Center for Innovate GYN Care in Rockville. I like MacKoul; his honesty was refreshing and he seemed knowledgeable. He over promise in terms of fertility, but he said he prioritize my surgery if one is necessary. I have an appointment with Dr. Moawad at the Center for Endometriosis and Advance Pelvic Surgery in a couple days. If anyone is familiar with these practices or doctors I'd appreciate it. And in general, if one endo surgeon has a better chance of improving fertility than another. I know that some doctors/researcher don't believe that removing endo improve fertility at all. Such a range of views. I will note that after she had her endo removed, my SIL got pregnant naturally at 40/41 after several cycles of IVF. Hard anecdote to ignore.

I am sorry for what you are going through, OP. I have adenomyosis and there’s no cure for it other than waiting for menopause or a hysterectomy.
I was also at SG and my RE briefly mentioned a protocol with lupron that creates a temporary menopause and supposedly a more favorable uterine environment. But I was already 43 and we had just 2 embryos left so we ended up with a gestational carrier.
It can be tricky finding a good specialist for endometriosis. If you can afford it I’d go to someone like Tamer Seckin in NYC.

Long story here. I'm 39 years old and started my IVF experience in the summer of 2020 at SGF with Widra. First cycle produced few oocytes and embryos but one euploid blast. We did a FTE after ERA testing. Ended up with a chemical pregnancy; this was my third chemical pregnancy as I had two with natural pregnancies. On the second cycle, Widra dropped the BC and upped the stim to the max. That produced no usable embryos, so Widra recommended donor. We wanted a second opinion especially because Widra seemed burned-out and, well, kind of a jerk. While we organized the second opinion we did a third cycle with Widra, a flare cycle, which also failed.

Our second doctor was Davis at Weill Cornell who seemed much more engaged. We did a low-stim prootocl with him, and it seemed like everything changed. We ended up with 12 embryos, and 8 blasts. We didn't do testing on Davis's recommendation because he didn't expect so many blasts. Several of the embryos/blasts were highly graded. We did a fresh transfer, and then 4 FTEs with two blasts at a time. Davis also removed a polyp at one point. He seemed to think one of these transfers would work. They didn't, although one resulted in my fourth chemical pregnancies. These transfer took a long time -- from August 2021 to April 2022. We did another cycle with Davis (my 5th) in August 2020 (Cornell closes its lab every June, and we lost July because of the timing of my cycle in light of the lab cleaning). That cycle only resulted in 4 oocytes and 3 embryos. Davis being Davis, we did a fresh transfer of all 3 embryos with no success. Davis said that I was DOR, but indicated that something else may be going on in light of the high retrieval in August 2021. He said that his work up was complete, more genetic IVF cycles weren't unreasonable, but that donor egg was the most likely to work.

I had severe menstrual cramping on Day 1 of my September period. Double over, screaming in pain. I almost called an ambulance, but some one prescription painkillers allowed me to stay at home. I had similar pain incidents while TTC, but not every cycle. I didn't address it seriously because I thought it might be the IBS I was vaguely diagnosed with, and because neither Widra nor David seemed interested. I told Widra that I had severe cramping a few days before my period that confused my in terms of my cycle or possible IBS. He said "I'm sorry you experience that" and then moved on with his plan. I told Davis I had severe pain triggered by sexual stimulation, and asked whether we should proceed with the next transfer. He simply said "yes." But with the pain I experience this September I asked Davis about endometriosis/adenomyosis. He said I could explore that on my own, but that treating it wouldn't necessarily improve my fertility.

We decided to look for a local doctor who would be more engaged with the endo, and ended up with Dr. Abassi at CFA, who also considers immune problems, which are of some interest. She gave me some referrals, and I've spoken to some endo specialists surgeons. We have a plan to diagnose/rule out endometriosis/adenomyosis. Trying to move forward as quickly as possible, I'm trying to identify a new IVF doctor who can assist with all the possible results of the endo inquiries. The reason I'm considering leaving Dr. Abbassi is that the endo doctor, who worked with her, said that he doesn't recommend her or CFA. He said CFA is disorganized (I saw that in online reviews), and that Abbasi is "old school." I asked him for a recommendation, but he's not a fan of IVF practices in general, and just rattled off a long list of DMV/NYC doctors.

So I'm now here. I'm looking for a clinic that won't just push donor in light of a endo diagnosis. That said, I'm looking for a clinic with good donor services, which I've gathered is the bigger clinics. A doctor who won't balk at working with an immunologist would be a plus. Davis at Cornell may meet these characteristics, but we're unsure whether we want to continue to travel to NYC, especially for donor. Any local clinics fit? I'd rather not return to SGF after the bad experience with Widra. I was thinking CCRM, but Schoolcraft didn't appeal to us when we consulted with him before. He seemed all about the lab, and I've heard that he pushes donor. But maybe someone other than Widra at SGF, or other than Schoolcraft at CCRM, would work. Any suggestions?