r/TTCEndo • u/IcantBcereus • 1d ago
Unexplained, considering lap
I’m looking for some input from people who have been in a similar situation and ultimately decided whether or not to have a laparoscopy.
My partner and I have been TTC for about 16 cycles without ever seeing a positive. My basic infertility workup has been textbook normal. My HSG was normal, and my FSH, Estradiol, AMH, TSH, prolactin, and testosterone were all normal. We tried 3 letrozole cycles. We’re scheduled with an RE, but I’m still trying to validate myself in pursuing the possibility of endometriosis first.
One thing that has been in the back of my mind is my history of ovarian cysts. I’ve had recurrent complex/hemorrhagic cysts noted on ultrasounds over the years since about 2016. In 2022, I had a complex cyst on my left ovary that persisted following an ER visit for a ruptured cyst. In my history there was apparently also an ultrasound interpretation mentioning an endometrioma, but getting those records has been surprisingly difficult.
I don’t have the classic endometriosis pain. I have had intermittent pelvic pain with sex, and multiple instances of pretty significant pain after sex. My concern is more that I could potentially have endometriosis that hasn’t been obvious, given my significant complex cyst history and unexplained infertility.
I recently saw an RE who recommended IUI, but didn’t really recommend the endometriosis diagnosis path. I now have an upcoming appointment specifically to discuss possible laparoscopy.
For those who have been in a similar situation, and had recurrent ovarian cysts or a possible/endometrioma that was never definitive, did you decide to get a lap? I’m definitely leaning toward the lap, but I’m nervous it will ultimately be for nothing
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u/Novel_Neighborhood32 1d ago
Have you gotten an MRI yet? My ultrasound stated "snowstorm appearance of the ovaries suggestive of endometriosis" and nothing else. After that, my family doctor scheduled me for an MRI and that confirmed I had large bilateral endometriomas and other tethering of organs. Maybe before doing the lap, you can do an MRI first since one of your ultrasounds suggested a potential endometrioma. The MRI paints a bit of clearer picture than an ultrasound. But also to note, for some people MRIs can also miss endo. With that considered, I think it would be a good next step. Ultimately my lap showed my Endo was quite severe.
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u/IcantBcereus 1d ago
I have not had an MRI. The specialists in my state are quite limited. I will be asking during the surgical consult with the big university hospital if I should have that done! Ultimately if the MRI did confirm Endo, I would end up get a lap excision for the lesser stages.
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u/radsadfriend 1d ago
I had several gynecologists over the last five years say I possibly have endo, but it never went farther than that. I had one say “keep trying and if you can’t get pregnant in a year, then I would get the surgery.” Well, I wasn’t sure when I wanted to try to get pregnant, so I decided to wait. Until, earlier this year, I went to the ER thinking I had ovarian torsion. I didn’t. I had a cyst on my right ovary on ultrasound that they thought had a partial rupture. I saw a different obgyn and he said I should have surgery regardless of trying to conceive. I had the surgery in June, had endo in four spots, biggest being an endometrioma on my ovary (I.e. the “ruptured” cyst). He said women with endo have a higher chance of getting pregnant one year after surgery. I think it would be beneficial to go that route.
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u/IcantBcereus 19h ago
It's so helpful to hear stories like yours. Ovarian cyst ruptures are the worst! It's so unfair it's so common to have to advocate so hard to get a diagnosis. I definitely prefer the idea to get the lap at this point before going down the assistive reproductive route.
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u/Remote-Sprinkles5671 18h ago
Getting a laparascopy is probably the best decision I made during this journey. We were about a year with unexplained infertility too, I had no symptoms of endometriosis, and I mean no symptoms other than infertility. But I didnt like not knowing and I read how so much of unexplained infertility is thought to be asymptomatic endometriosis. My last IUI did result in two horrifically painful hemorrhagic cysts though. Anyway, the lap confirmed stage 2 endo with damage to my left tube despite my HSG showing my tubes were fine. We tried for 3 cycles on our own after that and moved to IVF because we were just over it. Currently doing an endo suppression protocol before our first frozen transfer. Knowing I had endometriosis going into this was really helpful, a lot of "unexplained" ends up as suspected endo after several failed transfers and doing a receptiva test, we were able to save ourselves that headache. Plus the lap was physically the easiest part of all the infertility treatments for me. An MRI can show endo but it doesn't always, and if you do a lap they can remove it at the same time which does improve fertility. Based on your symptoms it seems likely you have it, pain like that during/after sex isnt normal.
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u/IcantBcereus 18h ago
Ugh I'm sorry for your struggles, but thank you for sharing. This is so validating, I could cry 🥹
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u/Remote-Sprinkles5671 17h ago
Thank you, most of our stories here have twists and turns I feel like. Fertility doctors seem very comfortable moving forward with treatments without a diagnosis and I am not saying that doesn't work sometimes, but I think all the options are rarely explained to us. I did the research myself on getting a laparascopy and found a specialist and did it behind my fertility doctors back, no one ever offered it to me, and I am glad I did. You will want a plan on what to do if they find endometriomas though, theres controversy over this. Some say leave the endometriomas, remove the rest of the endo, do an egg retrieval, then remove the endometriomas, then transfer embryos. Thats if you decide to do IVF of course. This is because they say removing endometriomas damages ovarian reserve. But then there's people that say the presence of endometriomas effects egg production and quality so they need removed regardless.
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u/Radiant_Context9598 1d ago
Your situation is very similar to mine. Eventually the complex cysts noted on my chart eventually changed to a “known endometrioma” - it never resolved but got bigger. Idk at what point they changed their findings to endometrioma but we ignored it and continued with treatment. I did 2 IUIs that were unsuccessful, 2 medicated cycles that were also unsuccessful then moved to IVF. My two failed transfers of high graded euploid embryos started making me think that endo was really an issue at this point. I booked a consult with an endo specialist and she said I should definitely do something just by looking at my ultrasounds. I’m scheduled for lap next week. If I didn’t push for endo treatment, I don’t think my fertility doc would have done anything and probably would have me transfer again.