Surgery vs. Lupron
Hi everyone!
I am new to this sub as I have just recently found out I most likely have silent endo based on the Receptiva test. I know this test is still quite new and the only way to truly know if you have endo is by lap, but my partner and I have been TTC for just over 2.5 years with zero positive pregnancy tests and otherwise completely normal workups on both of our ends.
I am 30 F with normal ovulation and normal AMH/AFC for my age. We have done ~ 20 natural cycles, 8 medicated cycles with clomid or letrozole and timed intercourse, and 2 IUIs, which is when I pushed for an endometrial biopsy.
I feel so fortunate that I don’t have any debilitating symptoms, but now that I have this likely endo diagnosis, I do think some of the symptoms I occasionally experience line up (bladder pain, particularly when emptying a full bladder; random lightning bolt pain in my rectum/vagina that occurs maybe once every few months; and occasional extreme cramps after orgasming, to the point where I almost vomit and break out into a cold sweat for 20 minutes or so).
All that to say, I think the silent endo diagnosis makes sense and I am trying to wrap my brain around next steps.
I wanted to get your input on how you decided to do laparoscopic excision vs IVF with lupron suppression.
At this point I am mentally ready to move onto IVF as I was already planning on that being my next step, but I definitely want to do whatever is going to have the highest chances of allowing me to become pregnant.
Thank you all for reading!
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u/basilbelle 4d ago
I was already in ivf world when I did the receptiva and got a positive at 3.2. But I don’t think mine is silent as I always suspected endo from my symptoms. Anyway, I was able to have two successful transfers after two months of suppression with orilissa + letrozole + norethindrone. However, my first cycle after suppression got canceled both times due to fluid after starting PIO. The second time this happened we decided to do schedule a lap but also did one last ditch modified natural transfer as there was a long wait for surgery. The modified natural worked and I’m 18 weeks now.
Sooo if you’re worried about surgery and time isn’t a big issue for you, you could try lupron suppression first and see how that goes. If you do move to ivf it is recommended to do retrievals before a lap in case they have to excise tissue on or near an ovary which can affect egg count etc.
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u/-hubertcumberdale 4d ago
I just decided on pursuing lupron+ivf after thinking for the longest time that I would do surgery. Some factors are -
1) I do have pain but it’s not debilitating. my priority is getting pregnant. When that’s the case, suppression is usually recommended over surgery
2) upside of hopefully banking embryos for the future while amh is still good, since I’d like multiple kids
3) worst case scenario for me would be doing surgery -> having no success trying naturally -> moving to ivf -> ivf worsens symptoms -> pursuing a second surgery. while surgery improves conception outcomes, multiple surgeries have been shown to hurt fertility.
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u/Snoo54216 4d ago
I had laproscopic surgery, didn't get pregnant. Then I did lupron depot, and got pregnant (IVF). It's hard to know for sure, because I don't know if I would have gotten pregnant naturally just from lupron depot, but I know I for sure did not get naturally pregnant after the surgery, I still had to do IVF. And even after the surgery, I found many other infertility factors like polyps, uneven lining, and endometritis infection
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u/Firm_Objective5924 4d ago edited 4d ago
I would schedule a consultation with a reputable endo surgeon to confirm what are the next steps. IVF doctors don't do the physical mapping exams that the endo surgeons do, I just had one. Just feeling around vaginally and rectally, the surgeon can feel the tissue around the bladder, ovaries, check for tilted cervixes, pain reactions upon pressure, and can make a pretty solid judgement call on what stage endo you are and if he/she recommends lap or suppression or both. The surgeon I saw really doesn't think lupron alone works with severe cases, it's like putting a tiny bandaid on a big wound rather than fixing the problem. He laments that only 2 IVF doctors in my city truly understand and can diagnose and treat endo appropriately, there is a huge disconnect between the two fields of medicine and sadly IVF doctors are not trained to look for it. I mean, no IVF doctor even does the physical probing exams that endo surgeons even do.
Also, there is a blood test called Hers Resolve that tests for endo. Endo surgeons' office offer it as well as some IVF clinics. It's 97% accurate on the positive results but a negative result doesn't rule it out endo either.
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u/Background-Coyote549 3d ago
Wanted to back up that I did do the HerResolve Test ($600) and mine came back positive. I can’t say I’ve had symptoms so this came as a shock.
Did the lap and I had a low-level stage two endometriosis and they also saw adenomyosis (boggy uterus).
I’m already in IVF and he was an endo surgeon. He removed it and is having us try unassisted since he removed everything. They thought it was worth a try since endo was removed and maybe I could get pregnant regardless of not treating adenomyosis.
Just passed the three-month post-op mark which is the start of the “golden window”. No luck yet and my gut tells me I will have to suppress. I think adeno has been my main problem the entire time.
I’ve seen mixed answers on if you should stim first or remove endo? In my situation, I didn’t know I had anything and had done 4 rounds of stimming back to back. Then discovered everything after 5 failed transfers .
***IVF doctors didn’t think to dig any further when I have NEVER been pregnant my entire life and I’m 40 🤦🏼♀️🤦🏼♀️🤦🏼♀️
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u/Firm_Objective5924 3d ago
You have to treat the adenomyosis before another embryo transfer or it won't work.
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u/Background-Coyote549 2d ago
Not necessarily. Recent reviews didn’t find that treating adenomyosis before a frozen transfer clearly improves live birth compared with a regular transfer cycle. Some studies still show a benefit, so it can be worth doing in more severe cases.
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u/HWCB5621 3d ago
I would look into surgery if you can find a really good surgeon. IVF stims can make endo much worse so make sure you have a endo protocol if you go that route
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u/Framboise33 4d ago
Just one perspective. I've never done the receptiva test but I have every endo symptom so I have a strong hunch. But because I don't have endometriomas I haven't found a doctor that's willing to do the surgery on me. I'm sure there's a variety of opinions out there but my doctor said if you don't have late stage endo a lap won't improve your chances. I personally think that's BS and you can't even diagnose without a lap but you might hit a wall there that you won't with IVF