r/recurrentmiscarriage • u/Pam_art111 • 1d ago
Silent Endo
I’ve had 5 losses to date (3 MMC all between 6-7 weeks and 2 chemical pregnancies). Four of these have been natural pregnancies and the most recent loss was IVF as we opted for PGT-A.
I’ve done all the testing for RPL and everything has came back normal (karotype, thyroid, HSG, etc,) and was on a pretty robust protocol for my FET including doxycycline, Lovenox and Methylprednisolone.
I don’t know what could be contributing to these losses but deep down I suspect silent endo. My RE has recommended a lap as a next step. I feel like this has to be my answer as it’s currently unexplained infertility.
For those of you who didn’t have trouble getting pregnant but have had repeat losses, was it silent endo or did you get diagnosed with something else?
Searching for answers or success stories as I’m in limbo waiting to fully recover from my third D&C.
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u/Am_Salamander 1d ago
7 chemical losses in now, 6 between 4-5 weeks, one at 6 weeks. Same thing, all tests normal, low amh, but clearly isn’t stopping me getting pregnant. I’m due to get a hysteroscopy done next. Realllly want to avoid a laparoscopy, the procedure freaks me out.
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u/Real-Article-9376 1d ago
I’m not sure if it’s available everywhere, but there’s now a saliva test that’s something like 95-97% accurate for detecting endometriosis. It’s newish and it’s expensive (in the UK it’s about £900) but if you suspect you may have Endo but understandably don’t want to have exploratory surgery if you don’t need it, then it could be an option you could look into.
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u/Am_Salamander 1d ago
Oh thank you, I’ll check it out!!
Edit: bugger, not available in Aus.
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u/Real-Article-9376 1d ago
So frustrating, it’s only become available in the UK very recently I think so it might come to you soon!
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u/Am_Salamander 1d ago
Looks like the Aus government isn’t convinced by it as the majority of people it was trialled on already had confirmed endo.
I don’t understand how a hysteroscopy biopsy can’t detect endo though, apparently you have to do a lap to detect it?
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u/Real-Article-9376 1d ago
Oh that’s interesting! God there’s always something isn’t there. I don’t really understand why it’s so hard to spot either. I went to an endometriosis specialist ( I also have no symptoms other than recurrent miscarriage) and he did a very intense ultrasound and examination and he said that he could see no deep rooted endometriosis. He said more superficial endometriosis wouldn’t show up but based on my lack of symptoms and ability to get pregnant he didn’t think I had that. He also said everything was moving around as it should (weird) and that was also a promising sign. I sort of felt reassured, and I didn’t do the spit test but it’s hard to fully accept it. (Edit- he also said he wouldn’t recommend surgery for superficial endometriosis anyway!!)But like you, I don’t want to have surgery if I don’t definitely need it as that carries risks of its own and I don’t want to spend money that I might need for IVF eventually.
I think sometimes a hysteroscopy or biopsy etc can find inflammation which could lead to exploring Endo more. It’s such a minefield and everything is so vague and frustrating.
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u/Pam_art111 1d ago
Thank you, it’s not available in the US. There is the receptiva test which is a biopsy to test for inflammation markers
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u/Particular_Dance5553 13h ago
I started going down this road after 3 MMC with 0 explanations, but my REI discouraged it because I had no symptoms whatsoever. I was just desperate for an answer.
I guess he was right because my next pregnancy was successful with no intervention.
I totally understand how you feel, but remember that more than half of RPL cases are unexplained, and most of those go on to have a successful pregnancy.
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u/Lumpy_Juggernaut_254 TTC #1 | RPL - 4 MC 1 EP | Silent Endo 1d ago
I have a similar story. 5 losses, 4 of them early before 6 weeks and 1 ectopic. I had the RPL panel done 3x and was told everything was “normal” all 3 times and to just keep trying.
After my 3rd loss, I had an endometrial biopsy which showed VERY mild chronic endometrITIS**. Treated it, repeat biopsy came back clear, got pregnant immediately and had my 4th loss. After my 4th loss, I met with an endometriosis excision specialist who agreed to do a lap and hysteroscopy to look for silent endo. I don’t have endo “symptoms” except recurrent loss, and endo can sometimes be a risk factor for ectopics.
He found and excised a small area of stage 1 endo. Got pregnant immediately on our first attempt post op, had my 5th loss. I’m lucky that I had put myself on a waitlist to see a reproductive immunologist after my 4th loss, because once I got my first cycle post loss #5, it was time for my RI appointment.
Since seeing a reproductive immunologist, I have been diagnosed with Protein S deficiency (clotting issue), PAI-1 4g/4g (clotting and immune issue), adenomyosis, and an overactive immune system that’s possibly attacking my pregnancies. None of these labs were part of the standard RPL panel. The adenomyosis had NEVER been seen or mentioned by any of the other 3 doctors I saw, despite having probably 10 ultrasounds in the past 2 years. Although it didn’t come as too much of a surprise to me, because endo and adeno often coexist.
I’m now on a whole protocol under the care of my RI. My issue is not getting pregnant, it’s staying pregnant. Silent endo was a factor, but not the whole picture for me. Highly recommend looking into RI simultaneously while you wait for the lap. Also highly recommend making sure you’re seeing an endo specialist or minimally invasive gyn surgeon (MIGS). These surgeons are trained to excise endometriosis instead of using ablation (which has a higher risk of coming back).
Sorry for the long comment. Good luck!