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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think I might have silent endometriosis?

20 replies

sotif · 26/01/2025 21:44

Posting in AIBU rather than Infertility for traffic (posted there too) and also in case someone who has been successful with IVF, is no longer on the Infertility board, might be able to help!

I’m 30 and have one living child, conceived when I was 26 (my husband was in his early 30s). We got pregnant the first month of trying.

We’ve now been trying for baby #2 for 1.5 years—one year of trying naturally, followed by six months of IVF. My first IVF round ended in a miscarriage at six weeks after a fresh transfer. Since then, I’ve been embryo banking and haven’t done any transfers yet, but I’m planning to in the next couple of months.

Embryo quality doesn’t seem to be the issue: our fertilization rate varies between 80–100%, and about 70% of our blastocysts have tested euploid. My hormone blood tests have all come back normal, and both ultrasounds and an HSG showed no issues.

My periods aren’t particularly painful, nothing that would raise red flags. I just don’t know what else to investigate. My doctor keeps saying EMMA/ALICE testing isn’t proven to be helpful, so I’m at a bit of a loss.

Could this be silent endometriosis? Or is there anything else I should be looking into?

OP posts:
TheFatCatsWhiskers1 · 26/01/2025 21:54

It could be. Endometriosis isn’t always excruciatingly painful, some women only find out they have it incidentally. Have you had a transvaginal ultrasound?

sotif · 26/01/2025 21:55

@TheFatCatsWhiskers1 yes many trans vaginal ultrasounds - they didn't find anything wrong in them. Also a hycosy - didn't find anything wrong there either

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TheFatCatsWhiskers1 · 26/01/2025 21:59

sotif · 26/01/2025 21:55

@TheFatCatsWhiskers1 yes many trans vaginal ultrasounds - they didn't find anything wrong in them. Also a hycosy - didn't find anything wrong there either

You could request a pelvic MRI. if it’s deep infiltrating it can often show up (although it does depend on the expertise of person interpreting it).

Rosieposy89 · 26/01/2025 22:01

I'm 35 and have 'unexplained infertility. We have dd aged 3, conceived naturally after 2 years. We did IVF before she was conceived and 5 frozen embryos now after a failed FET. I strongly suspect I have endometriosis. Periods are fine, but I have flare ups of severe ovulation pain, sex can sometimes hurt. It is asymptomatic in a lot of people.
We are hoping to do another transfer soon but my embryo transfer was a disaster due to cervical scarring so I need to speak to the doctor to see what's what. ERA/EMMA/ALICE tests are on my list if next transfer fails.

sotif · 26/01/2025 22:06

Rosieposy89 · 26/01/2025 22:01

I'm 35 and have 'unexplained infertility. We have dd aged 3, conceived naturally after 2 years. We did IVF before she was conceived and 5 frozen embryos now after a failed FET. I strongly suspect I have endometriosis. Periods are fine, but I have flare ups of severe ovulation pain, sex can sometimes hurt. It is asymptomatic in a lot of people.
We are hoping to do another transfer soon but my embryo transfer was a disaster due to cervical scarring so I need to speak to the doctor to see what's what. ERA/EMMA/ALICE tests are on my list if next transfer fails.

Yes, I've heard ovulation pain is a symptom!

Are your embryos tested ?

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Pancakeparlour · 26/01/2025 22:19

It's possible.

I had trouble conceiving in my 20's/30's.

Spent most of my reproductive life anaemic from very heavy periods but hardly ever any pain (apart from ovulation which was always very painful).

Following a failed uterine ablation in 2023 I requested that I have a pelvic MRI. That returned with a diagnosis of deep infiltrating endometriosis.

I was 50 and had no idea. Gynae says I've most likely had it since my teens.

Ask for a pelvic MRI.

Pancakeparlour · 26/01/2025 22:20

I was also diagnosed with IBS many years ago and I'm sure my dodgy digestive system is connected to the endo.

sotif · 26/01/2025 22:20

@Pancakeparlour did you manage to have a baby despite endometriosis in the end?

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Pancakeparlour · 26/01/2025 22:23

sotif · 26/01/2025 22:20

@Pancakeparlour did you manage to have a baby despite endometriosis in the end?

I did. I went on to have two successful pregnancies.

MumChp · 26/01/2025 22:27

sotif · 26/01/2025 22:20

@Pancakeparlour did you manage to have a baby despite endometriosis in the end?

I have 3.
The doctors still wonder about our third as my endometriosis (and pcos) should make me 100% infertile.
But they weren't easy to concieve. It took us years comparing to friends and family.

creamsnugjumper · 26/01/2025 22:34

Pancakeparlour · 26/01/2025 22:19

It's possible.

I had trouble conceiving in my 20's/30's.

Spent most of my reproductive life anaemic from very heavy periods but hardly ever any pain (apart from ovulation which was always very painful).

Following a failed uterine ablation in 2023 I requested that I have a pelvic MRI. That returned with a diagnosis of deep infiltrating endometriosis.

I was 50 and had no idea. Gynae says I've most likely had it since my teens.

Ask for a pelvic MRI.

Edited

Can I just caveat that with also stage 4 Endo, full wide excision surgery (I had to book) and zero trace on any scan all inconclusive.

sotif · 26/01/2025 22:36

@Pancakeparlour @MumChp
Thank you so much, that's so reassuring to hear!
Can I just ask if either of you had IVF? Was it failed transfers or miscarriages or did it work first time?

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MumChp · 26/01/2025 22:44

sotif · 26/01/2025 22:36

@Pancakeparlour @MumChp
Thank you so much, that's so reassuring to hear!
Can I just ask if either of you had IVF? Was it failed transfers or miscarriages or did it work first time?

No. We did think about after our 1st but we couldn't afford it at that time. We paid student loans. The Scandinavian country we lived in at that money was 100% self funding IVF if you had a 1st child. 2nd born 4 years after 1st.
3rd born 14 years after 2nd very unexpected - doctors say she shouldn't be here.

I have met quite a few IVF babies - don't loose hope. What do doctors say?

sotif · 26/01/2025 22:55

@MumChp doctors say it's "unexplained" and I should just try IVF.
My IVF doctor, the one who did all the retrievals, my protocol etc and is now preparing to do my transfer just says I should try transferring before doing any testing as testing is invasive and within 3 transfers of genetically normal embryos (all of mine have been tested) the vast majority of women would get pregnant. But I don't want to waste those embryos!!

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Chattycatt · 26/01/2025 23:12

Have you ever had your tubes flushed? I have suspected endometriosis and had a pelvic MRI which was completely clear. I then had my tubes checked and one was blocked

WhyDoesItAlways · 26/01/2025 23:33

I have endometriosis, PCOS and lazy tubes all found while having ovarian drilling to try and stimulate ovulation when I was having fertility trouble. The consultant advised I went straight to IVF because in the unlikely event I conceived naturally the lazy tubes would likely cause an ectopic pregnancy.

IVF worked first time. I had some of the endometriosis removed during the ovarian drilling procedure so not sure if that had an effect on the success of the IVF or whether it makes no difference.

Rosequartzz · 26/01/2025 23:48

I have stage 4 endometriosis and adenomyosis and left tube blockage. My first laparotomy was in 2014 and then the 2nd was done with the salpingectomy (tube clipping) in 2021 following hycosy ans I think 2 failed cycles.

I've had alot of failed ivf due to poor egg quality and quantity. When the last transfer of my 9th cycle failed I had a hysteroscopy with Endometrial scratch. I was found to have an infection which I was medicated for 2 weeks, took probiotics for vaginal microbiomes. For this transfer we added aspirin, blood thinners, lubion, progesterone and embryo glue and it's worked. I'm finally pregnant after 4 years and 10 rounds of IVF. Yes I had to ask for most of the stuff I've mentioned for my last round but the Drs weren't averse to any of it.

Wishing you ALL the best for your transfer x

MumChp · 27/01/2025 06:15

sotif · 26/01/2025 22:55

@MumChp doctors say it's "unexplained" and I should just try IVF.
My IVF doctor, the one who did all the retrievals, my protocol etc and is now preparing to do my transfer just says I should try transferring before doing any testing as testing is invasive and within 3 transfers of genetically normal embryos (all of mine have been tested) the vast majority of women would get pregnant. But I don't want to waste those embryos!!

I understand you. I hope you have succes!

sotif · 27/01/2025 21:03

@Rosequartzz congratulations!!
Yes I feel like with infertility you've got to advocate for yourself so much :( I wish it was more straightforward!

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sotif · 27/01/2025 21:04

@Chattycatt I've had a hycosy I think (?) flushes out tubes?

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