Endemetriosis/Adenomyosis 2nd Trimester Misscarridge risks - help!

[AA9462]

I’m currently 11 weeks 3 days pregnant with my first child after one previous loss. I’m 30 years old, and have suffered with stage 2 endo and suspected diffuse adenomyosis for the last 5 years. I never thought I’d be able to conceive naturally and I’m still in shock, but I can’t find anything but negative statistics online about 2nd trimester miscarriage risks in people with endo/adenomysis.

I am on 800mg progesterone up until 16 weeks and have taken it upon myself to take baby asprin every day 75mg as I’ve don’t a lot of research into endo/adenomyosis and have read it can help blood flow.

my biggest concern is my midwife is not hugely helpful and has no idea what adenomyosis is but has ‘suggested’ I stop asprin… anyone who tells me they don’t know what my disease is then tries to advise me something immediately irritates me because how on earth can you know what’s best for me, if you know nothing about my condition?!?

I guess I’m looking for success stories, advice or any information on what the likelihood of MC is in 2nd trimester for someone like me.

thanks x

I have adenomyosis and have been told it’s likely I have endometriosis. I didn’t know until after my pregnancies, but looking back, I had been having symptoms for years, definitely lots before my second pregnancy, milder ones before my first. I stupidly just ignored it and took lots of painkillers and put up with heavy bleeding, pain etc.

I have been pregnant twice and both of my pregnancies resulted in a healthy baby, one born at almost 40 weeks and one at 41 weeks.

I did have some very light bleeding in my first pregnancy at about 9 weeks but was checked at hospital and all was well. The rest of that pregnancy was text book.

Then in my second pregnancy, I had a lot of pain from about 25 weeks, to the point I felt something could be wrong, but no bleeding and no other issues. I used to have to rest, put my feet up and it would calm down after a few hours. I think because I didn’t know I had adenomyosis at the time and likely endometriosis, I didn’t worry as much as you probably will because of the reported risks. BUT, my babies were fine, now a teen and adult.

The gynaecologist who diagnosed my adenomyosis and likely endometriosis a couple of years after my second pregnancy, believes the pain I had in my second pregnancy was probably due to the adeno/endo but said I could try to conceive again if I wanted more children. We were happy with two though so decided not to and I was offered a hysterectomy but still haven’t had one more than 10 years on.

I’m not sure about aspirin, I didn’t take it as obviously I wasn’t aware I had the conditions and that it could potentially help. Could you try paying to see a private gynaecologist if that’s financially viable for you, as mine was very clued up in both adenomyosis and endometriosis, as I’d expect, including in pregnancy. Or ask your GP to be referred to someone on the NHS, presuming you’re in the UK, who can actually give advice as your midwife doesn’t seem to know anything? I’m not sure how long it would take to be seen on the NHS though with waiting times as they are. I feel you should be getting some advice and reassurance not just left to try to figure it out and worry.

I really hope that all goes well for you like it did for me.

I have endometriosis and adenomyosis and am 10 weeks pregnant with my second. I also had an ectopic pregnancy a few months ago which was likely due to my endo.

For me conceiving has always been difficult with my endo and adeno, the pregnancies themselves have been straightforward, at least so far with this second one. My first pregnancy was very straightforward and I gave birth at 41 weeks. I've been under private consultant care for both my pregnancies and my current consultant also specialises in endometriosis and adenomyosis. He has prescribed me progesterone twice daily until 12 weeks but has never mentioned aspirin.

Are you under a team for your endo/adeno that you could discuss your concerns with? I've never heard of an increased risk of miscarriage in the second trimester and I'm on a lot of forums around endo/adeno and have done a lot of research around the conditions. My own understanding is a difficulty to conceive, poor egg quality and a slightly higher miscarriage risk in the first trimester but not the second trimester. And obviously a higher risk of ectopic which unfortunately I experienced.

And I know it's frustrating how little is known about both conditions, particularly adenomyosis.

Good luck with the rest of your pregnancy, I hope it all goes well!

Hi OP try not to worry too much, I'm older but had two baby's full term with stage 4 endo. It was harder to conceive but they both stuck tight.

Hi @AA9462 congratulations!! im afraid I don’t have any advice re your question as I’m pregnant with my first and I’m 11 weeks and 3 days too! I also have Adenomyosis so am keen to chat to others about their experiences of pregnancy. Mine was conceived via ivf as I have have blocked tubes. I asked about aspirin at booking appointment too and midwife said not to take it. I’ve also been under a fertility specialist for several months (although not anymore obviously) and she never mentioned aspirin to me, I might have asked but I can’t remember. I am taking Cyclogest progesterone pessaries and Lubion injections so perhaps with this they don’t feel it’s necessary?
For those who’ve gone through pregnancy with adeno I wonder what your experience was? I woke up the other night due to cramp/pelvic pain (though not as extreme as in the past) and it freaked me out. I spoke to EPU yesterday and they weren’t worried (though asked me to keep an eye) they also said it could be from the increase of relaxin hormone in my body and the baby is likely moving either from or to (can’t remember what she said) my pubic bone? She also said that of course Adeno doesn’t go away in pregnancy. I just wondered what other people’s experiences were and whether they experienced much pain in pregnancy? At this point I’ll take anything I’d just like to prepare myself as much as I can and try avoid total freak outs! Easier said than done e I know….sorry long message, I’m just so pleased to have found others who have gone/are going through this!🥰

Hi, I have adenomyosis. I was diagnosed around 3 years ago. I had 2 second trimester miscarriages back in 2010 and 2011 but we never had a reason for sure what caused them... we thought incompetent cervix and mthfr mutation so I was put on the baby aspirin and told when I got pregnant again I would be put on clexane injections for the whole pregnancy up until 36 weeks and then also have a cervical stitch put in at 13 weeks and taken out at 36/37 weeks. They did this and I was blessed with 2 more beautiful children... I always wonder if it was pot luck that those pregnancies worked out or if it was because of the treatments... regardless I am so thankful that we did it and they survived. I am not a medical professional so dont want to advise you what to do but it seemed to help me at the time. (Also not sure if I had adeno at the time and just wasnt picked up or if it just developed in the later years)

I didnt know i had focal adeno with my second. My experience was normal at first, then braxton hicks cramping from 32 weeks onwards, thought I was going in early labour every other day. Even midwives though it but then it would stop. was sent home every time I just dealt with it in the end. Went all way to 39 week 4 days with all these cramps. Then went zero to 100 fast! She was out within an hour and half. I think it was to do with all these cramps I experienced. Why it was so fast. But I definitely definitely had worse pain than my first. I didnt have time for epidural and gas and was in too much pain to even think about sucking in gas and air. I felt like the next thing that will happen is my soul leaving my body. Nothing could be more painful than this. I had my first labour to compare to so I knew it was different. It was that bad the contraction pain that I felt nothing when she was coming out. No ring of fire nothing. Ever since its been 4 years and my uterus has been really sensitive in everything. Cramping during ovulation, cramping after unprotected sex, severe cramping during periods. Everything is sensitive now when it comes to my uterus. Had miscarriage 2 months ago. At 4 weeks so very early. (Tested 6 days early) but again cramping started 2 days later. Then miscarried at 4 weeks 2 days. Now I'm pregnant again. I tested 6 days early again! So I'm really nervous but atleast i know what to expect this time. If the pregnancy is successful then its labour that scares me the most but I will try and plan better this time.