Endo & Adenomyosis whilst pregnant (And potentially PCOS)

[planner10]

Hi Everyone 😊

I’m in the early stages of pregnancy (completely shocked but so happy as been trying for so long!).

Just before lockdown I was scanned and they could see signs of adenomyosis. I had been referred to a specialist for this and the Endo (which I’ve had for at least 17 years) as pains had started to worsen again. I was told about 15 years ago I hit the markers for PCOS but they couldn’t see it on my most recent scan (but it was seen all those years ago).

Basically, I’m very nervous about any potential complications and my appt with the midwife isn’t for another 2 weeks.

I’d appreciate any stories if you’ve suffered yourself (particularly from Adeno), and any insights into what you think I should be doing - should I push my GP of hospital into scanning me early (they are aware of my conditions) etc

Thank you 😊

Ps this is my first pregnancy in 20 years

Bump. Anyone please

Hi,

I have Adeno but not Endo - I highlighted it to the midwife in my booking in call and she referred me to the consultant "just to check" as she didn't know what Adeno was (I mean, I get it, it's not as well known as Endo). I had my appt with the consultant today - at 21 weeks - and she said not to worry about the Adeno at all. She said Adeno is much more period-dependent and to think of it as going into "hibernation" during pregnancy.

I'd definitely push for a referral if possible (although I doubt they'll do an extra scan!), especially as you have both. My appt was probably a waste of the consultant's time, but it did make me feel better about it and as though I had been heard.

I'm currently 34 weeks pregnant with both severe endo and adenomyosis - I've had 6 surgeries for my endo and it is deep infiltrating into my bowels and bladder.

I told my midwife about it at my booking appointment as it had only been around 7 months since my last surgery and she said it wouldn't be a problem. I stayed on low risk midwife care until my 20 week scan when the sonographer suggested I see the consultant just so he could review me when I mentioned about all my ops. I saw the consultant but now happen to be under him for raised liver function too. He didn't seem to be concerned about the endo and adeno at all, other than saying labour may be more painful due to scar tissue pulling so he would recommend an epidural and not really an elective csection due to all my scar tissue from previous ops (which is what I was hoping to have).

In terms of the endo pain, I can't tell you what a relief it's been to not have the endo pains I used to have every day. Not having a period has definitely been a godsend as it hasn't fed it. It's only now I'm bigger I can feel it pulling on my bowels and bladder as everything is squashed, but I think that's more my scar tissue not active endo pains.

My advice would be to keep going as you are and then at your 20 week scan just mention it whilst you are at the hospital if it's causing any pain. Remember you can be referred to a consultant right up to due date and if you have pains further on they can refer you. I would say just enjoy having no endo pain for a few months!

@planner10 I should also add (as I'm not sure how far along you are) that I did have an early private scan at 8 weeks to check the position to make sure it wasn't eptopic. There is a slight increase of eptopic pregnancy in endo and I just wanted to know that she had travelled to the right place. This was recommended by my gynae doctor (I see him privately) but don't do it on the nhs unless you have pain and go through your epu.

Hi, I had quite severe Endo before my first DC and had 9 laparoscopies to get rid of it at various sites including on the ligaments of my spine. As the previous poster has mentioned, the most likely issue during pregnancy could be pain from scar tissue if you have also had any operations to remove it. I did have an ectopic pregnancy before my first DC, so therefore also had early scans with both my children to ensure they were in the right place. None of the midwives or consultants I saw were that concerned about my Endo in pregnancy and it was me who organised the early scans privately. I was under midwife care for both pregnancies.

I was fortune that I had my last operation 3 months before becoming pregnant with my first DC. I became pregnant with my second DC when my first was only 9 months and therefore I’d only had a couple of periods inbetween which thankfully seemed to starve the Endo off. I have not had any Endo symptoms for 7 years!

Wishing you all the best for your pregnancy

Thanks everyone for your messages 😊 it’s really helped. I think I will book in for a private scan For just over a week (at 8 weeks) just to make sure it’s where it’s supposed to be 🤞 I’m so very excited! @squashie34 hope the rest of your pregnancy goes smoothly x

@planner10 I think that would be a great idea if you can afford it because then you can rest assured that in regards to any endo risks there may be, you're absolutely fine! Hope you enjoy 9 months of endo free life 😁

Please do update us and let us know how you get on!

@squashie34 thank you! And you too!! It’s strange not getting random, debilitating pains! But I’m so grateful!!

I’ll send an update after the scan, and let me know how the rest of your pregnancy goes x

Hiya. Currently 33 weeks preg with first baby and 20 year history of endo, adeno and salpingitis. Was told for years would never get preg - only one working ovary and that one was 20% plus salpingitis would kill any egg fertilized but here we are!
Found out when i was 5 weeks gone - suspected ectopic so was in and out of EPU for 6 weeks being monitored. Started getting horrific pain after 7 weeks and for the next 6 weeks was high on painkillers and turns out was all my adhesions tearing from the endo. Never felt pain like it 😩 worse than any endo pain i’ve ever had and mine was pretty awful.
However pain subsided but then the sickness started and i was admitted for hyperemesis so been quite a journey! Been scanned on and off since5 weeks and now at 33 baby is normal size and growing as well as “normal”. Hoping won’t get any further complications and now discharged from consultant - going for a home birth all being well!

I have endometriosis and PCOS confirmed but I feel like I may have adeno too.

I was referred to the consultant in both my pregnancies but I was allowed to continue under midwife care. I had one IVF pregnancy with a hospital water birth and one natural pregnancy with a home birth.

I had bad cramping and sometimes bleeding in the first trimesters but it stopped by about 8 weeks.

I had early scans because of the cramping and to rule out ectopic which is apparently a greater risk with endo. So these were just done by me presenting at hospital in first trimester when badly cramping and/or bleeding. This was done before I even had booking in with the midwife.

With regard to the PCOS there is a greater risk for gestational diabetes. I put more effort into tracking my carbohydrate intact in the second pregnancy and I felt much healthier and more comfortable for it.

I found the births not as painful as these conditions so that was good as didn’t require any type of pain relief.

I will say though that I did lose a lot of blood at the end of the delivery and with the second my midwife was quite concerned. I have found this means they wanted to rush me to take the shot to deliver the placenta. I did still get delayed cord clamping though.

When my babies were born I found that they gained weight even better when I managed carbohydrate intake as PCOS can affect milk supply.

I hope you have a healthy pregnancy and delivery too.

@mamaison thanks for sharing that, it's really interesting to hear what you said about the pain not actually being as bad as some endo pains. I did wonder whether the contractions might be slightly more manageable for endo sufferers as to be honest most of my periods feel like I have contraction pains for the first two or three days! Not that I know what a contraction is, I just imagine that's what it's like 🤣

I found the tactics I’d developed for dealing with period and ovulation pain really helped! Only problem was, I had got so good at dealing quietly with bad pain that the midwives never believed I was in active labour and were shocked when I was ready to push!