What’s ‘normal’ in pregnancy for women with Endo

[Ginge32]

Hi All,

I’m in the first trimester of my first pregnancy and I am very uncomfortable and experiencing pain and discomfort on par with my pre-pregnancy flares. Safe to say, my endo isn’t subsiding as suggested!

When I have tried to raise this with the midwife going through everything over the phone to register me for my first scan, she dismissed it as if I’d said I’ve just stubbed my toe. I guess I shouldn’t be surprised given the journey I’ve been on to get the diagnosis with endo in the first place.

Can anyone help me with your experiences please?

Did any other endo sufferers feel this way (pain) during pregnancy?

I’m just trying to gauge what is normal in pregnancy, endo pregnancy and when I should be concerned.

TIA xx

[Afrohair]

Congratulations...I’ve been looking for answers to this I knowingly had endo last year I got pregnant sadly it ended in misscarrige at 12.5 week I’m ttc again and I’m in my tww and having endo pain so it’s making me think there is no way on earth I’m pregnant as I have endo pain .the most I had in my last pregnancy was adhesion pain and didn’t really have endo pain but I’ve heard it’s different for everyone and some people do have pain.i know that paracetamol is allowed .also like you my endometriosis was dismissed when pregnant which gives me a lot of regrets if you feel you need extra support please raise it with your midwife again I was told my endo could have caused my loss.is it a natural pregnancy ?did you have a lap?

[Ginge32 in reply to Afrohair]

Thank you for coming back to me and so sorry to hear of your experience xx

I had a lap last August, and they carried out ablation. I have conceived naturally (much to my surprise).

Thank you again, it really sucks being so misunderstood by doctors etc on this

X

[Afrohair in reply to Ginge32]

It really does !I was only just recognising my endo then and was very dismissive of having it but wish I spoke up then my midwife asked if I had any other conditions on the form she fills in .if you fill in any forms I would write it down I will definitely write it down next time I get pregnant good luck with your pregnancy x

[Thecrazypugglelady]

I can honestly say prenancy was so painful for me everytime I sat down I had shooting pains(probably my adhesions) and hurrendous nausea that took ages to go away purely because of my hormone imbalance and it did come with a few scares, however good news was my labour was amazing. I think because when you go through pain like we do you learn to breathe through it etc

Please please do not feel a nuisance though and get everything that your not sure of checked from pain to movement better be safe than sorry a lot of my pain was also water infection related. Go with instinct is telling you and if your not happy with their attitude ask for that second opinion. Most importantly take it easy! Dont stress be happy and get your vitamins in 😊 good look though with everything and congratulations x

[wanwood]

I had some endo-like pain and severe bloating in the first trimester, and my usual problems with constipation (which could be due to RV endo) also continued. (Bloating and constipation are both pregnancy symptoms and an endo symptoms so hard to say which was the cause.) In the second and third trimester I’ve had practically no endo symptoms and it has been great feeling like an endo-free person. I’ve felt some round ligament pain as the bump has grown, which is normal. I know everyone’s different and some women with endo do feel it all the way through pregnancy, but for me it has mostly been a very welcome break from endo. I don’t think there really is one “normal” experience for women with endo in pregnancy.

Endo shouldn’t affect the health of your pregnancy on a day to day basis, which may be why the midwife wasn’t helpful, but previous surgeries and a history of endo will be relevant to the discussion about where and how to give birth. It should be recorded in your maternity notes if you have had laps before, e.g. in the event of an emergency C-section, so they can try to avoid previous scar tissue. You might prefer to be consultant-led rather than midwife-led if you have a history of severe endo, multiple surgeries, etc and are worried.

Taking warm baths helped my round ligament pain and might provide some relief from endo symptoms. You might try TENS potentially? Paracetamol? There’s not much else you can do other than get lots of rest and take it easy. Endo treatment will be out of question at the moment — hormones or surgery are not going to be appropriate in pregnancy. Large cysts tend to get left alone in pregnancy unless they are extremely large.

Make sure to get help if you experience anything concerning that is not normal for you in terms of endo symptoms.

Congratulations on your pregnancy!!! Hope you feel better soon xx

[Gina12345]

I managed to get pregnant through ivf luckily on the first try. Everyone said it’s fine your pregnant now the endo will stop bothering you. They even stopped all my meds on the day of embryo transfer. I found it was not the case and none of the professionals knew anything about endo and pregnancy.

I suffered with all normal endo pain through the first trimester along with all the usual pregnancy symptoms. In the second trimester every kick and movement of baby was agony. Then I struggled with pain when I was working but the pain was quite minor between shifts and baby sleeping. In the beginning third trimester baby’s movement finally stopped hurting and I spent a couple of weeks really enjoying pregnancy. The end of pregnancy was bad I suffered with a lot of problems but I think that was more to do with his size, he was born 9lb 7oz @ 38 weeks.

I don’t want to give you nightmares or make you worry but I couldn’t get any support or any information on what to expect with pregnancy and endo. I was constantly met with “ pregnancy cures endometriosis” and I had no idea what was normal and what to expect.

I’m still lacking solid advice and can only tell you what I went through and I hope it helps even a little.

On a positive note I have an amazing, healthy little boy who’s just celebrated his first birthday (all be it in lockdown 🥺). And as much as pregnancy was so bad I wouldn’t do it again but everything I suffered was so worth it.

[Afrohair in reply to Gina12345]

Congratulations.i never even thought of the baby kicking endometriosis I bet that was painful for you but good it died down.they do say your estrogen increases aswell as progesterone.im lost on what to think now if I were to get pregnant I would always think I’m not if I’m in pain .my last pregnancy ended in misscarrige but I just had weird stretching pains which I think was scar tissue

[Afrohair]

Hope you don’t mind me boosting up your post but I would like to see if anymore people have symptoms in pregnancy I’m finding it incredibly difficult in each of my 2ww trying for a baby cause I keep thinking if I have endo pain I can’t be pregnant this is my second time trying for a baby with endo last pregnancy ended at 12.5 week x

[Ginge32]

Hello everyone, thank you so much for all your feedback. Even the not so positive stuff is helpful because it’s real - and actually a little reassuring for me because I’m not having a great time of it.

I did end up going for a private scan as I was so concerned about the pain and at present everything seems to be as it should for baby.

xx