Pregnant with Endometriosis.. can anyone share stories?

[Minniemee]

Hi lovely ladies,

I am currently 6 1/2 weeks pg with my first child, having had quite an extensive op in June to deal stage 4 endometriosis on my bladder, bowel, right ovary and utero sacral ligaments. The surgeon also believes I have adenomyosis due to a thick uterus. We were over the moon when we found out as I thought it may be a long, hard slog TTC. However, I've had terrible pains so far, particularly on the right hand side where my endo was on my ovary.

I was told initially by my GP that the rate for eptopic and miscarriage was high as 'inside there is still very sticky and rough due to scar tissue' and yesterday spent the after in the EPU where they gave me an early scan. Thankfully the jellybean (as it is in size now!) managed to get itself to the right place and has a good heartbeat which was such a relief. However, talking to the doctor about what the pain could be, she told me that it could be very possible that as baby grows it is going to pull on all the adhesions and scar tissue and could cause a huge amount of pain especially as baby gets bigger.

I'm just looking for anyone who has had success stories with their pregnancy in stage 4 endo.

Will i be consultant led or midwife led?
Is there still a huge risk of miscarriage now all is ok on the 6week scan?
Did any of you go full term and deliver naturally?

We want to be so excited about baby but I'm worried I may get carried away of odds are not stacked in our favour.

Thanks so much x

I'm 14 weeks at the moment and I've had surgery for endometriosis. Prior to pregnancy I had pain in the left side of my abdomen which has continued throughout. I think I've got adhesions/ endometriosis on my bowel because it seems to be related to that area "stretching". (Sorry if TMI)
I'm aware I'm not that much further on than you but I've not had any issues at all on any scans so far (I've had 4 - 2x private - and I'll stop now haha) and baby is healthy from what we can see.
I really hope you continue to have a healthy pregnancy!
Regarding whether you will he consultant led care - I don't think so but maybe someone else can chime in on that

@thosethreewords thank you so much for your reply - I'm sorry to hear you have pain too, Endometriosis really does suck sometimes! I too have endo on my bowel and lots of digestive issues (even before I fell pg) so I can sympathise. Have you tried to alter your diet at all? My surgeon recommended a reduction in gluten so going to give it a try.

Wishing you all the best of luck with your journey for a happy healthy baba! X

I’ve had two successful ivf pregnancies following multiple surgeries for stage 4 endo. I felt great during both pregnancies, with far less pain that I usually get. First time round I did get a lot of bladder symptoms, and when I had my c section it was found my bladder was very adherent to my uterus. They dissected it off and next time round I had no problems. First baby born at 35 weeks due to placental issues unrelated to the endo. Second baby planned section at 38 weeks. Both times under consultant led care but not due to the endo. Can’t see a reason why you wouldn’t be ok with midwife led care if that’s what you want.

I have a diagnosis of adenomyosis and endo and have multiple ops for it. This pregnancy I have been diagnosed with placenta previa which may or may not have been caused by the endo. It is one of the risk factors but you can't really tell for sure. I was midwife led until the placenta previa diagnosis and nothing was ever said about my endo.

I'm 10 weeks pregnant and between weeks 5 to 7 had a LOT of pain, but it's calmed down massively since then and I'm keeping everything crossed that it stays that way. I've not had my booking in appointment yet so don't know if I'll be under the care of a consultant or the midwife team but at my last surgery, where we discussed conception, there was no mention of needing further medical supervision due to the endo.

I had stage and had surgery like yours 4-5 years before conceiving via IVF, it was never mentioned as being an issue in my pregnancies and didn't cause me any problems either, I was consultant led as it was donor egg IVF and I was on a lot of extra meds, first baby induced due to being big and EMCS, second baby conceived naturally ELCS

Thanks so much for your responses everyone - it has made me feel so much better knowing that for many of you the pain has gotten much better eventually and that I won't feel like this forever!

May I also ask for any of you that have given birth natural with endo, was it unbearably painful with all of the pulling on the adhesions?? Obviously I know it's not pretty anyway, but hopefully you catch my drift!

X

Hey @Minniemee im aware you’ve had your baby by now but i too have stage 4 endo and im 9wks 2d today and having a little pain on my right side aswell as struggling to pee sometimes in the day due to my uterus blocking my bladder i think. Im slightly more frightened about birth and my insides stretching out more because of the scarring inside. Hows was it for you?

@Lexi21 no worries at all! Yes I am mummy to a gorgeous 4 month old baby girl now 😁 I have to say once I got past the first 12 weeks I felt so much better and no noticeable endo pains for the rest of my pregnancy!

I did however have a bit of a tricky Csection due to scar tissue on my uterus which caused a big bleed, so I would say if all goes well with your pregnancy I would recommend attempting vaginal delivery - I thought an elective Csection would help with my endo but turns out it was a bad decision!

Best of luck lovely xx

@Lexi21 I also have endometriosis, although they aren't sure of the severity (booked laparoscopy but then I got pregnant naturally so it was cancelled!)

I've also had some pretty severe pains in my ovaries and uterine cramps. The midwife said this was normal, but of course if you're worried do go and get checked out!!!

Sorry, not much info I can give only sympathy - I'm also terrified of birth and considering an elective C-section as period cramps tend to make me pass out from the pain. Good to know re scar tissue though, that has been a concern for me. @squashie34 did you recover okay?

@kallia I had my elective Csection due to severe tokophobia of giving birth vaginally and thought my endo would in some way make the vaginal delivery go wrong- turns out it was the other way round 🤦‍♀️ The consultants actually said as much but I was so wrapped up in my fear of a vaginal delivery I was adamant that I wanted a Csection so they agreed.

As I mentioned, it really didn't go to plan as when they opened me up they discovered that I had a large patch of endo on my uterus where they needed to cut to get my little girl out- when they cut this I bled out which meant they needed to get her out at lightening speed so that they could stem my bleed. My little girl ended up in the NICU for 3 days because she had fluid on her lungs where she had no time to expel this due to the speed she was pulled out. I needed a blood transfusion after surgery. I'm not for women sharing 'horror stories' about birth, but what I can say is that although on paper this sounds scary and traumatic it really didn't feel it- the doctors were in control at all times and for me and my anxiety that was still preferable to a vaginal delivery where I really didn't know what was going to happen. It's also very unlikely to happen to you- I've had 6 previous endo surgeries so my scar tissue is extensive.

My recovery has been slow but that's my fault - I tried to get back into things too quickly as I felt good and that my scar was healed and started lifting the car seat, driving and going out after 2 weeks but my scar then got infected - it was my body's way of telling me to slow down. But we are fine now, although it does still feel numb there which is weird!

I hope that helps - a lot of women with severe endo say the contraction pain really is no worse than their monthly endo pain so in a way you could be more prepared than you realise!

Oh thank you so much that's amazingly helpful!!! I haven't had any surgeries so I'm hoping scar tissue won't be an issue. I completely see what you mean about it being preferable to a vaginal delivery despite the complications. Something for me to think about. Thank you :)

@squashie34 ah how lovely! ☺️ It took me 2 years to conceive this little one and so far my symptoms are strong, i have a feeling im having a little girl aswell since my morning (all day) sickness has been terrible. Have a scan this saturday (10wks) to check everythings ok as i had a mmc 2 years ago. Im hoping my symptoms will die down after 12 weeks too! Ok ill definitely try to have a vaginal birth then, its not the pain im scared of but the idea of tearing that really turns my stomach!

@kallia No way! That happened to me last time, i was due to have my lap and i found out i was pregnant 10 days before so i had to cancel! And this time round i got referred by my doctor to a fertility specialist and the forms came through the post the same day i found out i was pregnant!
Thats so awful that you pass out from the pain the worst its been for me is hyperventilating on all fours on the floor with my husband running round like a mad thing not knowing what to do bless him! Hope this pregnancy goes well for you!

Hi I have grade 3/4 endo had two laps 1st lap in 2016 then had first son 2018 then 2nd lap again 2019 pregnant with 2nd son now 20 weeks, 1st preg had a lot of round ligament pain which I put down to scar tissue, had a virginal birth (he was only 28+2, so very early) this time not had as much pain but I've been mostly on modified bed rest but plan on virginal birth again. I was always told pregnancy helps endo symptoms as it gives ur body a rest and have 9 months with periods 👏👏