Experiences with pregnancy and endometriosis

Hi everyone,

I'm just looking for some advice / shared experiences from anyone who has endometriosis and how / if this has affected their pregnancy at all?

Cutting an extremely long story short I have stage 4 endo and it has controlled my life since starting my periods at age 13 🙄 (now 30, pregnant with first child via ivf/ icsi)

My main concern atm is that for the past 6/7 years I have had problem after problem with my back and back pain as it has fused part of my bowel to my muscle wall of my back to the left hand side of my spine. I've had three unsuccessful surgeries to try and separate this bit but have been told by bowel specialist that they can't do it without my bowel tearing and ending up needing a colostomy bag for the rest of my life.

Obviously now that I'm pregnant I'm very aware that all your insides move around to accommodate baby and I'm terrified of the potential pain and tearing etc that may be caused as baby gets bigger.

I did ask my midwife about all this at my booking appointment but she sat staring at me blankly and didn't have a clue so has referred me to a specialist consultant again so I'm on a 4 month waiting list to see him/her (at which point I'll already be 6 months pregnant 😂👍🏼)

So I guess in the mean time I'm just looking for stories of your experiences of pregnancy and endo to understand how it's affected others?

Thanks xxxx

[7AVA]

Firstly, congratulations that all still going well with your pregnancy 😊 - my sister has endometriosis and conceived via ivf after surgery to remove adhesions to her bowel (has to have colonoscopy bag). Obviously all cases are different but her pregnancy was trouble free and she now has a healthy 7 year old. I think there's an endo site on HealthUnlocked you could try asking there too. Hope all continues to go well xx

[C_L_A_I_R_E]

Hi Bibi I understand your worries. I have endo but I had a laparoscopy prior to ivf to remove a cyst on my left ovary. So hopefully free of it now.

I was always told that pregnancy helps to resolve the endo, because It is an estrogen dominant disease. Therefore in pregnancy it should lessen. I'm hoping that this pregnancy will help 'clear up' any endo.

[emmab178]

I guess it's solely going to be a wait and see thing. If you get pregnant again you might get a whole different experience than this time too. Wouldn't it be great if someone did some research into endo to try and figure all this out rather than us guessing.

I'm 30 weeks. My right ovary is stuck to my uterscaral ligament and when i sneeze or turn over in bed quickly it feels like I've been stabbed and the pain is relentless for 1-2 minutes and I'm frozen to the spot in agony. If i jump up and try to walk it prolongs it.

I mentioned my endo to the ivf dr, blank look. Same blank look from the midwife. Mentioned it last week to the consultant and he said adhesions have nerves in them and its probably the stretching but because it wasn't constant and its an unpredicted instant pain we've decided to hold off taking or doing anything.

I asked the same question to the fb endo forum. Most women sailed through pregnancy but a couple suffered. There's an expert endo dr in Oxford who deals with endo and pregnancy apparently she prescribed codeine as no other Drs would. She's my last resort if this pain steps up. But i am an endo warrior and won't let it beat me.

I got random stabbing pains from 2ww onwards but nothing compared to these new episodes that turned up in the third trimester. I too didn't see my consultant till 6 months. This is when growth and everything step up so guess it's their standard time frame.

[emmab178 in reply to emmab178]

Oh and also baby girl is currently breech and has her little feet and toes right on that right area aswell so sometimes the kicks get me too. But those are still so special i will forgive her.

[Hidden in reply to emmab178]

Thank you! It's so annoying isn't it not being able to do anything. My only saving grace is that I now haven't had a period for two months and it's absolute bliss! As normally I'd be passing out and fainting amidst hot and cold flushes in a heap on the bathroom floor! So I'm grateful for the wins! Lol xx

[emmab178 in reply to Hidden]

I had the simultaneous vomiting and diarrhoea whilst uncontrollabley shaking and sweating going got then cold during the first day of my period. I couldn't even speak and practically had to be carried to my bed where i would sleep for an hour and get up feeling fine. When I went to the gp with those symptoms i got the head tilt with 'it's had being a woman isn't it, you can have the pill or try ibruprofen'!!!!!

Unbelievable. No wonder I lost my faith in the medial profession wasn't diagnosed till 37 and that's only because my left ovary and tube became a 7cm endo mass and finally gave them something to look at and think to do something.

I haven't had a period since January. It's marvellous. The consultant the other day told me that pregnancy was the best cure for endo. I don't know how true that is but i did follow it up with 'that's funny as one of your colleagues last year told me that a hysterectomy was a cure so maybe we should keep opinion out of this '. I'm not sure what to think of his comments, we are making more progesterone but there is oestrogen in there too. Scary that this is the bloke that's meant to be looking after me.

They are talking c section at the moment but I've warned them I'm an adhered mess down there as the uterus is also stuck to the bowel. But that wasn't seen in a lap so just off an ultrasound.

They did say my 5cm remaining suspected endo mass looked like it had shrunk. 12 week scan had it about 2cm. Although maybe like fibroids they shrink and grow and no-one knows why.

Hope all goes well with your pregnancy