Managed to conceive, despite stage 4 Endo and 12cm cyst. Now 21 weeks. Doctors not sure about operating or not whilst pregnant.

[lisalovescake]

Doctors have known about this cyst since July 2017 and I've been passed to three different doctors because of extent of Endo. Was waiting for op to remove stage 4 Endo adhesions and Endo on bowel plus cysts. Ok would have been around January to April 2019. I was told to not give up hope of conceiving and I got my miracle in July!!

Now I'm told maybe need to have the surgery now and there is a risk of miscarriage if I go ahead and if I decide not to then risk of rupture or torsion and possible emergency surgery if very bad which if past 30 weeks would be more risk to baby they say.

I've read positive stories for both options. Just wondering if any of you have experience if this good or bad please..I need to hear them so I can weigh it all up ASAP.

At present remaining hopeful that I'm not in that much pain and feeling healthy so maybe so could be like some of the ladies I've read about who managed to have baby safely without any effect on cyst....💗

Thank you all xx

[applebird]

Who told you you need to have the surgery now? Were you at a&e or scheduled consultant appointment? Did they measure the cyst, has it grown?

Personally I have not had much bother with cysts, but I had extensive endo and a focal adenomyoma needing major surgery prior to pregnancy and six months after birth (when breast feeding) was taken off the list as the adenomyoma/endo was not visible on internal scan and endo symptoms receded.

That's why I was wondering if they were basing this urgency on current pathology or something that was visualised before your pregnancy?

[lisalovescake in reply to applebird]

Thanks for your reply. I had to go to A and E last week with the pain. I was kept in overnight. They were consulting with eachother over doing the op then but let me go home as pain subsided again. Then I had an appt with consultant yesterday and they said it's my decision if I want to continue with it. It hasn't grown but hasn't shrunk yet either. They just kept mentioning chance if twisting or rupture further down the line which then an op at that point would be more risk to baby. Im currently thinking not to do op and hope for the best xx

[applebird in reply to lisalovescake]

Ok, it it hasn't grown then that's good and potentially could shrink as pregnancy progresses, you're due April?

Personally if it were me I would have private consult with endo specialist and move to private care or see if NHS can monitor you more closely. Don't let a general gynaecologist touch you without them speaking with your obstetrician and endo specialist would be my thoughts on it.

[lisalovescake in reply to applebird]

Thank you. They're saying at the moment it's my decision since the pain has subsided. I am on waiting list for op with specialist Endo surgeon since before pregnancy but havnt seen him yet as that centre is further from the hospital I will give birth at. I have asked them to contact that surgeon and will ask again when i go to urgent appt at local hosp

[Sarahlou01]

Are they keeping an eye on the size of the cyst with scans? I have stage 4 endometriosis and have an endometrioma on my left ovary which has actually shrunk whilst I’ve been pregnant xx

[lisalovescake in reply to Sarahlou01]

Thanks for reply. If you see my reply above too. I havnt had any extra scans just one when I went into A and E last week which showed no reduction but no increase x

[ccsmith]

Oh gosh what a horrid decision. I had a large endometrioma which was due surgery and I got my little miracle. I had pain during my pregnancy but nothing horrid. I had an emergency c-section as my daughter was in distress and I was lucky the surgeon was endo trained and removed the endometrioma and what endo he could find. My insides were a mess and it did cause my monkey to be little and my placenta deformed but I now have a beautiful 7 year old girl. Good luck with whatever decision you make. Xx

[lisalovescake in reply to ccsmith]

Thanks so much. Was your daughter in distress because of cyst? They told me yesterday they won't try to remove anything if I have a C-section. If thought maybe they would too. X

[applebird in reply to lisalovescake]

The c-section is major surgery and pretty risky so enough to be getting on with at the time - and enough for you too as you're lying there conscious! I had my wee boy via caesarean as back to back.

[ccsmith in reply to lisalovescake]

I think she was in distress as my insides were damaged and the placenta was too short. I don’t think the endometrioma affected the pregnancy other than being large & causing me some pain. I don’t think they normally do much at c-section but my surgeon specialised in endo and I think it was all stuck together!