Help please : Hi all, I’m new to... - Endometriosis UK

Endometriosis UK
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Help please

DeeEndo
DeeEndo

Hi all,

I’m new to Healthunlocked so hoping you can offer some support and info.

Been diagnosed with stage IV endometriosis since last September and have had surgery in December and again in March. Unfortunately I only found out recently that they were not able to remove all of the endometriosis in my last surgery as my ovary is attached to both my uterus and bowel, which apparently involves a whole other surgery team. Which also seems to be getting worse at a considerable rate.

My main goal is to try and conceive rather than have more surgery, which was agreed by my consultant, as this will only affect my fertility for a longer period of time. Supposedly the first three months after my surgery were my ‘best chances’ and they have now said that to give it another three months and then go for IVF (though I do not get any IVF funding on the NHS in my area). We have been trying to conceive since December 2016 with no success.

Has anyone got any IVF success story’s with stage IV endo?

Would love to have some positive news as it’s all been a bit depressing recently.

Thanks x

6 Replies
oldestnewest

Hi DeeEndo I am also new to HealthUnlocked, but I signed up to spread a bit of positivity so hopefully I can give you a bit of comfort.

I was diagnosed with stage IV endometriosis in 2012 after 15 months trying to conceive. I had massive cysts on both ovaries as well as bowel adhesions etc etc. Consultant advised us to go straight to ivf post op as we had zero chance of conceiving naturally. But while I was waiting for the operation I got pregnant. So number 1 positive message - it can still happen even with stage IV endo.

Fast forward a couple of years and a daughter later, my endo progressively worsened and I had two laparoscopic surgeries in 2015 and 2016. Unfortunately although these helped my symptoms they significantly damaged my ovarian reserve, and an nhs ivf cycle in 2017 produced no eggs. At this point I was really low, as I desperately wanted a sibling for our daughter. After doing some research, I came across natural ivf, which has low success rates but can be better suited to dodgy ovaries like my own. Without boring you with all the details, I am now 26 weeks pregnant with baby no.2. So that is my second positive message - ivf can work with stage IV endo.

Final piece of advice would be to not be afraid to challenge the doctors or seek a second opinion. I have seen a few different consultants over the years, and some of them told me to just give up and accept I would never have kids/only have 1 child. I'm glad I didn't listen to them! Xxxx

DeeEndo
DeeEndo
in reply to VicsM

Hi Vic,

Thank you so much for taking the time to reply and for sharing your story, it’s lovely to hear a positive outcome from all the pain and heartache that endo can cause.

Definitely pushing my doctors from all angles and am also looking into seeing a specialist at an Endometriosis clinic. Would you recommend anyone?

Thanks again for sharing and congratulations on your second pregnancy, that’s amazing news and also helped hearing your uplifting advice xxx

Hey hun welcome. Sorry your finding it hard I was in your same situation as u I also have stage 4 and was told mine was one of the worse my surgeon has seen so we went ahead with IVF and I’m watching my baby girl now as she sleeps. I hope this helps u to not give up. If u need any other advice u can always message me x

DeeEndo
DeeEndo
in reply to sandy112

Hi Sandy,

Thank you so much for your positive words x

If you don’t mind me asking, how many rounds of IVF did you have? X

Hey hun we got pregnant 2 round after my opp

DeeEndo
DeeEndo
in reply to sandy112

Thank you x

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