Endometriosis - advice needed please

[BEM08]

For as long as I’ve had periods (I’m now 27) I’ve really suffered! Pain. All the time - not just period pains but sharp pelvic/groin pain, pain when exercising and extremely uncomfortable bloating.

I’ve tried so many contraceptive pills and the implant and have always had bad symptoms still or side effects. I’ve always been told to just try something else and that “I have to find the one for me.”

After being on medication for so long I Wanted to stop taking the pill all together and see how I managed..

I think I lasted 5 months and It was awful! I was referred to a gyno, had scans and tests and they’ve said they believe I have endometriosis. The only way to reduce my symptoms is to go back on the pill?!

They won’t do a laparoscopy.. Well they will if I ask/demand one. Apparently its not worth doing it if the pills work enough. Also best to wait until I want kids as I’ll be most fertile after!

Anyway I’ve been left to go back on a contraceptive pill, I take provera to help with the symptoms and pains. Whilst this does help a bit I feel I’ve gone round in circles and not got anywhere. A huge issue with the contraceptive pill is it has completely destroyed my labido. it slightly improved when I took the 5 months off but is now so bad again. I am in a long term relationship and it’s really making things difficult for me. I was prescribed tibolone to see if this would help and it hasn’t done anything at all - they’ve now said to stop taking it.

I feel like I really don’t know what to do.. stay on contraception - have no labido, feel crap, pain etc or come off the pill - be in agony all of the time?! Has anyone got any advice at all please

[Maliky]

Sorry to hear that you are in such pain without the pill, and that the pill is causing you bad side effects. I do have endometriosis, it was diagnosed after several months of continuous pain, and years of urine infections that came every time around my period. I am now on a pill, started 2 weeks ago, and so far, the only two bad side effects I got are a lot of bowel movements and zero libido. The pain is getting better, though.

I understand what you mean and I am terrified about other possible side effects awaiting for me on the horizon. I would have never taken the pill if it wasn't for this condition, which cannot be cured, but it can be managed with either the pill, or surgery (and usually after the surgery they do still put you on a pill, because endometriosis is recidive, so they need to stop it from growing back again). Not every pill works for endometriosis (maybe the previous ones you were taking before having a diagnosis were not the right ones for that) and some pills give us more side effects than others. Obviously it is entirely up to you, what you do. But for me, the pill is actually essential. Although I am not loving the side effects, the pro of not being in agony outweighs the cons. I hope that knowing you are not alone can help x