endo and cysts

[Laurenk96]

sorry in advance for the long thread. ive had issues starting from around the age of 12/13, i was first diagnosed with ibs at 14 after having a colonoscopy and endoscopy due to ongoing stomach pain and bowel problems (crohns disease runs in the family) then from the age of 16 i was having problems when having sex, bleeding and horrible pain after sex. i had a laparoscopy and they said i had adenomyosis, i fell pregnant at 19 and didnt have too many problems for a year or so, then i started getting the pains after sex and heavy periods again. my periods now are always 7-8 days and extremely heavy, i have to wear both tampons and pads and at my heaviest will need to change every 30-45 minutes. i had an internal scan 3 months ago and they found a few cysts and also saw there had been a ruptured cyst, the doctor also suspects i could have endometriosis. im waiting to see a gyno but have been told theres an 8 month waiting list. i currently cannot have sex due to the excruciating pain. i also get pains even when im not on my period. aswell as that pain i also have trouble with bowel movements, sometimes i feel like i really need to go but nothing will happen, and when i do go itll hurt and sting. sometimes i can deal with it but other times it can be unbarable and i really dont know how im gonna be able to wait 8 months for this to be sorted! has anyone gone to a&e for endo pain? is it worth it or will it be a waste of my time and nurses time?

I think endometriosis has been the root cause of all you describe all along (some women also get misdiagnosed with IBS when endometriosis is the cause). Deep pain during sex is a marker too for endometriosis to be present and it can also cause heavy bleeding.

I would be contacting PALS here (patient liasion) in the hospital and your GP. You should not have to wait another 8 months to be seen, you need medical attention sooner than this.

If finances allow, can you see a gynae as a private patient for an initial consultation?.

Thankyou, I’ve never heard of pals before I’ve just been reading about it, I will definitely be contacting them! A private gynae probably isn’t something I’d be able to afford unfortunately, fingers crossed pals will help

Yes, it sounds like endo.

I have been to A&E with endo pain - what happened was that they ruled out appendicitis as a cause (eyeroll from me, but went along with it) and gave painkillers. It didn't move me along the waiting list. I was lucky that I had PMI through work and could go private. The cost of an initial consultation was £200 - that was 5 years ago.

The Endometriosis UK website is a great resource for support with treatment pathways and so on.