Endometriosis UK

Support and Guidance

I was diagnosed with Endo aged 37 after having 2 children in my early 30s (both by C section). I never had problems with my periods or fertility. I had private medical ins at the time and was offered a hysterectomy very quickly, I went for a second opinion as I hadn't tried anything else. I had a mirena coil fitted which worked well and I've had 3 since. All was well until 2 years ago and I started with back pain. I didn't immediately associate it with the Endo and neither did my gp. I had CT scan no issues. I persevered for quite some time, keeping a diary and realised it was a cycle thing (even though I have no periods). I insisted on a referral to Gynae (at a local BSGE centre) and they did ab MRI. This wasn't interpreted correctly and I was referred back to GP. I was desperate by this point as the pain and lethargy were terrible. I insisted on going back and insisted on a lap. At 51 they were very dismissive saying it couldn't be the endo. Low and behold they went in and its a mess - frozen pelvis, they can't see my left ovary its in a mass. My uterus is stuck to my rectum and pouch of douglas. They said its too bad to do surgery / hysterectomy. They've tried prostap, amtriptolene, coccodamal, hydrocodeine and have just given me another epilepsy drug (nerve inhibitor) - nothing is working. I've been back to the GP and asked for a second opinion as I cant carry on like this. The lead at the BSGE centre is now asking to see me as I wanted a second opinion. I really need help with working out the questions I need to ask as I think they are going to do something surgical at last. Is there a lead BSGE centre?

Thanks in advance for any help.


1 Reply

Good luck with your next appointment. Maybe try to get over how much pain you are in and give them examples of what you've had to stop doing or altered

I'm on tramadol for pain relief which does help so maybe also worth asking for that so you have a bit of strength to keep fighting.

It is possible they've asked you to be on prostap to reduce endo to allow further surgery to go ahead - maybe ask about that?

Best of luck


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