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.