BSGE criteria hell
I found out, after waiting months since my referral, that the BSGE specialist endo centre in Glasgow rejected it. It was gynae who put me forward for care there as they deemed my endo history too complex for them.
I had endo removed from my bladder three and a half years ago. It was on the cusp of being DIE, literally by the tiniest amount. That tiny margin was all that prevented me from having to have my bladder resected. My bladder symptoms are coming back rapidly. I had also had DIE elsewhere.
In addition I have severe symptoms of thoracic endometriosis (thankfully no longer coughing up blood, but that can cease the longer it goes on). A very probable plaque of endo was identified (rarely happens) on an MRI. It was agreed by a cardio thoracic surgeon that there is very likely a large lesion on my diaphragm. I was to have VATS surgery, but for financial reasons mainly I was forced to pull out.
So, without die hard proof of extra-pelvic endometriosis, and no stage 4 history, I don’t meet the criteria for BSGE care. But I’m too complex for gynae?
Does anyone have any advice? I’ve checked the NICE guidelines and it does appear I’m falling between the slats here 😭😭😭