Hello, this is my first post. I was diagnosed on the fifth of December, with a laparoscopy, after almost two years of infertility - I'd really had to fight for the lap as my gynaecologist had repeatedly told me I 'wasn't a good match' for endo, despite four different GPs suggesting it when I visited them in pain.
As I was coming out of the anaesthetic, the surgeon told me I was correct, that I have not only huge black patches of endo in various locations (she showed me the pictures, but I was still groggy from the anaesthetic and assumed at the time I'd receive a more formal confirmation with this info, so didn't really take it in), but a good fifteen years or so of scar tissue built up inside me. She didn't explain why this was causing my infertility, but assured me that all of this would be explained at my next appointment, which would be in six to eight weeks, where the gynaecologist would discuss both treatment for endo and IVF.
Well, it's six weeks on. Until yesterday, I hadn't heard anything from the hospital. I've called and left messages with my gynaecologist's office three times, but not heard anything. Half the time when I call I just get trapped in a loop of unanswered phones. I still haven't even had a letter informing me about the results of my surgery - my only source for the diagnosis is one groggy conversation with the surgeon.
Yesterday I got a letter from the assisted conception unit, informing me I'd been put on the IVF waiting list; that when I reached the top, I'd have a screening appointment, and any questions I had would be answered then. That's all.
Has anyone else been in this situation? Are they just going with the old 'pregnancy cures endometriosis' line? The surgeon had suggested I'd need more surgery to get the scar tissue out, but it doesn't seem to be forthcoming. Before the diagnosis, my mum and mother-in-law had offered to club together and support us through two rounds of private IVF given that we were finding the NHS so slow and disengaged (and because while I'm okay just now, by the time the 24 months of the NHS waiting list come around, I'll be over 35, at which time IVF chances of success reduce). Can we just go ahead with that? What about the patches of endo inside me, that have clearly blocked pregnancy in the past?
I'm so confused, and angry, about the way the whole thing's been handled, and I wondered whether there was any way of demanding info about the condition that any of you might know of - dealing with the hospital at every stage has felt like banging my head against a particularly patronising brick wall..
Would love some advice! Thanks so much.