I was diagnosed with endo 20 years ago. During that time, I have had numerous surgeries to remove cysts and to do general 'clean ups' in the years when we were trying for a baby, including having my left ovary removed because it was so ravaged that its only purpose was to grow new cysts which would then need attention. I have had various drug treatments, the lovely Danazol right at the beginning which caused my voice to drop and presented me with a lovely moustache, and then thankfully Prostap and Zoladex came along and I've been on various courses of that. I have now reached the stage where no more surgery is possible without a significant risk of further problems involving my bowel and bladder and associated bits and pieces (this from my Gynae and a surgeon involved in deep excision surgery). Besides, in my experience, any surgery might have a short term benefit but in the long term it makes the situation worse, as every surgery produces more scar tissue for the endo to feed on, so surgery is best avoided wherever possible unless there are fertility issues or acute situations that need prompt attention.
So basically, nothing more can be done for me. I am in varying levels of pain every single day and will be until I hit the menopause and all of this calms down, and the plan is to manage this with painkillers (pethidine being the only thing that even touches the pain) and courses of Zoladex when necessary.
Now. I know I am extremely lucky in that I have pretty much a direct line to my gynae so can just drop her an email when I think something might be wrong, and I also see her every 6 months for a scan to make sure my remaining ovary isn't producing cysts; we caught one recently and killed it off with Zoladex thus ensuring that surgery was avoided. I've also had 20 years of endo so I know my disease inside out and backwards. She also keeps me completely in the loop about everything that is going on; if there are any potential problems with anything she lets me know, and she makes sure I am involved in every decision about my treatment.
But I also know that there is no cure for endometriosis (particularly that old chestnut, hysterectomy), and that although slow progress is being made, the medical profession is almost as much in the dark as the patient about this horrible disease. I have seen appalling instances of complete consultant ignorance about endo on here but I wonder whether those consultants are any more proficient in any other area of their chosen field, i.e. they are just bad consultants generally.
So my question really is - what do people expect their gynaes to be able to do when, in the absence of a cure, there is nothing more that can be done?
I'm just curious, really.