I was diagnosed with stage 4 endo back in January - my journey to that point seems to have been pretty predictable so I won't bore everyone with all the details. My pain had reached the point where I was collapsing in public and having to go to A&E for pain, bleeding from the bowel, persistently anaemic. It wasn't until I was found to have raised CA-125 after a trip to A&E that I was able to get a gynae referral and diagnosis. I have extensive disease, multiple cysts, adhesions. The consultant said he would treat it when i had the first lap in January but basically put the camera in, took a quick look, had an 'oh sh*t' moment and didn't remove any of it.
I've had 5 shots of decapeptyl which I am coping with OK - I am getting enough pain relief from it to make it worth it. The gynae I was originally referred to said all he could offer me was a hysterectomy + removal of ovaries but that he didn't really want to do it due to the degree of bowel involvement that I have. I was referred to the endo clinic at UCLH back in May and have today received an appointment for September. SEPTEMBER.
Is this a normal wait for these clinics? The decapeptyl isn't working 100% and I am still having bleeding and pain when my period would normally have shown up and I just don't know where to go next.