I first started getting endometriosis pains when I was pregnant at 21 (20 years ago!!) ultra sound picked up a cyst, so they presumed it was that causing the pain. It was only when I was being sterilised last summer that they found the endometriosis, and removed the dermoid cyst. I've been to A & E twice over the years, lost count how many times I've been to the doctors because of pain too - was even told it was IBS and went through a colonoscopy! I also had 2 previous laparoscopies where they tried to drain the cyst (this was years ago, and draining a dermoid cyst wasn't going to work as it wasn't fluid filled!)
I get left and right sided pain, which sometimes radiates down my leg to my knee. I also have extremely painful periods, where the pain is also felt in my hip and back and general pelvic pain. Recently I have been getting vaginal and rectal sharp, shooting pains which they believe to be nerve pain. I was also getting very numb when sitting down, but Amitriptyline seems to have helped with that. I also get excruciating pain sometimes before a bowel movement, or with gas. Nobody seems to be able to understand that one!
I was told 5 years ago that I have chronic fatigue syndrome, which has really impacted on my life. The consultant/surgeon told me that it has nothing to do with endo, and just 'getting old'. Really?! I have seen it mentioned so many times that endo can cause fatigue?!
I'm due to have a consultation this evening about having a Mirena fitted. I have had 2 in the past, which did help although at the time I didn't even know I had endometriosis and was using it as contraception. I'm undecided whether to have surgery yet - but the pain is now so frequent since being sterilised... However I'm so afraid of it not helping, or making things worse!