How does endometriosis go un missed.

[sarah1234cats]

Thankyou on the 25th September this year I had a chocolate cyst 7cm by 6cm removed and my left ovary the surgeon found endometriosis had stuck my sigmoid bowel to pelvic wall also I was in a bit of a mess as it wasn't expected .I HAVE also suffered blocked kidney for 3 years had 3 stents fitted and my kidney still continues to balloon up and stop draining on this laparoscopy op they found the ureta has endometriosis inside and that's what the obstruction is stopping the right kidney working it's even grown round the kidney I am shocked no one saw this on ct scans and operations to fit stents etc .my Dr dismissed the cyst for years saying it would burst on my monthly now I'm facing full hysterectomy I have my follow up Monday 20th Oct to see the outcome and what can be done . I'm tired my heart rate beats at 40 to 50 beats per minute so now my Dr has referd me to see heart specialist to make sure it's not spread upwards think she is trying to make up for ignoring the signs of poor health and pain I've had for years the painkillers she gave me where for arthritis to stop kidney pain and I now have lesions in my stomache apparantly ulcers I'm worried it's endometriosis I'm stressing so bad can't wait to see the consultant .

[CharlieSays]

Sorry i can't answer most of your questions, but I know a large proportion of the women on here have waited a long time to be diagnosed - the average is about 7 years, but I think I've had it over 20 years before anyone realised. The main problem is that it doesnt show up on any scans, xrays etc, so unless you have a very clued-up and sympathetic GP, you often are dismissed as 'imagining it'. I would guess that the endo was missed during your kidney ops because you were being treated by a kidney specialist, who either wouldnt be on the look-out for endo, or else didnt recognise it if they did see it! Your laparoscopy was presumably done by a Gynae surgeon, who would recognise endo deposits. I had a similar experience when ovarian cysts were found during scans - my GP was told they were resolving by themselves, so when I went back to her as I was still in pain, she pretty much said I couldnt be and I had to insist on being referred to a Gynae! Sadly, you have to put it down to a lack of research / knowledge / training - take your pick. Are you seeing an Endo specialist or just a general gynae? If your endo is as severe as it sounds, you can ask to be referred to one of the BGSE approved centres.