I've recently been told by my doctor that I have endometriosis. Well, she said that she can't formally diagnose it without a laparoscopy, but that going by my symptoms (infertility, rectal bleeding during my period, intense stomach pains and constant diarrhoea, rusty bleeding before period, depression/mood swings, history of bleeding after sex) that she's certain that I do. The frustrating part is that these are all symptoms I have been to the doctor with individually over the last fifteen years, and they were all dismissed as unrelated events. It is only after reading an article about someone with endometriosis in the lungs did I even realise that it could affect the other places around the body, including the intestine, and it was like a lightbulb moment for me. I visited a GP, and here we are.
So I have been referred to a gynaecologist, but after a 3 week wait just for the letter, I find I now have to wait till mid September just to get the consultant referral I need to get the laparoscopy. Is this time frame normal? Do you know how long I might have to wait after seeing the gyno before the operation? I'm 36 and (as my mother often reminds me!) time is running out, and I feel like I am hauling around Schrodingers womb, both fertile and infertile until the box is opened, and it's making me profoundly sad.
Can anyone here with endometriosis, especially intestinal endometriosis, tell me what to expect from here on in?
Written by
Smoot
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You could potentially speed up the process by paying for a private consultation. As I understand this can be around £150 but they will see you very quickly and any referral from there can be with the NHS. It might save you a few weeks.
I know how you feel regards to being ignored. I saw my GP for four years about my issues and only finally got a referral when I happened to see a different GP.
I would also request to see a specialist endo center if possible as there are lots of gyne's who can't do certain types of specialist surgery. I have endo on my bladder and my surgeon said it couldn't be removed due to the risk of damage to my bladder. I was then told on this forum that other ladies have had this surgery with a specialist surgeon. I would defiantly consider this as the same goes for the bowel. There's a list of the clinics on the following link.
Another thought; are you trying to conceive? You could get a fertility clinic referral or at least get the pre referral tests done. This will tell you something about your fertility although will not confirm endo. This will also require your partner to get checked. Getting these tests back may help put your mind at rest to some extent.
Thank you! I didn't realise you could have a private consult then go back (there's no way I could afford private surgery). I have now managed to get a private appointment for next saturday - a bit better than waiting three months to join another waiting list!
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