perimenopause -bleeding heavily from uret... - Endometriosis UK

Endometriosis UK
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perimenopause -bleeding heavily from urethra only when I menstruate.. assumed endometriosis

lipolily
lipolily

For the last four years I've had my monthly bleed coming from my bladder too. Doctors were disbelieving (rolled their eyes) and finally said well if it is endometriosis it'll stop with the menopause... a urine test showed haematuria and a cystoscopy confirmed contact bleeding. No biopsies were taken. I was told oh you've probably got a touch of endometriosis ..that's all. Not happy and am getting lots of bladder problems - I also have a bladder diverticulum which they gave me a cat scan for..(all normal ie no cancer apparently) but they're ignoring my heavy monthly bleeding, I now get more menstrual blood coming from the bladder than the womb. I've had to fight to even get a follow up appointment ..scan was in June, my urology appointment is not until the end of March 19. Any thoughts on this would be welcome. Will the menopause stop the problem? Anyone else had the same? It only started when I was in my late forties I am now 53

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Hi lily, this is so sad. Are you in uk? If so then kindly find another doctor who may understand and empathize with you. Go private if you can. I won’t know anything about that place but I have read so many in this nature and the fellow readers always suggest to go private if you can or change the doctors. I hope that might help you.

lipolily
lipolily
in reply to Dakrav

yes I am in the UK ..I feel that the GP's I've seen paid no attention to what I've said and I'm wondering if i'd have more luck if I changed to another practice? I can't afford to go private sadly. I really feel so much time has been wasted as despite requesting a urology appointment I was initially sent instead to gynaecology who said I should have been sent to Urology and I've not been sent under any priority :( Do the UK have specialists for endometriosis - if so what do I ask to be referred to?

Dakrav
Dakrav
in reply to lipolily

I hope you feel better. They surely must be having specialists in uk. They generally come under gynecology in USA and India . But I can’t say for UK.

It makes me so angry that Doctors can just dismiss you like that!

If it is endometriosis, you'd probably have to have a laparoscopy with diagnosis/removal of the disease. Surgery has risks obviously, and creates adhesions, so is not to be taken lightly. And since you may find improvement with the menopause which will presumably happen soon, you could wait and see if it helps first (although with NHS waiting times, you may be in menopause by the time you'd get an operation anyway!!). However, there is evidence that endo often doesn't just go away after menopause, and if you are in significant pain now, it would probably be worth asking for a referral- I would personally. Since you have evidence of deep/more advanced endometriosis involving the bladder, ask your GP to refer you to a BSGE endometriosis centre (take in details of your nearest one with you), who are meant to deal with the more advanced cases. x

Thank you ..this is really useful information, i'm going to go to my GP tomorrow armed with the info from your reply

Hi,

I’ve just been confirmed as having Endo at over 50. I’ve been menopausal for over 12 years but periods only becoming intermittent in the last 2 years. I had my ovaries and tubes removed just before Christmas and was told I had Endo after the op. I was clear on one side but a mess on the other. If Endo is supposed to improve after menopause surely I wouldn’t have been as bad? I’ve had a mirena coil fitted over 18 months ago. I suffered blood loss from the rectum during periods and this improved with the coil plus no real pain anymore. I was dismissed by a dr in my early 40’s when I said I bleed from the rectum during periods, she said I must be misinterpreted where the loss was coming from and nothing was done but you know your own body, probably why part of my ovary was left behind as it was attached to my bowel. Don’t ignore your issues ask to see someone els if need be but not in the same health trust, they don’t like going against others opinions in the same trust.

Hey girls, why don’t you guys check out Nancy Nook endometriosis education. One of the lady just mentioned and I joined the group and it had wealth of knowledge. I promise non of you will be disappointed. When signing they ask theee questions and we are not allowed to ask questions for the first week. We have to explore to understand.

It mentions about the hormone injection too. I hope this helps you. Some of us may not have been lucky but I making sure all of you can have the right info.

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