Bladder and endo help!!

Hi all thank goodness I have found somewhere I can ask advice!! I was diagnosed with endo around 7 years ago had it lasered and all seemed ok. The last 3 years I have had 5 urodynamics , cystoscopy and so many urine tests , and all have come back with incontinence ( child birth) but also bladder rent ion which they don't know why, so my only option is to have a permanent catheter . I am in constant pain , feel swollen, need to go toilet constantly and never feel full, I also had pain in my back and hips, could the endo be causing it? I've longed suspected it but all urologists i have seen have dismissed this , anyone experience this before?

Thankyou xxxx

4 Replies

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  • I think it could, I would get a referral to an endo specialist, I would say they would do a laparoscopy to see what's going on in side, it could be pressure from endo and inflammation or endo on the bladder, they have looked in there but not outside,

    Get it checked asap,

    You have already been diagnosed so should now go straight for specialist have a look on th bsge list

    Also check out Lindles posts, very informative,

    Good luck xxx

  • Asked to be referred to a urogynaecologist as this does sound gynae. Rather than a permanent catheter cant you use ISC (intermittent self catheterisation)

  • Hi - please click on my username and read my posts on endo and its many symptoms and particularly the one on Pouch of Douglas endo. Why they are not suspecting this with a known history of endo I don't know. You need referral to a specialist endo centre so look at my post on finding a specialist and come back if you need to ask anything. x

  • Sound very similar to symptoms that my bladder endo had / has on me - though surgery improved it somewhat. If you have not seen an endo specialist - do so. Not all gynaes are equipped to deal with endo effectively. Similarly urologists may also be out of their depth without the input of an endo specialist.

    It took me quite some time to get anyone to take my bladder problems seriously - despite already having a diagnosis of Stage 4 endo. Eventually, I ended up with endo spreading to my ureters and as a consequence, affecting my kidneys. This is not to say that this happens at all to the vast majority of women with bladder endo. It's pretty uncommon (something like 2% of all endo cases in total). However, it does emphasize the point that symptoms should never be ignored.

    Bladder endo is no fun - I know! Keep pressing the doctors and ask for a second opinion with an endo doc. In the meantime, without being indelicate... in trying to wee, if you are retaining urine, sometimes it can helps a little to try different positions (i.e. not sitting on the loo). Sometimes, for example, squatting over something (e.g. a bedpan) helps. However, I know that terrible feeling of fullness etc when there is also nothing or very little there too. Good luck x

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