Lupus CTD AND URETHRAL/ bladder problems??

Hi there just a quick question to anyone suffering from Lupus CTD MCTD OR UCTD.

I suffer from undifferentiated connective tissue disease . Amongst many weird symptoms repeated UTI's have been the bane of my life for the past 18 months . I have just returned from a cystoscopy today ( camera up urethra into bladder to see what's wrong )

The diagnosis was urethral stricture or narrowing of urethra . I have to go back for a procedure to widen my urethra - urethral calibration they call it now ( it used to be urethral dilatation !)

I should mention that I'm 31 and he said that this is uncommon in younger women . I said hi s t to do with the connective tissue disease causing inflammation down there and he said possibly.

So..... have any of you ladies ( or men) had the same thing and he it possible that my UCTD Could be to blame for this annoying problem ??

It's odd that my bladder problems arose at exactly the same time as the Reynauds , mouth ulcers , strep throat , joint pain don't u think ? I now know that the narrow urethra was probably the cause of my infections but it's odd that it just occurred out of nowhere or the infections caused my urethra to develop scar tissue that narrowed it to the point that I struggle to pee without pain.

Any way if any of this strikes a chord with you please can you let me know as it all helps 😀

It's strange having to discover and work out why your new alien body behaves the way it does and I just would like to know if anyone thinks there a link to it or not .

Thank you for your time xxx

3 Replies

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  • He's wrong. It may be uncommon, it isn't unheard of at your age - she said from personal experience!

    I had repeated UTIs when I was in my early 20s, even having a quite bad kidney infection with scarring because an arrogant young GP decided I fancied him and that was why I kept coming back to the surgery because of his diagnosis of muscle spasm having been incorrect (he gave me useless muscle relaxants). His senior partner got it right in 3 mins flat when I finally managed to get his duty and my appointment to coincide! After I had my second baby (at age 30, in Germany) they finally did some investigations including a cystoscopy - made the same diagnosis as you have and did the dilatation there and then. I've had a repeat one done in England and another here in Italy about 4 years ago. There was about 10 years between the repeats and each time the incidence of problems dropped off for several years.

    I have polymyalgia rheumatica, a vasculitis, not UCTD. I do have a history of possible pre-existing ME or something of the sort. There could be a general link I suppose. But it DOES happen in young people without a "real" UCTD too.

    Good luck

  • You are not alone Cherrywerry. I too have UCTD/sjogrens and have suffered bladder problems from the beginning. In my case, I can't pass urine properly, it's just a trickle and often doesn't feel empty. I have had to catheterise on more that one occasion when I just couldn't go at all. I had urodynamics and a cystoscopy which was all ok as it's the nerves to the bladder that are affected and get inflamed during flares. I don't have pain there though so I guess yours is due to the stricture. So to answer your question, yes, there most definitely is a link.

  • Hi I had bladder problems years ago way before all the others. The camera showed my urethra was slightly tight back then but they didn't do anything. I think it's all connected.

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