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diagnosed with LS— does anyone have peeing troubles?

Posted , 3 users are following.

enigmas
enigmas

Has anyone here had urinating problems? For the last week it has hurt to urinate. It doesn’t burn like a UTI. It’s a stinging pain inside my body, not outside where the LS visibly is— it feels like a needle is being shoved deep inside up by my bladder and down the whole ureter. it only hurts when I start and stop passing urine for the most part. My stream is slow and inconsistent, it starts and stops, and sometimes it comes out so slow i am stuck in the bathroom for a while. It’s hard to begin peeing. I also have visible blood in my urine and blood clots. My primary physician said it was a UTI or kidney infection. I had three urine cultures and all of them show blood in my urine but no sign of infection. I was screened for kidney stones via imaging and I don’t have any. I also was screened for bladder cancer, which I don’t have. I had a cytoscopy yesterday, and my bladder looks totally healthy and normal, but my urethra is VERY NARROW and inflamed and angry. The doc had to use the tiniest sized catheter and even that didn’t fit properly and caused enough bleeding that he wanted to sedate me for the procedure. He concluded that LS has infiltrated and narrowed my ureter internally. I called my urologist-gynecologist who originally diagnosed me with LS and she says it can cause narrowing inside the urethra and ureter. But when I look online, I can’t find a single other person with LS that caused them to have bloody urine. I can see it drip out totally red, so I know it’s not from an external cut or anything. Also I check my LS spots daily when using the cream, and I don’t have any open cuts that would cause bleeding. I really am miffed and the pain when peeing is pretty bad. My urine also sprays, it doesn’t come out in a single stream??? I don’t know. The urologist said I may have urethral stricture to some degree. I’m so frustrated, and I can’t imagine living the next 60+ years peeing in agony. and the prognosis for girls with strictures doesnt sound great. my uro-gyno said to keep using the cream and it should help my peeing symptoms but how does a cream help internal pain and bleeding? Any ideas? Similar experiences? i only found out about LS 2 weeks ago and now this stuff...this disease is brutal

0 likes, 2 replies

2 Replies

  • beverly52803
    beverly52803 enigmas

    Posted

    My goodness, you have certainly earned your "screen" name! What you describe sounds just awful. I feel so badly for you. I was told LS did not affect us internally, just externally. Maybe that is not entirely correct. It was internal vaginal issues that brought me to the gyn who diagnosed me with LS 2 years ago. She prescribed hormone cream & steroids causing me to ask "what about the vaginal problems?" Her incorrect conclusion was what was outside felt like it was inside. I insisted on getting flagyl and the fleeting internal symptoms began to subside.

    I had been on this site for atrophy issues before the LS so I'm not sure which topic it was under but there were many discussions re endless UTI problems. A woman named Shirley was suffering terribly until she was prescribed Trimethoprim . It seemed so significant at the time I wrote it down even though I do not have UTI issues. I have no idea if it would help you but you might want to ask your doctor about it.

    The disease impacts us differently making it quite a mystery for doctors, I'm sure. I hope you find a solution very soon. Best of luck. Keep us informed as this kind of sharing sometimes solves problems that drs cannot on their own.

  • brenda23819
    brenda23819 enigmas

    Posted

    i have vthe same problem but they told me i have blood in my urine because i was a diabetic. i have blood in my urine all the the time the drs dont seem concern about it

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