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Increased UTIs and lichen sclerosis

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mary_58782
mary_58782

For the past two years it seems as though I always have an UTI. I'm wondering if others with lichen sclerosis have noticed an increase? Are the two associated?

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  • suzanne00
    suzanne00 mary_58782

    Posted

    I've wondered about that, too.  I had a UTI recently after not having had one for 25 years and I was diagnosed recently with LS.  I've looked and I think that there may be white areas around my urethra.  Seems like that inflammation wouldn't be good.  I've also read that there is an association.  Since I'm allergic to most antibiotics, it's kind of a crisis for me when I have a UTI.  UTI's are all the more reason to find a way to stop LS in our bodies!
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  • Roselee
    Roselee mary_58782

    Posted

    Hi Mary this is how I was diagnosed after more than 2years of every other month of UTI ,s I was sent to a urologist. I had a cystoscopy under anaesthetic  as I was too sore for the flexible type , it was after that investigation I was diagnosed with LS , such a shock as I had no other symptoms, I had a pale area around the ureathra but no other symptoms, had them after using Dermovate for 3mths, but was put on antibiotics for 4mths and I am 4mths free up to now, hope I am not speaking too soon. As they were so painful. 
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  • ChrissyC
    ChrissyC mary_58782

    Posted

    I hadn't had a uti for many years. Then about 2 years ago I had a bad one. Since then I've hardly ever been free of a slight one. It's ridiculous! I haven't suddenly become less hygienic with my toiletry habits and of course since the regular problems I've become obsessively so. So what's happening? I've begun to think it MUST be something to do with the LS. Is it the fact that the whole area is now always covered either with either Dermovate or Aqueous? Or my only other theory was that having lost my inner labia does infection now have a much easier way in?
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    • Roselee
      Roselee ChrissyC

      Posted

      Chrissy I was the same I could not use any products nr my ureathra , I would set off a Uti, I tried using Vagifem, that would set it off even suppositories for piles, as UTI's eventually caused these as was never off the  loo. I think the thing that has helped me is being on a low antibiotic for 4mths none stop,I have not had one since April touch wood as they were so painful. 
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    • ChrissyC
      ChrissyC Roselee

      Posted

      Thanks Roselee I'll bear that in mind next time my clinic nurse says 'oh did you know you have a water infection?' Again! I've had about 3 courses of antibiotics so far which each time clear it for a while. I am allergic to SOME of them and what do you know but one of them set me off. Hey ho! What do you reckon Mary58782?
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    • Morrell1951
      Morrell1951 Roselee

      Posted

      Roselee, my mother has interstitial cystitis. I've read a bit about it and I came across an article in Harper's Magazine in the past few months where it was found that if the pain happens to be caused by a spasm in the pelvic floor, there are specialized physiotherapists who can relieve it. The author's point was that IC doesn't have any biological testable factors and it could be that often it's a muscle spasm.

      I do also think ChrissyC's idea of exposure makes a bit of sense, too.

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    • Kukla
      Kukla ChrissyC

      Posted

      I have had a few utis in the past but once I started using estradiol cream , I had none for 3 years until a few months ago. The urologist discovered lichen sclerosis and I have had 2 utis in the last few months . I, too, am fastidious with hygiene. I'm wondering if this is related. It's frustrating.

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  • Roselee
    Roselee mary_58782

    Posted

    Mine.  We're definitely uti , I used to put in a sample every time, and the diagnosis was E Coli 90% of the time , the pain for me was the stinging and burning after a wee! it was so sore. I tried everything to try and prevent. I suffered for nearly 3yrs and it is only since April ,I have had relief . Keeping my fingers crossed as just had my first flare this week after being diagnosed by the urologist. One thing at a time please. 
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    • ChrissyC
      ChrissyC Roselee

      Posted

      Definite water infections for me. Sometimes I get low tummy ache from infection of the urethra or bladder and if it's really bad ache in the lower back with infected kidneys. But often at the moment it's a perpetual low level infection that I'm not even aware of and routine clinic testing of my urine shows it up. Hence they tell ME - you've got a water infection!
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    • Roselee
      Roselee ChrissyC

      Posted

      I sympathise Chrissy it really got me down , I hated taking the antibiotics all the time but it was such a relief to have a break when I was on them  for 4mths could of taken them for longer but wanted to come off as soon as poss, but would not hesitate to go back to them if it came back but so far so good. I used to take ibrofen that would take the irritation away for a while. 
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    • ChrissyC
      ChrissyC Roselee

      Posted

      It's not good to be on antibiotics all the time but neither is it good for the body to have constant infection. It's just so curious isn't it that the incidences have increased for a number of us since having LS.
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    • Roselee
      Roselee ChrissyC

      Posted

      No Chrissy it is not good having the infection as I was wondering if this has caused my scarring as, I didn't have LS when I started that I know about. It was during a cystoscopy after about 2 yrs of infections that the Urologist diagnosed me with  L S as he said my ureathra was very narrow, 

       

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    • Morrell1951
      Morrell1951 Roselee

      Posted

      Roselee, that could be a clue. If you had a cytoscope insterted in an extra-small urethra, maybe that tipped the 'load' of influences to set off LS. The Koebner Phenomenon "also called the "Koebner response" or the "isomorphic response", refers to skin lesions appearing on lines of trauma.The Koebner phenomenon may result from either a linear exposure or irritation." (Wiki)

      This is why some of us who've had episiotomies or non-consensual penetration may have LS.

      Not saying having a cytoscopy is a bad thing, but it could partially solve the mystery.

      I've found that any infection anywhere sets off my psoriasis. I've also had LS my whole life, but I've only had the diagnosis and heightened awareness of my vulva for a year, so I can't say for sure that infections set off an LS flare.

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  • Kukla
    Kukla mary_58782

    Posted

    Has anyone tried dmannose for prevention or cure?

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    • Noloski
      Noloski Kukla

      Posted

      YES! After a run of UTIs this year and antibiotics failing to clear these, I discussed, with my doctor, using more estriol cream, probiotics and D-Mannose and began this protocol in December. Initially, I used Uralix only but now combine this with NU U D-Mannose powder, which is a little cheaper. That is two months being UTI free.

      I was wondering if there was a connection with UTI and LS too!

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