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I was diagnoised three years ago with LS.

Posted , 10 users are following.

pat48434
pat48434

I am 78 years old and have Lichen Sclerosus for three years.  In addition  to LS

this a year and a half ago I was told I had Hypothyroid.  I have been treated for the LS with Estrogen cream twice a week.  In order to keep the area from cracking I also use "Aquaphor healing ointment" daily.  I have developed Bladder infections and have been using "Cipro" which stops the discomfort, but for three days after I am finished with the med it comes back.  I read where many women have the sme issues that are combined.  I was given a medication for the bladder however since Cipro didn't work I was put on a drug called "Nitrofurantoin MCR.".  The doctor did not like me on it at my age and he was correct.  I woke the third day after taking it with my ears pounding, took my bolld pressure, it read 188/78.  Has anyone found anything for the UTI infections that work? 

Sisters in LS        

0 likes, 20 replies

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  • hanny32508
    hanny32508 pat48434

    Posted

    All I ever got for bladder infection was anti biotics and/or drink lots of cranberry juice.  It stopped the LS for a short little while as well.  
  • winifred02134
    winifred02134 pat48434

    Posted

    Hello Pat, l have your problem, you need antibiotics daily taken last thing at night, sometimes it is tricky to get the right one but it does work you change the antibiotic every six months so its effective . Ask your docter about this . Take care and good luck
  • suedm
    suedm pat48434

    Posted

    Hi Pat what a shame you have joined our fold! As to uti I wonder whether you are drinking enough clear fluids? Weak urine will sting less and you flush out the bugs too. Cranberries and cranberry juice have been shown improve the health of the bladder. After the intitial bladder evacuation ( pee ) sit for a while long and evacuate the last few drops, Have you been prescribed Clobetasol a highly potent steroid, the ointment is better absorbed?

    Do you give  urine samples for analysis to make sure you are receiving the right antibiotic for the bug concerned, do make sure the gp properly tests your urine, often they don't bother to send it away, and it could be you have an inflammatory condition that no antibiotics will improve.

    obviously scruplulous hygiene is essential any faecal matter remaining on the skin will inhibit the effectively of the medications, both by excoriation and re infecting 

    you do have the double whammy. the Itch, my understatement of the burning coals we suffer , is bad enough.

    do check you undercarriage with a magnifying mirror in  good light and see where the inflammation is occuring and make sure you are treating that area

    Good luck and take care

    Sue

  • dani2590
    dani2590 pat48434

    Posted

    Hi Pat, Hanny and Winifred,

    I'm having issues with frequency/urgency. I honestly feel I can't hold my urine when I have to go. I tested for UTI back in February that came back negative. I'd like to do another one as I'm having symptoms. Can I ask - what causes women with LS to get UTI infections more frequently? Is it the fact that where applying creams etc and more prone to these infections or is it the actual LS?

    P.s Winifred I read your other post on another thread about how your going after seeing the urologist. I felt so deflated after reading it, I was hoping you'd say you were starting to feel better. Hopefully with time.

    • winifred02134
      winifred02134 dani2590

      Posted

      Hi Dani , yes your right l am not so good at the moment

      My LS is behaving very well but the waterworks have gone nasty on me .I took a sample this morning after taking the full course of Amoxicillin and the infection is still present not severe but waiting there to pouce back at me in a few days if l dont get more antibiotics , l cannot wait to see owhaty G P comes up with next

      The advice l gave to Pat still stands l had 2years nearly without a uti , taking antibiotics every day , my probl is l am allergic to lots of antibiotics which meant l took the same one too long and it ceased to work and as yet they have not found one that works

      But for Pat it could work and is worth trying

      Your right l am dissappointed that the consultant did not come up with an answer for me , l have read on this site that its been the same for many of us. I will keep looking for answers and am trying to be positive l just cannot keep it up every day, l felt really down that day l wrote that l am sorry it had a bad effect on you.l am mostly upbeat l have loads of stress at the moment and l am sure thats not helping me . I will post whem l crack this problem :-) Take care x

    • winifred02134
      winifred02134 dani2590

      Posted

      Hi me again , forgot to answer your question l think uti,s are caused by a weakened immune system its a vicious circle lots of women with thyroid problems get LS and LS makes you more prone to infection .We need a cure for L S and until then we are stuck . I drink lots of water and have just started a healthier diet , if nothing else l might lose some weight and that will make me feel a whole lot better ha ! X

    • suedm
      suedm winifred02134

      Posted

      Another possible reason for UTI s is that we have a change of structure in the area - making us more suseptible to lurking bugs- AND we need to keep the area occluded with the barriers and ointments a wonderful breeding ground - hence the need to be more scrupulous than ever before- and making sure we wipe our rears from the rear not back to front - simple things but easily overlooked. 

      I rember often too late and think....D**m!

    • winifred02134
      winifred02134 suedm

      Posted

      Hi suedm , l agree with you l use baby wipes when l go to loo l hasten to add NOT on the front l dry it with soft toilet paper. I also have fingernails very short as germs get under the nails and l can spread the creams etc without fear of scratching my skin .

      Its a constant battle ! X

    • hanny32508
      hanny32508 dani2590

      Posted

      I can not tell you why LS patients are having urinary tract infections.  Just having some thoughts expressed by others as well.

      I think it is very important to be super super clean.  'Bugs' can easily get 'caught up' in the affected skin.  For this reason alone I started to rinse with baking soda water, with more than a positive affect.

       Another thought - I often have that urge to go to the bathroom and then only bring away a little piddle.  So now I force myself to hold up longer and it seems to have a possitive affect.

       No doubt all of the 'parts' at our bottoms have been affected by LS.  The whole atonomie of my bottom is not the same as it used to be.  

      Yet another thought is - should we exercize our bottom more.  Strengthen the mussles the way I learned when going to these gatherings for pregnant women.  I have been doing that for a while now and it feels to be beneficial.  

    • pat48434
      pat48434 dani2590

      Posted

      So far so good.. ipro didn't work.  Its been 6 days witout a UTI.... Yea.
  • Roselee
    Roselee pat48434

    Posted

    Yes I had recurrent Uti for 2 years, took a sample every time, and showed positive, through having a cystoscopy to look at the bladder this is where I was diagnosed with LS in and around the ureathra. I went on antibiotics took them for 5 mths, and so far so good it has been, 10 mths with only a minor irritation that went away on its own. I would go back on them in a flash if it came back as I was in so much discomfort every other month. 
    • dani2590
      dani2590 Roselee

      Posted

      Hi Roslee,

      I have LS around my urethra and I have a feeling it is inside as well. I'm quite concerned about this. How do you treat LS when it's inside the urethra?

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