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Interstitial cystitis and LS - anyone else?

Posted , 6 users are following.

UlliS
UlliS

I have suffered from LS since my early teens (in my early 50's now) and was supposed to have surgery to widen my vaginal opening this spring. At the same time I was referred to a urologist because of problems with the urinary tract, often intense pain and sometimes urgency. I always thought that it had something to do with my LS affecting the urethra but it turned out that I have IC, interstitial cystitis. sad Although it is good to know, it is quite depressing to have two awful diseases in this area, both are very painful and I don't really want to talk about it with friends and colleagues. They would freak out if they start to google these conditions. Now. I am not sure what to do with the widening of the vaginal opening. My main problems after intercourse was always the urinary pain and now I know the reason. The tearing and splitting due to LS was also tough but I could live with that. My plan was to try to have my sexual life back but now I don't know. Does anyone here have experience from these two diseases in combination? I would appreciate any advice. They will start me on DMSO)-instillations of the bladder in a couple of weeks but I fear that it is not that effective.

0 likes, 7 replies

7 Replies

  • hanny32508
    hanny32508 UlliS

    Posted

    I do not have advise, only more questions.  I too have some urinary pain, but symptoms do not entirely compare with interstitial cystitis.  I wonder whether there are various stages with this.

    As far as the vaginal opening - I dilate every other day.  It makes a difference.     

    • UlliS
      UlliS hanny32508

      Posted

      Thank you for your answer Hanny. I think there must be different stages, as well as severity but this is fairly new to me. When I have a flare, my IC is almost unbearable and I have to stay at home from work. Fortunately, this doesn't happen that often. Most of the time, I have a some irritation but my amount of visits to the restrooms is within the normal range. However, I am not able to hold really large amounts in my bladder without severe pain. Intercourse is very difficult. I think the pressure towards the bladder causes bleedings of the bladder lining. I think I will give dilators a serious try and postpone my surgery of the vaginal opening and in the meantime find out whether bladder instillations will do me any good.
    • hanny32508
      hanny32508 UlliS

      Posted

      Thank you for your further explanation.

       Reading other posts I understand and realize that I have been eating a bit too accidic lately. While for a long period of time I was eating as much as possible more alkaline, and was fine.  I slacked with my diet. Apparently not a good idea.  It seems that what you put in your mouth also affects the blatter.  Both LS and IC react on the same food then. 

      I have to be more disciplined again.

      I hope for you that instillations will give relief. 

       

  • winifred02134
    winifred02134 UlliS

    Posted

    Hi UlliS,

    I have your problem , l was just diagnosed last summer , l have had LS for years l think l was diagnosed with that about six years ago but the l C just last summer. Its really is a blow but l found knowing what was wrong helped l had been taking antibiotics for years and not getting any better.

    I started with the bladder installatons and had 13 with a two week break in the middle to see if 6 installations would work , it took 13 in the end l do have the option for more ifat some time in the future l cannot cope with the IC . I changed my diet dramaticly there is loads of imformation online about this , l found it helped with both conditons with the added bonus of losing over 2 stone in weight which cheered me up loads!

    I have just had the first pain free christmas in years . I did have a problem recently but l was naughty and ate something l should not have and l got stuck in a traffic jam and l really needed the loo and waited too long and together these things combined to cause pain . The moral of the tale is you need to be vigilant no falling to temptation , not easy but l expect l will acept it as a way of life it certainly is better than all that pain.Sex is a problem it always hurt me and to be honest l have avoided it for years . I might pluck up the courage , its early days yet just getting used to feeling better l think l am just plain scared , but hey , never say never !

    Good luck with the installations , they really , really help . X

    • UlliS
      UlliS winifred02134

      Posted

      Thank you very much Winifred. I am really sorry to hear that you are in the same position but your post is so hopeful. Hmm, I must pull myself together and try to change my habits. I am addicted to coffee unfortunately - that will be a tough one to cut down on. I wonder if catching both diseases are due to that we are prone to autoimmune conditions. I will try instillations even though my first thought after the cystoscopy was NO WAY. It took some days to nomalize (getting back to what is normal to me) after that... It is good to hear that you are doing that much better! In a way I am glad to have a correct diagnosis. In a way IC might be a bit easier to talk about than LS, that is such a weird disease.
  • Anna777
    Anna777 UlliS

    Posted

    Hi UlliS,

    You are not alone. I, too, have LS and IC, along with fibromyalgia.  From what I've read, it is not unusual to have all three.  The best advice I can give you is to avoid acidic foods, hot spices, and carbonated beverages, drink a low acid coffee and try to avoid stress.  Meditation helps, as does a diaper rash ointment with zinc.

    Anna

    • UlliS
      UlliS Anna777

      Posted

      Thank you Anna - I didn't know about the connection between these diseases but it makes sense. Adjusting our way of living seems to be the best way to get some relief.
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