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