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I seem to have IC under controle

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  • I seem to have IC under controle

    I am not sure if I beated it completely or not, but I promised to myself long ago that if I ever figure it out (or I think I figured it out, like now) I will share it on forums. I know how desperate it is to be searching and never understanding what really causes it.

    In my case I was getting IC after intercourse. It was directly related to it, and never on any other occasion. Problem was I didnt get it always and took me 6 years of loads of infections to figure this out. With time I knew that it was not caused by condoms, neither hormones I used, neither intense sex, nor how clean I was or my partner. I tried everything, and I could never prevent them.
    I drunk a lot before and after sex, emptied my bladder before and after.
    Yet sometimes I would get a bad infection and sometimes nothing at all.

    Most of the time I would be in pain though.

    Doctors gave me antibiotics one after another untill they caused a chronical IC, and then I had to take long term medicaments for 5 months (twice). They helped but as soon as I had sex again, it all came back. It once even travelled up my kidneys! but since my body was in such a bad state they could not give me antibiotics for the kidney infection anymore and thus put me in a great risk. I ate loads of asparagus to help them to recover.

    I started being desperate, and the only things that really helped me was calcium and soda bicarbonate. Cranberries, and some Czech herbs that are suppose to rebuilt the bladder tissue. (I am really sorry but I have no idea what they are called in English,I found "couch-grass root" in the dictionary, but not sure if its right, neither do I know if they sell it in your country, they sell it in mine). These helped a lot, yet never prevented things.

    I read this old book from the 70s "you dont have to live with cystitis" and the doctor says that it is actually normal for an infection to get into a bladder, what is not normal is that the infection does not leave the bladder. Her theory was to exercise back muscles because the nerves that controle the bladder contractions are in there and could be demaged. I have a really bad back, so I tried it, but it made no difference to me. But it could be bacause my posture is really bad and not that easy to fix.

    Independantly on that, I was reading about women and how they can improve their enjoyment of sex with vaginal exercises. So I started doing it, and found out that 1 month later I had no more even a slightest sign of cystitis. My Vaginal wall has become stronger.
    So my theory was that because the wall got stronger, my bladder gets less harmed during intercourse. But when I spoke to my gynecologist about it, she confirmed that this could definitelly help, but the reason she thinks it worked for me, is because my vag. muscles got stronger and lifted up the bladder into a proper, higher position and therefore there is no residual urine in the bladder that could keep bacteries in.

    So I figured this could be a solution not only for people with sex related IC but also women with IC appearing independantly on sex.

    It has been 6 months since I had my last attack, I know I havent won yet, and I still drink a lot, and shower before and after intercourse etc. (so does my partner) but I wanted to share it just in case it might help anyone of you

    FIngers crossed!

    If anyone want to know the instructions for vag. exercises give me a shout and I will post them too

  • #2
    IC is not infection

    Interstitial cystitis and cystitis are two different things. It's possible for a patient with interstitial cystitis to have an infection, but one of the diagnostic criteria for interstitial cystitis (IC) is that there are infection symptoms, but no infection.

    I'm glad for you that you have managed to find ways to prevent recurring infections.

    Stay safe

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    • #3
      True. I never found out for sure though. Sometimes the bacterias were found in my bladder and sometimes not at all.
      Sometimes I would get pain right after intercouse (which I was explained is non bacterial) and sometimes up to 24 hours later (which was then seen as bacterial).
      So I could never tell if I had IC or cystitis, and doctors who treated me didnt always test me. My guess is that half of the infections I had were non-bacterial. But extensive antibiotic take, made my bladder sensitive and infections started one after the other.

      I thought I will post this story to help anyone who might find this useful.


      • #4
        Please post the exercises! It won't hurt to try them & maybe it will help! I'm glad you found relief, I hope it stays that way for you.


        • #5
          Vaginal weights referred to often as kegel weights are a womens first step toward pelvic tightening. Women must start young to ward off future conditions.


          • #6
            Thank you for sharing this information!


            • #7
              actually it could hurt to try them.
              A lot of people who have IC have pelvic floor dysfunction. That means that our pelvic muscles are too tight. This happens because we tense up our muscles to stop us from peeing ourselves. Kegels are meant to strengthen the muscles, and the last thing a tense pelvic floor needs is more strengthening!

              Pelvic floor dysfunction can cause IC symptoms such as pain and frequency as well as vaginal symptoms, stabbing, pulling, pressure etc. I think that's probably what I've got. And, well kegels are easy (at least for me), but trying to relax the muscles and "bear down" now that is really hard if you have a hurting bladder!

              19 y/o student, salesperson, fashionista, future high school teacher. <3 to sing and travel. Dream job= cruise ship entertainer
              My IC story- diagnosed at age 15 (Feb 2004), after approx. 6 mos of symptoms. Went into near complete remission following hydrodistention and introduction of meds. Feeling so good that I started skipping meds (bad idea). 1 week flare (May 2006). New flare November 2006-present.
              My triggers- I'm not sure about food triggers, just started IC diet but so far doesn't seem to be doing much. Stress is a big trigger for me though. Both flares this year came during stressful times. I think that stress reduction will help me immensely (last flare went AWAY during vacation in Mexico when I was drinking margaritas like they were water;P).
              Start of IC symptoms- Summer 2003 (after a UTI)
              Dx- February 2004, after hydrodistension (ouch!)

              Current treatments- Amytriptyline (25mg), Hydroxizine (25mg), MSM w/Glucosamine (1000mg,3x/day), quercetin (500mg, 2x/day), trying to stick to IC diet, prelief as needed.

              Previous treatments- Amytriptyline (10mg), Hydroxizine (10mg), Alesse (HBC)