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  • My story

    I don't really know when I got I.C. I already had few regular cystite in the past (maybe 3).

    I went in another country to celebrate year 2000. I knew before I left that something was wrong becore I had constant vaginal problems since the mid of 1998/beginning of 1999 and I went to see my gyn. on a regular basis. He prescribed me I don't know how many creams...Don't have to tell you that he is not my gyn. anymore...But almost as soon as I got to the other country, I started to be really sick. It lasted at least one month and it took me 6 months to recover. It started by vaginal problems and then I had problem urinating. The only way I could do it was to stand up while doing it but even like this, it was taking me forever to do it. When I came back to my country, I started to have some really big pains in my lower back. The nurse at the hospital told me it was muscles pasmes because I've been standing up to urinate. Basically, I thing that it was what they called the first episode with herpes. But maybe I already had I.C. back then.

    I had a car accident in January 2001 and shortly after that I started to have urinal problems. It was always coming back. I met my boyfriend during that period. As soon as we started to have a sex life, I realized that all my vaginal problems were worst than I thought. That's when I got lucky and saw a programm talking about herpes. I called the phone number and they refered me to a doctor that knew a lot about this STD. He is the one that first told me about vulvodynia and I.C. We tried to take a step at a time. He started to try to help me with my vaginal problems and skin problems. I did some bio feedback for this. Since it didn't help that much and that by summer 2001 I could barely sit, he prescribed me anti-depressive pills to stop the transmission of the pain. It seems that I have some big nerves damages because I have almost permanent pain in one of my foot and in my buttock. It stopped when I was taking the anti-depressive pills) but now the pain came back, probably because I stopped the pills.

    By this november, I had an apointment with a urologist and following a cystoscopy, I finally got diagnosted with I.C. My urologist then prescribed me Elmiron and told me to come back 6 months after. My problem is that I skipped a lot of pills because I didn't have a regular eating schedule. Now I'm being more careful. It certainly helped me with the frequency. Even the pills for herpes helped me too. I'm still having lower back pains but I manage. Apart for these pains, the nerve pains in my buttock and my foot and my vaginal problems, I don't really have symptoms directly related to my bladder. I'm prettu sure I have allergies too because I sneeze more than before and for not reasons. I also had a conjectivite in August and the doctor at the emergency told me that it was related to allergy.

    Well this was my story. Hope it might help someone.

  • #2
    You are absolutely the FIRST person I have ever verbalize one of my complaints, pain in foot and buttock! Everytime I tell a doctor about my foot hurting almost a foretelling that its going to be a bad bladder day, they look at me like I am crazy! All of them have said they have never heard of it! I kept saying that I felt like a nerve was being pinched! I did not start out with the vulvar pain you are experiencing, mine was frequency, urgency and painful voids. Its weird because I would say that I get this pain in my foot when my bladder is full, but once relieved the pain subsides! Internist, Gyn paid no attention until the pain became so excruciating I asked for a Urologist referral. I still have foot/buttocks pain, do you?
    Judyv

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    • #3
      You might want to consider having an evaluation for pelvic floor dysfunction, which may be what is causing your muscle spasms. I have been seeing a physical therapist for this and she has helped me immensely. During my first session she showed me a picture of how muscle spasms in the pelvis could cause leg pain and vice versa. It was a connection I never would have thought to make myself.

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      • #4
        Hi Jaguar:

        Did you get tested for gonorrhea? Gonorrhea can cause all the problems you're having and can also get in your eyes causing conjunctivitis (which I believe you mentioned having?). Also, even if you've been tested, it's worthwhile to note that cervical swabs don't always pick up the infection even when you have it. Best wishes.

        Lynne

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