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My story

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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?


    • #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.


      • #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.