elinor
11-23-2008, 02:03 PM
I was finally diagnosed with IC on July 1st after over ten years of symptoms. The onset of my IC was so slow and gradual, that I partly learned to live with the pain and partly began to self-treat by cutting out foods and drinks that would irritate me, and wearing looser comfortable clothes.
In high school I often ran into the restroom between every class, and I learned not to eat much on long car rides and just sip a little water every now and then
Over time, though, nerve damage occurred and gradually worsened. Finally I decided that what I was feeling was so abnormal that something must be wrong. Looking back, I don’t know how I could have thought that what I was feeling was normal, except that the pain and symptoms increased so gradually.
There were times when it was so bad I couldn’t sit. At night I would lay in bed and cry because of the horrible discomfort that wouldn’t go away.
My journey went like this: Gynecologist 1, Gynecologist 2, Neurologist 1—Gabapentin for the nerve pain, University Neurologist, University Urologist 1—Pelvic Floor Dysfunction and physical therapy (which really helped, by the way, but the effects of it wore off when I worked a really stressful job with a long commute for a year), back to Neurologist 1, back to Gynecologist 2, University Urologist 2—Interstitial Cystitis!
The whole process took almost three years, but praise God—I now know what is wrong and I am not alone.
Now I am seeing how Elmiron works for me. There does seem to be some improvement, but not as much as I would like. I don’t know if the effect of the Gabapentin is lessening because I have been on it for a while, or if there is more nerve damage now…
What really helped me get diagnosed was that my PFD PT noticed that my bladder was giving off a lot of heat, and she helped me figure out where my bladder even was (it sits lower than is usual). And, she gave me a copy of the IC diet and told me it often helps PFD patients.
It is so good to know that you all are out there!
In high school I often ran into the restroom between every class, and I learned not to eat much on long car rides and just sip a little water every now and then
Over time, though, nerve damage occurred and gradually worsened. Finally I decided that what I was feeling was so abnormal that something must be wrong. Looking back, I don’t know how I could have thought that what I was feeling was normal, except that the pain and symptoms increased so gradually.
There were times when it was so bad I couldn’t sit. At night I would lay in bed and cry because of the horrible discomfort that wouldn’t go away.
My journey went like this: Gynecologist 1, Gynecologist 2, Neurologist 1—Gabapentin for the nerve pain, University Neurologist, University Urologist 1—Pelvic Floor Dysfunction and physical therapy (which really helped, by the way, but the effects of it wore off when I worked a really stressful job with a long commute for a year), back to Neurologist 1, back to Gynecologist 2, University Urologist 2—Interstitial Cystitis!
The whole process took almost three years, but praise God—I now know what is wrong and I am not alone.
Now I am seeing how Elmiron works for me. There does seem to be some improvement, but not as much as I would like. I don’t know if the effect of the Gabapentin is lessening because I have been on it for a while, or if there is more nerve damage now…
What really helped me get diagnosed was that my PFD PT noticed that my bladder was giving off a lot of heat, and she helped me figure out where my bladder even was (it sits lower than is usual). And, she gave me a copy of the IC diet and told me it often helps PFD patients.
It is so good to know that you all are out there!