Hi everyone
I have had IC for at least 8 years now, but I am new to the forum. I have carpal tunnel syndrome in both hands, so I can't post much.
Due to my hands, I am not going to list all of the things I have done to eliminate IC symptoms. I'll just say I am currently on an extremely limited IC diet to control pain, frequency, and urgency. I eat no processed food, additives, preservatives, or foods that I know hurt. I have tried almost everything else I have heard of, except for Botox, the new needle-in the-ankle electric thingie, and anything that is in clinical trials. I have been through all the tests, been through the gyn routine, everything.
Diagnoses:
Chronic Interstitial Cystitis
Vulgar Vestibulitis
Pelvic floor dysfunction
Possible endometriosis
Ovarian cysts
PMDD/Painful periods
IBS
Other diagnoses:
Sacroiliitis
Bulging discs at L4 and L5
Cubital and carpal tunnel syndrome bilateral
Bilateral chondromalacia, plantar fasciitis, and hyperpronation
Chronic daily migraines
Musculoskeletal pain in neck from car accident
Etc I can't remember all of it!
GERD
My primary symptom is pain, and it is severe. Without meds, I have level 8-10 pain in the vaginal/urethral area and in the pelvic region.
I had my first Elmiron bladder instillation last week, and really don't want to go back for another. It was so painful that I had a return of the level 9 pain and just laid in bed. I didn't sleep the night after the treatment. The pain did not go away for a whole 36 hours. Then, I had flares that kept me awake all week. A small amount of spice or food that would normally cause minimal or no pain caused agony for me this week.
I just don't see a reason to return to the uro other than to see if I have a UTI. I don't want to put up with 8 weeks of instillation agony for 1-2 levels of pain difference for 4-6 months. The math just doesn't add up. That, and when you take the placebo effect out of the Elmiron studies, the drug only helped like 15% of people. The odds just seem against me, and I don't want to put myself through 7 more weeks like this one just to get minor changes in pain relief (according to Elmiron clinical studies).
Can anyone fill me in on their own experiences? I'm slightly curious why, when I google Elmiron, I seem to come up with more positive forum threads than negative ones, even though the drug statistically only helps a select few.
If people have had awful experiences like mine, I need to hear it, so I don't feel like a giant baby.
Thanks for reading.
I have had IC for at least 8 years now, but I am new to the forum. I have carpal tunnel syndrome in both hands, so I can't post much.
Due to my hands, I am not going to list all of the things I have done to eliminate IC symptoms. I'll just say I am currently on an extremely limited IC diet to control pain, frequency, and urgency. I eat no processed food, additives, preservatives, or foods that I know hurt. I have tried almost everything else I have heard of, except for Botox, the new needle-in the-ankle electric thingie, and anything that is in clinical trials. I have been through all the tests, been through the gyn routine, everything.
Diagnoses:
Chronic Interstitial Cystitis
Vulgar Vestibulitis
Pelvic floor dysfunction
Possible endometriosis
Ovarian cysts
PMDD/Painful periods
IBS
Other diagnoses:
Sacroiliitis
Bulging discs at L4 and L5
Cubital and carpal tunnel syndrome bilateral
Bilateral chondromalacia, plantar fasciitis, and hyperpronation
Chronic daily migraines
Musculoskeletal pain in neck from car accident
Etc I can't remember all of it!
GERD
My primary symptom is pain, and it is severe. Without meds, I have level 8-10 pain in the vaginal/urethral area and in the pelvic region.
I had my first Elmiron bladder instillation last week, and really don't want to go back for another. It was so painful that I had a return of the level 9 pain and just laid in bed. I didn't sleep the night after the treatment. The pain did not go away for a whole 36 hours. Then, I had flares that kept me awake all week. A small amount of spice or food that would normally cause minimal or no pain caused agony for me this week.
I just don't see a reason to return to the uro other than to see if I have a UTI. I don't want to put up with 8 weeks of instillation agony for 1-2 levels of pain difference for 4-6 months. The math just doesn't add up. That, and when you take the placebo effect out of the Elmiron studies, the drug only helped like 15% of people. The odds just seem against me, and I don't want to put myself through 7 more weeks like this one just to get minor changes in pain relief (according to Elmiron clinical studies).
Can anyone fill me in on their own experiences? I'm slightly curious why, when I google Elmiron, I seem to come up with more positive forum threads than negative ones, even though the drug statistically only helps a select few.
If people have had awful experiences like mine, I need to hear it, so I don't feel like a giant baby.
Thanks for reading.
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