I was posting today and realised that over the course of my time with IC, I have got more symptoms as time went on
I started having frequency just a year prior to diagnosis and wasn't too bad so had ditropan
Six months later frequency worse to 30mins- hour without fluids and every 10mins with
About a few months later, developed diet sensitivity
then developed constant urgency
along came the pain
then starting having vaginal and urethral burning as well with clothes or sitting in different positions
and now can't tolerate even sanitary towels so need the all natural ones
All these symptoms added on a few months apart...and was having treatment all throughout either with cystistat or Elmiron, also antihistamines, antidepressents, antibiotics and cimetidine
I know that most doctors say IC has a course over the first 18months but most people don't progress beyond this and get much better with treatment and self help
A year ago, I would have totally agreed - 6 months or so after diagnosis, was able to control the frequency with diet and timed fluid intake, ditropan and the urgency with cystistat instills. Then starting getting extremely diet sensitive but at 4 months or so into Elmiron and elavil, was feeling much better... bathroom trips 6 - 8x a day, could wait up to half hour to go to the bathroom..
But for nearly a year now symptoms got worse- for 3/4 months nothing not even the blandest of diet of breads, plain veggies and water helped.
Then after a cystoscopy and adding in Elavil again, had 2 weeks of no symptoms..... but then had to drop Elmiron...back on it after a month or so yet no relief again
So we upped the elavil to 30mg - a little better and a few months later had 4 days of no symptoms and double capacity - have no idea how that happened -have never been able to pee more then 200ml for years!!
But since then been bed bound with pain, burning and frequency...
the burning with clothes or sitting in certain positions I think is now vulvodynia although not told doctor - it's just so disheartening to know I keep getting more things 'added' in.
So for the majority of people with IC (for any newbies reading this), people get much better with treatment or self help and sure, I can cope with it much better now but my symptoms most of the last year have been so that I can't go anywhere. Have had a little relief from this with the Elavil, as in a few hours relief a day..
My point of the post though -
Have any of you had this 'adding' in of symptoms as time went on or worsening?
I do think my IC is one that has got worse in terms of symptoms lists although I hope that even with my IC, I cen get symptoms under control and that 4 day relief is my goal - to get to it!!
i do hope that I find something that helps soon
I started having frequency just a year prior to diagnosis and wasn't too bad so had ditropan
Six months later frequency worse to 30mins- hour without fluids and every 10mins with
About a few months later, developed diet sensitivity
then developed constant urgency
along came the pain
then starting having vaginal and urethral burning as well with clothes or sitting in different positions
and now can't tolerate even sanitary towels so need the all natural ones
All these symptoms added on a few months apart...and was having treatment all throughout either with cystistat or Elmiron, also antihistamines, antidepressents, antibiotics and cimetidine
I know that most doctors say IC has a course over the first 18months but most people don't progress beyond this and get much better with treatment and self help
A year ago, I would have totally agreed - 6 months or so after diagnosis, was able to control the frequency with diet and timed fluid intake, ditropan and the urgency with cystistat instills. Then starting getting extremely diet sensitive but at 4 months or so into Elmiron and elavil, was feeling much better... bathroom trips 6 - 8x a day, could wait up to half hour to go to the bathroom..
But for nearly a year now symptoms got worse- for 3/4 months nothing not even the blandest of diet of breads, plain veggies and water helped.
Then after a cystoscopy and adding in Elavil again, had 2 weeks of no symptoms..... but then had to drop Elmiron...back on it after a month or so yet no relief again
So we upped the elavil to 30mg - a little better and a few months later had 4 days of no symptoms and double capacity - have no idea how that happened -have never been able to pee more then 200ml for years!!
But since then been bed bound with pain, burning and frequency...
the burning with clothes or sitting in certain positions I think is now vulvodynia although not told doctor - it's just so disheartening to know I keep getting more things 'added' in.
So for the majority of people with IC (for any newbies reading this), people get much better with treatment or self help and sure, I can cope with it much better now but my symptoms most of the last year have been so that I can't go anywhere. Have had a little relief from this with the Elavil, as in a few hours relief a day..
My point of the post though -
Have any of you had this 'adding' in of symptoms as time went on or worsening?
I do think my IC is one that has got worse in terms of symptoms lists although I hope that even with my IC, I cen get symptoms under control and that 4 day relief is my goal - to get to it!!
i do hope that I find something that helps soon
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