my IC has progressed

[sweetangel2080]

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

[ICLori]

A few doctors do feel that IC is progressive - this matter is still up for debate it seems among the doctors.

I do feel my IC has been progressive over the years.

I'm so sorry that your symptoms have been worsening, as well.
I hope they come up with a good medicine soon for all of us.

Blessings,
Lori

[jen74]

I was also told by one urogyne that IC will progress unless you use elmiron or DMSO instillations. That is very depressing to me. So if that is the case, and what happens when you cant take the elmiron or do the DMSO? Then what is point in keeping our bladders if we are only going to get worse in the end and have to have them removed anyways. I dont get it.
I seem to be getting worse as time goes on as well. I started having issues in May of last year and was dx in December during a cystoscopy. I have even gotten way worse than I was in December even. For me it also seems diet does not help at all. I have been on a very strict diet and still have alot of pain. I am now doing the heperain,marcaine,kenalog,biocarb instills, just had my second one and feel like crap still and still have pain, if not worse if anything.
I think the doctors need to get to the bottom of what is causing this to happen to our bladders. Like my one naturopath doc said, doctors are quick to just give treatments that may help mask the pain, but what about getting to the root of the problem. I think that is what they need to do. I mean if this is an autoimmune disease, then they have to treat it like you would an autoimmune disease. Instead of focusing on the bladder, which is actually the innocent bystander, they need to find where the problem is originating from and attack that. I hope urology will get more knowledgable soon one of these days as like my GI doc says, right now, uro doc's are about 100 steps behind.
Jen

[waterflow]

Mine has gotten worse over the years too but just the pain. The frequency has gotten better from the heparin but with the TENS, vicodin and heparin the pain still gets worse. I cannot figure it out either. Wonder if there is anyone in the world who just studies the bladder?

[patricia1]

While most say it does not progress, I personnally think it depends on how fast you get your diganose and start treatments for it. I do know mine worsen over the years, but it took 5 years to get a diagnose. And there are some that even with treatments still get worse.

[mary124]

Mine has gotten progressively worse over the years. Sure, I have had little "remissions" here and there. It took over 5 years to be dx and even then the only treatment that the doctor knew of was DMSO, which helped a little bit, no other meds, didn't know anything about the diet, in fact I didn't know about the diet till 2003 (12 years after the fact); by then of course, I was on Elmiron for a few years. Both of the Uro's that I go to now, have said my IC is the worse they have even seen, and because I'm high risk they really can't do too much for me except for hydro's when ever my symptoms start to really bother me and pain medications.

[sweetangel2080]

now adding vulval sensitivity and burning due to even joggers now!
I don't understand how things keep adding on - this time last year could wear jeans, not have any issues with pain or burning nor bad frequency and that was after diagnosis..urghhh
I've been on Elmiron 11 months now...surely that should have helped me a little....



" 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
"