Progression of IC?

[Stella1609]

Hi all,

I was wondering if you could share how your disease has progressed? I had a bladder reflux when I was six and I've had some frequency/burning ever since. I don't remember it being a huge problem through grade school, although I remember having occasional flares in high school and college (somewhat associated with stress, I think). I've always had really bad cramping during my period, which I wonder now if it might be the IC that's hurting my stomach and not actually menstrual cramps. Things have gotten steadily worse as I've become sexually active over the past two years. For the past year, I've had tenderness in my stomach, pain after intercourse, frequency (about every hour), and burning, especially if I wait too long to go. Since the cysto last Tuesday, I've been going about every 15-45 minutes and I've had constant pain, and I've been getting up at night which I just about never did before. My biggest worry is that the UTI and then the cysto almost back to back have aggravated the condition and that I'm not going to be able to go back to the relatively light symptoms I was having before. So, after all that, lol, my question is, how has IC progressed for you guys? Is it not unusual for you to have a flare like this after a procedure and then have things go back to the way they were before?

Thanks!

Laura

[ICLori]

Hi, Laura, this is only a partial answer, because I'm going to let those more knowledgeable than me answer you, but wanted to reassure you that it's normal, and even expected, to have increased pain and symptoms immediately following a cystoscopy. For some of us, the increased discomfort only lasts a couple of days, and we go back to normal, but for others the discomfort can last a few weeks. It's more common for it to last one week or less I'd say, from what I've read.

So please don't worry, you will soon return to your "baseline" or more likely even experience a remission of symptoms once the initial week or so of discomfort is over. Many IC'ers (but not all) do experience a remission following a hydrodistention/cystoscopy, and they feel better for a month or two or sometimes even up to a year, depending the patient.

If you still feel worse than usual after a week, please do see your doctor because you might have developed a UTI after the procedure. I did, my last procedure, and I was such a dummy because I walked around for over a month with a UTI before I finally went in and got tested! I could have been comfortable that whole time, if I had gone in to be tested for a UTI and gotten cured of it :(

Hopefully you will be feeling better soon.

Blessings, Lori

[mkchapter11]

I sometimes feel like my IC is progressing, but usually I have eaten a specially irritable food, or I have done something to irritate it. From what I read, I don't think it can progress but it sure feels like it!
I truly think it is stress realted, but al the doctors I have talked to seem to frown at that idea. I don't know why, but then what do I know about anatomy? A lot more, really know that I have been diagnosed.

[vm]

Mine hasn't really ever progressed. It is weird that it hit me out of the blue WHAM and stayed that way until my medications started to work. There didn't seem to be any gradual build up of symptoms that I remember. Now I feel a million times better than I did when it started.

[VickiB]

Mine started in my teens, following numerous (painful!) bladder infections. It progressed into my early twenties at which point I seemed to reach a plateau in both frequency of episodes and severity. I've stayed at the same level for the past twenty years. However, I have learned to deal with my IC better, so I feel so much better now than in the old days!

I did have a flare following my cystoscopy, and remember having a twinge of fear that something had happened to cause my bladder to revolt, and maybe it would stay that way from then on! Seems like it took a good three days or so to calm down and go back to normal.

Hope you're feeling better soon!

Vicki

[Stella1609]

I did have a flare following my cystoscopy, and remember having a twinge of fear that something had happened to cause my bladder to revolt, and maybe it would stay that way from then on!

That's exactly my fear! Thanks everybody for the positive comments. There's a seminar that my women's Bible study group is going to on October 20th, and I am so scared that I won't be better by then and I'll have to stay home with my bladder :(.

Laura

[ICNDonna]

Since I was diagnosed in 1975, my IC has stayed pretty much the same. If anything, I do much better than I did then because I have learned which foods and drinks I need to avoid and which treatment options work best for me.

It can take a while to recover from a cysto with hydrodistention. If you don't feel better very soon, I do suggest you have your urine checked to rule out infection.

Warm hugs,
Donna

[curlycue]

Please see a dr if you are still feeling crummy in the next couple of days. You should not be feeling crummy you might have a UTI. Dont put it off.

[Katrina]

For me....oddly mine has progressed since diagnosis...I got better on the elmiron....and than started to feel like I was slowly getting worse again....than boom! I had a hysterectomy....and that helped my progression....I still am not as bad as I was at diagnosis.....but am way worse than I had been....although I know a lot more about how to help my symptoms now and can usually calm them down some....I so want to get back to a day when cheating on my diet only increased frequency some...and didn't mean definate pain. That is just me though...I am used to being the odd one!

[Stella1609]

Thanks again everybody for sharing! I have to go back to work today and I'm still going every 20 minutes or so, so please wish me luck. I'm fairly certain I don't have a UTI since they took a sample on Friday. Hopefully things will start to settle back down today or tomorrow.

Laura

[tigger_gal]

Hi there stella,
I went from slight pain constantley to severe pain.... peeing up 35 times a day... and the incrediable shrinking bladder... gggggrrrr.... not every ones progress.....
Hugs
Brat

[shennan]

you say that you had bladder reflux when you were six, does this mean you had vesicoureteral reflux? that's what i had. it is congenital. meaning, it begins within the first year (plus or minus) of life, i think....

vesicoureteral relux = backflow of the urine up the ureters. possibly into the kidneys. for the layperson, the ureter is suppose to have a pseudo flap that closes when the urine travels into the bladder from/down the ureters/kidneys.

my left kidney was damaged from all of the infections.

i had my first surgery when i was 4 years old and the next at 5 years old.

never had pain/tenderness in my bladder until i took tegretol in early 2001.....
:mad:

answer: my ic has progressed since early 2001 when i started to have symtpoms. i did not know about the ic diet. my uro really didn't educate me on ic. he never 100% confirmed that i had ic. finally the symptoms got so bad last year and early this year, i sought out a second opinion. my bladder only took 400 ml under anaesthesia. i have lots of scarring from my childhood reflux. the uro said that i will never reagin capacity because of the scarring.

oh well...

sorry to hear that you have ic.
good luck!!!

we are all trying to hang in there.
:dizzy:

shenna :cat:

[Stella1609]

Shennan, yes, it was a reflux from my bladder into my kidneys. The urologist told my mom that I would probably grow out of it, and apparently I did since my IVP last week was normal. My bladder has a normal capacity of about 7 oz. I have two little second cousins (ages 1 and 3 years) who also have the same problem. Does anyone know if there has been any evidence to link childhood urinary disorders to development of IC??

Laura

[shennan]

yes i think there is a higher incidence, but i am not 100%. i had a lot of uti's and scarring from my childhood reflux. i think mine was pretty bad--the reflux. i got scaret fever, and the baby doctor checked a little more and he found pus in my urine. he saved my life....

you can go to emedicine.com and type in vesicoureteral reflux.
you have to sign up, but it is free.

more red-headed kids get it. i think of northern european decent. i am irish, polish, english, scottish, & welsh. tiny bit dutch....

it is hereditary, but no one else in my family has it that i know of--just me....

the ureters don't angle the right way into the bladder.

laura, how old are you?

i am 39....

a couple of years back, i had the ivp, cystogramm, etc. no relux.

the cystogramm hurt like h-ll because i had the ic and didn't know it....

:dizzy:

well, hope this helps.
i do think that people have different degrees of ic, and even get it for different reasons.

:cat:

shenna

[Stella1609]

Shenna, I'm 20 now. I don't have red hair, but I do have some Scottish background (my great grandfather was a McKissick). I was old enough to tell my mom and my pediatrician what hurt, and that's why they started checking me.

I had the same problems with the cysto hurting A LOT. My bladder is just now starting to settle down a week later. They also said my IVP was normal now.

[donutgirl]

Laura,

I was dx the end of May this year. I recently had another cysto/hydro and as of this date I am not responding to any of the treatments. Following the procedure on 09/20 I have had increased frequency and urgency. I thought I had a UTI, but the uro. did a culture and it came back negative. It has slowed down some, but not gone. Also, I have a pain patch for pain and it is not taking care of all the pain like it was. This disease is so frustrating!!!

Good Luck!!!

Hugs,

DIANE