Questions - IC stages?

[tillysav]

What is early stage IC? Is there a late stage? Do most people go through stages? Does this mean IC is progressive? Thank you for your replies to my question. Tilly

[carly]

I think it is progressive. That's why I think it is important to get diagnosed as soon as possible. I am worse than I was a year ago. I've found a few things on the internet that support that. Good luck! I think most people get better.

[tillysav]

Hi Carly,

Thanks for responding to my questions. My doctor has never said anything about IC stages or it being progressive. I think I may have posted in the wrong place because I have been diagnosed - in late November of 2003. Maybe a lttle denial thinking I am going to get better any day now. Tilly

Miss the smileys today.

[ICNJess]

Hmm...well ok this is just my point of view, but I also believe IC is progressive. I had symptoms for 3-4 years before getting diagnosed, and by this time my bladder had shrunk considerably and also I was experiencing pain very badly. I think if I had been diagnosed properly sooner, I would've reacted to Elmiron and wouldn't have had to go through all of the hoops I've gone through with IC. But that's just my opinion, there is no proof that IC is progressive.

I think by stages, it is meant mild, moderate, severe. I was diagnosed with severe IC that is refractory to treatment.

Love,
Jess

[tigger_gal]

I too believe IC is pogressive my body tells me my IC is getting worse. I have increased pain over the last 2 years. and increased urgency and frequency. I have gotten the interstim and was relieved greatly with the urgency and some of the frequency.. even if the interstim stops working for the frequency it's well worth having for the awful urgency I had.. unfortunatley it dose nothing for the pelvic and flare pain.
Brat

[dyno]

I think everyone is different with this. I have had IC for 29 years and my symptoms are about the same as when I was diagnosed and many times better because I have found treatment that works for me. I think what I have read on this is that most cases are not progressive but there are some that do progress. I hope you find a treatment to work for you and you will be one of the lucky ones that do not progress.

Hugs,
Jolene

[October]

Based on what I have researched, I don't think that IC is necessarily progressive. I have been diagnosed with "early stage" IC and my uro feels that by taking Elmiron I could prevent my IC from getting worse. This leads me to believe that if it is caught in the early stages and you find an appropriate treatment it may not become severe. Of course, if it is in a more advanced stage on diagnosis then treatment to control the damage done becomes more complicated. I really found "The Interstitial Cystitis Survival Guide" by Robert Moldwin to be extremely helpful.

I keep telling myself not to worry about tomorrow and enjoy today while I feel okay!

[liz2]

I have ulcerated IC and fortunately have been able to stabilize it and maintain bladder capacity. I am probably in late advanced phase. And I tried Botox, but did not have a successful outcome.

I personally believe that a successful treatment protocol is the key to stabilization.

[mayray518]

I took me almost two years to get diagnosed. My bladder showed petechial hemorrhages but my capacity was normal. I have had my IC under control with elavil for 5 years now. I think some people with Hunner's ulcers have lower capacity but I do not believe the disease is progressive once you find something to help you.

[SharonA]

I was diagnosed with IC 2 1/2 years ago. I have been stabilized for most of that time due to Elavil and TLC from a wonderful primary care physican...Sharon

[ICNDonna]

I have read that IC can be progressive for about the first five years, but beyond that time is not progressive. There is a tiny percentage of ICers who do continue to progress.

In my own personal case, I was diagnosed in 1975 after having symptoms for about six months. My IC has never become worse; in fact, I think I am better because I have found the treatment options that work best for me and know what foods and drinks to avoid.

My bladder capacity has remained about the same --- and I do have Hunner's ulcers.

Sending healing thoughts,
Donna

[vm]

Here is what Dr. Parsons had to say in his guest lecture here:

<icnmgrjill> We have so many questions for you. Let's start with one of the biggest issues of all. Do you feel that IC is progressive? This question was submitted by Jojo!

<drparsons> This is a multiple part answer. We have new data currently being reviewed for publication, and some already awaiting publication, that suggest at least one out of five women have clinically active IC (Gynecologic presentation of interstitial cystitis as detected by intravesical potassium sensitivity.,
Obstet Gynecol 2001 Jul;98(1):127-32). What I mean by that is that they void ten or more times per day, usually have pain or symptom flares after sexual intercourse and frequently have chronic pelvic pain.

Eighty percent are followed by gynecologists because of their gynecological symptoms, such as pain with sex. Ninety nine percent are misdiagnosed as endometriosis, pelvic pain, vulvodynia, vulvar vestibulitis, and yeast vaginitis.

We believe that 15 to 20 million women have chronically active disease and are symptomatic all the time with flares. Most of them do not progress past this point.

My answer is that the majority of women do not progress past the middle phase. Only one in 500 probably progress to the advanced stage. Most women with IC go through life with the symptoms I've described (10-15 a day, pelvic pain and symptoms associated with sex). Basically, they learn to live with it without progressing past that point in the timeline.

<icnmgrjill> Tell us more about the stages.

<drparsons> The timeline consists of three general areas of the disease.

Early phase - Patients are usually 16-20 years old when the disease first appears, usually with symptoms associated with perhaps sexual intercourse, previous bladder infections or, even, for no obvious cause. Symptoms may occur for a week or two, three or four times a year and they seem to be relatively well in between flares. These patients frequently do not get worse, though a percentage of these will go to the middle phase of the disease.

Middle Phase - This person is more likely to be anywhere from 22 to 40 years old and have frequency, which they may ignore, of perhaps 10 times or more per day. They may have intermittent or low-grade pain cycles as I've described above, again with sex or their menstrual cycle. IC tends to flare a week before the menstrual cycle, hence their confusion with gynecological symptoms. Here I think we have 15 to 20 million women who are chronically symptomatic. If they were treated at this phase, 90% will lose most if not all of their symptoms, occasionally having problems perhaps during allergy season. Unfortunately, 99% of these patients receive no appropriate diagnosis and no effective treatment.

Advanced Phase - A small percentage of patients will escalate after a number of years to the advanced phase of the disease, where they void very frequently, perhaps fifteen or more times a day. Some experience chronic disabling pelvic pain. There may be 500,000 to a million people in this category.

End Stage - Only a very few go to what we can loosely call end stage, where they experience very severe symptoms. I doubt that there are more than 20 to 40,000 people in the US who would be in this category.

The main message is that if we recognize that mid phase, where there are millions, and treat it properly… no advanced stage would be occurring and a lot of people would be leading better lives. There will be a paper coming out in the American Journal of OB-GYN in the next six weeks that documents that 80% of women seeing gynecologists for chronic
pelvic pain have IC.

Mine has not progressed, BUT I am on 4 meds that have helped me feel good. I don't know what would be happening if I had not found these treatments so early in the game.

[carly]

Kim, thanks for finding that article. I am definatley one of the few that has progressed to the severe or final stage. That really scares me, because I don't know what will happen to me. I think if I had been diagnosed right away, I wouldn't be so bad now. My pelvic pain is so bad, I can barely sit anymore, and walking is very painful. I continue to go to the bathroom 40 times a day, and 6-9 at night. I continue to pray for a cure, or a remission.

[momw/ic]

IC has been with me for about 18 months now and is much the same. The meds have helped with the symptoms but I did develop hunner's. There weren't any at the time of my diagnosis. For the most part though, I have not just progressively gotten worse. Every one is different and this disease manifests itself differently in everyone. It makes it hard to know what to expect. I have learned to take one day at a time and try not to think about what may or may not happen next.

Pam

[Dixiefireball]

I do also believe it does progress. when they dx me in 2001 it wasnt that bad then it got worse then wrose until i found a treatment that would help me now i'm doing okay with it.