IC Article-Is IC a Progessive disease?

[muxerr012]

Spontaneous remission occurs in as many as 50% of patients at a mean of 8 months. Patients may experience complete and spontaneous relief from the symptoms, may undergo a waxing and waning course, may be completely asymptomatic with intermittent flares, or may have a chronically progressive course of increasing symptoms over several years.

http://emedicine.com/med/byname/Interstitial-Cystitis.htm

Here is a very informative article on IC in general. Also, many people say that IC is not a progressive disease, but I personally find that this might not be true.....

[dyno]

For me, I have had IC diagnosed now for 33 years. I have had periods where my symptoms were worse but I don't think my IC has progressed. In fact, I would have to say as I have found a treatment that is working good for me, I feel better now than in years past.

IC is a very individual illness and every person will be a little different since there is no one cause. I know for some they do progress, but from my understanding that is usually not the case and as you try different treatments and find one that works for you, most IC patients will find some relief in symptoms with as you mentioned above, periodic flares.

[ICNDonna]

My IC did its progressing in the months before I was diagnosed. The pain just kept getting worse. That's why my uro decided a hydrodistention was a good route to take. Once I was diagnosed and begin treatment, I felt better. That was 33 years ago and my IC has not worsened. If anything, I am better than at diagnosis because I know which treatment options work best for me and which foods and drinks are a problem.

Only a tiny percentage of IC patients find it is progressive after the initial months when the disease is developing.

Donna

[ICNJess]

For me, my IC progressed until I was diagnosed. By this point, it was diagnosed as "severe refractory IC" and the standard treatments that would normally work in someone with a milder case did not work for me. I do believe IC to be progressive, but for me, it was before diagnosis.

[GriffsMommy]

I think for a lot of people who are diagnoised early and find the right treatment for them it is not progressive. I know in my case from the time I was diagnoised I seemed to get worse because the treatments I was being offered were not working for me. Just like Jess I had a dr refer to my IC as refractory which basically just means does not respond to treatment. I felt that I had not tried all treatments out there, not even close so I didn't consider my IC to be refractory. I am still trying to find the right treatment plan for me that will calm down my bladder but I seem to be a difficult case. There are lots here who have found the right treatment and who have gotten better and not worse.

[Claredale]

When I was first diagnosed with IC at the age of 23 and had the hydro/cysto, I was told that I had moderate IC. My symptoms were mainly urg/freq and pressure. I only had pain at night for the most part. I went into remission and actually quit taking my meds for about 2 years then over the course of 1 day, I started experiencing freq/urg and extreme pain out of now where. I had not been sick, stressed or anything. I was actually having a wonderful day and my husband and son were returning from a mission trip that evening. After a couple of weeks in complete agony and on pain meds that did nothing for me, my doctor did another cysto and said that my bladder was in such bad shape, that he could understand why I was in such intene pain. No ulcers, just a lot of bleeding and he had never seen one so damaged (but he didn't have alot of IC patients in his practice...at least that is what I kept telling myself!). He said it was now in the severe stage and he was no longer able to treat me since it was beyond his expertise, but he referred me to Dr. Ragi Doggweiler Wigul. She was a Godsend to the beginning of my ability to deal with my disease. I was able to be her patient for several years before she moved to another city. She referred me to my current doctor who is also knowledgeable in all the symptoms of IC. I am also at a great point in my life in regard to my symptoms. I still take meds, but I have decreased them alot over the last several months, so the treatment I am on now is working. I have no idea if my bladder is healing or it's just the combo of meds that is the cause. Either way, I am happy to be where I am today, because it wasn't long ago that I was begging to have my bladder removed and I was told to be prepared to be on disability. That part of my life truly feels like a long time ago now!

T83

[lisabar36]

My IC started with feeling like I always had a UTI. I think what really hurt me was keeping my muscles so tightened all these years and thats what made my pain get worse, I still cannot relax my pelvic muscles without feeling like I have to urinate. Thats why I am in PT finally, I think if I went to PT years ago, I wouldn't be in as much pain as I am in now. I also think if I took meds when I was diagnosed I would be doing much better also, but I had to many side effects and then developed a fear of meds. I would say to the doc, why would I take a med thats going to cause my head to POUND. Or make me not be able to get out of bed for work. When I was diagnosed, they handed me all these scripts and said take these. So I did, and I got so sick! I was dizzy for days and not knowing if they would have started them one by one and on a small dose. So I went all these years without meds, and would have the hydro/cysto done to get me by. Until I couldn't take the pain anymore, it kept getting worse. I originally back in 1999, I started Elmiron, it gave me such a headache. It was horrible, but this time around it is not giving me a headache at all and I am glad I decided to try it again. :)

[Trishann]

Donna I wish I had your doctor in my time of progessing worse. Maybe I wouldn't be to far gone with it. Donna you just keep spreading the word out the getting the proper help can make a difference. That is such an encouragement.

Sending hugs, Trish

[sweetangel2080]

I think I have read on one of the guest lectures that IC symptoms stay the same after the first 18 months..
And of course the quicker you get treatment the quicker you will get better!

A lot of the severe IC cases are those who have been untreated for a long time

But yes there are a minority of severe refractory cases
My IC was mild when it first started with only frequency, nothing else - got better after a year of treatment but has not responded to anything for nearly 2 years since getting worse...
My case is sofar refractory...but that doesn't mean it may not get better
I have still had some improvement- 2006 winter the constant urge got better, last summer the pain went for a few months...

[Want2BPainFree]

I definitely feel that IC can be a progressive disease if not diagnosed and treated properly. With that said, on the IC diet and Elmiron, I feel so much better than I did even a year ago, so hopefully, my case is not progressing, but regressing. That would be wonderful.

Unfortunately, it does seem that because it takes so long on average for someone to be diagnosed, that it would be a lot less severe if it were recognized earlier and treated sooner rather than later.

I consider myself an early diagnoses because it took less than a year of truly bad symptoms to get a diagnosis. Even if I go back to when my old uro suspected IC, but did not diagnose it, that was May 2005, so even still, that is less than two years.

It is unfortunate that doctors still don't know of this disease, nor does it seem that many are inclined to learn about it. I guess that is human nature though.

[Claredale]

Mine was diagnosed fairly quickly. within a few weeks of me noticing I had pressure and freq/urg, and it wasn't that bad until after I came out of my remission. During my remission, I took my meds for a little while in fear of it coming back, but I quit my meds when my doctor said that things looked good, but continued with a fairly bland diet, since that is what I normally eat anyway. I wish I knew what made mine come back out of remission and with a vengence. I can remember the day so perfectly. I had lunch at my house with some friends while their kids swam and we had some lunch, then I picked up around the house and kept noticing that I was going to the bathroom alot. At first I thought I was just excited, but then by the time I took my bath, I had called in to see if my doctor would call in my meds, which he did, but I didn't realize that my pharmacy closed at 6:00 and I didn't get their until almost 8. I bought some AZO since that is all I could think of to do and forced myself to drive to the airport and by then I was in so much pain I could barely walk or talk. I remember my younger son being 13 at the time and I was wishing I could have him drive. I ended up in the ER via ambulance before the youth group from our church even got in at 10:30 that night.

I have answered so many questions about that time and I could never get any answers. I wasn't on any meds, hadn't been sick for a long time. I was actually healthier than I had been in years and lost alot of weight since I drank nothing buy water. It was all so baffling, but I am better now and I am enjoying it!

T83

[patricia1]

For me I went 5 yrs trying to get a diagnoses. The doctor told had I got treatment sooner I would not be that bad. Mine stays bad all the time with periods of it getting worse and worse. Everyone is so different thats why treating it seems to be so hard.

[muxerr012]

Gosh if I didn't already know what a haven this forum is, I sure do now! Thank you all so very much for sharing your experiences with me and mostly for giving me such hope!!

I DO have hope now, and I WILL be taking all of your advice in getting treatment early. I have a new URO/GYN appt on Monday and I'm told he's the best in the DFW metroplex area. I will run to that appt!

Enough of the bandaid treatments and guess work for me. I was doing so well on my Lyrica, Allegra and Ativan that I just took things for granted. I then decided that I really needed to pay more attention to actually healing my bladder so I began taking half doses of the CystoProtek last week. Ladies, I have never had such severe stomach pain ever, which has slowly moved it's way down to the bladder, and finally my pelvic area this week. I am still not able to eat even a salad without my stomach throwing a fit.

I in no way want to discourage anyone from trying CystoProtek. If I had my choice this is still what I would choose to take for my bladder-it holds such promise! Unfortunately it's not something my system will tolerate (at least now). I wouldn't give up trying and kept taking if for 5 days as the symptoms grew worse and worse (can you guess how stubborn I am?).

So enough of my own council, it's off to the Pro I go; and how lucky I am to still be so newly dx'd, and still have a chance to stop this cycle.

Thank you again for the sound advice and for the inspiration!!! Your stories have touched my heart and I'm at a loss to explain how much it means to me. How wise and compassionate you all are. Bless you. :pray:

[notmybestday]

My IC progressed quite rapidly I feel. My bladder shrunk dramatically in the space of 6 months after its onset, and my symptoms are about three times as bad now as they were a year ago. Granted, I contributed majorly to that by downing cranberry juice like water in thinking it was a UTI and getting wrong diagnosis after wrong diagnosis from stubborn doctors those first few months. I must have literally taken 10 bottles of Cipro. I wonder if that's what finally helped send my bladder in its chronically unstable state.

My symptoms have gone from only frequency and urgency to that on top of retention, dribbling, hesitancy, pain all around the pelvic region, and occasional whining from the bladder in the space of a year. I suspect some PFD in there. So great.

[snowgirl]

My IC progressed quite rapidly I feel. My bladder shrunk dramatically in the space of 6 months after its onset, and my symptoms are about three times as bad now as they were a year ago. Granted, I contributed majorly to that by downing cranberry juice like water in thinking it was a UTI and getting wrong diagnosis after wrong diagnosis from stubborn doctors those first few months. I must have literally taken 10 bottles of Cipro. I wonder if that's what finally helped send my bladder in its chronically unstable state.

My symptoms have gone from only frequency and urgency to that on top of retention, dribbling, hesitancy, pain all around the pelvic region, and occasional whining from the bladder in the space of a year. I suspect some PFD in there. So great.

I also progressed at the 20 year mark. Over the years though my bladder capacity under anesthesia would decrease it was like 500-550cc then over the years it became as low as 100cc but now it is 175-200cc no more then 200cc and that's asleep with anesthetic. I don't know how much that would be awake something like 75cc I thought one of my Mds told me. I have asked my uro to take my bladder out before he retires. He is world renown
in female urology I would not want anyone else to do the surgery. No he says he won't take out my bladder and explained to me why he would not.

Have a good night

VN

[jen74]

I really believe it all depends on what is causing the IC to begin with. I somehow feel it is some sort of antibitoic-resistant bacteria that is the culprit. I just believe that our labs do not have the technology yet to find the bacteria, as I think it is deep in the bladder wall. I was thinking about how many of us here have had to take antibiotics at one time or another before getting IC. Well, some antibitoics kill off certain bacteria in the body as a whole and these are very beneficial bacterias that we need in our bodies in order to ward off other nasty bacterias that can do harm. Well think about it. I believe we all have bacteria in our bladders at all times, but these are good bacteria. They are probably so microscopic that they are undetectable through cultures. Well, under the right circumstances, if we had to take a broad-spectrum anti-B at some point, it may be that it killed off these beneficial bacterias that we need in order to keep the bad ones at bay and now since the good bacteria were killed off by the antibiotics, the bad ones were able to take over and this may be what is causing IC in alot of us. I am not 100% sure, but it is possible.
There has to be some logical explanation. I mean I do not think IC even exisited before antibiotics were invented. Antibiotics are like the blessing and the curse. They really help save lives, but they also cause alot of long term damage. I mean they are already saying that Vancomycin which is the big gun antibiotic is falling to the way-side and not even as effective as it was a few years ago. When this fails, we are crap out of luck because there is nothing else! They say we will have to go back to the herbs to heal then. Pretty scary.
Jen

[muxerr012]

Well said Jen!! I do believe antibiotics are key to so many problems we have today that did NOT exist before!! Yes they are cure and cuse for sure! And IC is progressive for many of us, and is dependant upon the cause or origin of the disease. Just my opinion.

I still have hope though that they will get mine under control and my new URO is great so I am holding onto that thought. Good treatment is key. Be well!!

[jen74]

Thanks Gina.
I also pray for all of us on here that there will one day be that beautiful light at the end of the tunnel " a cure". Until then, I guess we have to try and help each other and ourselves with as much info as we can.
Jen