Is IC progressive or not?

[redfaced]

I guess this is a question for everyone who has IC.

From the time when you were first noticing symptoms to the time you got your diagnosis, did your symptoms get worse, better, or stay the same?

Mine started out as horrible, but they aren't as bad now, a month later. When I first had symptoms a month ago, I was treated for a UTI over the phone because it was Labor Day weekend, and the office was closed. The doctor said it sounded like a run-of-the-mill UTI and prescribed antibiotics over the phone. Well, here it is a month later and I still have the symptoms and have been to three other doctors, all who said it must be IC. I see a uro in a couple of weeks.

Anyway, if I started out "mild", does that mean that I'll probably stay that way, or am I destined to become one who ends up looking at having my bladder removed one day because it gets so bad?? I can live with it how it is, though it's not fun and I've already made myself into a hermit because of it, but I don't know if it's only going to get worse from here.

[Lisa_S]

Some people do progress, but from what I have read, they are in the minority. Most people seem to get better with treatment. I have been improving slowly with Elavil, the IC diet, and hopefully soon Elmiron and PT.

[Imustpee]

Mine got progressively worse over a 40 year time span..:mad:.. but I had no treatment...Nothing was available in the 60's and early 70's, I tried DMSO in 76, it didn't work and then again in 1994, nothing but severe burning and pain..,, no further treatments until 2004, but by then it was too late...I had my bladder removed in Dec 05...best thing I ever did!

[Judith56]

For the majority of people it does not progress. Just look at the sheer number of people who post here that have had it for years and years. I am one of the minority. I have had it since I was a toddler, I am now 50. Like Lesa I wnet most of my life with no treatmenst since there were none. I was diagnosed in 1978 and at that time I tried everything that was available which was not much. Elmiron still was not out, there was no IC diet, no Interstim, etc. I continued to live my life and after I weaned my second child my situation got very, very bad, so at age 30 after 8 years of every trreatment that was out there I had my bladder removed and am very grateful that it is gone. Judith

[redfaced]

Thank you so much for replying. My heart really goes out to those of you who have a severe case, or who have been dealing with this awful disease for so long. I'm relieved to hear that it's not pregressive in most cases, and hope I'm not in the minority. Currently, I'm taking Cystoprotek, Effexor, and Tylenol PM to get to sleep, and staying on the IC diet. I'm trying to keep the symptoms
as quiet as possible.

[redfaced]

By the way, what is the difference between Elavil and Effexor? My doctor said there wasn't any, but it seems like everyone with IC is on Elavil and likes it.

[tabasco32]

mine getting worse and only have it for six months first urgency and frequency then burning and now pain weird ugly pain. don't have treatment yet though

[Dixiefireball]

Mine did progress even with treatments, but most people with IC doesn't.
sounds like that UTI since you in an awful flare that hasn't got back under control yet, or the anti. he gave you was the wrong one and you may still have something going on. if their is a UTI going on. this will cause one heck of a flare. ask for the uro to have your urine sent to a lab to make sure your on the right anti.
Hope you get this under control soon and feel better.
sending you hugs and prayers.
Rhonda

[Imustpee]

Tabasco, :hi: ..you really should see a urologist right away!! If you do have IC you can be treated immediately, and if it's not IC at least you know what you are dealing with and can get help for it....Judith and I had no choice when we first started having symptoms since there was NO treatment..IC wasn't even a believed in disease...we had to suffer for years and years...the Navy drs told my parents I just wanted more attention....it took over our whole lives!!!...you DON'T have to live and suffer like that....please... go see a dr and let us know what they say? :)

[mary124]

I'm one of the ones that it has progress from mild to severe. I was dx in
1992, tried DMSO a few times (one time it helped the others including recently it did not) and assorted medications. Elmiron wasn't out till 1997 or 1998). The first doctor that I had didn't know anything about IC and when I found this wonderful place, I asked him about the diet and all and he said there was no such thing, this was in 2003. Since then I have had 2 other doctors, the 2nd doctor knew some things but really couldn't help me so just recently he suggested another doctor and this is where I'm at now. I follow the diet, take elmiron do what I need to do but nothing is helping. Waiting to go back to the doctor next week.

[blendno14]

Hi,

I was diagnosed one year ago and I feel better now. :smile tee

I was treated with Elmiron and instillations.....

Although I do have only mild IC the medication took a long time to work....

[VickiB]

My symptoms began in the mid '70s. I saw many doctors but found no help there. Eventually I just accepted that I would have to live with my demon bladder and gave up on seeking medical help altogether. Fast forward to 2004 when my GP said he'd just read about something called IC and he bets that's what I've had all this time. He urged me to see a Urologist he knew and sure enough,...I wasn't crazy after all, -there really was something wrong and finally it had a name!

Anyway, even though I went untreated almost 30 years, my IC became no better nor no worse in all that time. Two and a half years have passed since diagnosis and thanks to meds, diet, and a lot of tricks I've learned at this site, things are so much better for me now.

IC seems very strange in the various ways it presents itself, with no guarantees as to what route it will take. Some do progress, unfortunately, while others, like myself, do not. I have read that the majority of people with IC do fall into this non-progressive group.

Vicki

[BeachBaby]

Hi Red,

This is just my "opinion". I started with IC abruptly, no warning and it was all consuming!!! Pain, urgency and frequency. Like most of us here, I was initially treated for a UTI. It was actually a confirmed one, and I was started on one antib and then changed when my culture came back. Pretty common.

8 Weeks later I was diagnosed via hydro/cystoscopy. Dx: mild IC. It felt like it was ANYTHING but mild and I struggled for many months...and I was convinced there was no way it would get better when I felt horrid every day.

Looking back, I realize it was/is MILD, but I think when our symptoms are flaring or active, it is really difficult to think mild, moderate or severe. I am pretty sure that despite even really horrid symptoms, that many of us fall into the mild category and the minority "only" progress.

So, I think it may have a tendency to be progressive in a smaller percentage, many of us either stay right where we are or we find relief, if not remission. It sounds as if you have active symptoms from a mild status. My "guess" is that you might stay there, but will probably need treatment to do so and then likely feel even better. This happened for me, so I hope it is the way for you too.

[redfaced]

Thanks, Betsy!

That's exactly what I was thinking and wanting to know. Thanks to all of you for answering the question.

My dilemma now is, "Do I want to take Elmiron or not?". It sounds like if I'm in the small group it helps, it would be foolish not to take it. But if I'm in the majority that it doesn't help, then I could go through all that for nothing. I'll just never know until I try. But I still want to give Cystoprotek a chance. In some ways, it feels like I've gotten worse while taking it. I never used to burn when I peed, but now I sure do! Feels like bits broken glass coming out. Is that IC or is that more of a urethral problem? What's weird is that it seems like my bladder feels better, but my urethra is killing me. It used to be opposite. I just got my period today, for the first time since I've had this condition, and I thought using a tampon would be out of the question because of the burn, but I managed. My periods are very irregular, so that's why this is the first one since dx. Sigh.

[BeachBaby]

You're welcome.

When I was dxd in 2002, I knew very little about IC. Most of what I understood about diagnostics, etc came from reading Dr. Moldwin's book. I didn't find this site until a year or so later.

In some ways I think it was easier, Elmiron was the gold standard or so it seemed, and the only dedicated IC drug. I was put on it immediately after my dx and nothing else. It never occurred to me not to take it. Unless I experienced side effects I couldn't tolerate of course.

Luckily it worked, though it took a very long time. I did know the success rate was low, but never questioned it.

There have been some excellent and lengthy discussions recently regarding Elmiron. Lot's of pros and cons. You might want to go to the Elmiron forum and get some perspective. My advice, though is to trust your gut feeling and do what you feel might help you the most.

[saptree]

I believe my IC has progressed. I had cystoscopy done 3 yrs apart and in three years my bladder wall thinned to the point that its almost see-through. And that happened even with treatment. On the other hand I have gone through periods of time, 6 month chuncks when my IC has treated me well (meaning infrequent pain rather than constant pain.) I appreciate every pain free moment I can get. Frequency I can live around, pain I care not to.


BTW, Elavil and Effexor are two different kinds of antidepressants. Elavil is tri-cyclic, Effexor is a SSNI (which is different from an SSRI- like Prozac) I took Effexor for 6 months and my bladder treated me well. I also had a better outlook on life, if you know what I mean. Technically I tried Prozac too- back before I knew I had IC but had all the symptoms. It turned me into a zombie for 4 months and did nothing for the pain.

Sherry

[ICNDonna]

My IC was diagnosed back in 1975 and, if anything, I am better than I was then, probably because I watch my diet and have discovered which treatment options work best for me. My IC did its progressing during the six months before diagnosis.

Donna

[blondie45]

I have had IC for approximately 16 years. I did great for most of these years with only Elavil at night and bladder retraining. It seems since I was diagnosed with fibromyalgia everything is out of whack again. I would not say though that my IC has progressed and that I am lots worse than I was 16 years ago. Treating IC, for me at least, has taken me through trials of tons and tons of meds and supplements (most not working). My personal opinion is that IC is not progressive, as I don't think I get many more flares now than I did 16 years ago, although the fibromyalgia along with it makes it hard for me to tell which condition is causing me my pains at any given time.

[sami4a]

I am currently reading a medical Urology book and the author said some interesting things: Most IC peaks quickly with the worst symptoms, then stabalizes or goes into remission. Only 5-10% of diagnosed cases actually go on to develop the severe form of the disease and they usually went for a long time before they were diagnosed and treated.
In the Urethral Syndrome chapter she stated that US is caused by spasms of the muscles that line the pelvic floor. If the muscles that spasm surround the the urethra it is called Urethra syndrome, if around the vagina it will cause painful intercourse, if around the rectum it will cause defecation problems.
My IC started with urethral syndrome and the burning, stinging, shooting pain after urination. I did see a Vulvar Specialist and she sent me for physical therapy which I thought was silly at the time. But she was right and I rarely have the symptoms now, and when I do I know what movements shift the spasmed muscles to relieve it.
She also said if urethra syndrome is not treated it will progress to mild interstitial cystitis which I now have.
Sammie

[izazen]

(dx'd over the phone on a weekend) about 4 months ago then problems didn't go away so I googled up "ic." I feel better now, too - symptoms are much less. I see a little dot of blood every now and then on the paper when I wipe but as I am older- I hear the bladder can get more inflamed in the cases of those 50 and over and I already have inflammatory bowel disease. I am going to the uro for the 1st time on the 26th - good luck to both of us.!

[redfaced]

Sammie,

That is really interesting. I go to physical therapy for muscle retraining, but I had no idea there were even vulvar specialists around! I need to see one, as now most of my issues seem to involve that area, rather than the bladder or urethra. It feels like I have a constant yeast infection all over "down there", but I don't. What does your physical therapist do? Mine has me put a sensor in my vagina and then uses a computer to track my muscle strength while I do keagles, and then also to do e-stim. She said I have good pelvic strength, but I did notice that it hurt less to pee after the e-stim the first time, but after that, the pain came back. So she's not sure it's working well for me.

[jah]

My experience with this disease is:
It definitely can come from bacteria and other ways
It can last a long time
Doctors do not know enough about it
It can make patients suicidal
You have to treat the symptoms
Depression is a by product of this disease
It does go in remission
It is very hard to keep optimistic when you have to void 60 times in one day
ICN support is the best thing going for this disease
You will not always be as depressed as you might think
There are drugs that can minimize your symptoms
There are doctors that cannot deal with the pain aspect
We are all in the same boat...we need each other

[L. Thomas]

Funny you should mention it. I was talking just yesterday to my urogyn about this. His research says it is progressive if not treated appropriately.

I was concerned that my IC would get worse. He says probably not as I was diagnosed early and the treatment is effective.

He did say if IC was not treated the damage is usually not reversible. He seems to think that IC is not diagnosed because MD's are not associating bladder problems with other pelvic problems.

I found it interesting that he said his reaseach shows that IC occurs in 80% of those diagnosed with endometriosis.
________
HEAD SHOP (http://headshop.net/)

[redfaced]

That is really interesting stuff! Thanks for the info! So, is he saying that women with endo have a very high chance of getting IC, or that women with IC have a very high chance of having endo?

[redfaced]

I believe my IC has progressed. I had cystoscopy done 3 yrs apart and in three years my bladder wall thinned to the point that its almost see-through. And that happened even with treatment. On the other hand I have gone through periods of time, 6 month chuncks when my IC has treated me well (meaning infrequent pain rather than constant pain.) I appreciate every pain free moment I can get. Frequency I can live around, pain I care not to.


BTW, Elavil and Effexor are two different kinds of antidepressants. Elavil is tri-cyclic, Effexor is a SSNI (which is different from an SSRI- like Prozac) I took Effexor for 6 months and my bladder treated me well. I also had a better outlook on life, if you know what I mean. Technically I tried Prozac too- back before I knew I had IC but had all the symptoms. It turned me into a zombie for 4 months and did nothing for the pain.

Sherry



I asked about getting on Elavil and my uro said that between the Detrol LA and Elavil my mouth would be so dried out I wouldn't be able to talk. But it sounds like Elavil works so much better than the Effexor for some nerve pains. I didn't notice much help with Effexor, but that's because I took it with Tylenol PM.

[sami4a]

My PT does stretching exercises some yoga, hip and crotch, leg. She does internal massage on the pelvic floor and moves my legs around until the muscle lets go that hurts. Right now Kegals seem to make my muscles spasm and are not helpful.
The Urology text I am reading did say the key to not having progession with IC to treat it early. Very few cases ever get worse if they are treated early.
Sammie

[glassd18]

I believe I've had IC since I was in my late teens, and it started with an infection. I had burning and pinching etc... and I was so young I didn't know what was going on so I saw a uro, and he did a cystoscopy and found nothing alarming, but could not figure out why I felt like I had a UTI all the time, and could not detect one. He told me to stop drinking diet pop, gave me prescriptions (I can't remember what they were), and off I went. I just thought I had a weak bladder. The burning went away finally, but the feeling to p not long after I pd continued. I went on like that for years. At 35 yrs old I became prematurely menopausal, and started hormone therapy, but then stopped it on my own for a while. I was put on prempro low dose, and then switched to Estrace and Prometrium in Feb 2006, and then it hit like a ton of bricks. I felt like I had a UTI all the time except no UTI again. So did my IC progress from 18 yrs to 41 yrs? I think so, and I believe I went undiagnosed for all that time. I pray that not too much damage has been done to my bladder, and that taking the supplements Cystoprotek will help protect me from further damage along with the diet of course. I truly believe we are all different, and disease can manifest itself differently in different people. I believe proper diet is one of the most important aspects of good health. What we put into our bodies matters. I used to take my relatively good health for grantide. If you have good health you have everything!!! Here's to us all in sickness and in health, and may we know pain free days and peace of mind.

[redfaced]

Here, here! :)


If you went through menopause at 35, I wonder if your hormones really were linked to your IC somehow. I just think that hormones play such a major part it in, and why this disease is so hard to treat. Hormonal imbalances are tricky things to figure out and get right. Like you said, we're all like snowflakes, not one of us the same, so we react differently to things.

[redfaced]

My PT does stretching exercises some yoga, hip and crotch, leg. She does internal massage on the pelvic floor and moves my legs around until the muscle lets go that hurts. Right now Kegals seem to make my muscles spasm and are not helpful.
The Urology text I am reading did say the key to not having progession with IC to treat it early. Very few cases ever get worse if they are treated early.
Sammie


I'm going to ask my PT tomorrow when I see her about that stuff. All I do now is the kagels. I asked her about the external exercises last time and she said that she does that mostly with patients who have trouble getting their hips and pelvis stable and that's not my problem. My problem is having a 9 pound baby come from within 34" hips. Wish I had those hips back now!
My interiors are just not quite the same ever since then.

[glassd18]

I do believe that a defunct hormonal system in my case could have played a part in my IC. I'm starting the BCP Ovcon 35 in a week. I was on Alesse, but want to try Ovcon 35 to see the difference.

[melanie626]

Hi-
I have probably mild/moderate disease on my hydrodistentions, but have had progressive issues in the last 2 years, so I guess I am progressing. I am better off then some ladies who have more issues then I, but like noted above, it feels pretty crappy no matter what your classified as. i keep hoping something will work for me....and therefor am chugging away.

Read, and trial things as you feel it, you never have to stay on a med and if there is no long term effect to one, it may be worth a try. See how it goes....your combo will come along as hopefully mine will.

Many hugs-

[sami4a]

I am presently reading a Urology Medical Textbook and they said most IC cases will not evolve IF treatment is started at the point when it symptoms are still mild. In other words early diagnosis means a good prognosis and the presenting treated symptoms get much better in most people.
only a small percentage of IC patients progress and that has usually been because they didnt get diagnosed until symptoms were really bad.
Sammie

[glassd18]

Just great!!! Wish my uro when I was liitle knew about IC!!

[ICLori]

In my case, my IC did progress despite treatment, but that was because the treatment did not work for me. So for me, it was like not getting any treatment at all.

Blessings,
Lori

[dmarie]

I'm just curious if "early treatment" refers to getting diagnosed shortly after symptoms appear or getting a diagnosis of mild IC? My symptoms hit me in July and I just had a cystoscopy and hydrodistention. However, my bladder pictures showed that I have moderate IC. My symptoms have calmed down tremendously since following the diet for 2 months and receiving my first rescue instillation. However, do I have more of a chance of progressing because my pictures showed moderate IC?

Dawn

[jenleigh]

My IC got worse .