Understanding IC - A Few Questions

[alphacentauri]

I found the recent discussions on IC-type symptomology & treatments very valuable, but I still have some basic questions about this condition. The consensus on this forum seems to be that IC is a part of chronic pelvic pain continuum of disorders. So starting from that premise:

1. If chronic prostatitis / chronic pelvic pain syndrome symptoms tend to improve with time & proper regimen to the point where some men posting here are 90% or more symptom-free, then can we say the same thing about IC patients in general?

2. Or Is IC more of a degenerative condition than chronic prostatitis / chronic pelvic pain syndrome in general? Can it get seriously worse over months & years if not specifically diagnosed as such & treated accordingly?

3. If you have urinary symptoms, such as urgency, frequency & incomplete voiding, is it absolutely necessary to check for IC via cystoscopy - or is it sufficient to experiment with oral regiments and other therapies until you find something that works best for your symptoms? Is there a period of time past which a cystoscopy should be considered essential?

4. Does IC necessarily lead to reduced bladder capacity, or is that a separate issue altogether?

All responses are apreciated.

[webslave]

1. If chronic prostatitis / chronic pelvic pain syndrome symptoms tend to improve with time & proper regimen to the point where some men posting here are 90% or more symptom-free, then can we say the same thing about IC patients in general?

No. Both untreated IC and chronic prostatitis / chronic pelvic pain syndrome are unchanged or can get worse. The key is taking steps to halt the progress of the disease. Those people who simply "get better with time" are in fact doing something to alleviate the situation, even if unconsciously (eg. curtailing anxiety).

2. Or Is IC more of a degenerative condition than chronic prostatitis / chronic pelvic pain syndrome in general? Can it get seriously worse over months & years if not specifically diagnosed as such & treated accordingly?

I've heard that IC can result in a really damaged, low capacity bladder, and that may be true since the bladder is different in many ways to the prostate, and may be more prone to damage. But there is confusion with eosinophilic cystitis (see end of this post for details) here too (have blood test to rule out).

3. If you have urinary symptoms, such as urgency, frequency & incomplete voiding, is it absolutely necessary to check for IC via cystoscopy - or is it sufficient to experiment with oral regiments and other therapies until you find something that works best for your symptoms? Is there a period of time past which a cystoscopy should be considered essential?

A cysto will look for inflammation and may reveal the pinpoint hemorrhages (the hallmark finding in IC patients) that develop throughout the bladder after distension. However, a significant proportion of IC patients do not have these diffuse glomerulations while some normal patients do! Confusing, huh? So I'm of the school that says just treat symptoms (but I am not a doctor, remember).

4. Does IC necessarily lead to reduced bladder capacity, or is that a separate issue altogether?

No, not necessarily, but in severe cases it can.

Eosinophilic cystitis

Eosinophilic cystitis (EC) is a rare bladder disorder that has symptoms similar to interstitial cystitis (frequency, urgency, pain, spasms and bleeding). The pain from EC is constant and unrelenting, very difficult to control. Bleeding can be profuse at times. It appears that EC occurs in both men and women, of all ages. However, no formal epidemiological studies have been conducted.

CAUSE:
In most cases, the cause of EC is known. Chemotherapy and radiation
treatments are known causes. It is also suspected that some medications amy contribute to its development. EC is sometimes a symptom of hypereosinophilia, and it can also be caused by something a simple as a food allergy. What happens with EC is the blood cells (eosinophils) that normally attack allergens and foreign objects in the body begin attacking normal healthy tissue - in our case, the bladder. For this reason, when there's no known cause for EC, some doctors and pathologists think it may be an autoimmune disorder.

TREATMENTS:
For patients who have known cause, the cure can be as simple as eliminating or controlling that cause, followed by a course of high, tapering doses of corticosteroids. Sometimes EC patients must have the effected area of the bladder removed (partial cystectomy). Others have been helped by DMSO treatments. Many children have been diagnosed with EC that usually clears up on its own, others have required treatment. Cyclosporin has helped some pediatric patients.

[alphacentauri]

1. If chronic prostatitis / chronic pelvic pain syndrome symptoms tend to improve with time & proper regimen to the point where some men posting here are 90% or more symptom-free, then can we say the same thing about IC patients in general?

No. Both untreated IC and chronic prostatitis / chronic pelvic pain syndrome are unchanged or can get worse. The key is taking steps to halt the progress of the disease. Those people who simply "get better with time" are in fact doing something to alleviate the situation, even if unconsciously (eg. curtailing anxiety).

Of course. I understand it's not just time but a proper individual therapeutic approach that includes a positive attititude and combatting anxiety. What's disspiriting - and what prompted my post - was speaking to 3 uros who felt that NO MATTER WHAT YOU DO - IC will probably get worse. They tend to be of the opinion that IC patients simply stop responding to treatment over time.

I'm trying to take this with an obligatory grain of salt, and the uros probably speak more from their own limited experience than any up-to-date understanding of the condition, but still, those kinds of statements from trained professionals are not encouraging. The message is: no matter what, sooner or later, you're probably doomed!

I take it from your response, you disagree with that notion, even in the case of IC. I know I find it extremely unpalatable.

I suppose it's worth looking at the IC-Network for success stories. My only problem is I don't like some of their posts encouraging radical pelvic surgery. A surgical option for this type of condition seems to me an admission of failure rather than success.

[webslave]

IC does not always get worse, no matter what. What rubbish! And surgery is only for those who have truly exhausted the many, many other possibilities (and for those keen for the knife, and they do exist!)

[MastCells]

If chronic prostatitis / chronic pelvic pain syndrome symptoms tend to improve with time & proper regimen to the point where some men posting here are 90% or more symptom-free, then can we say the same thing about IC patients in general?

Some IC patients improve, and some do not. I have IC and CP (which I consider to be IC of the prostate). My symptoms HAVE improved over time, and I have spoken to many women with IC whose conditions have gotten better, not worse.

2. Or Is IC more of a degenerative condition than chronic prostatitis / chronic pelvic pain syndrome in general?

IC can permanently damage the bladder in some cases, but the only thing I can tell you with certainty, is that worrying a lot about this WILL exacerbate your condition.

I agree with Mark's comments on your posting.

[alphacentauri]

IC does not always get worse, no matter what. What rubbish!

I guess sometimes that's what you get from talking to doctors.

Some IC patients improve, and some do not. I have IC and CP (which I consider to be IC of the prostate). My symptoms HAVE improved over time, and I have spoken to many women with IC whose conditions have gotten better, not worse.

Good to know.

IC can permanently damage the bladder in some cases, but the only thing I can tell you with certainty, is that worrying a lot about this WILL exacerbate your condition.

Should I be worried about that possibility?

Thanks both for your replies.

[Paso]

Mastcell,

I did not know that you had been diagnosed with IC. How are you affected by food? Also how is your frequency? Can you sleep all night? Can you excersise? Can you work? Basically can you live a relativly ok life?

Finally, have you tried PT yet?

/Paso

[hodologica]

obviously medical professionals have an important role to play in anyone's treatment, and obviously my experience is not necessarily typical... but with that substantial caveat, I am comfortable in saying that my visits to doctors have been much less informative and theraputically useful than my own research. anyway, I consider myself all but blessed, because those of us who developed this condition recently have wonderful knowledge and treatments at our disposal, compared to what there seems to have been as recently two years ago. in short: dont worry, attack. read and read and try just about anything and everything that's worked for people, especially those with symptoms and (suspected) etiologies that resemble your own. above all, look into pelvic floor dysfunction, since that seems to be the keystone of the suffering of so many of us. dont start thinking too much about your longterm prognosis yet, because it may take quite a while to get on the right track.

[Paso]

Hodologica

Please tell us your story if you would.

/Paso

[hodologica]

> your story if you would

coming soon, hopefully, with extremely detailed regime descriptions, under Success Stories. I'm 4 months along; I have a modest baseline of discomfort with 4-to-10-day flares -- mostly suprapubic and low back, plus many other assorted less persitant pelvic pains. I now recognise that the flares originate from anxiety episodes and have acquired benzos for use in case such psychic agitation should arise again. baseline pain continues to gradually unwind... hopefully thats a wrap. otherwise its off to physio. palpating myself, I do not feel sore/stiff in the pelvic floor, and have not been diagnosed with pelvic floor dysfunction, but I am convinced that PFD is the major pathway of my condition, because as I enter the meditative state each day I can feel anterior, posterior, or both sections of the floor release significantly, sometimes unbelievably. the amplitude of this unclenching in meditation seems to tally with the degree of pain I've been having that day. also, anterior clenching seems to be assosciated with my dreaded suprapubic/bladder symptoms, posterior clenching with my back pain and back/thigh/pelvic/abdominal muscle stiffness and soreness.

[MastCells]

I did not know that you had been diagnosed with IC. How are you affected by food? Also how is your frequency? Can you sleep all night? Can you excersise? Can you work? Basically can you live a relativly ok life? Finally, have you tried PT yet?

Hi Paso,
I have to watch what I eat and drink carefully. My biggest trigger is STRESS! That can cause a major flare! I can work and do moderate exercise. Believe it or not, I have not tried PT yet, although I have read Dr. Wise's book, which I found very interesting.

[hodologica]

me too, very much so. the stress need not even be overwhelming, just significant. I've also flared after a physiological stress response (adrenaline, elevated heart rate, etc) that was an irrepressable reaction to something I actually didn't consciously feel very psychologically anxious about.

now I know to avoid high-pressure situations at all cost, and to abort any downspiraling moods by whatever means necessary. whenever I do experience protracted stress or dysphoria in any significant degree, I hit the hot bath, the meditation cushion, and the sedative meds ASAP. so far so good, but I havent yet had the need/opportunity to test whether such measures could prevent a flare like my last one, triggered by a really rather intense episode of anxiety caused by a bad situation I got into.

for all of us stress seems worth examining as a flare trigger and general pathway of CPP, but in my case its anxiety that almost certainly got me the condition in the first place. for others with other shades of chronic prostatitis / chronic pelvic pain syndrome stress might not be as central.

[latte]

Whether IC gets worse over time I think is speculative. I have read that it plateaus at a certain severity and others that say it is progressive. I also think I have IC in my prostate but no one has really investigated how this improves or progresses. The idea of IC in the prostate seems to be a rather new notion. My uro is Dr. Parsons and he tells me that it can get worse if you don't treat it. I take Elmiron but I am not certain that it gets into my prostate much. The Atarax I take may help with the histamines. This is a new area of medicine. Remember it wasn't too long ago that IC was misdiagnosed all the time. Just in the last ten years has the medical community really addressed this disease. I figure that a subset of men with chronic prostatitis / chronic pelvic pain syndrome have had IC in their prostates for a long time and studies show that men with chronic prostatitis / chronic pelvic pain syndrome tend to improve over time so I am hopeful. I am much better than I was two years ago without a PT working on my pelvis but am considering going that route also. All the best for you guys with IC in your prostates. I am sitting on my donut cushion today with no pain, hooray!

[scotsman]

Believe it or not, I have not tried PT yet, although I have read Dr. Wise's book, which I found very interesting.

Worth looking into PT - as my physio has treated IC patients as well.

[Paso]

The one I go to in SF (Stanford/Wise-Anderson Protocol PT) has had huge sucess in females with IC. Worth checking out. I have a hard time understanding the IC in the prostate theory, but whatever :)

/Paso