Can scar tissue be the answer to my condition with IC ?

[jori]

I'm a 26 year old male suffering for 3-4 years from Interstitial Cystitis. My symptoms are frequency, urgency and nocturia. One thing I'm most desperate with my symptoms is that there is never even a slight change in my condition. Symptoms are totally stabil and the same from day to day. That's what brings to my mind a question whether scar tissue can prevent be from becoming healthy again ? Can scar tissue cause very bad frequency/urgency symptoms ? How easy is it to detect scar tissue in the bladder (cystoscopy, magnetic examination) ? Is there anyway (drugs, surgery) to remove the scar tissue from the bladder ? I'm also wondering whether some internal damage in the bladder such as increased size of bladder opening can cause the increased feel of pressure and uncomfortability ?

[J Dimitrakov]

I'm a 26 year old male suffering for 3-4 years from Interstitial Cystitis.

How was it diagnosed (I guess you had a bladder biosy) since this is the accepted diagnostic method in Europe

My symptoms are frequency, urgency and nocturia.

Do you have pain? Pain is a hallmark of IC and helps differentiate IC from overactive bladder (OA)

One thing I'm most desperate with my symptoms is that there is never even a slight change in my condition. Symptoms are totally stabil and the same from day to day. That's what brings to my mind a question whether scar tissue can prevent be from becoming healthy again ?

Hardly. Actually, scarring is a protective reaction and would result in resolution of symptoms in most human diseases.

Can scar tissue cause very bad frequency/urgency symptoms ?

I am not aware of any studies confirming that. Urethral stricture (which is also a form of "scarring") can cause that but it is totally different from scarring in IC.

How easy is it to detect scar tissue in the bladder (cystoscopy, magnetic examination) ?

Cystoscopy is fairly good at that. So are all other imaging modalities - MRI, CAT

Is there anyway (drugs, surgery) to remove the scar tissue from the bladder ?

All are experimental so far

I'm also wondering whether some internal damage in the bladder such as increased size of bladder opening can cause the increased feel of pressure and uncomfortability ?

Theoretically, yes. Practically, in IC, this is related to the mechanisms of neuropathic pain.

[jori]

How was it diagnosed (I guess you had a bladder biosy) since this is the accepted diagnostic method in Europe

yes

Do you have pain? Pain is a hallmark of IC and helps differentiate IC from overactive bladder (OA)

no pain (except rarely sharp pain in the pubic area most often after voiding). The great pressure in the bladder could also be described as "pain" when the bladder fills up.

There are not many things that suggests OA: IC findings, I've no urge incontinence, I'm young and good pelvic floor mucles, very bad response from OA medicine such as Detrusitol and Cystrin (trademarks here). They didn't affect urgency / frequency at all, but made the voiding reflection very very difficult. I had very difficult to empty the bladder.

What do you consider made my voiding difficult with those drugs ?

No catherization needed at that time, however.

I am not aware of any studies confirming that. Urethral stricture (which is also a form of "scarring") can cause that but it is totally different from scarring in IC.

I don't know what the symptoms with urethal stricture are. I have good urination flow if the bladder is full.

I'm now considering sacral nerve stimulation as a next step to improve my symptoms.

[J Dimitrakov]

no pain (except rarely sharp pain in the pubic area most often after voiding). The great pressure in the bladder could also be described as "pain" when the bladder fills up. There are not many things that suggests OA: IC findings,

As you seem quite knowledgeable about IC, you probably know that biopsy findings aare not specific (hence biosy is no longer done in the US)

I've no urge incontinence,

Only 5-10 % of men with IC have urge incontinence

I'm young and good pelvic floor mucles,

Not quite relevant to OA, i.e. young age and pelvic floor do not have any negative predictive value with regard to either IC or OA

very bad response from OA medicine such as Detrusitol and Cystrin (trademarks here). They didn't affect urgency / frequency at all, but made the voiding reflection very very difficult. I had very difficult to empty the bladder.

Here's an interesting abstract that you might be interested in discussing with your doctor:

The Journal of Urology 2002; 168(5):1897-1913
Current and Future Pharmacological Treatment for Overactive Bladder
NAOKI YOSHIMURA; MICHAEL B. CHANCELLOR*

ABSTRACT
Purpose:
Urinary incontinence and overactive bladder are important and common conditions that have received little general medical attention. We reviewed the magnitude and impact of these conditions, and discuss pharmacotherapy as well as new drugs under investigation.

Materials and Methods:
The main emphasis of this review is pharmacological therapy for the bladder. We discuss currently available agents, drugs under development and pharmacological targets that would be suitable targets for treating overactive bladder. Drugs such as duloxetine that target not bladder smooth muscle, but rather central nervous system control of the micturition reflex are undergoing clinical trials. We also discuss intravesical therapy and alternative drug delivery methods, such as intravesical capsaicin and botulinum toxin, with special emphasis on approaches to modulate bladder afferent nerve function for preventing overactive bladder.

Results:
There are many advantages to advanced drug delivery systems, including long-term therapeutic efficacy, decreased side effects and improved patient compliance. Future speculation such as gene therapy holds great promise for overactive bladder because it is possible to access all genitourinary organs via endoscopy and other minimally invasive techniques that are ideally suited for gene therapy.

Conclusions:
Traditional anticholinergic therapies are limited in their effectiveness. There is great hope for future research regarding voiding dysfunction and urinary incontinence through a focus on afferent nerve intervention for preventing overactive bladder.

What do you consider made my voiding difficult with those drugs ?

That's one of the things that's fascinating with this condition. In some cases with anticholinergic resistance my own experience shows that patients benefit from a low-dose steroid. In other cases, K-channel openers have proven beneficial in some of my patients and instill other patients, calcium channel blockers have relieved this resistance. I cannot say anything in particular as it pertains to your case since this is impossible on the internet.

No catherization needed at that time, however. I'm now considering sacral nerve stimulation as a next step to improve my symptoms.

This is a good idea. Good luck! Before doing sacral neuromodulation (or after that) you might consider any of these: cromakalim, intravesical RTX, Botox.

[jori]

Thank you for your answer. I'll carefully further investigate that. In general, what anatomical or physical (mechanical) conditions can cause urgency/frequency ? For instance, abnormal location of inner organs ? Bladder stones for a few years ago irritated my bladder a much. I'm sure there are many such causes, but can someone mention some of those. And are some of those difficult to detect ? I've been examined, for instance, by MRI but I'm wondering if the results of those have been examined carefully and whether there might be something to find out.

[J Dimitrakov]

Thank you for your answer. I'll carefully further investigate that. In general, what anatomical or physical (mechanical) conditions can cause urgency/frequency ?

Numerous, of course. To list some, as per Campbell's Urology (8th edition, 2002): Urinary tract infection, interstitial cystitis, upper motor neuron lesion, habit, large fluid intake, pregnancy, bladder calculus, urethral caruncle, radiation cystitis, large postvoid residual, genital condyloma, diabetes mellitus, periurethral gland infection etc. and, of course, many congenital abnormalities.

For instance, abnormal location of inner organs ?

Like what organs? Bladder?

Bladder stones for a few years ago irritated my bladder a much.

Right. They can cause it (as mentioned above). Now that you mention it it might be that yur symptoms result from "chronic cystitis" rather than "interstitial cystitis" (the two are difficult to differentiate on biopsy unless a specific morphometric analysis for mast cells is performed)

I'm sure there are many such causes, but can someone mention some of those. And are some of those difficult to detect ? I've been examined, for instance, by MRI but I'm wondering if the results of those have been examined carefully and whether there might be something to find out.

Well, this is a rhetoric question. As in any human action, there is always the possibility of inaccurate finding interpretation or misinterpetation. I cannot say whether your diagnosis is right or wrong on the internet for obvious reasons.

[jori]

What is chronic cystitis and does the treatment differ from ic ?

[J Dimitrakov]

What is chronic cystitis and does the treatment differ from ic ?

It is different from IC (IC by definition is a sterile bladder inflammation) and in chronic cystitits you get recurrent bacteriurias. Treatment of chronic cystitis is different that that for IC. You still need to discuss the difference with a medical professional.

[jori]

Still many questions... I'm sure my urologist haven't heard much of these things and that's why I'm trying to get some material to discuss with.

As you seem quite knowledgeable about IC, you probably know that biopsy findings aare not specific (hence biosy is no longer done in the US)

Very interesting. Why's that ? I know it's uncomfortable but is there any other reason ?

Here's an interesting abstract that you might be interested in discussing with your doctor:

I'm interested but don't know about my urologist He's frustrated as I'm, of course.

From the abstract:

Drugs such as duloxetine that target not bladder smooth muscle, but rather central nervous system control of the micturition reflex are undergoing clinical trials.

I guess, this duloxetine is difficult to get hands on in Europe? Is the same type of med as some others mentioned below.

We also discuss intravesical therapy and alternative drug delivery methods, such as intravesical capsaicin and botulinum toxin, with special emphasis on approaches to modulate bladder afferent nerve function for preventing overactive bladder.

Capsaicin and botulinium toxin are used only intravesically ? Are these used or studied in Europe ?

That's one of the things that's fascinating with this condition. In some cases with anticholinergic resistance my own experience shows that patients benefit from a low-dose steroid. In other cases, K-channel openers have proven beneficial in some of my patients and instill other patients, calcium channel blockers have relieved this resistance. I cannot say anything in particular as it pertains to your case since this is impossible on the internet.

How do I find some trademarks, dosages and about how long do one need to use any of those (low-dose steroid, k-channel openers, calcium channel blockers) to see the eventual effect. Not a simple question I know and you probably can't give any dosage recommendations etc. on the internet but is there any other good material to find to discuss with my uro since he probably don't know much of those.

Before doing sacral neuromodulation (or after that) you might consider any of these: cromakalim, intravesical RTX, Botox.

Is cromakalim above mentioned k-channel opener?
Intravesical RTX and Botox are new and probably not easily available in Europe if at all ? One bad thing with those new meds seems to be the price. At least, Botox seems to be very expensive and probably unaffordable. I would pay a fortune to get well but for only give it a try...

[J Dimitrakov]

Very interesting. Why's that ? I know it's uncomfortable but is there any other reason ?

It is non-specific - i.e. what you see does not translate into IC symptoms.

I guess, this duloxetine is difficult to get hands on in Europe? Is the same type of med as some others mentioned below.

If you find a urologist who is participating in a study on duloxetine you might get into the study.

Capsaicin and botulinium toxin are used only intravesically ? Are these used or studied in Europe ?

The original clinical study in capsaicin came out of Italy(Lazzeri et al, 2000)

How do I find some trademarks, dosages and about how long do one need to use any of those (low-dose steroid, k-channel openers, calcium channel blockers) to see the eventual effect. Not a simple question I know and you probably can't give any dosage recommendations etc. on the internet but is there any other good material to find to discuss with my uro since he probably don't know much of those.

I guess there are about 2-3 people in the whole world that can help you with that. The best one, obviously, is the author of the article - Dr. Chancellor. I don't know him but have read all his papers.

Is cromakalim above mentioned k-channel opener?

Yes

Intravesical RTX and Botox are new and probably not easily available in Europe if at all ? One bad thing with those new meds seems to be the price. At least, Botox seems to be very expensive and probably unaffordable. I would pay a fortune to get well but for only give it a try...

I agree. Good luck!

[jori]

The only time I've had good time with my urgency problems during the last few years was the time I was operated under anesthesia. When I was given "pre medicine", which makes one sleepy, I was Ok. It felt like a miracle when you didn't feel your cursed bladder and there was no need to void.

Now I have the silly question: Is there any possibility to use this type of medicine even in low dosages to make one feel better? I suppose it's difficult since these meds are strong but could an another similar central nerve system affecting medicine used to get the same effect with less side effects. I currently don't even remember the name of the medicine but of course I can check it out if it is worth investigating.

This c-fiber stuff and RTX stuff sounds to have some sense. I think it's very possible that by some means (bladder stones, stress, infection etc.) those c fibers have been activated making the disease chronic. The urgency sensation seems to be initiated by some other route than normal.

What is the basic medical principle of Botox if it helps urgency ?