Interstitial cystitis

[tweaked17]

Hello Female Forum

I was wondering if any of you (or someone you know) have ever dealt with interstitial cystitis. My dad's girlfriend is currently struggling with it, and has already had bladder distention done (which did not alleviate any symptoms).

I did a bit of my own research but I would like to hear from people with experience and who have perhaps overcome or are coping with the condition.

Here's part of the e-mail I composed with most of the research I did.

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...
How is ******? Has a bladder infection been ruled out (did they do a urine culture)? I did some research in my free time:

"In recent years, researchers have isolated a substance found almost exclusively in the urine of people with interstitial cystitis. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments."

The cause seems to be in most cases problems with the urothelium (the innermost layer of tissue in the bladder). It is thought that the tissue degenerates and if you take into consideration the above paragraph, it appears that the real problem is that it is not repaired. Since the bladder holds a lot of toxins in relatively high concentrations (especially since women have smaller bladders than men), if you have tears in this lining it's likely that a lot of this crap makes it into the bladder wall (and muscle tissue is pretty good at creating an inflammatory response which can be painful).

Also, since the tissue is not repairing itself correctly, it's likely that scar tissue will form, and that means the bladder will have less elasticity, and will be able to hold progressively less liquid.

From what I've read and what I know, it would make sense for ****** to drink a LOT of water... a lot. Even if it means going more frequently. If you dilute the urine there's less irritants that can make it into the bladder wall, and additionally if you increase urination frequency you give them less time to sit around and irritate the bladder wall.

I found this list of foods that are either bad ideas or okay for people with IC (as reported by people who have IC):
http://www.ichelp.org/TreatmentAndSe...ICAndDiet.html

This clinical study also goes along with the above:
http://www.ncbi.nlm.nih.gov/sites/en...ubmed_RVDocSum

"CONCLUSIONS: There is a large cohort of patients with painful bladder syndrome/interstitial cystitis in whom symptoms are exacerbated by the ingestion of specific comestibles. The most frequently reported and most bothersome comestibles were coffee, tea, soda, alcoholic beverages, citrus fruits and juices, artificial sweeteners and hot pepper."

This is from another clinical review:
"In interstitial cystitis (IC), disruption of the urothelial barrier may initiate a cascade of events in the bladder, leading to symptoms and disease. Specifically, epithelial dysfunction leads to the migration of urinary solutes, in particular, potassium, that depolarize nerves and muscles and cause tissue injury. Exogenous heparinoids can restore the barrier function of the urothelium and thus successfully treat patients with IC. Groups of patients who have been given a diagnosis of IC, chronic prostatitis, and urethritis have been shown to have IC by virtue of their shared potassium sensitivity. It would seem, therefore, that mucous deficiency may be present throughout the lower urinary tract. If one is to rename these diseases, perhaps it is best to do so in reference to a shared loss of epithelial barrier function. A name such as lower urinary dysfunctional epithelium would incorporate all of these diseases under a single pathophysiologic process. As a result of these discoveries, a new paradigm for diagnosis and treatment is emerging."

I also got a lot of hits for heparinoid treatment. I don't know anything about it but it apparently is used in treatment for rheumatoid arthritis because it helps increase bloodflow. I don't know how this can be applied internally but it may be something (along with the above) to discuss with the doctors because more blood usually means less scar tissue. Here is another link to start you off:
>http://www.expertopin.com/doi/abs/10...ournalCode=eop

J****

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Thanks in advance for any help or advice.

[Noodle Salad]

Interstitial cystitis, huh. Do you know how she was diagnosed? As you found, dietary modification and finding one's own personal triggers are usually first line therapies. For interstitial cystitis especially, it seems people's triggers can be very different. Voiding diaries help. Then there are some medications out there too, you mentioned heparin but that's just one of so many. As for bladder distention, do you know if that was done under cystoscopy (bladder scope)? Do you know what they saw if that's what they did? Has she tried Elavil or Tofranil or any other medication at all? I'd go deeper but the work-up and treatment algorithm for interstitial cystitis is pretty complicated stuff.

At any rate, I hope she get's better soon.

[tweaked17]

Thanks Noodle Salad.

No, unfortunately we do not really talk (we live on opposite sides of the country) but I would like to help her because my father obviously cares about her. That's why in the e-mail I asked about the urine sample to make sure infection was ruled out.

I will ask if they had a scope in there, and if so, what the findings were. I don't know if they have tried any medications yet, it sounds like this was relatively recently diagnosed.

[JIGSAW]

BUMP...........my wife also has IC.

Any females on here suffer from it?

[zombieang]

I was diagnosed at 17 by my urologist through urine samples and symptoms I described. He actually believed that distention makes IC worse...so we have never tried it. My good friend had that done, then surgery and her IC is worse because of it.

Elmiron only works in about 20% of people and it takes a minimum of 6mos to see improvement, if any. I had to drink so much water with it that I would lose control. Not fun at all.

Elavil is great, I had taken that for quite some time and it helps to relieve the pain associated with IC but made me to sleepy that i had to quit. But still its a great medication if pain is the issue.

IC is not curable, only treatment is managing symptoms. For some months it will be pain that is annoying more than the slight incontinence, and other months it is the opposite. Have her find a great, understanding urologist that can help her and I agree with trigger foods but its not really how to deal with IC.

It is about managing water intake (if your urine is at all yellow it irritates the bladder) you need to keep irritants out of the bladder, and void frequently.

I am taking marshmallow root as its a natural alternative to reduce inflammation of the bladder lining and it helps with mucus membranes (natural remedies so we will see).

[JIGSAW]

Originally Posted by zombieang

I was diagnosed at 17 by my urologist through urine samples and symptoms I described. He actually believed that distention makes IC worse...so we have never tried it. My good friend had that done, then surgery and her IC is worse because of it.

Elmiron only works in about 20% of people and it takes a minimum of 6mos to see improvement, if any. I had to drink so much water with it that I would lose control. Not fun at all.

Elavil is great, I had taken that for quite some time and it helps to relieve the pain associated with IC but made me to sleepy that i had to quit. But still its a great medication if pain is the issue.

IC is not curable, only treatment is managing symptoms. For some months it will be pain that is annoying more than the slight incontinence, and other months it is the opposite. Have her find a great, understanding urologist that can help her and I agree with trigger foods but its not really how to deal with IC.

It is about managing water intake (if your urine is at all yellow it irritates the bladder) you need to keep irritants out of the bladder, and void frequently.

I am taking marshmallow root as its a natural alternative to reduce inflammation of the bladder lining and it helps with mucus membranes (natural remedies so we will see).

Marshmallow Root huh....never even heard of that. Thanks for the info on that, i'll get some for the wife!!!