medications just masking symptoms?

[brett]

Hi..
I hope someone can explain how the bladder actually gets better or feels better if there is no cure for IC.All the medications except for Elmiron and instillations..seem to mask the symptoms taking away the pain(antidepressents,narcotics) So if u cannot take the elmiron or do the DSMO treatments-do the little ulcers or inflamation in your bladder just stay there and get worse and worse? how about the people that do not show signs of the reddness upon hydrodistension and everything looks normal except u still have IC? How would the Elmiron or dsmo help them?My bladder hurts horrible 24 hours a day and I take ultram but I know it justs masks my symptoms so how can I ever feel better?
I hope someone can understand my question and help me. also the diet doesnt work for me as well.

[ICNDonna]

Sometimes the only medical treatment available for a problem is to control the symptoms. IC is not considered to be a progressive disease. I am one who is helped by hydrodistentions. I know this is not curing my IC, but my IC has not worsened since I was diagnosed thirty years ago. I don't refer to this as "masking" the symptoms, but rather as "controlling" the symptoms.

What treatments have you tried?

Donna

[ICLori]

Hi, Brett, ICNDonna is 100% right. There is no cure for this disease, so the best doctors can do for us is to control or mask the symptoms so that we can function daily.

There is so much research going on now on IC, (there was practically no research done on this in years past) that we can be hopeful there might soon be a more effective remedy available or even a cure. We just have to hang in there until that day comes.

Blessings, Lori

[glowbug]

When my IC first started, my symptoms were very mild. I was misdiagnosed for many years, and just kept eating the very foods that were bothering me. My IC did progress. I went from very mild to severe as my doctor puts it, by the time I was finally dx.

My husband and I discussed the very issue that you are talking about. We decided not to mask my symptoms with pain medicine, as we felt that would allow me to eat foods that maybe irritating to my bladder, and cause further damage and more pain.

I did opt to follow the IC diet. Did I see an improvment in my symptoms? No. But, my pain was much worse when I ate the foods I shouldn't be eating. I stayed on the diet, and used no other medicines, mostly because they were not avalible to me at the time.

Over time, and it was a slow progress, I did feel an improvement in my bladder. My bladder is much better today than it was 7 years ago. I can, from time to time, enjoy certain foods with my family again, that I would never have considered eating years ago. Most days are pain free for me now, I go to the bathroom about 5 or 6 times a day, and I seldom have urgency. That was not my life 7 years ago, back then I felt constant pain, and pressure, urgency, frequency, and burning. At times my bladder felt like it was going to explode, the pain was so bad.

In my opinion, the bladder can "feel" better just by removing the constant irritants it has to put up with daily. Will this cure your IC? No. Will it help you feel better, if you are patient, Yes.

[Sarojini]

I can remember having frequency and urgency as early as 8-9 years old; however, the episodes always passed and I ignored them until Dec 2003 when everything just blew up and I suffered unbearable urgency and for the first time, horrible pain. At that time, I found out I have severe IC -- the urologist who diagnosed me told my husband after my cysto/hydro that my bladder was a "bloody mess", with scar tissue in it as well. Even though he could distend my bladder to 600cc under anesthesia, he told my husband that I was not making mountains out of molehills and probably literally DID have to pee ALL of the time, because he would be surprised if I could hold more than 90cc in my bladder without extreme pain. Now, I don't know if this is evidence that my IC progressed from when I was a little kid, but the others are right; IC is generally not progressive, and most patients remain stable.

Even I have found that medication helps me feel better, and I tend to look at it as symptom control rather than masking symptoms. Once you find what works for you, you will feel better... sure, it means taking meds, but I'd rather do that than deal with pain and other problems. I would rather be out and about and functional with the help of meds rather than feeling like I can't be more than 10 feet from the toilet ;)

I also follow a modified IC diet, as some of the things on the "no" list do not bother me, while some on the "ok" list do bother me. That may be the case for you too -- you may think the diet doesn't work because when you eat something you think is ok, it really bothers you. You can try to keep a food diary and see if your pain fluctuates after eating -- I know this can be a pain in the rear, but sometimes recording EVERYTHING you eat for a couple of days can really give insight into things. This is how I discovered that some stuff on the "ok" list actually bothered me. That's the silly thing about IC -- everyone with it is so different and responds so differently to things.