please help me

[elbellz]

I am desperate. Beginning seven weeks ago I have frequent urination (every hour, even during the night), pressure, the feeling of not being able to empty my bladder, burning, and seeming to urinate far more than I drink. My three urine cultures have been clear, but I was still treated for 6 weeks with doxycycline. No help at all. I had a cystoscopy 4 days ago which found, I was told, small fissures, no ulceration, and a constricted urethra. My urologist said he stretched my urethra, and it seemed to help right at first, but today all my symptoms have returned. I can't live like this. What should I do next. My urologist is convinced it is interstitial cystitis even though I have never had a single UTI. His only suggestion is Elmiron, which he does not want to start for 3 weeks.

[cmclien]

Hi, IC can come on quickly and does not follow a UTI.  The IC Network has great help www.ic-network.com.  Diet is a huge role in managing IC, such as cutting out coffee, citrus, caffeine, chocolate and other drinks/foods that can irritate an already irritated bladder like yours.  Alot of people find Elmiron helpful but it takes a while to work.  There is also Elavil a low dose tricyclic antidepressant that takes away pain if you have alot of pain and drugs like ditropan xl which relax the bladder and cut down on frequency/urgency/some discomfort and pain.  I think a combination of these drugs usually gives people quite a bit of relief and also following the IC diet which you'll find at that website too.  I don't think I have IC but probably overactive bladder and the ditropan xl has helped alot!  I don't see a urogynecologist though for a couple of months.
Good luck!

[mostlysilent]

If your urologist is convinced, I would proceed with self-treatment.  They see a lot of bladders in their work, and are able to recognize IC in it's early stages.
And that is the good news for you- the earlier you start treating it the better.

I know when I was first diagnosed I initially scoffed at all the diet recommendations.  I mean, what CAN you eat or drink?!!!  However, after Elmiron, bladder installations, etc. with nothing really helping I was desperate.  so I tried cutting out caffeine, citric acid in ANY form, and potassium, mostly from salt.  This really helped me for quite a while.  Unfortunately, I was diagnosed in my 40's, and have probably had IC all my life.  The damage was pretty bad at diagnosis, and even with diet I'm pretty miserable now, 4 yrs. later.

I truly believe that had I known about IC earlier I could have prevented some of the damage.  My personal belief is that my urine is toxic to my bladder, the pain tells me this.  If I eat or drink something with citric acid, for instance, the pain is almost immediate.  Carbonated beverages are another serious pain, pardon the pun.

I hope this has helped.

[APD1964]

You don't have to have had a UTI to get interstitial cystitis.  I have it and I never had a UTI. My doctor put me on Elmiron. It helped with my pain but it caused me to feel like I was freezing down to the bone. I found out that's because it also has a mild blood thinning effect. My doctor told me to  not take much vitamin C or eat acidic foods and drink because it would cause my urine to be to acidic and feel like I was peeing acid.