Living with Interstitial Cystitis

I was 41 when the symptoms got really bad. Looking back I had been having bladder pain on and off for a while, especially before my period.

It continued to get worse, I referred myself from my internal medicine doctor to a urologists, he did a laproscopy, but did not distend the bladder, fulgerated two ulcers He had me afraid I had Bladder CA, but it was chronic inflammation. He said that was nothing to worry about, put me on something to relax the bladder and later an antidepressant, and then Elmiron. He told me he thought it was probably something for the gynecologist. Gynecologist said no urologists. She was the right one. She did instill lidocaine and Some kind of sodium bicarbonate into my bladder. It worked well for a while. Capacity was still small. It made me drunk at the time because my bladder was like raw meat inside. The lesions the urologists had fulgerated never healed. They bled when I changed urologists and he distended the bladder at about 180 mls. He stopped because he could tell I was in pain under anesthia.
I went for 2 years like this, family saying you need to get out more. Daughter not understanding why I did not go to everything at school. A 10 to 15 minute trip in the car was a nightmare. Trip to Walmart. Go to Bathroom when get there, go to back and go to br, shop, go to br, shop, go to br, go to front, go to br, check out, go to br. Don’t ride with anyone who does not understand. My best friend parked far away because she thought I needed the exercise. My car was keyed at shopping mall because I parked in Handicap space. The pain was so severe I urinated on myself several times to releive it. Starting wearing diapers, tried to sleep in diapers. Slept on toilet, read a lot, learned alot, what I can remember because of pain meds. No one understood, especially the urologists. In Dec 03 he patted my back and said, well you know how IC is, see you in April. I would like to sue him. And the makers of Elmiron. I worked for Gyn and when the Elmiron Rep would come in I would be furious.

Finally got on Internet and found my hero, Dr Zimmerne, Professor at UT Southwestern Medical Center in Dallas. He saw me in January.
He had to travel to Europe twice before my surgery so it was delayed. But by February he knew exactly what I needed. A Bladder Augmentation.
Sounds awful, was awful, but the pain is gone.

He was very understanding, he listened, talked to my family, did not make me think I was crazy. No one understands because you look normal.
He told me you do not have to live like this.

He is my hero. Don’t mess around with Doctors that aren’t familiar with other treatment options.
Most urologists just give you what the drug companies or journals say.
Elmiron, Elavil, Tofranil, something, like Urosept.

Don’t wait. Don’t waste your life. They should refer you some where else.

At least try the bladder instillation with lidocaine and Bi………

Go to a University or something.

No doctor should be so vain or whatever to think if they can’t help you no one else can.

Please listen.

I couldn’t sleep more than 30 minutes at a time. When you lay down your body excretes fluid and if you have bad bladder look out.
Did my first urol even mention this. No.

Don’t waste your time on Elmiron, it is something that won’t help, but it won’t really hurt you, so the drug companies push it. No law suits, just money.

Get the help you deserve.

I still am not over the depression from the pain.

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