Living with Interstitial Cystitis

I am now 42 years old and have suffered from ic symptoms since age 12. I had my first urethral distension at age 12 1/2 and over the years I have endured EVERY treatment for ic thus far available- including all of the wonderful tests necessary to finally achieve the actual diagnosis at age 29. I have had multiple urethral distensions, hydro-distensions, cystoscopies, laproscopies, long term anti-biotic treatments, silver nitrate instillations (talk about PAIN) , RIMSO 50 instillations, colloidal silver cocktail instillations, I have lost all of my hair as a side effect of Elmiron …it goes on and on….At this point my urologist thinks I should go for total bladder removal with option of eventually having a “bladder” made from a piece of my large intestine. But I am not ready to live with a urostomy bag to be honest.

I have to say that the greatest advance that I have seen made in this area is the fact that at least SOME doctors are willing to treat our pain as effectively as they can. Even that however has had its drawbacks for me. I started on vicodin every now and then many years ago and slowly progressed to ms contin (morphine) then to injectible demerol/phenergan then to fentanyl patches.

Although the 1990’s passed in a narcotic blur at least I was alive and basically pain free. Through the years though my tolerance to the opiates grew to the point that even with 45 milligrams of instant release morphine every 4 hours , I still felt excruciating pain and found myself urinating up to 50 times a night, basically sleeping moments at a time between voids as I cannot stand to have even what seems like a drop of urine in my bladder.

And then it happened. My doctor retired and transferred me to a new doctor who observed a different philosophy with regards to the prescription of narcotics. I was informed that I would have to “cut back” and immediately my meds were cut almost in half. With no pain clinics in my area /state I suddenly found myself in extreme suicidal pain AND in opiate withdrawal. I subjected myself to methadone detox and survived in horrible horrible pain for several months not sleeping, not able to eat just about anything and constantly on the toilet unable to work or maintain any semblance of a life.

Finally I begged my husband to help me take my own life unable to go on in such pain. He of course would not do it. Absolutely at my wits end, I drove myself to “the bad part of town” and managed to purchase heroin. That day I used it by snorting it believe it or not with instructions I had procured from the internet and that night I slept a peaceful sleep. That was 2 years ago and now I inject myself with the drug 5 times a day, take pyridium and watch vigilantly my diet.

I feel much bitterness towards the health care establishment and our government for it attitudes toward women patients and narcotics……but that is another story.

I can no longer travel anywhere, because I cannot stray from my connection. My life is lived in 4 hour increments between shots…..I hide my arms for they are covered with bruises and I live in terror of the day I will get caught as it is illegal……..
Understand that I have tried EVERYTHING available to an ic sufferer, I have researched thousands of hours and left no stone unturned. I have always been an upstanding tax-paying citizen and had never even used illicit drugs ever before that one fateful day. I have an education , in fact I am a psychologist although I no longer practice.

The pain caused by this disease I feel pushed me to the absolute edge and this is no solution but for me I needed relief or I would have killed myself. I now work as much as possible to see legislative changes with regards to narcotic prescription and as an activist to bring awareness to ic, but I anxiously await a cure or some advance before another person has to go through what I endure daily.