The following story has also been featured on the ICN. Theresa has been kind enough to share her amazing story with us here at IC Success.
My name is Teresa Linton. Before being diagnosed with interstitial cystitis,
I was living in a suburb of Washington, D.C. and had been employed at a law firm
for 15 years. I was 38, had an active social life, many friends and for the most
part a "good life." In March of 1992 my life would be changed. Here is
I had to take temporary leave from my job until I could find out what was wrong with me. I did not sleep because of the intense pain. My family did not believe anything was wrong with me and that "if seven different doctors could not diagnose my problem, then I must be faking it." I went from being a healthy, hard-working, relatively young year-old woman to a walking zombie.
Things only got worse. My brother-in-law, who is a county police officer, made the decision that I was crazy and needed psychiatric help. Since I refused to agree with this, he got a "court order" and forced me into a psychiatric hospital. The doctors there knew nothing about bladder disorders and told me that all I had was an "ordinary bladder infection" and gave me antibiotics. I pleaded with them to let me leave the hospital so that I could find a specialist, but to no avail. My normal weight of 105 lbs. had dropped as a result of the stress I had been under, and, because I had to go to the bathroom constantly to relieve the pain, they accused me of being bulimic. They locked the bathroom in my room and would only let me use it a few times a day. Anyone with interstitial cystitis has got to be able to use the bathroom at all times because of the incredible pressure. However, I knew that if I complained they would not release me from the hospital, and I had to get out of there and find out was wrong with me. After 30 days they decided that I was "better" and released me.
I did some research and found a doctor who specialized in urinary problems of women. When I walked into his office I weighed 90 lbs and told him that "I would not leave unless he found out what was wrong with me." He said "I think I know what you have--let me put you in the hospital." After performing a bladder distention he discovered petechial hemorrhages and inflammation in all the layers of my bladder (the hallmarks of interstitial cystitis) and made his diagnosis. I had interstitial cystitis ("IC"), a chronic, incurable inflammation of the bladder lining. Although I was relieved to get a diagnosis, I was upset to learn that the cause of the disease was unknown and that there was no cure.
He told me that he would try different things to relieve the pain. The first thing he tried was DMSO, an anti-inflammatory liquid poured into the bladder which relieves inflammation. I noticed an instant relief. I was able to go back to work and continued the treatments for a year. Unfortunately, my system became immune to the treatments and the pain returned. I was more depressed than ever.
My next step was to seek disability. When I applied for social security disability, I was turned down. The hearing officer stated that IC was not a "real" disease. I had to fight for someone to believe I was really ill all over again. I hired a lawyer and was granted SSI disability after two years. For the next four years I was bedridden. I rarely left the house and was in incredible pain. The only thing that kept me going was the knowledge that the FDA was going to approve a new drug designated specifically for IC called elmiron. I also began to meet other women and men who had the disease. I read every book I could find on rare diseases of the bladder. Finally in 1996 elmiron was approved and I began to take it. It took it nine months to work but I began to get relief. I also combined it with elavil, an old tricyclic antidepressant, that in low doses is a pain blocker.
I began to feel like my old self. By this time the internet had come along and I found a number of sites devoted to IC. I met women and men from all over the world who had been through what I had. I began to see articles in major women's magazines bringing attention to the disease. I read that more funds were being allocated to study women's diseases, among then IC. It seemed that more people were getting diagnosed and that a new awareness was taking place.
I have now been pain free for five years. One downside is that the drugs do have side effects. They can make you lethargic and cause dry mouth and retention. However, this is much easier to tolerate than IC. I am trying to come to terms with the way I was treated by the medical profession, my family and peers. People think you are a whiner and you look fine so how could you possibly feel bad. "Things could be worse, you could have cancer" is a comment I hear frequently. The disease financially destroyed what I had worked for all my life. Although I feel well enough to work again, job hunting is not going to be easy with such a gap in my resume.
The lack of compassion from doctors, family and friends, combined with the
length of time it takes to get a diagnosis, leaves IC victims drained physically
and emotionally. I was embarrassed for years to discuss the condition and what I
had gone through. I am now proud to share my story so that others will not
experience what I did. With new research and a better understanding of the
existence of this horrible disease, I pray that a cure will be found and that no
one will have to suffer from this devastating illness.