In 1992 I was living in a suburb of Washington, D.C. and had been employed as a paralegal for a Washington law firm for 16 years. I was in my 30s, had an active social life, many friends and for the most part a "great life". In March of that year my life would change and the nightmare began.
I developed what I initially thought to be a routine urinary tract infection. My doctor put me on antibiotics and, after taking them for three weeks with no relief, I knew that something else was wrong. Over the next nine months I saw six different urologists. I was urinating up to 30 times a day, and the pelvic pressure was so horrific I had difficulty walking. I was told that I was "stressed out", just "wanted drugs" and that I was "crazy". One doctor actually told me that I was "in denial that my biological clock was ticking." I had to take a temporary leave of absence from my job and find out what was wrong with me. I did not sleep because of the chronic pain. My family, who gave me support in the beginning, eventually began to believe the doctors. I went from a healthy, hard-working young woman to a walking zombie.
Things only got worse. My family encouraged me to seek psychiatric help. When I refused, my brother-in-law, who was a police officer, and the "quack" doctor I was seeing at the time deemed my problem to be stress related, petitioned for a court order and forced me into a psychiatric facility. The first thing they did was to shackle me down and admit that I had a mental problem. When I refused to do so, they told me that I had a bladder infection and put me on 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, they accused me of being bulimic and locked the door to my bathroom. I could only go a few times a day when a supervisor was present. The lowest point came when a case manager at the facility told my family that they should practice "tough love" with me--a popular term usually reserved for those suffering from addictions, moral dilemmas or criminal behavior. I was not engaging in any of these practices, and I was furious; however, I knew that, if I did not play by their rules, I could end up at the facility for months. I was released after 30 days, but I realized that, unless I could prove what was wrong with me and clear my name, I would have a "stigma" attached to me for the rest of my life. It became a vicious cycle--my family blamed the doctors for their inability to diagnose me and the doctors blamed my family who knew me well for not believing that I was sick.
I was fortunate to find a doctor who specialized in female bladder problems and made an appointment. I told him that "I would not leave his office until he found out what was wrong with me." He put me in the hospital, did a bladder distention and discovered that I had petechial hemorrhages and inflammation in my bladder lining. He made his diagnosis--I had interstitial cystitis ("IC"), a chronic inflammation of the bladder. Due to a defect in the bladder lining, IC renders its victims helpless--going to the bathroom 40 times a day is not unusual, and the pressure and constant pain account for sleepless nights. 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. The next step was to try DMSO, an anti-inflammatory liquid poured into the bladder which relieves inflammation. I noticed instant relief. I was able to go back to work and maintain a semblance of a normal life. Unfortunately, my system became immune to the treatments after a year and they ceased to work. The pain was so bad that I begged the doctor to remove my bladder. He stated "you don't meet those requirements--that would be like removing your head because you have a headache." Evidently the bladder has to be scarred to the point of not functioning at all to do this. This process can take years, and it is the "last straw". I also found out that I was carrying the antiproliferative ("APF") factor. My body, for some unknown reason, was releasing a protein--so my bladder was not the problem, it was the protein causing damage to the bladder lining. I heard about a new kind of surgery where the bladder was removed and a false bladder was made using part of the intestine. I talked to a few women who had had this procedure. They told me that at first they were pain free but then the false bladder got the disease also. At this point, I had lost my will to live. I actually thought about ending it all, and I wrote a note to my friends insisting that my bladder be removed and studied so that other victims may be spared the agony. But then I thought "everyone else will win" and I carried on.
My next step was to seek disability. When I applied for social security disability the hearing officer stated that "IC is not a real disease" and denied my application. I had to hire an attorney and two years later I was approved for disability. For the next eight years I was bedridden. I rarely left the house, and the only thing that kept me going was the knowledge that the FDA was going to approve a drug called "elmiron" which was specifically for IC patients. In 1998 I began to take the drug; it took nine months to work and 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 met a number of women and a few men who had been through the same experience that I had. The Wikipedia description of IC is the best explanation of the disease that I have read. I began to see articles in major magazines talking about the disease. I read that more funds were being allocated to study the disease and that the Social Security Administration had named IC as a "coded" disease, enabling patients to get benefits quicker. Patients diagnosed with "end-stage" IC are given pain medications to ease their suffering. IC patients are also entitled to handicap stickers and other benefits once denied to them because of the invisibleness of the disease. It seemed that more people were getting diagnosed and that a new awareness was taking place.
I am now in remission. The drugs I take do have side effects--a few of which are dry mouth and lack of energy. However, this is much easier to deal with than the pain of IC. I am trying to come to terms with the way I was treated by the medical profession. Although the pain of IC has been compared to the pain of end-stage cancer, it is hard to convince people of the severity of the disease. I often hear "you look fine, you can't be that sick" or "get over it, you are not going to die." Although I feel well enough to work again, job hunting is not going to be easy with such a gap in my resume. Another hurdle that I will have to overcome is that if I return to work "will the pain return?" The doctors have no answer to this, and I would have to convince the disability board that my pain had returned--I sometimes feel that I am between "a rock and a hard place."
The lack of compassion from doctors, family and peers, combined with the length of time it takes to get a diagnosis, leave IC victims drained physically and emotionally. Many victims tend to isolate themselves rather than explain the disease over and over again; thoughts of suicide are common in IC patients. I realized that my dreams of getting married, having children, continuing my career and looking forward to retirement were probably doomed, and this is not an easy pill to swallow. On a positive note, I have come to realize what a "good life" I had before IC and not to take anything for granted. Actually, IC is not that rare--over twelve million men and women have IC and many more may be misdiagnosed. I have become more politically active and have developed a greater compassion for those who suffer from chronic illnesses. I have also become acquainted with a number of women who suffer from IC through support groups on the internet and my story has been featured in Julie Geddes's book "Path of Life Journal". I think the greatest compliment I have ever received was when one woman called me her "guardian angel". I received numerous e-mails from others who said that my story saved them and giving me credit for not abandoning them after I went into remission.
Further developments include stem cell therapy which is now available to those with IC and has had a high success rate; however, the procedure is quite costly and not covered by insurance. Women are usually told that a cure won't be found in their lifetime because there is not enough research. A petition is now being circulated, with the sponsorship of Senator Barbara Mikulski of Maryland, to give research money to NIH and the University of Maryland in Baltimore to study IC. New drugs have to be developed to give sufferers a pain free existence and a hope that they may return to somewhat of a life worth living. For a long time I was embarrassed to discuss my illness and what I had gone through. I am now proud to share my story with others so that they may find some answers. I pray that a cure will be found and that no one will have to suffer from this devastating illness.
Thank you for reading my story.
Postscript--I will be moving to Tampa, Florida, in the fall and have found a part-time job. The old adages are true--every cloud has a silver lining.
September is "IC month". Please give your support to those suffering and to the medical community studying this disease.