Imagine waking up in the morning to sharp, stabbing pains in your bladder. Your pelvic area is inflamed as though you ate half a basketball. You try to move to get out of bed and every bone, every muscle in your body, aches. You walk hunched over in agony to the bathroom and hold on to the sink for balance to sit down on the toilet. Your bladder is full, but nothing will come out. The pain increases. Minutes pass and maybe you squeeze out a few drops of burning hot urine. It may take twenty minutes before you can empty your bladder and when you finally get up, you instantly feel like you have to go again. There is no relief. Imagine having to urinate an average of 75 times a day. You fall asleep only out of exhaustion and are constantly awakened by the pain and constant trips to the bathroom. Imagine ground glass in your bladder or maybe a small forest fire. There is blood in your urine and you have an ever-present, constant need to urinate urgently.
Now...you go to the doctor and the nightmare begins. They tell you that nothing is physically wrong with you. Your culture is not showing an infection. You explain to them as best you can that you are not crazy and that the pain and swelling are real. And after all...they can SEE the blood. You beg for their help. You don’t know what’s wrong with you and you’re scared. You ask for something for the pain and they tell you “no, because there’s nothing really wrong with you”, or “no, we just can’t hand out pain medication to anyone who asks for it”, or “no, not until we figure out exactly what’s wrong with you”. And they send you home. But you’re still in pain, still bleeding, still in the bathroom every five minutes, and definitely still scared. So you go to a different doctor...this one is the Head of Urology at a prestigious hospital. This one tells you that it is not unusual for women your age to have emotional problems that affect their bladder. “You will just have to learn to live with it,” he tells you. You leave his office in tears. Knowing that you don’t have emotional problems and that your pain is real, you go to yet another doctor. This can go on for months and very often years before you are finally diagnosed with Interstitial Cystitis.
Interstitial Cystitis (IC) is typically described as a chronic inflammation of the bladder wall. Symptoms include, among other things, extreme urinary frequency, urgency, and pain. IC, once thought to be quite rare and occurring mostly in older women, is now frequently diagnosed in younger women, some men, and even some children. (Dogs and cats can also get IC.) There are varying degrees of IC (from mild to severe) and it can affect people of any age, race, or sex. However, IC is a disease that is most often diagnosed in women. (Although there is a current debate as to whether IC and Prostatitis are one and the same disease.) In 1987, it was estimated that approximately half a million people in the U.S. were suffering from IC. In 1997, just ten years later, the estimates are closer to two and a half million.
Unfortunately, IC is anything but a simple disease. No cause has been agreed upon. No treatment works for everyone. There is no known cure. It is very difficult to make blanket statements about IC, because there is little that has been proven scientifically. From diagnosis to treatments, controversy abounds. I don’t have all the answers and certainly don’t claim to. However, I have decided to share my experience and opinions regardless, with the hope that you will take from them what feels right to you and leave the rest behind.
As I sit here among my mounds of notebooks full of conversations among hundreds of IC patients and stacks of medical articles about IC, Prostatitis, and hospital-borne infections, I realize that I can put them all aside, at least for now, and simply write what I know; what I know to be true about this incurable and devastating disease “they” call Interstitial Cystitis. I choose for this book to be full of information that is not already “out there”, that has not necessarily been “spoken”, except maybe within the circles of IC patients themselves.
There is much mystery surrounding this disease. So little has been proven and not much can be said to be “known”. There is risk in coming forward and saying what you know to be true, when not all the information has been proven scientifically or approved by the AMA as such. However, I take this risk freely, and beholden to no one (not the medical community, nor any organization or corporation) as many of my opinions are those held by many (but, of course, not all) IC patients. In fact, there will most likely be many IC patients who disagree with my opinions about what IC is and how to treat it. But that is okay. If, in your disagreement, you come to understand your IC better, then I am very pleased.
I write To Wake In Tears from a deep understanding of the suffering IC patients endure, not only from the disease itself, but from the doctors, medical community, and others in their life as well. It is you, the IC patient, who I do not want to disappoint as I write this book. It is you who is important to me. It is you who I speak to now.
I share my story with you first because I know that there are many IC patients who have had similar experiences. It is worth telling if I can prevent at least one person from having to go through even a portion of what I (and so many others) have been through and/or at the very least let you know that you are not alone if you’ve already been through it yourself. It has been very difficult for me to write this part of the book. Mostly because of how upsetting it is to remember the physical pain, the emotional hurt, the anger, the stress, and the fear I’ve felt over the past three years. To remember…all the times…I woke in tears…