My Interstitial Cystitis Story: I Didn't Give Up
My bladder pain began literally overnight. One day I had no symptoms, and the next day I was barely able to walk. How? Well, in my case, it began in a swimming pool.
I loved to swim, often several times a week. Unfortunately, poorly trained staff at my gym did a routine chlorine and acid adjustment of the pool water but forgot to put the “closed” sign up. I was later told that several women had reported similar problems, though my case was apparently the worst. The symptoms appeared later that night. It felt as if I had a horrible bladder infection with soon to be daily symptoms of frequency, urgency, and, for the first time ever, bladder pain.
My first diagnosis was “chemical cystitis.” My doctor thought that I had sustained a chemical burn or irritation. Yet over the following year, my symptoms worsened, and I was eventually diagnosed with interstitial cystitis (IC). I had “flares” first once, then twice a month. It quickly became weekly and then, finally, progressed to daily symptoms. I was unable to sleep through the night and had moments of intense frequency, but the worst symptom was severe pain whenever my bladder filled up with urine. Driving in a car became agonizing, particularly if I couldn’t find a restroom. “Holding it” was excruciating.
Like so many other people with IC, I didn’t understand what was wrong with me. I had no idea that the bladder could hurt so badly. Bladder pain is characterized by being relentless and difficult to ignore, and I certainly found that to be true. On some days, I couldn’t sit, stand, or lie down with comfort. All I could do was pace and cry. Naturally, I assumed the worst and suspected that I was dying of cancer, though my doctor was positive that it wasn’t. It was a devastating and frightening period of my life.
A life-changing phone call
Hope first came in the form of an IC support group leader, who, in just one phone call, taught more about IC than my doctor had in the previous year. This is worth saying several times. Talking with other IC patients is so important. It reminds us that we’re not alone, and it can tap into a body of knowledge and coping skills that some care providers may not be familiar with. For example, that group leader told me about the IC diet and how important it was for me to protect my bladder by not introducing irritating acidic foods, like coffee, cranberries, or soda. I had been drinking cranberry juice by the gallon that first year in a desperate attempt to feel better. Arrghh! No wonder I got worse. I was pouring acid on the wounds in my bladder every single day. By stopping that alone, I was able to reduce my dietary flares dramatically.
The second thing that she gave me was permission to stop and rest. I was forcing myself to walk, to exercise, and to be with family or friends, despite the fact that I was in horrible pain. Why? I didn’t want the IC to “win.” But, as she said, pain is a signal to our bodies that something is wrong. We would never run a marathon on a broken leg, so why do we try to run a marathon on a broken bladder? I realized that I had never stopped and just rested. I finally gave myself permission to say “no” if my bladder hurt. What a concept.
Help in dark times
These two pearls of wisdom gave me hope. Believe me, I needed it. Despite my position as a fundraising manager with a major nonprofit, my boss didn’t believe that I was sick. I was told that I came from “weak stock” and that I “didn’t look sick.” I was constantly defending my need for doctor visits, especially for those weekly DMSO treatments. I eventually lost my job and health insurance in a downsizing that targeted only disabled employees.
Yet, in the face of this adversity, good things were happening as well. My parents offered a steady supply of encouraging words, hugs, and patience. On the days when I could barely walk, they drove me to the doctor. They didn’t pressure me to attend family events, holidays, or parties. They gave me time and let me heal. Many people receive no support from home despite the fact that they are in pain. This is a great tragedy. We didn’t ask for IC. We didn’t cause IC. IC patients deserve compassion and respect, not accusation nor blame.
My diagnosis and treatment
Unlike many people who see five or more physicians before receiving a diagnosis, my first urologist not only believed in IC but was informed about therapies and pain care. In that first year, we tried several treatments with fairly poor results. I was unable to tolerate the antidepressants that were prescribed. DMSO, the only FDA-approved treatment for IC at the time, did little for me. I was eventually referred to UCSF Medical Center for an experimental nerve stimulation program developed by Marshall Stoller, MD, that helped break me out of my pain cycle. One interesting note about Dr. Stoller: I was quite nervous to see a new doctor and was in tremendous pain after a two-hour car journey to his office. When he first walked into the room, he looked at me and said, “You’re in agony, aren’t you?” at which point I burst into tears, grateful to have someone really understand the depth of the pain I had been struggling with.
My recovery was slow by steady. Diet modification was critically important. Once I eliminated the coffees, green teas, sodas, cranberry juices, and a few other foods, my flares began to decrease. I also had success using the antihistamine hydroxyzine (aka Vistaril), which is now commonly prescribed for IC patients, particularly those with a history of allergies. Of course, there are now many new therapies for IC that weren’t available back then. But, luckily, the combination of diet and the antihistamine worked well for me.
Pain care was also vital. In that first year, I visited the emergency room twice for severe pain that over-the-counter pain relievers did not help. Stronger pain medication allowed me to sleep and function again. If you’re suffering from bladder or pelvic pain, please ask your doctor for help. The IC Survival Guide, a book written by Robert Moldwin, MD, has an excellent section on pain care and pain medications. You can also find more information on our website.
In that first year, I also spent several months keeping a voiding diary so that I could share with my doctor how I was responding to treatments. It was a very fruitful exercise that also managed to reduce my anxiety. Why? It taught me that my flares were fairly short term and that some of them, such as the flare that occurred when I ovulated and/or before my periods, were predictable and not worth a frantic phone call to my doctor every month. It gave me a sense of control. One of the best parts about doing a voiding diary was that it made a case for having some pain care. Doctors usually can’t prescribe pain medication without first documenting the need for it in a patient’s medical records. A voiding and pain diary is an excellent way to do this.
A few years after my diagnosis, the role of the pelvic floor muscles in triggering some pain became known. Doctors often describe muscles so tight that they feel like rubber bands. Ironically, I began to notice that I had trouble starting my urine stream. I would sit for five, 10, or 15 seconds before I could relax enough to empty my bladder. I was also struggling with a deeper, vaginal burning sensation that I incorrectly assumed were yeast infections despite the fact that my yeast cultures were usually negative. A trip to a physical therapist for a pelvic floor assessment revealed that some of my pelvic floor muscles had become quite tight and painful, which explained the new symptoms I had developed. I began a course of physical therapy, which helped tremendously.
Support became a cause
I started my first IC support group three months after my diagnosis because I needed to talk with other patients. You can imagine my surprise when, six months later, our little support group became one of the nation’s largest, with more than 300 members. It was a joy to meet other women and men with IC, and they gave me an important reality check. I could see that my IC symptoms were actually quite mild at times compared to some other people who, in my opinion, showed great courage in the face of a medical system that didn’t always treat them kindly. I realized that patients needed better support and information, particularly those who were too ill to attend a meeting.
The Internet was new but could bring support into the homes of the people who needed it most. In 1994, I started the first bladder support groups on America Online and launched the IC Network website, the first ever focused on IC. The IC Network now facilitates the largest support group in the world, provides live support chats, 24/7 support forums, webinars, classes, and guest lectures and produces a quarterly magazine, The IC Optimist, for patients and providers.
The family connection
In 2010, we now know much more about IC, including the fact that it may have a genetic connection in a small percentage of people. My grandmother, mother, sister, aunt, and cousin have had various bladder problems over the years and were told that they had “honeymoon cystitis,” “urethritis,” and/or “very sensitive bladders.” As a teen, I had two years of urinary frequency that my doctor diagnosed as urethral syndrome. I went through dozens of urethral dilations before the symptoms finally resolved in high school.
In my 20s and before my pool accident, I developed some of the related conditions that are often seen in IC patients, including vulvodynia, irritable bowel syndrome, allergies, and many food sensitivities. My family members also struggled with these, thus I suspect that IC is hereditary in my family. I also believe that the chemical accident was just a “triggering event” that involved my bladder again.
When you meet people with IC, you quickly see that there are some who develop IC after some type of traumatic event, such as a man who fell off his roof, broke his leg, and woke up after surgery with IC. But others appear to have had symptoms from a young age, as well as some of the related conditions. This is part of the mystery of IC, and, thankfully, researchers are working hard to figure out what’s happening and why.
A happy ending
My life is good. My bladder symptoms are few and far between, provided, of course, that I protect my sensitive bladder. I’ve learned that I can tolerate two acid foods a day, but eating three can trigger some bladder discomfort. So, I can now enjoy an orange or pasta, but I just don’t eat a lot of it in a given day. Of course, there are some foods that I avoid for my IBS. Chocolate, for example, gives me wicked bowel spasms.
I’m very proactive and assertive about my health. I exercise regularly. I never allow an IC flare and/or pain to get out of control and tackle it early. If I start to feel pain or discomfort, I stop what I’m doing and try to rest for 30 minutes, perhaps using a heating pad to calm my pelvic floor. I wait for another thirty minutes and if the symptoms haven’t improved, I start my flare management tips and, if needed, use medication.
The IC Network magazine is called The IC Optimist for a reason. I am, at my core, very optimistic about the future. Research continues at a vibrant pace, and many new therapies are in development. Carry hope in your heart and remember that you are not alone. For more information about IC, please come visit our website. We also have a “Living with IC” video series that you can watch on YouTube.