Photo Credit: Jill Osborne
Jill Osborne, president and founder of the Interstitial Cystitis Network, talked to iVillage about her long journey with bladder dysfunction. She is 49 years old and lives in Santa Rosa, California.
A Painful Adolescence
"I began having symptoms of bladder frequency and urgency when I was 13 years old, in seventh grade. I couldn't sit through an hour-long class. I had to constantly ask to use the bathroom. I had this profound sense of pressure and feeling like my bladder was full, even when it was empty. My teachers were complaining, and I was very uncomfortable. It turns out that every single female on my mother's side of my family has a history of symptoms of frequency and urgency.
"When I was growing up in the 1960s and 1970s, there weren't any pediatric urologists around, and so I ended up going to a urologist in a clinic that served mostly elderly men. I remember feeling very uncomfortable in the waiting room as the only female and the only child. The whole experience was very isolating; I didn't know what was happening and I certainly didn't know anyone else my age that had these symptoms. The diagnostic testing and treatments were frightening because they were so painful. It's a big, scary world for a child."
"Throughout my early teens I was diagnosed with bladder infections, then with urethral syndrome and urethral stenosis, which meant that my urethra was narrow (a fact which I now realize was probably due to pelvic spasms). I went through many painful procedures called urethral dilations, in which my urethra was forced open and dilated and my bladder was drained. It was so painful that I couldn't help but scream. I had probably more than a hundred of those urethral dilations from seventh to ninth grade.
"In high school, my bladder symptoms improved. I became a professional tennis player and getting fit helped me; my symptoms decreased for a few years, but things worsened again in my 20s. In addition to bladder urgency and frequency, I developed other related symptoms, including pain in my vulva area (vulvodynia) and irritable bowel syndrome. On the surface, I accomplished a lot during my 20s. I earned a master's degree and received a presidential internship at the White House. But I also felt cheated, because when my friends would go out on dates, I couldn't go to restaurants because I never knew if the food was going to irritate my bladder or bowel. I came close to getting married a few times, but I never did. Ultimately what it came down to was that my life is exceptionally unpredictable, and not many people can handle that.
"At age 32, I was diagnosed with interstitial cystitis (frequency, urgency and pain in the bladder), and for the next year I lived with agonizing pain to the point where I considered suicide. I was drinking a quart of cranberry juice a day, because that's what I was told to do, but what I didn't realize was that I was pouring acid on an open wound; my bladder was very irritated and I was filling it with the acid in the cranberry juice. I found a support group and talked to a woman who told me to stop the cranberry juice and explained the role of diet in my symptoms. I was put on a low dose of pain medication, which was the first big step in healing. The second was changing my diet. I gave up coffee, tea, cranberry and orange juice, chocolate, alcohol and multivitamins, all of which are bladder irritants. Gradually I was able to stop the pain medication, and now, although I still have symptoms, they are under control. The nerves in my bladder have calmed down. The biggest challenge for me now is traveling. Long car rides and flights that are more than an hour can send my pelvic muscles into spasm and I experience pain and need to urinate frequently. I've said no to professional conferences and even to family get-togethers just to avoid traveling.
What I've Learned
"My advice to other women out there who are having symptoms of overactive bladder is to be honest with your doctor. It's easy to become emotional about this, because most women, by the time they open up to their doctors, have lived with uncomfortable symptoms in silence for a long time. Second, track your symptoms for a few days and bring the information with you. If you're not getting the care you need from your primary care physician, ask to be referred to a specialist—either a urologist or a urogynecologist who specializes in female voiding disorders. Ask about support groups in your area or on the Web. Look for one that offers support to women with pelvic pain, or interstitial cystitis, since, like me, many women with these conditions also have overactive bladder symptoms.
"If I could go back in time and talk to myself, the first thing I would say is, 'You're not a bad person. This is not your fault.' The second thing I would do is make sure that my family members, friends and the community were not harshly judgmental. We all have to be receptive to the fact that the bladder can be hurt and irritated, and if somebody is having bladder symptoms it's not a joke. It's real and they deserve compassion and care."