Diane Lang, age 40, had bladder problems for nearly a decade, but it wasn’t until she had multiple tests and surgery that she discovered she had interstitial cystitis. She didn’t have much success with medication and has turned to lifestyle changes to combat her urinary urgency. She cut caffeine and spicy foods from her diet and now relies on meditation, pelvic muscle exercises, and focusing on the positive in her life to get through flare-ups in symptoms.

By As told to: Tammy Worth
February 29, 2016

Courtesy of Christian PollardI started having symptoms of overactive bladder about 10 years ago. I spent four years going through test after test and was told I had stomach or ovary problems. Finally, about six years ago, I underwent surgery, and they found little ulcers all over my bladder. I was diagnosed with interstitial cystitis (inflammation of the tissues of the bladder wall).

My condition was pretty extreme, and I had to rearrange my whole life. Whenever I had a flare-up, it was like I had a bladder infection, only worse. In one hour, I would have to pee three or four times. At night, I would sometimes pee 60 to 100 times.

It was extremely painful, and I would get lower pelvic pain that was similar to menstrual cramps and that would shoot down my legs. If I tried to hold it in, the pain only got worse.

The doctor offered me Elmiron but said it helps only about 50% of patients. You also have to be on it for six months or more to see if it works. The side effects were really bad. I had dry mouth and hair loss.

So I decided to quit taking it and to change my way of life. I dropped caffeine because that makes it worse. I have to avoid spicy foods and anything that is acidic.

One of the biggest things I had to do was change my mentality. Having overactive bladder stresses you out and that only makes it worse. I live in New Jersey, and if I had to cross over the George Washington Bridge to go to New York City, I worried. I can't go to the movies because I can't leave my kids alone in their seats while I go to the bathroom. You always have to map out where the bathrooms are.

You have to deal with a lot of that, and I have worked on handling the anxiety. The more stressed you are, the more you have to pee. I meditate and do breathing exercises, where I hold my breath in for a count of three, hold for three, and release for three. I also do a lot of exercises to strengthen my pelvic floor muscles.

I started doing gratitudes, where I spend some time thinking about what I'm thankful for each day. This makes me able to see the positive instead of getting angry and overgeneralizing, feeling like my whole life sucks. This is what I have to deal with. I can't cure it, I'm stuck with it, but it's not deadly.

I started teaching anxiety groups and learned to really concentrate on what I can control. This makes you able to focus on the present. I look at my disease and figure out what I can do to help my recovery, treatment, and healing. Taking control for me meant doing research, reading books on the subject, finding support groups and websites, and trying alternative treatments. The minute I took control of my disease and life, I felt an instant perk in my mood.

I have also learned to get support. The more support I had, the happier I was. Form a support group if you have to, but get support. It's also a good idea to focus on your strengths and don't overintellectualize your disease—feel the bad, and then move forward.

And one of the most important things for me is to remember that everything is temporary. Yes, you're in pain, or you may be in a hospital, or losing your hair, etc. But I always remembered that this will pass. This is only temporary, and even though it sucks right now, it won't always be like this.

I still have flare-ups, but they are fewer now that I've learned what my triggers are and to stay away from them. I'm 50% to 60% better than I was years ago when I first found out I have this.