Living with Interstitial Cystitis

My beautiful 24 year old daughter struggled with Interstitial Cystitis for several years before we could find any right path toward handling this painful condition.

She was 15 when she contracted an extremely serious case of tonsilitis, which was resistant to all medications the doctors tried. She literally was ill an entire summer, too ill to even operate to remove her very infected tonsils because they were so afraid of massive bleeding. At one point they had her on a “cocktail” of the strongest available antibiotics to try to handle the infection. Finally, that fall, the doctor did remove her tonsils and she got a little better. But from tonsilitis, she developed numerous digestive tract problems, which I suspected were related to the massive doses of medication; as if all of her bacteria, good and bad, had been destroyed or altered.

Heavy periods and endometriosis run in our family, and when she began experiencing such terrible abdominal pain, I thought it was probably related to her cycle. She also had migraines and weight loss and no energy.

This cycle of pain continued until she graduated from high school in 2001 and that fall she went away to college. She tried everything to feel generally better, including an organic diet, plenty of cranberry juice, exercise, you name it. And nothing got better, only worse. The symptoms, which seemed to be pervasive and also vague, now included what she thought were continuous urinary tract infections. She would call me crying, reporting that the pain was so intense that she could barely sit through class. She had a full ride academic scholarship and was in some very demanding architecture classes, with studio running into late nights and early mornings. I worried that all the stress of grade pressure, little sleep, and her general fragile health would all be too much. Also, she really only had the college’s clinic to go for doctor care, and the specialists we had been seeing in our home town was not an option, unless she actually could literally move back home/quit school.

We finally did get her back home for doctor care and her doctor, a specialist in Reproduction and Urology for Women at a respected university hospital diagnosed her with ICD. Up to that time, she had been told that it was everything from “idiopathic” to mental, with one doctor going into great detail about how she feared sexual activity and needed mental care!

The doctor who finally helped her did a cystoscope and found massive striation and bleeding, along with ulcers in her bladder. It was hard and small, not elastic and able to hold anywhere near a normal amount of urine. He also found endometriosis and lesions in her abdomen, which he removed. These were unrelated to her bladder problems, but a definite additional source of misery.

With a combination of drugs to rebuild the lining of her bladder, the discovery that antidepression drugs actually will also aid in pain management, a doctor who really had an accurate diagnosis and then how to handle that, and a LOT of patience and perserverance on my brave daughter’s part, she slowly got a little better and better.

What we did find out is that ICD is difficult to diagnose accurately and treatment is different for everyone. It is also an autoimmune illness, so paying attention to general good health practices and eradicating any unnecessary stresses is critical to begin to feel better.

Our advice is FIND A COMPASSIONATE DOCTOR and a true specialist. If a doctor doesn’t think you have ICD, visit another one right away. It is NOT in your head. There are also other treatments, such as pain management implants, that can help. But often you have to be informed and ask the healthcare professionals about these things. EDUCATE YOURSELF.

It has been several years since Kim’s pain has been for the most part in remission. She got married last year, after graduating from college on the Dean’s List. She has a wonderful husband who also looks out for her health. She will never be free of pain, but she knows how to take care of herself, including drinking lots of water. Interestingly, cranberry juice, good for bladder infections, is not good for ICD patients, neither is orange juice. The acid is a problem. A bland, easy to digest diet is also helpful, at least while you are having a rough time of it or to maintain the good times. Eliminating right away, and not waiting to go to the bathroom, is important.

This is Kimberley’s story, but mine too, because as her mom there wasn’t a day she was ill that I felt ok either. I am so glad to see her living a normal life. There were many years I wondered if she would be able to.