Updated: May 14
Interstitial Cystitis (IC), which is a mouthful to say, is now more commonly called Painful Bladder Syndrome. Similar to many of the other chronic pelvic pain conditions it has a vague definition and is mostly diagnosed by ruling out everything else.
It is defined as pain or pressure in the bladder or pelvis causing frequent urination.
It is chronic. It is not a UTI and is not relieved by antibiotics. (See my previous post on what else a chronic UTI could be--this is one possibility).
Some medications such as Ibuprofen and Advil may help relieve symptoms. Anti-depressant drugs have also been shown to help relax the muscles around the bladder.
Also something that used to be done commonly to help with IC was bladder installations. This is when the urologist injects medicine directly into the bladder. For some patients this is quite painful and the pain of the injection can flare them up. For others the medication offers some short or long term relief lasting days or weeks.
It used to be believed by doctors that Interstitial Cystitis was caused by ulcers in the lining of the bladder wall. All those show up in some patients, most people with IC don't have ulcers, but still have the same pain. This is always confusing to doctors because they want an anatomical explanation for the pain.
We now know through many years of research and education that pain is complex. It isn't always directly correlated to anatomical differences or abnormalities, especially chronic pain. Chronic pain is defined as pain lasting greater than 3 months. With chronic pain there are changes in the brain and how it reacts in response to pain. There are changes in the nerves that carry pain signals along with other complex changes in the body, which means there isn't always a physical, anatomical correlation to pain. However, that does not mean the pain is not real or is over-exaggerated. Pain is pain and it is real.
Physical therapy can often help manage the symptoms of Painful Bladder Syndrome. We frequently find tight pelvic floor muscles that are painful and also pushing on the bladder. We can get those to relax with physical therapy treatment.
Also, we can help you tune into your body's signals. Once pain becomes chronic we sort of learn to ignore it because it is always there, however we can learn to tune in to what triggers the pain to flare up. It isn't easy and not always pleasant, but if one can learn what triggers their pain then they can manage it and react to it better.
I had a patient recently who had gone to many different doctors and specialists and finally received a diagnosis of Interstitial Cystitis. She took over the counter medications to take the edge off the pain. She had a few rounds of bladder instillations which sometimes helped and sometimes made her worse. Then her Pilates instructor recommended she come see me.
We worked together for a few months and pelvic physical therapy along with Pilates really helped her manage her symptoms. When she really attended to her health she did well by eating healthy, sleeping enough each night, attending physical therapy and Pilates. She learned how to control her bladder and not let it control her.
She also had a stressful job and was preparing to move. During work she would still get flare ups of symptoms, but less frequently and she had awareness of them, which helped, and tools to calm her symptoms, which also helped.
She realized when she was stressed about the upcoming move or when she was traveling to look for housing for her new job then she wasn't eating and sleeping as well and wasn't exercising regularly and her symptoms would flare. Once she got back to her routine then she would feel better.
Interstitial Cystitis/Painful Bladder Syndrome is an ongoing condition that may never go away 100%, but with the right people on your team helping you build healthy habits you can manage the symptoms and live a much more comfortable life. A pelvic physical therapist should be on that team to assess your pelvic floor muscles, teach you healthy bladder habits, help identify triggers to your pain and ways to manage your symptoms when they flare up.