5 Tips for managing interstitial cystitis (bladder pain syndrome)
Interstitial cystitis (IC), also called bladder pain syndrome (BPS), is a condition that causes chronic pain in the bladder or pelvic area. In addition to pain, common symptoms of IC include a persistent urge to pee and frequent urination during the day and night. Symptoms may be relieved temporarily by urinating.
IC is a challenging syndrome to diagnose and treat. Often, patients will go through many lab and diagnostic tests to rule out other causes for their symptoms. The process of diagnosis and treatment can be lengthy and frustrating. IC is only diagnosed once all other known potential causes of bladder/pelvic pain have been ruled out.
To date, we don’t know what causes IC, but we do know that it can severely impair an individual’s quality of life. Below are some strategies for managing interstitial cystitis.
Come prepared for your specialist appointments
Complete any requested lab work or questionnaires prior to your appointments. Make a list of your symptoms, highlighting one or two symptoms that are the most bothersome. Think about how you would rate the worst symptoms on a scale from one to ten. One being minimally bothersome and ten being the worst pain imaginable.
Be open to trying a combination of treatments
Often trial and error is required to find the right treatment or combination of treatments for IC. Treatments may include diet modification, pelvic physiotherapy, stress-relieving activities, oral medications, medication inserted directly into the bladder (bladder instillation), bladder distention (stretching the bladder during a procedure called a cystoscopy), medication inserted into the bladder wall (such as Botox or steroids), nerve stimulation or surgery. Most often, a combination of these treatments provides the best results for patients.
Set realistic expectations
Unfortunately, there is no magic pill or surgery that will cure IC. It may take months or longer for you to experience improvements in symptoms following treatment, and many treatments will require effort and regular practice, such as physiotherapy exercises or dietary changes.
Keep a treatment journal
Keep track of the treatments you’ve tried and keep notes of their effectiveness. Tracking your progress will help your urologist assess the effectiveness of the treatment and make recommendations for further treatment. A journal is also helpful if you’re referred to another type of specialist or health professional, such as a physiotherapist or a chronic pain specialist, as you’ll have specific information at your fingertips. Your urologist may also ask you to keep a bladder diary.
Find support
IC can be a difficult topic to discuss with friends and family. You may find it helpful to join a support group or work with a counsellor.
Resources
Mayo Clinic
Information about interstitial cystitis
Interstitial Cystitis Network
https://www.ic-network.com/
Interstitial Cystitis Association
https://www.ichelp.org/
Alberta Psychological Association
Find a counsellor
