What To Do When You Get Diagnosed With Interstitial Cystitis
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Interstitial cystitis, also called painful bladder syndrome (IC/PBS), is a complex condition that involves many parts of the body including the bladder, pelvic floor muscles, and nerves.
IC/PBS symptoms can range from mild to debilitating, but they can be managed with conservative treatment.
4-12 million people (all genders) in the U.S. have IC/PBS, though these estimates are likely lower than the true number due to the condition often being mistaken for something else. Symptoms of IC/PBS vary from person to person, but there are several common symptoms:
Urinary frequency – having an increased number of times per day and night of urination
Urinary urgency – having a very strong sensation to urinate
Pain – this can be in the abdomen, urethra, bladder, vagina, testicles, and/or perineal area
If you were recently diagnosed with IC/PBS, follow these tips to get a head-start on managing your symptoms. If you’ve already been diagnosed with IC/PBS, check in with these tips to make sure you’re on the right path.
Understand the condition
First, understand that no single treatment or diet has been found to be effective for all people diagnosed with IC/PBS. There are variations in severity and presentation of IC/PBS, so the treatment that worked for one person may not work for you. It will take trial and error with a medical team to figure out how to best manage your symptoms. Many people end up needing a combination of multiple treatments.
Get your all-star medical team together
This should include a urologist or urogynecologist, a dietician, and a pelvic health physical therapist (PT) who are knowledgeable about IC/PBS. Together, these providers will make sure you have an individualized plan.
Your urologist or urogynecologist will be able to provide medical interventions like prescribe medications or bladder treatments.
About 85% of people with IC/PBS have some type of dietary sensitivity, so work with a dietician to navigate your diet.
Pelvic health PTs can address the pelvic floor muscle dysfunction and pain that is experienced with IC/PBS.
Practice self-care and stress management
Some examples that you can try include counseling with cognitive-behavioral therapy (CBT), mindfulness, yoga, or simple diaphragmatic breathing. To do diaphragmatic breathing, get in a comfortable position lying down or sitting. Take slow deep breaths in through the nose for a count of 4 seconds, and slowly breathe out through your nose for 4 seconds. This can decrease the excitability of the nervous system and help decrease your symptoms.
Track your symptoms
Try using a log to track when you urinate, have a bowel movement, what you’re eating and drinking, and your symptoms including pain. Tracking will help show a pattern to what your triggers are. Then you can modify your lifestyle to help decrease and manage your symptoms.
Find ways to manage your pain
This may include using a hot or cold pack at your abdomen and/or perineal area (between the anus and base of the penis or vagina), taking a warm sitz bath (with or without Epsom salt), doing gentle stretches or yoga, working with a pelvic health PT, or talking to your medical provider about medications or supplements.
Optimize your pelvic floor function
Pelvic health PTs will provide appropriate and safe manual therapy to address overactive and tight muscles at the pelvic floor, abdominal, and hip muscles. Avoid performing Kegel exercises, as these can make IC/PBS symptoms worse. Your pelvic health PT will work with you on relaxing the pelvic floor muscles and getting them functioning correctly. To find a pelvic health PT near you, use the PT locator tools at APTA Pelvic Health or Herman and Wallace Pelvic Rehabilitation Institute.
After trying these initial interventions, your medical provider may prescribe additional medical treatments. Always start with conservative therapy, as I described above and as recommended by the American Urological Association IC/PBS Diagnosis and Treatment Guidelines. If you’re looking for support and more information, head to the Interstitial Cystitis Association and read Nicole Cozean’s excellent evidence-based book that I recommend to all of my patients with IC/PBS, The Interstitial Cystitis Solution.
