Interstitial cystitis (IC) is also known as painful bladder syndrome. It’s a chronic condition that causes pelvic pain, as well as bladder pressure and pain. In the United States, 3 to 8 million women have IC, and about 1 to 4 million men.
This condition is often mistaken for other conditions, such as a urinary tract infection (UTI) or chronic pelvic pain syndrome. So by increasing awareness for interstitial cystitis, more Americans may be able to get an accurate diagnosis — and find some much-needed relief.
What Are the Symptoms?
In addition to bladder pressure, bladder pain and pelvic pain, many patients who have IC also experience urinary frequency/urgency, muscle joint pain, migraines, allergic reactions and gastrointestinal dysfunction, according to Heather Shanahan, a board certified pelvic health physical therapist at AdventHealth Pelvic Health, a specialty of AdventHealth Sports Med and Rehab.
The symptoms of IC differ from person to person and can even change in the same person over time. Along with the pelvic and bladder pain may, patients may have discomfort with sexual intercourse, and men with IC could also have testicular or perineal pain.
Heather Hart, a physical therapy patient with Shanahan, was first diagnosed with IC in 2014. “I had symptoms for at least 10 years prior to my diagnosis at age 43,” says Hart, “I was having burning, increased frequency, pain, often feeling like a UTI — but it wasn’t a UTI. I had pain with intercourse, certain food and while using cleaning chemicals.”
How Interstitial Cystitis is Diagnosed
“Before IC can be diagnosed, basically everything else has to be ruled out to rule in interstitial cystitis,” says Shanahan. “Most patients have difficulty obtaining a diagnosis, even after seeing many physicians, getting urine cultures, etc.”
Hart shared that she had a high-risk hysterectomy, urodynamics, blood tests, urine tests and finally a cystoscopy with a bladder biopsy as well as a pelvic physical therapy evaluation before she was diagnosed with IC.
Celeste Evans, also a physical therapy patient of Shanahan’s, said she had gone to 20 different doctors who misdiagnosed her condition. “I had a cystoscopy done with another hospital group and was told my bladder looked good and I didn’t have IC,” Evans explains. “They told me to find a local urogynecologist near me, so I did that, and my new doctor diagnosed me with IC. She started treating me and referred me to a primary care physician who finally got me something for pain, but by this point I had already been bedridden for several months.”
Shanahan shares that while an accurate diagnosis can be difficult, the following tests and screenings may be helpful:
Your doctor inserts a thin tube with a tiny camera through the urethra, showing the lining of your bladder. Your doctor may also inject liquid into your bladder to measure your bladder capacity. They may perform this procedure, known as hydrodistension, after you've been numbed with an anesthetic to make you more comfortable.
During cystoscopy under anesthesia, your doctor may remove a sample of tissue from the bladder and urethra for examination under a microscope. This is to check for bladder cancer and other rare causes of bladder pain.
Medical History and Bladder Diary
Your doctor will ask you to describe your symptoms and may ask you to keep a bladder diary, recording the volume of fluids you drink and the volume of urine you pass.
During a pelvic exam, your doctor examines involved external and internal organs in the pelvis.
Potassium Sensitivity Test
Your doctor places two solutions — water and potassium chloride — into your bladder, one at a time. You're asked to rate on a scale of 0 to 5 the pain and urgency you feel after each solution is instilled. If you feel noticeably more pain or urgency with the potassium solution than with the water, your doctor may diagnose interstitial cystitis. People with healthy bladders can't tell the difference between the two solutions
Your doctor collects a urine sample and examines the cells to help rule out cancer.
A sample of your urine is analyzed for signs of a urinary tract infection.
Interstitial Cystitis Risk Factors
There isn’t currently an exact known cause of IC, but there are certain risk factors that can increase someone’s chances of developing it, including:
Most people with interstitial cystitis are diagnosed in their thirties or older.
Women are diagnosed with IC more often than men.
Previous Medical History
If you’ve had a chronic pain disorder, you may be at higher risk. IC may be associated with other chronic pain disorders, such as irritable bowel syndrome, fibromyalgia and vulvar vestibulitis. According to a recent study, the incidence of IC was higher in those with depression than in the general population.
Skin and Hair Color
Having fair skin and red hair has been associated with a greater risk of IC.
“There is no simple treatment that eliminates the signs and symptoms of interstitial cystitis, and no one treatment works for everyone,” explains Shanahan. “Many patients need to try various treatments or combinations of treatments before they find an approach that relieves their symptoms.”
Some of these treatment options may include:
Diet and Lifestyle Changes
Eliminating certain foods can decrease the severity of symptoms. Smoking and consuming highly acidic foods/beverages can aggravate IC. Sometimes homeopathy and nutritional/herbal therapies can be helpful.
There are different types of oral medications that can help IC patients with pain management. Working with your primary care physician, you can find the right option that works best for you.
Working with a pelvic physical therapist at AdventHealth such as Shanahan may relieve pelvic pain associated with muscle tenderness, restrictive connective tissue or muscle abnormalities in your pelvic floor.
“We educate patients on how to manage symptoms and can provide traditional and non-traditional treatments to help them start to feel better,” says Shanahan.
IC may not be curable but it can be managed with diet modification, exercise, reducing stress, pain relief strategies, addressing sexual activity, wearing comfortable/non-restrictive clothing and low-heeled shoes.
“I still have bad days, but they are much less since starting physical therapy,” says Evans. “Heather Shanahan and her pelvic team at AdventHealth Sports Med and Rehab have helped me immensely. It’s been a long road and I am finally feeling well enough to go back to work. Without them, my urogynecologist and primary care physician all helping and working together, I would still be bedridden.”
Learn More About Pelvic Health Physical Therapy
Talk to your primary care provider if you are experiencing any possible symptoms of interstitial cystitis. The pelvic team at AdventHealth Sports Med and Rehab can work with you to get started in physical therapy and provide education about how to improve your pelvic health.