Updated: Sep 6, 2022
If you're experiencing recurring symptoms of a urinary tract infection (UTI), like feeling you have to go all the time, or have pelvic floor pain discomfort, yet tests for a UTI are negative, you may be experiencing interstitial cystitis (IC). In this post, we'll detail the condition, its symptoms, and what can be done to prevent and treat it.
What Is Interstitial Cystitis?
According to the Mayo Clinic , interstitial cystitis (IC) is a chronic condition that causes bladder pressure, pain, and even pelvic pain, ranging from feelings of mild discomfort to severe pain.
Here's how Dr. Jocelyn Fitzgerald, urogynecologist and pelvic reconstructive surgeon at the University of Pittsburgh Medical Center, explains the condition: "Interstitial cystitis is a condition where the best way I can explain it is you feel as though you have a UTI all the time," she said. "But you don't. You have pain when the bladder is full, sort of a constant bladder awareness and pressure, frequency urgency, often burning, and it looks a little different for everyone, but it's in the absence of a positive urine culture. So when you go and get tested for UTI repeatedly, it keeps coming back negative. So it's horrible. It's a totally debilitating condition."
There are a number of things that can cause the condition, including recurring urinary tract infections that sensitize and inflame the nerves in the bladder, untreated endometriosis, pelvic floor pain spasms, sexual trauma, and even diet — particularly a diet heavy in foods and drinks that irritate the bladder and disrupt its normal function, such as caffeine and alcohol.
"Artificial sweeteners, caffeine, acid, alcohol, things we all drink every day because they make life a little better," Dr. Fitzgerald explained. "They will not make life better for your IC — spicy food also is the worst. I tell people that if they ever made themselves a diet spicy Margarita with caffeine, it would be like the absolute worst."
Other times, IC is caused by something in your urine that damages the bladder, nerve problems that cause the bladder to feel pain from things that typically don't hurt, and your immune system attacking the bladder.
Symptoms of Interstitial Cystitis
The symptoms of interstitial cystitis vary from person to person and even over time in the same person. They can worsen when they flare up as a response to common triggers, including stress, menstruation, and sexual activity.
The most common symptoms include:
Chronic pelvic floor pain, which can present as pain in the lower stomach, back, pelvis, or urethra
A persistent need to urinate
Frequent urination of up to 60 times per day
Pain when the bladder is full and relief when it is emptied
Pain during sex
Treatment for Interstitial Cystitis
If you are experiencing symptoms of interstitial cystitis, your doctor may refer you to a urogynecologist for treatment. A urogynecologist first trains as an ob-gyn and then continue their training in the subspecialty of pelvic medicine and reconstructive surgery. A urogynecologist diagnoses and treats pelvic floor conditions, including interstitial cystitis and incontinence.
The urogynecologist may recommend the following treatments for IC:
Physical therapy: Pelvic physical therapy teaches women exercises to strengthen their pelvic floor while working to relieve their pelvic pain. Even if you don't have the time or money to commit to full-time physical therapy, Dr. Fitzgerald recommends going at least once. "Pelvic floor physical therapists are very good at teaching their techniques," she said. "Once they've done an overview for that patient, they [can] recommend tools for home.”
Diet changes: If you are experiencing pelvic floor pain or incontinence, you should remove artificial sweeteners, caffeine, alcohol, and spicy foods from your diet.
Medications: Some common medications to treat IC include nonsteroidal anti-inflammatory drugs, like ibuprofen. For other symptoms and severe pain, your doctor may prescribe tricyclic antidepressants to help relax your bladder and block pain or pentosan polysulfate sodium, which is approved by the FDA to treat IC .
Behavioral therapy: Some symptoms, like going to the bathroom frequently, may be mitigated by learning techniques that can help train behavior.
Psychological support: IC can cause chronic pain, which can put some at increased risk of depression and anxiety. Therapy can help with coping mechanisms, and mental health challenges. If you have interstitial cystitis symptoms, check them out with your doctor. Don't let anyone tell you "it's all in your head." Consider consulting a urogynecologist to help determine the cause of your problem and get the treatment you need. The Interstitial Cystitis Association can also be a resource (3). While there may not be a cure, there are options to help you cope with this challenging problem.