Interstitial cystitis (IC), often called painful bladder syndrome, is a tricky condition. It’s tough to diagnose, and though treatments can make life with it better, there’s no cure.
Because IC has such a wide range of symptoms and severity, most experts think it might be several diseases. If you have urinary pain that lasts for more than 6 weeks and is not caused by other conditions like infection or kidney stones, you may have IC.
No matter what it’s called, interstitial cystitis symptoms bring a lot of challenges. The disease can affect your social life, exercise, sleep, and even your ability to work.
Despite this, you can still arm yourself with facts and treatments to keep symptoms in check.
What Is It?
IC is a chronic bladder problem. Your bladder holds pee after your kidneys have filtered it but before you pee it out. This condition causes pain and pressure below your belly button. Symptoms can come and go. Or they may be constant.
Interstitial cystitis causes urgent, often painful bathroom trips. You may have to pee as many as 40-60 times a day in severe cases. It can even keep you up at night.
What Are the Symptoms?
These vary from person to person with IC. They can change every day or week or linger for months or years. They might even go away without any treatment.
- Bladder pressure and pain that gets worse as your bladder fills up.
- Pain in your lower tummy, lower back, pelvis, or urethra (the tube that carries pee from your bladder out of your body)
- For women, pain in the vulva, vagina, or the area behind the vagina
- For men, pain in the scrotum, testicles, penis, or the area behind the scrotum
- The need to pee often (more than the normal 7-8 times daily)
- The feeling you need to pee right now, even right after you go
- For women, pain during sex
- For men, pain during orgasm or after sex
The bladder pain people feel with IC can range from a dull ache to piercing pain. Peeing may feel like just a little sting, or it can feel like serious burning.
About 5% to 10% of people with the condition get ulcers in their bladder.
Things that might make symptoms worse:
- Some foods or drinks
- Mental or physical stress
- Your period
Who Gets Interstitial Cystitis?
As many as 90% of people with IC are women. Somewhere between about 3% to 6% of adult women have some form of IC. That’s about 3 million to 8 million American women. About 1.3% of American men also have it.
On average, people first start having problems in their 40s. The risk of getting it goes up as you get older.
What Causes IC?
It’s not clear why it happens, but there are several ideas:
- A problem with bladder tissue lets things in your pee irritate your bladder.
- Inflammation causes your body to release chemicals that cause symptoms.
- Something in your urine damages your bladder.
- A nerve problem makes your bladder feel pain from things that usually don’t hurt.
- Your immune system attacks the bladder.
- Another condition that causes inflammation is also targeting the bladder.
How Is It Diagnosed?
There’s no test for interstitial cystitis. If you go to your doctor complaining about bladder pain along with frequency and the urgency to pee, the next step is to rule out what else it could be.
Both men and women would first need to rule out urinary tract infections, bladder cancer, sexually transmitted diseases, and kidney stones.
These tests can rule out other conditions:
- Urinalysis and urine culture. You’ll be asked to pee in a cup. It’ll be sent to a lab to check for infection.
- Postvoid residual urine volume. Using an ultrasound, this test measures the amount of pee that remains in your bladder after you go to the bathroom.
- Cystoscopy. A thin tube with a camera is used to see the inside of the bladder and urethra. This is usually done only if there is blood in your pee or if treatment doesn’t help.
- Bladder and urethra biopsy. A small piece of tissue is taken and tested. This is usually done during cystoscopy.
- Bladder stretching. Your bladder is filled with liquid or gas to stretch it out. You’ll be asleep under anesthesia. Sometimes this is also used as a treatment. This is done with a cystoscopy.
- Prostate fluid culture (in men). Your doctor will need to press on your prostate and milk a sample to test. This is not commonly done.
Home or Lifestyle Treatments
For about half the cases, interstitial cystitis goes away by itself. Among those who need treatment, most find relief and get their lives back to normal.
Treatment is mainly about symptom control. It takes trial and error to find the right combination of treatments. And it usually takes weeks or months to calm the symptoms.
The first stage of treatment is to try to avoid triggers and try lifestyle changes that may help ease symptoms.
- Retrain your bladder to hold more urine. For example, if you feel the need to pee every 30 minutes, try to stretch it out to 45 minutes.
- Cut down on stress. It can be a trigger. Taking 5 minutes a day to do something for yourself can be a start. Stretch, read a book. Relaxation techniques, talking to a friend, or meditation may help.
- Wear loose clothing. Tight clothes can put pressure on your bladder.
- Do low-impact exercise. For example, walk or stretch.
- Change what you eat and drink to avoid triggers. See below for examples of possible trigger foods and drinks.
- If you smoke, quit.
A lot of people find that certain foods or drinks irritate their bladders. You don’t have to cut these all out at once. Notice when your symptoms are bad and think back on if you ate or drank any of these. It may be a good idea to keep a food and symptom journal. Take note of what you have each day and how you feel. You can look back to see if there are connections. Not all of these will bother every person.
- Citrus fruits like oranges and lemons
- Caffeinated drinks like coffee and sodas
- Carbonated drinks
- Spicy foods
- Artificial sweeteners
Talk to your doctor about an elimination diet, which could help you figure out what’s affecting your bladder.
Second-Line Treatments for Interstitial Cystitis
If lifestyle changes aren’t enough, then try the next line of treatments:
- Physical therapy. Different techniques are used to help relax your pelvic muscles.
- Amitriptyline. This drug controls bladder spasms. It’s the most widely used oral medication for IC.
- Pentosan (Elmiron). It’s not clear how this drug works, but it might help rebuild the bladder tissue lining. It can take a few months to relieve symptoms.
- Hydroxyzine. This drug is an antihistamine and can be helpful if you have to pee a lot at night.
- Dimethyl sulfoxide (DMSO). For people who haven’t found relief through other drugs, this drug is placed in the bladder with a catheter. It’s believed to work by fighting inflammation and blocking pain. Doctors don’t often recommend it because it may temporarily worsen symptoms and takes multiple doctor visits.
Third-Line Treatments for Interstitial Cystitis
If second-line treatments don’t work, your doctor will likely turn to the third-line treatments. They require cytoscopy, a special scope used to look at the bladder, often in an operating room under anesthesia.
If you haven’t been seen by a urologist, a doctor who specializes in treating bladder problems, your doctor may refer you to one now.
- Bladder stretching. Slowly stretching the bladder wall with fluid may help relieve symptoms. If it’s helpful, the effect usually lasts less than 6 months. Repeat treatment may help.
- Steroids. If you have ulcers called Hunner’s lesions on your bladder, a doctor may remove them, burn them, or inject them with steroids.
Fourth-Line Treatments for Interstitial Cystitis
If lifestyle changes, medications, and the procedures mentioned above aren’t enough, and your symptoms badly affect your quality of life, an urologist may try the fourth line of treatments:
- Neurostimulation. The doctor implants a device that delivers small electrical shocks to your nerves to change how they work.
- OnabotulinumtoxinA (Botox) injections. This temporarily paralyzes the bladder muscle to help relieve some of the pain.
Final Steps in Interstitial Cystitis Treatment
When all else fails, here’s what you could try:
- Cyclosporine. This drug suppresses your immune system.
- Surgery. In very rare cases when nothing else works, this may be an option. This is a complex operation that diverts your urine away from your bladder.
Even if IC treatments don’t work for you, pain management using painkillers, acupuncture, or other methods can keep symptoms at bay.