What Is Interstitial Cystitis?
Interstitial cystitis (IC) is a chronic bladder problem. Your bladder holds pee after your kidneys have filtered it before you pee it out. Interstitial cystitis causes pain and pressure below your belly button for unknown reasons. Symptoms can come and go, or they may be constant. To be diagnosed with IC, symptoms must last several weeks without any clear cause.
Interstitial cystitis causes urgent, often painful bathroom trips. You may have to pee dozens of times a day in severe cases. It can even keep you up at night. But it can also be much milder, with symptoms that go away at times.
Interstitial cystitis, often called bladder pain syndrome (BPS) or IC/BPS, can be worse during your period if you are a woman or were assigned female at birth (AFAB). Another name for it is chronic pelvic pain (CPP). You could also have pain during sex.
Because IC/BPS has such a wide range of symptoms and severity, most experts think it might be several diseases. If you have urinary pain that lasts more than six weeks and is not caused by other conditions such as infection or kidney stones, you may have IC.
Interstitial Cystitis/Bladder Pain Syndrome Symptoms
IC/BPS symptoms vary from person to person. They can change every day or week or persist for months or years. They might even go away without any treatment.
Common symptoms:
- 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)
- Pain in the vulva, vagina, or the area behind the vagina
- Pain in the scrotum, testicles, penis, or the area behind the scrotum
- Frequent urge to pee (more than the normal seven to eight times daily)
- Urgency to pee (feeling like you need to pee right now, even right after you go)
- Pain during sex, 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%-10% of people with the condition get ulcers in their bladder.
Interstitial cystitis vs. urinary tract infection (UTI)
You could mistake IC/BPS for a UTI, as it can be hard to tell the difference between the two. The difference is that a UTI is caused by an infection with a bacteria (usually E. coli), while IC/BPS causes similar pain but without a clear cause.
Interstitial Cystitis Risk Factors
As many as 90% of people with IC are women or those AFAB. About 3%-6% of adult women or those AFAB have some form of IC. That’s about 3 million to 8 million people in the U.S. alone. About 1.3% of American men or people assigned male at birth (AMAB) also have it.
On average, people first start having problems in their 40s. The risk of getting it goes up as you get older.
Interstitial cystitis and other conditions
Many people with this condition also have other health issues. Your risk for IC may be higher if you have any of the following conditions, or you may be more likely to get one or more of the following conditions if you have IC:
- Inflammatory bowel syndrome (IBS)
- Celiac disease
- Allergies
- Sensitive skin
- Migraine
- Endometriosis
- Asthma
- Vulvodynia
- Fibromyalgia
- Chronic fatigue syndrome
- Systemic lupus erythematosus
- Panic attacks
- Pelvic floor dysfunction
- Constipation
- Chronic prostatitis
- Pudendal neuralgia
- Sjögren's syndrome
Interstitial Cystitis Causes
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 affecting the bladder.
Interstitial Cystitis Diagnosis
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 other conditions.
People of both sexes would first need to rule out urinary tract infections, bladder cancer, sexually transmitted diseases, and kidney stones.
In women and people AFAB, endometriosis is another possibility. For men or those AMAB, IC can be mistaken for an inflamed prostate or chronic pelvic pain syndrome.
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 or AMAB). Your doctor will need to press on your prostate to collect a sample for testing. This is not commonly done.
Interstitial Cystitis/Bladder Pain Syndrome Treatments
For about half the cases, interstitial cystitis goes away by itself. Most of those who need treatment 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.
Interstitial cystitis and lifestyle changes
Your doctor may suggest lifestyle changes to help along with any treatment. These include:
Reduce stress. Stress can be a trigger for IC. Taking five minutes a day to do something for yourself can be a start. Stretching, reading a book, trying relaxation techniques, talking to a friend, or meditation may help.
Wear loose clothing. Tight clothes can put pressure on your bladder.
Exercise. Do low-impact exercise. For example, walk or stretch.
Adjust your diet. Change what you eat and drink to avoid triggers. See below for examples of possible trigger foods and drinks. Talk to your doctor about an elimination diet, which could help you figure out what’s affecting your bladder.
Don't smoke. If you smoke, quitting may help.
Identify triggers. Many people find certain foods or drinks irritate their bladders. Symptoms may also worsen with mental or physical stress or during your period. You don’t have to cut these all out at once. Notice when your symptoms flare up and consider what you have eaten or drunk. 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.
Some possible food triggers include:
- Citrus fruits, such as oranges and lemons
- Tomatoes
- Chocolate
- Caffeinated drinks, such as coffee and sodas
- Carbonated drinks
- Alcohol
- Spicy foods
- Artificial sweeteners
Interstitial cystitis therapies
Bladder retraining. You'll practice holding your pee longer before going to the bathroom to avoid going when your bladder isn't full. Gradually holding it longer can help retrain your bladder. Keep notes to see how often you're going and work to gradually go longer between bathroom visits.
Physical therapy. You'll use different techniques such as Kegel exercises to help strengthen, stretch, or relax your pelvic muscles. A physical therapist can help you with a routine and ensure you're doing these the right way.
Bladder instillations. Your doctor inserts a catheter into your urethra and bladder. They'll fill it with dimethyl sulfoxide to numb it and relieve your IC symptoms.
Hydrodistension or bladder stretching. Your doctor fills your bladder with water to stretch it out and allow it to hold more pee. It may also calm the nerve endings in your bladder. Slowly stretching the bladder wall with fluid may help relieve symptoms. If it’s helpful, the effect usually lasts less than six months. Repeating this treatment may help.
Neurostimulation. Your doctor implants a device that delivers small electrical shocks to your nerves in or around your bladder to change how they work.
Interstitial cystitis medications
Amitriptyline. Though it is an antidepressant, it also 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.
Heartburn medicines. Over-the-counter medicines may help by reducing the amount of acid you have.
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.
Steroids. If you have ulcers called Hunner’s lesions on your bladder, a doctor may remove them, burn them, or inject them with steroids. You may also try this if your doctor suspects you have an autoimmune condition. But you shouldn't take steroids long-term due to side effects.
OnabotulinumtoxinA (Botox) injections. This temporarily paralyzes the bladder muscle to help ease some of the pain. You may need it every four to nine months.
Interstitial cystitis and 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.
Treating other conditions
Your doctor will consider any other conditions that may be causing your interstitial cystitis pain. Treating them may help. These may include:
- Hormone imbalances
- Endometriosis
- Bowel issues
- Autoimmune conditions
Alternative Treatments and Supplements for Interstitial Cystitis Symptoms
Pain management using over-the-counter painkillers, acupuncture, or other methods may keep your symptoms at bay. Supplements also may help, but keep in mind that supplements aren't regulated the same way as drugs are. It's a good idea to check with your doctor before trying something new.
Some supplements used for IC/BPS include:
- Calcium glycerophosphate
- Glucosamine chondroitin
- Quercetin
- Aloe
It's not recommended to take:
- Vitamin C
- L-arginine
- L-citrulline
Living With Interstitial Cystitis
Other things that may help when you're living with interstitial cystitis include:
- Drinking lots of water
- Avoiding your triggers
- Using ice or heat on your belly or the space between your genitals and rectum
- Yoga poses including wide-legged squats
- Deep breathing exercises
- Meditation
- Massage
- Taking pain relievers before sex
Takeaways
Interstitial cystitis or bladder pain syndrome involves long-term pain that may be constant or intermittent. The causes for it aren't known and may be varied. There's no cure for IC/BPS, but many treatments, lifestyle changes, and alternative treatments may help.
Interstitial Cystitis FAQs
What is the main cause of interstitial cystitis?
Interstitial cystitis has no known cause. It may have multiple causes, including autoimmune problems, allergies, inflammation, or others.
What is stage I interstitial cystitis?
IC doesn't have any officially recognized stages. Usually, the symptoms will be milder or less constant early on.
Does interstitial cystitis ever go away?
For some people, IC can come and go. But you may need long-term treatment to control it. For some people, it can even go away with treatment or lifestyle changes.
Does interstitial cystitis cause bloating?
Bloating isn't a main symptom of interstitial cystitis, but it's possible to feel bloated and have IC.
Is IC an autoimmune disease?
Doctors still don't know what causes interstitial cystitis. But there's some evidence that people with this condition may have antibodies that attack their own tissues. Many people with interstitial cystitis also have other autoimmune conditions. Autoimmune activity may play a role in interstitial cystitis, but doctors don't know for sure.
