Interstitial cystitis (IC), or painful bladder syndrome (PBS), is a problem that causes pain, pressure, or discomfort in the bladder or pelvis. It can make you feel like you need to urinate (pee) often or urgently.

The exact cause of IC/PBS is unknown. Some researchers think it might be caused by changes to the lining of the bladder from infections or injuries. Others say it could be caused by allergies or the body attacking its own bladder. It might even be caused by problems with nerves or muscles in the pelvis. Since the reasons why IC/PBS happens aren’t clear, treatment focuses on helping to relieve your symptoms and improve your quality of life.

There’s no test to diagnose IC/PBS. The symptoms can be the same as other bladder problems. A doctor will look at your symptoms, do a physical exam, take your medical history, and do some tests to rule out other problems before diagnosing you with IC/PBS.

The pelvic floor helps control the bladder, bowel, spine, and sex organs.​

The symptoms of interstitial cystitis (IC)/painful bladder syndrome (PBS) include:

Bladder

• feeling like you have to pass urine all the time (this is called urgency)
• passing urine more often than normal (this is called frequency)
• pain with passing urine
• burning when passing urine
• pressure in the pelvic region

Bowel (often seen with PBS)

• constipation
• pain with bowel movements
• feeling pressure on the pelvic floor and organs

Sex

• pain in the genital area during or after sex

Spine (if you've had symptoms for a long time)

• pain in your low back, pelvis, or abdomen (belly)

If you have these symptoms, you may have IC/PBS or problems with your pelvic floor muscle.

Medicines can be used to help manage the symptoms of interstitial cystitis (IC)/painful bladder syndrome (PBS), but they don’t cure the condition.

Medicines are used to help:

• control your symptoms
• keep your bladder working well and improve how well it works
• reduce the number of flare-ups

All medicines will work better if you use them with:

• self-management strategies (finding ways manage the symptoms on your own)
• physiotherapy
• an exercise program
• eating healthy food

Medicines can either be placed directly in your bladder (instillation) or taken orally (by mouth).

Bladder instillations

During a bladder instillation, a catheter (tube) will be put into your bladder (this is called catheterization). Medicines will then pass through the tube into your bladder.

The medicines can help with:

• pain
• an overactive bladder (feeling like you suddenly have to urinate or going often)
• improving the health of the lining of your bladder

Usually, a few different medicines (called a cocktail) are used to help with your symptoms.

You and your healthcare team will watch to see how well the treatment worked. How often the treatment needs to be repeated depends on how you feel.

Bladder instillations usually need to be done in a hospital or clinic. If you can learn how to do clean catheterizations, you can use prescriptions of the medicines in prefilled syringes at home.​

(Modified from 3rd International Consultation Incontinence 2005)

There’s no correct answer to which medicine is best for you. Instillations are made just for you based on:

• your symptoms
• your bladder mucosa
• if you can get to a hospital out-patient department
• how long your symptoms need to be controlled
• if you’re able to do home instillations

Talk with your doctor about the best choice for you.

During hydrodistention, your bladder is filled with fluid and then emptied. Some people get relief for a period of time, although it’s not known how it works. To have hydrodistention, you need either general anesthetic (medicine to make you sleep so you feel no pain) or spinal anesthetic (medicine that numbs the nerves from your waist down so you won’t feel pain). This treatment isn't used as often as it used to be.

​​​​​Botulinum

The botulinum toxin is used in the cosmetic industry to treat wrinkles. It may help people with an overactive bladder and people with IC/PBS.

The toxin works in 2 ways. First, it “relaxes” the bladder for a short time. This makes your bladder able to hold more urine so you will not need to go as often. Second, it can also affect the pain signals coming from your bladder so you may be more comfortable.

The botulinum toxin is injected directly into the bladder muscle. The treatment should work for at least 3 months. There’s a small risk that the bladder won’t empty completely after treatment. You might need to catheterize yourself to empty your bladder until the toxin wears off. It isn’t known if all the effects are truly reversible. Talk to your doctor to see if this treatment is right for you.

Oral medicines​​

Medicines you take by mouth work differently than instillations.

Neuromodulation medicines work by changing some of the signals sent from your bladder to your brain. These medicines help to “turn down” the signals. They can’t completely shut down all the signals, but they can help improve your quality of life.

Some types of neuromodulation medicines include the following:

• Amitriptyline was originally made to be an antidepressant, but it’s rarely used as one today. It helps with pain in people who have IC/PBS. Other antidepressants might also help with pain, although they haven’t been studied for IC/PBS yet.
• Gabapentin and pregabalin have been used for epilepsy but help with pain.
• Duloxetine is good at reducing pain. It’s also an antidepressant.

There are many more medicines that seem to decrease pain but that were first used for other reasons.

Some other types of oral medicines that help with IC/PBS include the following:

• Pentosan polysulfate is the most studied medicine and has been shown to improve symptoms. It protects your bladder wall from irritants in your urine. It takes 3 to 6 months to work. But there have been recent reports it may lead to eye disease. This includes blurry vision, problems with night vision and loss of eyesight. You should get regular eye checkups if you take this medicine.
• Hydroxyzine is an antihistamine (a medicine used to treat allergy symptoms). It can help stop cells from releasing histamine, which can irritate the bladder.
• Anticholinergics and mirabegron can help treat overactive bladder, so you don’t need to urinate (pee) as often or as urgently.

The other medicines have much less evidence that they help. These may include the following:

• Cyclosporin A is an immunosuppressant medicine that lowers your immune system.
• Montelukst is a leukotriend receptor antagonist that helps with inflammation.
• Mirtazapine is a medicine used for depression that may also help with PBS pain.

Although antibiotics and steroids are often prescribed, they should not be used long term.

Talk with your healthcare provider about these oral medicines and if they’re right for you.

New medicines are being studied, which may give you more treatment options in the future.

​​​​​Electrical neuromodulation

This treatment involves placing electrical wires next to the nerves that go to the pelvic area near the sacrum (the bone at the bottom of your spine). The wires are attached to a battery that is placed under the skin in the buttock area (the same area you would put a wallet into a back pocket).​

The wires send a constant electric signal to the nerves. If this treatment works, it can help your bladder work better and help with pain.

This may be the last option before removing or rerouting urine from the bladder.

If the medicines and treatments don’t help, some people will have their bladder removed. The surgeon will make a new way for urine to leave your body (reroute your urine) from your kidneys to the side of your belly (abdominal wall). If you have questions, talk to your healthcare provider.

​​​​​Complementary and alternative medicines (CAMS)

It’s common to try alternative therapies to treat IC/PBS. Remember that many CAMS haven’t been studied and there’s no proof that they work.

People may believe that because something is natural, homeopathic, or doesn’t need a prescription, it’s safe. This isn’t always true. Talk to a doctor or pharmacist before you start any treatment. It might affect other medicines you take.

Below are some common CAMS that have been tried. The information was gathered from a long and detailed review. (Source: Leong, F. C. (2014). Complementary and alternative medications for chronic pelvic pain. Obstetrics and gynecology clinics of North America, 41(3), 503-510.).

Dietary changes

Up to 90% of people with IC/PBS know of a food that makes their symptoms worse. This is the first step to managing IC/PBS with diet.

Supplements

Some people get relief from taking calcium glycerophosphate before meals. Check with your doctor or pharmacist to see if it will affect other medicines you take.

Up to half of people with IC/PBS say CystoProtek improves their symptoms. It’s hard to find CystoProtek in Canada.

Quercetin is an anti-inflammatory found in red wine, green tea, and onions (foods that often make symptoms worse). It’s also found in the compound Cysta-Q (Farr Labs). There isn’t enough evidence to say that it helps, but there are many individual reports of its use. Check with your pharmacist for compounds that contain quercetin.

No studies support using marshmallow root for IC/PBS. It’s widely recommended by people on the internet.

Recent studies on men seem to show some improvement when using pollen extract. If you come across any other remedies, be aware of the lack of evidence that they work. Talk with your doctor before trying them.

Talk with your doctor about which medicines might help you. Ask about side effects and possible reasons why they may or may not be right for you.

There is new research and information being done on IC/PBS. New treatments may become available.

For more information on IC/PBS medicines, please visit the Interstitial Cystitis Network or Interstitial Cystitis Association.

​​​​​​​​​​​​​​​​​​​​​​​​​​​​​Physiotherapy is an important way to manage the symptoms of interstitial cystitis.

There are many ways that physiotherapy can help people with interstitial cystitis (IC), also known as painful bladder syndrome (PBS), so they can have a better quality of life.

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How do I know if I have problems with my pelvic floor muscles?

To find out if you have problems with your pelvic floor muscles, you’ll need to see a healthcare provider who will ask about your health and examine you. You might also need connective tissue (muscle, ligaments, and tendons) and skin sensitivity testing.

To find out if your symptoms are related to problems with your pelvic floor muscles (also called pelvic floor dysfunction), you’ll need to see a pelvic health physiotherapist. You might need a referral to see a pelvic health physiotherapist. You might also need to have some tests.

How can physiotherapy help IC/PBS?

Exercises to make your pelvic floor stronger (called Kegels) won’t likely help IC/PBS. Sometimes, they can even make symptoms worse.

A therapist will help you with treatments and teach you exercises that you can do at home.

Try this exercise:

1. Gently tighten the muscles of your anus (the hole bowel movements are passed through). Imagine pulling a bucket up from a well.
2. Relax these muscles. Concentrate on letting the bucket drop.
3. Focus on feeling the anus lifting and dropping, not squeezing or clenching. Practise this for 2 to 3 minutes about 5 times a day.

 

Your physiotherapist will teach you about:

• stretches for tight muscles in your back, hip, and pelvis
• exercises to make muscles stronger in your back, hip, and pelvis
• keeping a bladder diary
• exercise programs that are right for you
• ways to help you relax (like hatha yoga, mindful meditation, deep breathing, and Tai Chi)

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You might also find out about other treatments including:

• treatments for joint problems in your back, hip, and pelvis
• good posture habits
• ways to make your muscles stronger and help your connective tissue (such as ligaments and tendons) move better using massage, trigger point release, connective tissue release (such as skin rolling), and dry needling like acupuncture and intramuscular stimulation (IMS)
• ultrasound and laser treatments to help you learn to relax the pelvic floor muscles

How do I see a physiotherapist?

Public funding for physiotherapy treatment of IC/PBS in Alberta is limited. You can find a private physiotherapist through the Physiotherapy Alberta College + Association. You can search for a physiotherapist by name or location. You can also search for “urinary incontinence” or “pelvic pain disorders” in the Conditions field. There’s a cost for seeing a private physiotherapist.

You’ll likely get in to see a private physiotherapist faster, but IC/PBS is a complex problem and it’s best to use different types of treatments at the same time. This might mean you’ll need to see other healthcare providers in the community. Your healthcare team will work together so you get the treatment that’s best for you.

Other healthcare providers that may be able to help you include:

• dietitians
• psychologists​
• ​​your family doctor

Before you decide to see a private physiotherapist, call your insurance company to find out about your coverage.

Changing your diet is an important way to manage the symptoms of interstitial cystitis (IC), commonly called painful bladder syndrome (PBS). What you eat and drink might affect if, when, and how much your IC/PBS symptoms flare up. You may find it helpful to find out which foods are triggering your symptoms, and carefully change your diet to avoid them.​

There’s no special list of foods that affect IC/PBS symptoms because everyone is different. You’ll have to find out what foods are triggers for you.

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​​​​​How do I find out what foods trigger my IC/PBS symptoms?

Use these steps to look at and change your diet:

1. Use a food diary to track everything you eat and drink for at least 4 weeks. Also keep track of your IC/PBS symptoms, sleep patterns, and how you feel.
2. After 4 weeks, look at your food diary and don’t eat any foods that seem to trigger your IC/PBS symptoms. If you aren’t sure which foods are causing symptoms, start by getting rid of common trigger foods.
3. After 4 more weeks, start adding back 1 food at a time every 3 to 4 days. Write down how it affects your symptoms. If your symptoms flare up, that food is likely a trigger and you should stop eating it.
4. If a food makes your symptoms worse, stop eating it for at least 6 months. After that time, you can try it again to see if it still affects your symptoms.

When adding foods back into your diet, it’s often easier to start by adding back the foods you miss the most. You can also experiment with different amounts of food. Sometimes a small amount of a food will have no effect on symptoms, while a large amount will.

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What are common trigger foods for IC/PBS?

Not everyone reacts to foods the same way. You might not react to a food that causes symptoms in someone else. But research shows that there are some common trigger foods and some foods that are not likely to cause symptoms.

*Friedlander J. et al. Diet and its role in interstitial cystitis/bladder pain syndrome (IC/BPS) and comorbid conditions. BJU International. BJU Int. 2012 Jan 11.​

​​​​​What are some tips for changing my diet?

It’s important to change your diet and stay away from foods that you know affect your symptoms. Getting rid of whole food groups can cause more problems than it solves. When you’re experimenting with your diet, remember:

• Removing a food isn’t forever. Try the food again after 6 months. If the food doesn’t cause symptoms after that time, you can start eating it again.
• You don’t have to cut out more foods than you need to. If you stay away from too many things, your diet can get boring, hard to follow, and might even become unhealthy.
• You usually don’t need to cut out a whole food group. Canada’s Food Guide says a healthy diet should include lots of fruits and vegetables, whole grains, protein foods, and healthy fats.
• You should avoid eating processed foods. They have many additives and preservatives that can be IC/PBS triggers. Instead, make sure your diet is built around whole foods.

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​​​​​Where can I get more information?

For more information on how to manage your diet and IC/PBS symptoms, see Canada's Food Guide.

Interstitial cystitis (IC), or painful bladder syndrome (PBS), affects more than just your body. Understanding how it affects your thoughts, feelings, and behaviours will help you to protect and manage your mental health.

The video above will show you some of the basics about how IC/PBS can affect mental health and what you can do for your well-being.

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How can IC/PBS affect my quality of life and mental health?

The symptoms of IC/PBS can affect simple day-to-day activities. If you don't manage them properly, these symptoms can have a negative effect on your quality of life. Quality of life means your well-being. It’s a blend of your physical and mental health.

IC/PBS can affect your:

• sleep
• emotional well-being
• relationships and social life
• day-to-day activities
• energy and how much you can do
• sexual activity

What are some unhelpful responses to IC/PBS?

When dealing with IC/PBS, a good place to start is by noticing the ways you think and react to it. Some ways aren’t helpful and can lower your quality of life. Here are 3 common responses that aren’t helpful:

• Pain catastrophizing is when you think about your condition a lot and expect the worst. It can make you feel hopeless.
• Negative emotional response is when you have strong feelings of depression, anxiety, or anger about your condition and these feelings won’t go away.
• Illness-focused coping is when you rely too much on rest and avoid your daily activities to cope with IC/PBS symptoms.

What are some helpful responses to IC/PBS?

There are things you can do to feel better about yourself and how you’re dealing with IC/PBS:

• Learn everything you can about your condition.
• Do what you can to manage your IC/PBS (for example, change your diet, do your physiotherapy exercises, ask for help when you need it).
• Follow your healthcare provider’s advice and take your prescription medicines as prescribed.
• Build confidence and be proud of things you're doing well.
• Stay active and involved in your life.
• Make changes to your life if you need to.

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​​​​​How can cognitive behavioural treatment and mindfulness meditation help?

Cognitive-behavioural therapy (CBT) is a treatment that works well for improving chronic (long-term) pain. CBT teaches specific skills to change how you think, feel, and act when dealing with IC/PBS.

Research shows that CBT, and doing your best to manage IC/PBS yourself, can help with pain, anxiety, and depression, and make your quality of life better.

These are some of the key skills CBT teaches:

1. Self-monitor: Keeping a diary or journal helps you be more aware of your pain levels, urinary symptoms, triggers, and patterns. Watch for triggers that make the symptoms worse. Look for what helps your mind and body feel better.
2. Pacing: This helps you to take part in activities that are important to you while managing your pain and symptoms. Stay active and socialize with family and friends. Pace your activities by taking breaks or changing positions to avoid a flare-up.
3. Practice relaxation: Relaxation techniques, such as deep breathing or imagery (picturing something in your mind), can ease the pain and stress that can give you tense muscles and make pain worse.
4. Positive self-talk: This helps you manage negative thoughts, feelings, and behaviours that can go along with pain and other symptoms. Focus your thoughts on things you enjoy and are doing well rather than on your health condition.
5. Assertive communication: This helps you to be clear and confident when you talk with family, friends, and healthcare providers about your pain and what you need to cope with your health condition.
6. Flare-up plan: Make a plan ahead of time, so you’ll know what to do when a flare-up happens.

Mindfulness meditation is a different set of skills that can help you manage how you react to IC/PBS. Mindfulness meditation involves paying attention to your thoughts, feelings, and sensations in the present moment without judging or trying to change anything. With practice, mindfulness can help you feel calmer and react less strongly to stress. It has been shown to help people cope with many chronic health conditions, including many forms of chronic pain.

If you don’t manage your IC/PBS symptoms, you might be at risk of becoming depressed. If you need help, see your family doctor, a psychologist, or mental health counsellor and ask about CBT.

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​​​​​How can IC/PBS affect my sex life?

People with IC/PBS may be very concerned about how it can affect sex and their relationships.

People diagnosed with IC/PBS often fall into 2 unhelpful patterns when they’re trying to deal with pain during sex: they either push through sex or avoid sex.

A healthier way to approach sex with IC/PBS is by taking a pain management approach.

Pain management approach

You can learn to enjoy sex without making the pain worse or having a flare-up. You and your partner can do many things to help with IC/PBS pain when you have sex. These tips can help you have healthy intimacy with your partner while managing IC/PBS pain.

• Plan: Plan sex for a time when your pain is usually better.
• Prepare: To help relax your body and mind, and to better enjoy sex, try sensual touch or massage by having a warm shower or bath together.
• Communicate: Tell your partner what you like and what’s helpful to you to manage your symptoms and pain.
• Explore other kinds of sexual activity: If intercourse is painful, try other sensual activities that you both like (such as oral sex, pleasurable touch).
• Be intimate in other ways: Remember that intimacy can come from shared closeness, touch, talking, and other activities you enjoy.
• Try different things: By exploring different positions or activities, you and your partner will figure out what works best for you to manage the pain and symptoms.
• Change the goal: Remember that sexual intimacy is about sharing and closeness, and not about reaching a goal (that is, it's about more than intercourse).
• Care for yourself after sex: Do some light stretching or take a warm bath.

You can also:

• Talk to a doctor or pharmacist about medicine that won’t affect your sexual function.
• Ask a doctor or physiotherapist about positions that won’t cause pain.
• Find a counsellor who specializes in chronic pain and couples’ counselling, and possibly sex therapy.

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​​​​​Ongoing management of IC/PBS

Self-management is your best tool for dealing with IC/PBS. It means learning the skills you need to manage IC/PBS yourself and then using them in your day-to-day life. Self-management means:

• learning about IC/PBS and chronic pain
• taking an active role in making decisions about your treatment
• following through with treatments and doing the recommended exercises
• learning coping skills like cognitive behavioural therapy skills and mindfulness meditation