Interstitial Cystitis

Interstitial cystitis, also known as bladder pain syndrome, is a chronic condition that can cause bladder pain, pelvic pain, and difficulty peeing. While the condition itself is poorly understood, it is a common condition in women. Because it is not fully understood, it can be difficult to get a diagnosis or the correct treatment.

Is Interstitial Cystitis the same as a UTI?

No, interstitial cystitis is not a UTI or a bladder infection. While they share similar symptoms and they affect the same area of the body, interstitial cystitis is not caused by a bacterial infection. This means that while they are similar, they cannot be treated in the same way.

How common is Interstitial Cystitis?

While interstitial cystitis can affect people from any age group, it is much more common in women than men. Women aged 30 and over are the most likely to develop the condition. It is estimated that over 400,000 people in the UK have interstitial cystitis, with 90% being women.

What is the difference between cystitis and interstitial cystitis?

The main difference between cystitis and interstitial cystitis is that while cystitis is caused by bacteria, interstitial cystitis is not. You can also treat cystitis with antibiotics, but you can not treat interstitial cystitis in the same way.

Can men get interstitial cystitis?

Yes. While interstitial cystitis is far more common in women, some men can get the condition too.

The main symptoms of interstitial cystitis include:

• intense pelvic pain (felt over the lower tummy)
• needing to urinate more often than normal
• sudden strong urges to urinate
• pain in the lower tummy when your bladder is filling up, which is relieved after you urinate
• waking up frequently during the night to urinate

Other symptoms that have been linked with interstitial cystitis, but are less common include:

• difficulty urinating
• blood in your urine (haematuria)
• urinary incontinence.

It is important to note that other conditions share these symptoms too, so you should see your doctor to rule out other possible causes.

What are the early signs of interstitial cystitis?

The early symptoms of interstitial cystitis are often mild, making it harder to diagnose. These include:

• urinating more often than usual,
• having strong urges to urinate
• getting intense pelvic pain

What does interstitial cystitis feel like?

Interstitial cystitis can range from feeling like a dull ache to a piercing pain. Urinating may sting a little or cause an extreme burning sensation. People with interstitial cystitis often have pressure, discomfort, pain, or tenderness in the bladder, pelvic area, and lower abdomen.

Is interstitial cystitis painful?

Yes, pain is a common symptom for people with interstitial cystitis. However, the severity of the pain will vary between people. Pain caused by interstitial cystitis can range from mild discomfort such as a dull ache to severe pain and pressure. Pain is usually felt in the lower stomach, where the bladder is.

If you are finding it difficult to manage your symptoms, do not delay in speaking to your doctor for advice and treatment.

How long does interstitial cystitis last?

Interstitial cystitis can be a lifelong chronic condition. While there are no cures for the condition, some treatments can offer relief. The main purpose of treatment is to relieve pain and reduce inflammation.

Interstitial cystitis complications

Interstitial cystitis can cause a range of complications, such as:

• reduced bladder capacity because of stiffening of the bladder wall
• barriers to sexual intimacy and relationships
• lower quality of life due to frequent pain and urination
• difficulty sleeping
• issues with social embarrassment and self-esteem

Long-lasting effects of interstitial cystitis

While the symptoms of interstitial cystitis are not pleasant, you will find they often come and go over time. This means there may be times when your symptoms improve over days, weeks, or months, followed by flare-ups when they are worse.

Interstitial cystitis life expectancy

Interstitial cystitis is not life-threatening and does not have an impact on life expectancy.

However, symptoms of interstitial cystitis can affect your quality of life and have an impact on your work, relationships, and mental health.

Interstitial cystitis and endometriosis

The symptoms of interstitial cystitis and endometriosis often overlap. People can also have both conditions at the same time.

Both of the conditions cause similar symptoms, such as:

• pelvic pain
• pain in the hips, lower back, groin, and tailbone
• urgent need to urinate
• pain during intercourse

When should I talk to a doctor about my interstitial cystitis?

If you have interstitial cystitis and notice your condition is worsening or your treatments are not effective, you should talk to your doctor.

If you do not have a diagnosis of interstitial cystitis and notice a change in your pattern of urinating or have pelvic pain that does not go away, you should see your doctor.

While the exact cause of interstitial cystitis isn’t known, there are several things that are thought to cause it.

These include:

• damage to the bladder lining (irritating the bladder and surrounding nerves when urinating)
• a problem with the pelvic floor muscles used to control urinating
• your immune system setting off an inflammatory reaction

What increases your risk of interstitial cystitis?

At present, there are no lifestyle behaviours that are known to increase your risk of interstitial cystitis. However, having a family member with the condition may increase your risk of getting it. If you get an injury to the bladder like an infection, you may also be at a higher risk of getting interstitial cystitis in the future.

There is no single test that can diagnose interstitial cystitis. Instead, you may need to have various tests to rule out other causes of your symptoms before you get an official diagnosis.

What tests would a doctor perform?

Some of the tests you may be offered by a doctor to diagnose interstitial cystitis include:

• cystoscopy – a procedure that looks inside the bladder with a thin camera (cystoscope)
• urine tests
• MRI scan, ultrasound, or CT scan of the urinary tract and kidneys in some cases
• vaginal swabs
• urodynamics – a variety of tests to monitor the function of your urethra and bladder

If you are offered any of the tests above, you should ask your doctor to explain what each test is and what they are used for.

How do I know if I have interstitial cystitis?

Because interstitial cystitis is difficult to diagnose, it can be hard to know whether you have the condition or not. The only way to know for sure is to go to see your doctor. They will be able to diagnose you after carrying out testing.

Interstitial cystitis is usually treated with medication.

This can include:

• over-the-counter painkillers, like ibuprofen and paracetamol
• medicines for nerve pain, like gabapentin, amitriptyline, and pregabalin
• mirabegron, solifenacin, or tolterodine (these can lower the urgency of needing to urinate)
• pentosan polysulfate sodium (this may reduce pain)

Some medicines can also be directly passed into the bladder with the help of a catheter. These are known as bladder instillations or intravesical medicines.

There are supportive treatments and therapies which some people with interstitial cystitis find useful.

These include:

• acupuncture (can help with pain relief)
• physiotherapy
• talking therapies (to help you manage your symptoms)
• transcutaneous electrical nerve stimulation (TENS) (used to relieve pain by sending electrical impulses into the body from a small battery-operated device)

If you find the treatments above do not work, there are certain procedures that can be carried out to treat interstitial cystitis.

These include:

• bladder distension – where the bladder is stretched with fluid that can aid diagnosis and relieve symptoms temporarily
• cauterisation – ulcers inside the bladder are sealed by using a laser or electrical current

Can interstitial cystitis be treated?

There are many treatments that can help with the symptoms of interstitial cystitis to improve your quality of life, but there is no direct treatment. This is because different people need different treatments for the condition, and you may need to try different treatments until you find one that works for you.

Can interstitial cystitis be cured?

No. Interstitial cystitis cannot be cured. Instead, treatment is used to manage symptoms.

How to get rid of interstitial cystitis permanently

You cannot get rid of interstitial cystitis permanently. However, there are treatments and therapies which may offer relief to symptoms.

How effective are these interstitial cystitis treatments?

As there is no single treatment for interstitial cystitis, how well treatments work will vary from person to person. While one treatment may help with certain symptoms, you may need another for others. With your doctor, you can work out an effective treatment plan that works for you.

How long do these treatments take to work?

How long treatments take to work will depend on what symptoms they’re treating and how effectively they work for you.

How to treat interstitial cystitis naturally

There are lifestyle changes you can make which can help in improving interstitial cystitis symptoms.

These include:

• reducing stress (stress can trigger a flare-up)
• exercising regularly (physical activity can release endorphins which are a natural painkiller)
• having a warm bath (can relax pelvic muscles and reduce pain)
• stopping smoking (the chemicals found in cigarettes can irritate your bladder)