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Your guide to understanding interstitial cystitis

Interstitial cystitis also known as painful bladder syndrome affects nearly half a million people in the UK. Sadly, 90% of people affected by interstitial cystitis are women. We look at the symptoms of interstitial cystitis, the possible causes of this condition and how to get help for interstitial cystitis. 

Interstitial cystitis is a chronic condition that affects the bladder. It can cause pain and discomfort in the pelvic area. We take a look at the causes, symptoms and treatments.

Interstitial cystitis is a chronic condition that affects the bladder, causing chronic pelvic pain and discomfort. For this reason it is sometimes called painful bladder syndrome or bladder pain syndrome.

The condition occurs when the bladder walls become inflamed and irritated. The bladder holds urine after it has been produced by the kidneys and before you pass it out when you go to the bathroom.

When the bladder becomes sensitive, it can’t hold as much urine as before, so you may feel the need to urinate more times a day than usual. Interstitial cystitis can be difficult to diagnose and, at present, there is no known cure for the condition. However, lifestyle changes and treatments can alleviate some of the symptoms. Sometimes the symptoms get better without treatment.

The exact cause of interstitial cystitis is still not known. However, several factors have been suggested as the possible cause of interstitial cystitis.

The main theory is that the lining of the bladder has become damaged. This can happen due to a variety of reasons, including:

  • Trauma to the bladder, such as from surgery.
  • Autoimmune disorders.
  • Weakened pelvic floor muscles. 
  • Bacterial infections.
  • Inflammation of the pelvic nerves.
  • Stretching of the bladder due to long breaks between urinating.
  • Trauma to the spinal cord.
  • Some substance or chemical in the urine damages the bladder.

Some people with irritable bowel syndrome or fibromyalgia have also been diagnosed with interstitial cystitis, although a direct connection between the different conditions is still to be confirmed.

There is also the possibility that the condition may be genetic as cases have been found in mothers and daughters, although this is not a common occurrence.

Symptoms vary from person to person. They can range from mild to severe and even change as time goes on. You may also experience days when you don’t have any symptoms. However, symptoms may worsen if you have a urinary tract infection (UTI). 

Interstitial cystitis symptoms may also be dependent on your age. The most common symptoms are repeat discomfort, pressure or pain in the bladder, lower abdomen and pelvic area. Other common symptoms include:

  • Pain in the bladder or lower abdomen, which increases as the bladder fills up.
  • An urgent need to urinate (urinary urgency).
  • The need to urinate more often than usual, including at night.
  • Pain during sexual intercourse.
  • Sores, ulcers or bleeding in the bladder.
  • An increase in pain during your period.

This is no single test that will determine whether you have interstitial cystitis or not.

When you see your doctor, they will take a look at your medical history before giving you a physical examination.

The typical approach to interstitial cystitis diagnosis is to rule out other common conditions first, so you may be referred to a hospital for a variety of tests to eliminate other health problems. These can test for urinary tract infections (UTIs), bladder cancer, kidney stones and sexually transmitted infections (STIs). 

Once the results from these tests have eliminated those health conditions, the doctor may perform further tests that are more specific to diagnosing interstitial cystitis. These include:

Urine test (urinalysis): A test to check for certain cells in the urine, such as bacteria, germs and white blood cells.

Cystoscopy: A procedure that allows your consultant to look at the inside of your bladder by inserting a cystoscope. This is a thin, flexible tube fitted with a tiny camera. The cystoscope can identify structural changes or blockages in the bladder.

Bladder distention: This can be performed alongside a cystoscopy and involves filling you bladder with liquid to slowly stretch and expand it. It helps the doctor to see how much liquid your bladder can hold.

Bladder wall biopsy: In a biopsy, the surgeon will remove a small tissue sample. This can then be viewed under a microscope to see if cancer or other abnormal cells are present.

There is no cure for interstitial cystitis. However, there are several treatments that can improve your symptoms. There are also some lifestyle changes that you can make which may help you live with the condition. It can also be difficult to predict which treatments will produce the best results in a patient. Typically, symptoms can vary from being mild to severe. They can often disappear for days or weeks or even longer only to return at a later date.

The most common treatments for interstitial cystitis include:

Physiotherapy: The bladder is held in place by the pelvic floor. By strengthening these muscles it may be possible to control urination and manage the pain. A physiotherapist will be able to show you a range of exercises that can strengthen and relax these muscles.

Pain medication: Over-the-counter pain medication, such as paracetamol and ibuprofen, may help you to manage pain, particularly if it is mild to moderate.

Prescription medication: If bladder pain is severe, your doctor may prescribe interstitial cystitis medication to help reduce the need to urinate and thus control the pain.

Bladder instillation: This is a treatment to wash out the inside of your bladder, so it is sometimes called a bladder bath or bladder wash. A small tube, called a catheter, is inserted into the urethra. The bladder is then filled with a liquid for a few minutes before being drained. This may help reduce the need to urinate.

Bladder retraining: Women with interstitial cystitis often get into the habit of using the bathroom as soon as they feel an urgency to urinate, even if the bladder is not full. Bladder retraining aims to break this habit by using relaxation techniques to hold urine for a longer period of time.

Bladder enlargement: Also called hydrodistention, this is a procedure to enlarge the bladder. It increases the amount of urine that the bladder can hold, which reduces the need for frequent urination.

Nerve stimulation: A doctor will use mild electric pulses to stimulate the nerves in the bladder. This can help in managing pain and reduce the need for frequent urination.

Surgery: This treatment is only an option after all other treatments have failed to reduce the symptoms or you have a very severe case of interstitial cystitis. It is a surgical procedure to remove all or part of the bladder.

Besides treatments prescribed by your doctor, there are several lifestyle changes that you can make. These interstitial cystitis treatments at home may help improve symptoms. These include:

Diet: Certain foods or drinks are thought to provoke interstitial cystitis. By removing them from your meals and implementing an interstitial cystitis diet (IC diet), it may help to decrease some symptoms. These include:

  • Alcohol
  • Caffeine
  • Carbonated beverages
  • Chocolate
  • Tomatoes
  • Artificial sweeteners

Not smoking: Many women with interstitial cystitis have suggested that smoking makes their symptoms worse. Quitting smoking may help ease symptoms.

Exercise: Physical exercise, such as walking and cycling, may help ease some symptoms.

Reduce stress: Relaxation techniques may help living with the condition easier.

A consultation with an experienced gynaecologist is often the quickest and simplest way to resolve your problem.

They will be able to diagnose the cause of your pain and talk with you about the best treatment options for your specific situation.

An appointment with an experienced Consultant at your nearest BMI hospital can be helpful. They will assess and diagnose the cause of your symptoms and then discuss any suitable treatment options for your specific situation. To schedule your visit, book a specialist appointment online today.

To find out more about the 10 most common gynaecological conditions in the UK, download our series of Women's Health Matters 2021 reports.

These reports are based on the survey responses of more than 10,000+ women currently battling a gynaecological condition. We share intricate healthcare journeys, coping methods and candid, first-hand portrayals of what living with a women’s health issue is really like. We also cover:

Click here to download the report that interests you.

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