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Interstitial cystitis

Interstitial cystitis is a poorly understood bladder condition that causes long-term pelvic pain and problems peeing.

It's also known as painful bladder syndrome or bladder pain syndrome.

The condition tends to first affect people in their 30s and 40s, and is much more common in women than men.

It can have a significant impact on your lifestyle, work, emotional health and relationships, but a number of different treatments can be tried to help relieve the symptoms.

The main symptoms of interstitial cystitis are:

The pain may be worse when your bladder is full and may be temporarily relieved when you go to the toilet.

You might also find the pain is worse during periods or after having certain foods or drinks.

The symptoms will often come and go in phases. You may have episodes lasting days, weeks or months where your symptoms improve, followed by times when they're worse.

When to see a GP

You should see a GP if you have persistent pelvic pain or you notice a change in your usual peeing pattern.

These symptoms can have a number of causes, so it's a good idea to get a proper diagnosis.

The GP can refer you to a hospital specialist like a urologist, a specialist in conditions affecting the urinary system, for further tests, such as a cystoscopy. A cystoscopy is a procedure to examine the inside of the bladder.

The exact cause of interstitial cystitis is not clear. Unlike other types of cystitis, there's no obvious infection in the bladder and antibiotics do not help.

In some people with the condition, the bladder is inflamed, ulcerated, scarred or stiff.

There are several theories about the possible cause of the condition.

These include:

It's also been suggested that interstitial cystitis may be a symptom of a more widespread problem, as it's been associated with conditions such as fibromyalgiachronic fatigue syndrome (CFS)irritable bowel syndrome (IBS) and lupus.

Lifestyle changes will usually be recommended first.

Things that may help improve your symptoms include:

You may also find it useful to contact a support group, such as the Interstitial Cystitis Association or Bladder Health UK for information and advice about living with interstitial cystitis.

Unfortunately, there's currently no cure for interstitial cystitis and it can be difficult to treat, although a number of treatments can be tried.

But no single treatment works for everyone, and there's disagreement about how effective some of them are.

You may need to try several treatments to find one that works for you.

Medicines and other therapies may be used if lifestyle changes not help, and surgery may be necessary as a last resort.

Medicines

Tablets or capsules may be used to treat people with interstitial cystitis.

These include:

Some medicines can also be passed directly into the bladder using a thin tube called a catheter.

These are known as intravesical medications or bladder instillations.

Examples of intravesical medications include lignocaine, which is a local anaesthetic that numbs the bladder, and hyaluronic acid or chondroitin sulphate, which are medicines that may help restore the bladder lining.

Supportive therapies and treatments

Some people also find the following therapies and supportive treatments helpful:

Surgery and procedures

Surgery and other procedures may be recommended if you have clear abnormal areas (lesions) in your bladder or other treatments do not work.

Procedures that may be carried out include:

In very rare cases, it may be necessary to remove the bladder completely (cystectomy).

If this is done, your surgeon will need to create an alternative way for pee to leave your body.

This will usually be through a small hole in your tummy called a stoma, but might involve making a new bladder using part of your small intestine (bladder reconstruction).