Interstitial Cystitis/Painful Bladder Syndrome

What is interstitial cystitis?

Interstitial cystitis (IC) is now also commonly referred to as a collection of symptoms known as painful bladder syndrome (PBS).

Interstitial cystitis/painful bladder syndrome is a chronic condition that is characterised by varying degrees of bladder pain and discomfort.

This pain can typically get worse as the bladder fills and may decrease after urination. You may also experience increased frequency and urgency of urination.

The condition is associated with a significant detrimental effect on quality of life. Unfortunately to date there is no known cure although there are treatments that can enable you to manage your bladder pain and urinary symptoms.

What are the symptoms of interstitial cystitis?

General symptoms

The intensity and specific symptoms of IC/PBS can vary making it an unpredictable condition. Some people may experience mild symptoms whilst others have severe, disabling pain and urinary issues. You may experience the following:

Pain and pressure -persistent pelvic pain, pressure or discomfort are common.

Urinary frequency and urgency – frequent urge to urinate both day and night.

Pain related to bladder filling – pain or discomfort experienced as the bladder fills and may (but not always) subside after urinating.

Symptoms of IC/PBS can fluctuate, with periods of flare ups followed by diminished symptoms.

Trigger factors seem to include factors like stress, certain foods and drinks, the menstrual cycle and sexual activity.

Sex-specific symptoms

In females – pain may be felt in the pelvic region, vulva and/or vagina. For this reason, many will find that sexual intercourse will make the pain worse.

In males – pain may be experienced in the scrotum, penis, testicles and rectum. Pain may also be felt after ejaculation.

How is interstitial cystitis diagnosed?

IC/PBS is usually diagnosed by excluding other urinary conditions first as there is no conclusive test at present.

Male patients will usually be checked for prostatitis as an alternative diagnosis.

A full medical history is taken to evaluate your symptom history and other medical conditions.

It is important to disclose any non-medical ketamine use to your healthcare provider, as bladder pain or cystitis-type symptoms can be a direct result of any ketamine use.

Urine is usually sent away to check for infection although whilst IC/PBS is not thought to be caused by an active bacterial infection, there could still be one present.

A cystoscopy (telescopic bladder examination) might be performed to examine the bladder lining for signs of inflammation or ulceration. A cystoscopy can be helpful in picking up other potential causes for your bladder pain such as bladder stones.

Referral to a urologist is often necessary depending on presentation of your symptoms.

Possible causes 

The exact cause is not known, but theories include a defect in the bladder lining, an abnormal immune response, or nerve sensitivity.

Some experts think that an undetected longstanding infection that has been undetectable by standard testing might also contribute to IC/PBS.

Some patients may exhibit signs of inflammation in the bladder, especially those with Hunner’s ulcers’, but visible inflammation is not always present.

Hunner’s ulcers are lesions found in the bladder walls of some IC/PBS patients and are found during a telescopic examination of the bladder (cystoscopy). Having these ulcers present may influence treatment decisions.

Glomerulations are areas of pinpoint bleeding that can sometimes be observed during a cystoscopy in some people with IC/PBS. These bleeding points are considered to be a characteristic finding in the diagnosis of IC/PBS although they are not present in all cases.

How is interstitial cystitis treated?

Overview of treating IC

It is important to note that the effectiveness of the treatments listed here may vary between individuals. Much is still unknown about how treatments work in the context of IC/PBS.

The overarching approach for treatment is to help you manage your symptoms more effectively, improving quality of life and minimising discomfort.

This will also include helping you to be aware of potential triggers so that you can manage your condition better.

Making changes to your diet can be helpful and might include avoiding bladder irritants like caffeine, alcohol and acidic foods. Stress management techniques, and fluid management can help to reduce symptom severity and frequency. Cigarette smoking can make symptoms worse, so speak to your GP about help with stopping.

Pelvic floor physiotherapy therapy – Many patients with IC/PBS experience pelvic floor muscle dysfunction, including tightness, weakness or spasms in the pelvic floor muscles. Pelvic floor exercises involve targeted exercises and techniques to improve the strength, flexibility and coordination of the muscles of the pelvic floor. Targeted physiotherapy can also include hands-on massage and sometimes acupuncture.

Bladder training can also be beneficial in improving bladder function and reduce symptoms of urinary urgency and frequency. This is where a series of exercises can help you control the urge to urinate, helping with urinary frequency as the pelvic muscles strengthen.

Medications and treatment interventions

Although there is no known cure, there are treatments that may help manage the pain and urinary symptoms that you may be experiencing.

These include:

[*Some medications mentioned here are only available off license via specialist urology centres].

• Pain relieving medication– over the counter medications such as non- steroidal anti – inflammatory drugs (NSAIDs) like Ibuprofen.
• Antihistamines – some patients may benefit from antihistamines which can relieve discomfort associated with inflammation of the bladder.
• Glycosaminoglycan analogues – These contain a substance similar to a natural component found in the lining of the bladder and theoretically can help protect the bladder lining.
• Bladder instillations – are delivered via a urinary catheter that is immediately removed after the treatment. Usually, patients are trained to self-administer. Some contain the active ingredient sodium hyaluronate which occurs naturally in the bladder lining and can help to reduce inflammation and alleviate pain. Other instillations can include local anaesthetics and heparin solutions which are believed to help reduce pain and inflammation. Sometimes these different elements are used together in a ‘cocktail’ solution.
• Nerve stimulation therapies – whilst sacral nerve stimulation (SNS) and tibial nerve stimulation (TNS) are more commonly used to treat overactive bladder (OAB) they can also be considered for the management of IC/PBS. There is growing interest in this area and the clinical evidence supporting the efficacy of these treatments in this context is still evolving. The mechanism of these therapies, which involve ‘neuromodulation’ of bladder function, can potentially benefit patients with IC/PBS by reducing urinary urgency, frequency, and pelvic pain/discomfort. The response to nerve stimulation therapy is very individual.

Surgical options include

• Bladder overdistention – historically used as a treatment to alleviate symptoms and to try and desensitise the bladder. It is not as common as other options but may still be suggested by your urologist.
• Hunner’s Ulcers Resection – for patients who have Hunner’s ulcers present in the bladder lining, surgical removal via telescope or laser may be considered. Not all patients have identifiable ulcers, and the procedure may not be suitable for everyone.
• Bladder removal (cystectomy)  – this is the surgical removal of the bladder and is only considered when all other interventions have failed to provide relief. The decision for bladder removal is usually reached after extensive discussions between the patient and the urologist whilst considering many factors, including the impact on quality of life from symptoms. During cystectomy the bladder is completely removed, and an alternative form of urine collection has to be fashioned using a piece of your bowel and attaching the kidneys tubes (ureters) to the segment of bowel instead of your bladder which will no longer be used. This is called a urinary diversion and can be done in a few different ways as follows:
  • Urinary stoma – the ureters from the kidneys are rerouted via a section of bowel brought out onto the outside of the abdomen. This is a urinary stoma or opening and an external appliance will be worn to collect the urine which is produced continuously.
  • Reconstructed Bladder/ Neo Bladder – a larger piece of bowel is used to create a reservoir to hold the urine. The new bladder needs time to stretch up and hold increasing amounts of urine and patients have to learn to expel the urine with abdominal pressure. Sometimes an ‘in out’  ‘intermittent catheter’ has to be used to fully empty the new bladder made from bowel. This option is not suitable for patients who have a sensitive urethra where the use of a catheter may be uncomfortable.
  • Reconstructed Bladder/New (Neo) Bladder with a catherisable channel – again, a large piece of bowel reconfigured to make a reservoir to hold the urine. This neo bladder must be emptied at regular intervals during the day (and often through the night) using a catheter as you will be no longer able to pass urine through the urethra.

Living with interstitial cystitis

How can I help minimise my symptoms?

Over time, and with assistance from your GP/urology team, you will learn about your own triggers for example certain foods or activities, which appear to make your symptoms worse. Keeping a food diary can be beneficial in identifying the culprits. Adopting healthy lifestyle changes and stress management techniques have been proven to be useful to some people who have PBS.

Being aware of the current management and treatments can help you have a conversation with your GP and enable you to ask for a referral to a Urology Department for access to more specialist therapies.

Following Surgery

If you are considering surgery or go on to have surgery to remove your bladder, you will be supported by a specialist team at the hospital and will have access to a ‘stoma nurse’ who will help prepare you and help you adjust to your new urinary function.

There is also further information available at the Urostomy Association on their website: https://urostomyassociation.org.uk/

Need more information?

Speak to your GP if you’re worried about any symptoms or the treatment of interstitial cystitis.