What is Interstitial Cystitis?
A chronic condition of bladder inflammation.
What causes it?
Basically we don’t know although there are a number of theories.
Who gets it?
It is 10 times more common in women than men and it is probably much more common than previously thought. It can occur at any age. It is not hereditary and although first degree relatives may have a greater risk, no gene has been identified. There may be a history of childhood bladder problems.
What are the symptoms?
Bladder or pelvic pain, discomfort or pressure – this may get worse as the bladder fills and be partly or temporarily relieved by bladder emptying. This often results in urinary frequency, day and night. Urinary leakage is not a feature, although it can co-exist. The symptoms tend to wax and wane rather than being constant in severity. Triggers for a symptom flare can include sexual intercourse, menstruation, stress and certain foods. Symptoms can be similar to a urine infection but on testing there is no infection. (Patients can still get a true urine infection.)
How is it diagnosed?
There is no single test to diagnose it and it is a process of excluding other illnesses. Diagnosis can be difficult and can take many years.
Are there any associated conditions?
Previously some patients were diagnosed as conditions such as urethral syndrome, chronic prostatitis (in men) and pelvic pain syndromes. Some patients also have conditions such as endometriosis, irritable bowel syndrome, fibromyalgia, joint pains, migraines and allergies. Interstitial cystitis is one of the causes of ‘Painful Bladder Syndrome’ - PBS
What is the course of the disease?
- although it is debilitating it does not cause a serious threat to your life or health
- it is not a cancer and does not become or increase your risk of bladder cancer
- symptoms tend to wax and wane; 50% of patients get spontaneous remissions, lasting on average 8 months
- 10% of patients get long lasting remissions
- it is not usually progressive over time
- late deterioration in your symptoms is unusual.
What test might I need?
- A urine test to exclude infection or cancer cells.
- An Ultrasound of the kidneys, pelvic organs and bladder.
- A Cystoscopy examination of the bladder is often required to rule out other bladder conditions such as stones or tumours. A telescope passed up the urethra, (the tube from the bladder). Biopsies of the bladder may also be taken if required.
- Cystoscopy and Hydrodistension: A cystoscopy is performed under a general anaesthetic and the bladder is stretched by filling it with water. This can not only help in the diagnosis of interstitial cystitis but it can have a therapeutic effect in most patients.
- Urodynamics – a test of bladder function, may be needed to exclude other conditions.
What are the treatments?
- There are many treatments available for this condition, more than a dozen.
- Most work in only about 30-60% of patients.
- None of the treatments work in everyone, every time.
- Your doctor will systematically keep trying different treatments until she finds the one that works for you.
- 90% of patients will get some relief from one of the many treatments.
- Treatments include self help, medications taken orally or instilled into the bladder or minor procedures such as a cystoscopy and hydrodistension, (bladder stretch).
- About 10% of patients have ‘Hunner’s Ulcers’, found on the bladder lining at cystoscopy and these patients usually respond well to these being cut or burnt away.
- A number of items in the diet have been identified to trigger symptoms in some patients. These can be found at https://www.ichelp.org/diagnosis-treatment/treatments/ic-diet-self-management/
- There are a number of associations for people living with IC who provide support and information for each other that I can put you in contact with. More information can be found at https://ichelp.org and https://www.ic-network.com
- As stress can exacerbate symptoms, stress reduction benefits many patients, e.g. meditation, relaxation, hypnosis and massage.
- Bladder retraining: This involves trying to put off voiding for 2-3 hours until there is a reasonable volume in the bladder (about 300ml), because it is not good for the bladder to frequently empty small volumes. Medication can sometimes help with this.
- Pelvic floor exercises help muscle relaxation or strengthening.
- Continence nurses and physiotherapists can assist with a bladder training programme and pelvic floor exercises.
- TENS machine, (physiotherapists), acupuncture and biofeedback benefit some.
- Some patients with disabling pain can be helped by specialist pain doctors and Chronic Pain Units. Hot or cold packs placed between the legs, warm baths, and wearing loose clothing, cotton underwear and avoiding tight belts may help.
- Less than 10% of patients as a last resort need major surgery. Even this will only benefit about half of them and there are significant risks involved.
‘The Interstitial Cystitis Survival Guide’ by Robert M. Moldwin
ISBN 1-57224-210-8. Available over the internet or through Borders Bookshops.
Version: V4, August 2017