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Painful Bladder Syndrome/Interstitial cystitis and associated disorders – an overview

Studies and patient surveys have shown that many patients with PBS/IC also have one or more other disorders or symptoms in addition to their bladder problem, for example allergies, irritable bowel syndrome, fibromyalgia or Sjögren’s syndrome.

Associated disorders more commonly occurring in PBS/ IC patients than in the general population are:

irritable bowel syndrome
inflammatory bowel disease
sensitive skin

thyroid disorders
chronic fatigue
chronic non-bacterial prostatitis
rheumatoid arthritis
systemic lupus erythematosus (SLE)
Sjögren’s syndrome

click on a name to jump to the paragraph


Since PBS/IC patients are generally treated by a urologist, some of these disorders may go undiagnosed and untreated. This underlines the need for a multi-disciplinary approach.


PBS/IC patients are frequently faced with allergy or multiple allergies, including food, chemicals and medicines. In some cases, patients receiving treatment (antihistamines) for their allergy find that this treatment also has a beneficial effect on their PBS/IC. Medicine intolerance can cause a problem with treatment for their PBS/IC. A solution is sometimes found here by treating the PBS/IC bladder intravesically rather than using oral treatment. With intravesical treatment where the drug is instilled directly into the bladder, less of the medication is absorbed by the body and there are consequently fewer side-effects.


Gastrointestinal disorders

Gastrointestinal disorders are among the most common disorders associated with PBS/IC. These may be divided into two groups: irritable bowel syndrome (IBS) and the inflammatory bowel disease group comprising Crohn’s disease and ulcerative colitis. Symptoms of IBS include cramping abdominal pain, diarrhoea and constipation and a bloated feeling due to gas formation, while weight loss, blood in the stools and diarrhoea at night are more indicative of inflammatory bowel disease.

For further information, see: IC & gastrointestinal disorders





Many PBS/IC patients have a major problem with tiredness. This tiredness can take two quite different forms. It may be the result of constantly waking throughout the night to make those frequent excursions to the bathroom. This broken pattern of sleep makes you exhausted, irritable and depressed. Many patients find that their bladder becomes particularly irritable the minute they lie down in bed. This makes it difficult to get off to sleep. The constant need to urinate throughout the day is also exhausting because you never have time to relax. Chronic pain can also make you very tired because your body is constantly in a state of stress.

Chronic fatigue caused by an autoimmune disorder is a completely different matter, however. This kind of tiredness seems to pervade your whole body and mind. Your body may feel constantly exhausted. Your brain is ‘foggy’, you can’t think clearly anymore and your coordination may feel clumsy. You may have a sense of unreality, of losing contact with the environment around you, a feeling of being on another planet. You may feel this intense fatigue from the minute you get up until the minute you go to bed, or it may come on suddenly and unpredictably like a curtain coming down. If this is the case, it is worth investigating the medical side to check for some form of autoimmune disease that may respond to treatment. If you have this kind of fatigue, it is essential to pace yourself and take frequent rests. Sometimes just a short rest lying down can be revitalising.

The term Chronic Fatigue Syndrome (sometimes also called myalgic encephalomyelitis or ME) is used when no known disease has been identified that could be causing the chronic fatigue.


Rheumatic diseases

Some PBS/IC patients have an associated autoimmune rheumatic disease. Conversely many patients with autoimmune rheumatic diseases have either a painful or overactive bladder.
There are well over a hundred different rheumatic diseases, some of which are considered to be autoimmune diseases in which the body’s own immune system is directed against the body’s own tissues, causing illness, inflammation and in some cases damage. Rheumatic diseases include rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), mixed connective tissue disease (MCTD), Sjögren’s syndrome and fibromyalgia. These rheumatic diseases have many symptoms in common, but each has its own distinguishing characteristics which form the basis of criteria for diagnosis.
Rheumatoid arthritis

Rheumatoid arthritis is a chronic systemic, autoimmune connective tissue disease that mainly affects the synovial membranes of joints and is characterised by pain, swelling and stiffness of joints, usually symmetrically. As the disease progresses, the ligaments are damaged, there is erosion of the bone, resulting in deformity of the joints. This deformity of the joints is an important difference with other rheumatic diseases such as Sjögren’s syndrome. Because the disease is systemic or generalised, it may involve other systems of the body too.


Systemic lupus erythematosus (SLE or "Lupus")

Systemic lupus erythematosus is a chronic, inflammatory, autoimmune connective tissue disease, involving many organs, with unpredictable flares and remissions. It may involve:


• joints
• skin
• kidneys
• lungs
• heart
• vascular system
• gastrointestinal tract
• central or peripheral nervous system
• bladder

A painful bladder disorder in SLE patients was known in the past as ‘lupus cystitis’, but is now generally referred to as PBS/IC.

The fact that SLE can affect so many different organs makes it difficult to diagnose and the different symptoms may easily be mistaken for other conditions. The symptoms and severity can greatly vary from patient to patient and may also undergo change in an individual patient over time. As in the case of PBS/IC, there is a high predominance of women patients.

See Books on SLE/Lupus

Sjögren’s syndrome

Sjögren’s syndrome is a chronic, autoimmune disease in which white blood cells attack the moisture-producing glands. Its hallmark symptoms are dry or irritated eyes and dry mouth. It is also a systemic disease and may affect many organs and systems of the body. Nine out of ten patients are women. Although it can affect any age group, the average age of onset is the late 40s.

Characteristic symptoms include:


• dryness of the mouth
• irritated dry eyes
• dryness of other mucous membranes (including vagina)
• often severe fatigue
• joint and muscle pain
• dry, itchy skin
• a flu-like feeling

When the disease affects other organs and systems of the body, these disorders may have specific individual names. These include:
• peripheral neuropathy
• Raynaud’s phenomenon
• non-Hodgkin’s lymphoma
• vasculitis
• interstitial nephritis (distal renal tubular acidosis)
• painful bladder syndrome / interstitial cystitis or overactive bladder
In recent years, clinical studies and surveys have led to an increased awareness that PBS/IC and Sjögren’s syndrome can occur in association with each other.

This disease is traditionally classified into two types: primary Sjögren’s syndrome where the disease occurs alone and secondary Sjögren’s syndrome when it occurs in association with another disease such as SLE, systemic sclerosis, rheumatoid arthritis and polymyositis/dermatomyositis. While some patients may experience only mild symptoms, in others their quality of life is seriously impaired by debilitating symptoms and extreme fatigue.

See articles Sjögren’s syndrome and books on Sjögren's syndrome

Fibromyalgia syndrome (FMS)

Fibromyalgia (old name fibrositis) is a chronic, condition with widespread musculoskeletal pain and tenderness. The term fibromyalgia means pain in the soft fibrous tissues of the body: muscles, ligaments and tendons. People with fibromyalgia say that their body and muscles ache all over. Typical of fibromyalgia are:


• diffuse pain
• an absence of inflammation in the tissues

Fibromyalgia may be accompanied by a range of symptoms including:

• morning stiffness
• extreme fatigue
• sleep disturbances
• irritable bowel syndrome
• facial pain or pain around the temporomandibular joint (TMJ)
• pelvic pain
• bladder disorders

Patients with FMS are also prone to tingling, numbness, dizziness and cognitive or memory disorders. FMS can vary in severity from person to person: some patients may have a mild form of discomfort, but some a very severe and disabling form of FMS with extreme fatigue and pain. Like PBS/IC, the course of this condition can be variable with exacerbations and remissions. FMS is notoriously difficult to diagnose since many of the symptoms may be confused with autoimmune diseases such as SLE or Sjögren’s syndrome.

see Canadian report and books on fibromyalgia



Candida albicans is a normal inhabitant of the mouth, gastrointestinal tract and vagina. It is a monocellular fungus (yeast) that can cause disease through overgrowth in organs with mucous membranes such as the vagina, penis and mouth. Candida infections can be acute or chronic, localised or systemic. A serious systemic form of Candida is known as deep candidiasis which can lead to multi-system organ failure.

Candida can cause chronic vulvar and vaginal irritation and burning. Typical of vaginal candida is:

• a thick white vaginal discharge
• pain during sex
• pain passing urine

In men it can cause:

• burning, itching, redness and red patches under the foreskin or tip of the penis
• pain passing urine

Candida infection can also occur in the urinary tract where it usually affects the bladder, but through entry via the urethra, it may ascend via the ureters to the kidneys. Candida infection in the upper urinary tract may cause fever and pain in the back. It may be indistinguishable from bacterial pyelonephritis.

Symptoms include:

• irritation of bladder and urethra
• suprapubic tenderness
• painful urination
• blood in urine
• frequency / urgency
• fungus ball formation

Oral candidiasis or thrush is an infection of the mouth, tongue and gums caused by overgrowth of Candida species. It forms white plaques, under which the tissue is red and sore; it causes a burning sensation in the mouth or on the tongue, a bright red tongue and cracks in the corners of the mouth. It may lead to loss of taste and pain on eating and swallowing.

Candida disease can occur for no apparent reason at all, but is common following use of antibiotics which may lead to overgrowth of the fungus. It is also commonly found in people with low (local) resistance, such as patients with diabetes mellitus, SLE, Sjögren's syndrome and in immunocompromised patients such as HIV/AIDS. Catheterisation can also be a cause of Candida overgrowth in the urinary tract. Other risk factors include genitourinary tuberculosis, chemotherapy, radiation therapy, antibiotic use and hospitalisation.


Thyroid disorders

The thyroid gland is situated at the front of the neck below the skin and muscle layers. It has the form of a butterfly with the two wings represented by the right and left lobes that wrap around the trachea. The function of the thyroid gland is to make thyroid hormone which regulates the body’s metabolism and is essential for mental and physical development. The thyroid gland is prone to two extremes of disorders:


• hyperthyroidism (the thyroid makes too much hormone) 
• hypothyroidism (the thyroid makes too little hormone).

Chronic thyroiditis is an inflammatory condition of the thyroid caused by an autoimmune disorder in which lymphocytes invade the tissues of the gland. The most common type of thyroiditis is Hashimoto’s thyroiditis. It includes swelling of the thyroid gland and partial or complete failure to secrete thyroid hormones. Women are affected more than men.

Vulvodynia means pain in the vulva. The vulva is the external genital area in women comprising the two pairs of fleshy folds – the labia majora (large lips) and labia minora (small lips) – surrounding the opening of the vagina and urethra and extending upwards towards the clitoris. The area around the vaginal opening is called the vestibule. The area between the vaginal opening and the anus is called the perineum.

The International Society for the Study of Vulvovaginal Disease (ISSVD http://www.issvd.org) defines vulvodynia as: chronic vulvar discomfort or pain, characterized by burning, stinging, irritation or rawness of the female genitalia in cases in which there is no infection or skin disease of the vulva or vagina causing these symptoms.

Burning sensations are the most common, but the type and severity of symptoms are highly individualized. Pain may be constant or intermittent, localized or diffuse.

Vulvodynia is a distressing, painful condition, difficult to diagnose and difficult to treat. It is a broad term used to describe any chronic pain condition of the vulvar area and embraces a number of different types of vulvar disorder causing chronic or intermittent pain, burning, rawness and pain with intercourse. While vulvodynia is sometimes found together with PBS/IC, it can also mimic PBS/IC with pain in the bladder and urethra. When diagnosing vulvodynia, it is important to exclude all possible identifiable causes including infection and skin problems.


There are two main types of vulvar pain:

Localised vulvodynia (vulvar vestibulitis)
Vulvar vestibulitis is pain or burning sensation caused by something touching the vestibule. Pain is caused by sexual intercourse, insertion of tampons, riding a bicycle, gynaecological examination, tight clothes, any situation where the vestibule is touched. There is usually no pain if the area is not touched. Vulvar vestibulitis is diagnosed by touching the vestibule with a Q-tip. Even light pressure such as this can cause pain.

Generalised (dysesthetic) vulvodynia
Generalised or dysesthetic vulvodynia is pain, burning, stinging or rawness on or around the vulva, labia, vestibule, clitoris or perineum most of the time, whatever they are doing. It is not dependent upon touch or pressure but this can nevertheless exacerbate the symptoms. Urination may cause pain and burning. Sexual activity is sometimes so painful as to be impossible, while at other times there may be little or no pain. Generalised vulvodynia is diagnosed when there is a history of constant pain with no visible cause or other identifiable disorder.

Vulvodynia can have a profound sometimes devastating effect on a woman since it may affect her social life, work and domestic functioning, her ability to simply sit in a chair, her sexual relationships and may cause intense depression.

Although treatment is available (local anaesthetic ointments, antidepressants, anticonvulsants) to treat these pain conditions, vulvodynia can sometimes be difficult to treat. Studies are looking into new treatments.

For further information:
The Vulvodynia Survival Guide by H. Glazer and G. Rodke, New Harbinger.
National Vulvodynia Association http://www.nva.org
International Society for the Study of Vulvovaginal Diseases: http://www.issvd.org

Sensitive skin

Many PBS/IC patients have a problem with dry, itchy, sensitive skin.

Tips for patients

Keep the skin well moisturised with cream or lotion for sensitive skin to reduce the dryness and this may also reduce some of the itchiness. Keep away from chemicals such as household cleaning products (wear protective gloves) and perfume. Use cosmetics, soap and shampoo for hypersensitive skin. Do not use (perfumed) soap or any other products around the vulvar/genital area. Take care with contraceptive devices containing chemicals such as condoms and spermicidal creams.


If possible, wash your clothes with products specially made for sensitive skin that do not contain perfume. Wear cotton underwear and loose clothes. Avoid touching garden plants that may cause skin reactions. Take care in the sun if you find that your skin is sensitive to sunshine.

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