This chronic bladder condition often goes undiagnosed or misdiagnosed. By Kirsten Braun
Painful bladder syndrome (PBS) is a severe and chronic pain syndrome affecting the bladder. It is also known as bladder pain syndrome or interstitial cystitis (IC). As PBS can be difficult to diagnose it is not known how many people are affected by the condition, but nine out of ten sufferers are women.
The main symptom of PBS is the pain itself. Women experience pain in the bladder but also in the urethra, vulva, vagina, rectum, abdomen and back. Some women describe the symptoms as a pressure rather than actual pain.
Women with PBS generally experience the pain or pressure as the bladder fills and find relief (temporarily) when they urinate. Women, therefore, find themselves going to the toilet very frequently in an effort to relieve or prevent the pain or discomfort. Women can also develop an urgent need to urinate, where they feel they cannot ‘hold on’. Symptoms can be exacerbated by stress, sexual activity, or in the premenstrual period.
The symptoms of PBS can be extremely disruptive to a woman’s life. Having to go to the toilet so frequently and experiencing chronic pain impacts on a woman’s work, personal and social life. It is common for women with PBS to also suffer from mental health issues like depression and anxiety.
What causes it?
The exact cause of PBS is unknown, with a number of theories being investigated. It is thought it could be due to a problem with the inner lining of the bladder, the glycosaminoglycans (GAG) layer, which allows urine to irritate the bladder. Similarly, it could be a substance in the urine itself which causes irritation and inflammation to the bladder. Other theories suggest that the immune system may play a role in PBS.
How is it diagnosed?
Women with PBS often find it takes a long time before a correct diagnosis is made. Initially women are often diagnosed as having bacterial cystitis (an inflammation of the bladder, usually caused by bacteria E.coli). However, women with PBS do not have bacteria in their urine and, therefore, antibiotics do not provide relief from their symptoms. As there is no single diagnostic test for PBS, a diagnosis is often only achieved after other conditions (e.g., cystitis, gynaecological cancer, thrush, genital prolapse, sexually transmitted infections, and bladder retention) are excluded.
A diagnosis should include a thorough medical history, pelvic examination and urine studies. A cystoscopy may also be performed. It involves inserting a long, thin viewing device (cytoscope) through the urethra into the bladder. A cystoscopy is carried out for two main reasons; to rule out other conditions such as bladder cancer but also to look for further symptoms of PBS. A cystoscopy, for example, can reveal Hunner’s ulcers which are a characteristic symptom of PBS. A cystoscopy with distention (where the bladder is filled with fluid or gas to capacity) is also sometimes performed.
What treatments are available?
There is no definitive cure for PBS and not all treatments have the same results for all women. Treatment options are designed to help women manage their specific symptoms. The first step is to educate women about the condition, its chronic nature and the fact that they may need to try different treatments before there is an improvement in symptoms. In addition, there are many treatments being trialled for PBS and so the area is constantly evolving.
Conservative treatment options are explored initially, with dietary changes, management of fluid intake, bladder training, physical therapies and exercise being the most common. Treatment for PBS may involve combining a number of treatment options.
While diet is not a cause of PBS, certain foods and drinks are known to irritate the bladder and, therefore, can aggravate symptoms. Foods or drinks to avoid include coffee, tea, citrus fruits, chocolate, carbonated drinks, tomatoes, spicy foods, alcohol, and products containing artificial sweeteners. Women may find it helpful to keep a diary, recording what they eat and drink along with symptoms, to determine if there are particular foods or drinks they should avoid.
Drinking the right amount of fluid (8 glasses a day) is an important aspect of managing the symptoms of PBS. Women with PBS can tend to restrict their fluid intake as a way of limiting the number of times they go to the toilet. However, this can result in a reduced bladder capacity, more concentrated urine and constipation, all of which can make symptoms worse.
For those who are going to the toilet frequently, bladder training may be helpful. It involves urinating to a schedule and gradually increasing the length of time between toilet visits. Different techniques are used to resist the urge to urinate before the scheduled time. A bladder diary can assist people to keep a track of their progress.
Physical therapy to relax pelvic floor muscles has found to be beneficial, particularly for women who appear to have tenderness in the pelvic floor area. Interestingly, pelvic floor strengthening exercises (Kegel exercises) should be avoided as they can exacerbate symptoms. Applying hot or cold packs over the bladder or perineum (area between the rectum and vagina) can bring pain relief for some women.
As stress can exacerbate symptoms, stress management strategies can be helpful in reducing symptoms. Regular, low-impact exercise (walking, yoga, swimming), meditation, and the management of stressful triggers at home and at work can all be beneficial.
If these conservative treatments do not improve a woman’s symptoms adequately, there are a number of medications that can be used. One of the most common prescribed is pentosan polysulfate sodium, a drug specifically approved for the treatment of PBS. It works by restoring the GAG layer of the bladder (see causes section). It can take 4-6 months to improve symptoms and, as it is not listed on the Pharmaceutical Benefits Scheme, can be expensive. An antidepressant, amitriptyline, is also used in the treatment of PBS. It works in a number of ways including providing pain relief and reduces the urge to urinate. However, it also has a sedative effect and so some people find it makes them too tired. The antihistamine medication cimetidine is also used to treat PBS.
Other treatment options for PBS are bladder instillation and bladder distention. Bladder instillation involves inserting a narrow tube (catheter) up the urethra and into the bladder. A solution is then passed into the bladder and retained for a specific length of time before being expelled. The solution dimethyl sulfoxide (DMSO) is most commonly used, either alone or with other solutions. It is thought that the solutions provide relief from symptoms by coating the bladder with a protective layer. Bladder instillations are initially given as a course of 6-8 weekly treatments.
Bladder distention involves filling the bladder with gas or fluid (see diagnosis section). It was found that after having this procedure performed as part of their diagnosis women often experienced a relief from their symptoms. Bladder distention now forms part of the treatment for PBS. Women can initially experience a worsening of symptoms immediately following the procedure but may then find an improvement in symptoms for weeks to even months.
If women are found to have Hunner’s ulcers on diagnosis, these can be surgically removed with laser or electrocautery or the injection of a steroid medication. The removal of Hunner’s ulcers can bring women relief from symptoms but they often require further treatment at a later date.
The use of botulinum toxin (Botox) injections into the bladder is a promising treatment for PBS but larger, randomised, placebo-controlled trials are required. Botox injections need to be repeated as their effect wears off over time. Sacral nerve stimulation, a variation of TENS, involving the surgical implantation of a permanent electrode, is also being explored as an option.
Other surgical treatments for PBS are reserved for cases where all other treatment options have failed and in which the symptoms experienced are severe and disabling. These treatments include bladder augmentation (to increase the capacity of the bladder) and urinary diversion (creation of a new urine storage pouch) with or without the removal of the bladder. Women contemplating this type of surgery need to know that pain symptoms may persist even after this type of surgery.
People who suffer from PBS may also benefit from joining a support group. Support groups can allow people to share information and this can reduce feelings of isolation. There are a number of online support groups available, which is useful for those living outside of major metropolitan areas.
Dealing with chronic pain
While some treatment strategies can bring relief from pain, the management of the chronic pain associated with PBS is extremely important. Unfortunately, there is limited information on what medications are most effective for treating the pain associated with PBS. Different medications may need to be tried to see what works best for individuals. Women may find it useful to see a pain management specialist/clinic. Stress management and positive coping techniques can play an important role in reducing a woman’s symptoms and improving their quality of life.
Last updated: December 2016
© Women’s Health Queensland Wide Inc. This article was written by Kirsten Braun and reviewed by the Women’s Health Queensland Wide editorial committee. It was published in Health Journey 2016 Issue 4.