What is painful bladder syndrome?

If you have painful bladder syndrome, you cannot tolerate your bladder filling to normal capacity, which for most people is 400-600mL. This reduced capacity means you need to empty your bladder more frequently, especially at night. You might also experience lack of sleep, anxiety and difficulty urinating. People with painful bladder syndrome can also have overlap with pudendal nerve pain type symptoms such as pain in the sitting position, sexual dysfunction, and pain with urination.

The condition is more common in women than in men.

What causes painful bladder syndrome?

There are some myths surrounding how and why painful bladder syndrome develops. Normally there are a range of contributing factors, from abnormality of the mucosa (the inner layer of the bladder) to abnormality in the innervation of the bladder and the urethra.

Usually painful bladder syndrome involves all elements of bladder control, from the inner layer of the bladder to the centers in the brain that control urination. This has implications for treatment. Your treatment will involve not only the bladder itself, but also the nervous system that supplies it, and any mental factors in play.

Stages of painful bladder syndrome

There are numerous stages of painful bladder syndrome that you might be experiencing. You will not necessarily progress steadily from one stage to the next.

Stage I: absence of objective findings

If you have pain when your bladder gets full, but we cannot find an abnormality, we will carry out a thorough search for other problems that may explain your symptoms. These cases are the most common, and we often find other causes for patients’ discomfort.

Stage II: minimal objective findings

If we find some evidence for painful bladder syndrome – such as a reduced bladder capacity or minor changes of the bladder wall – you might be classified as a stage II patient. When combined with painful urination or a sensation of constant bladder infection, we sometimes carry out further investigations with magnetic resonance imaging (MRI) or a diagnostic pudendal nerve block.

Stage III: obvious objective findings

Stage III patients have a bladder capacity that has dropped below 200mL and obvious signs of problems from their cystoscopy. If you have progressed to Stage III, you might have a genetic pre-disposition for painful bladder syndrome. We aim for early intervention to prevent the condition progressing further.

Stage IV: extreme reduction in bladder capacity

In extreme cases, which are fortunately rare, the bladder capacity is virtually non-existent and pain is continuous. MRI and sonography show a thickened fibrotic bladder wall.

How is painful bladder syndrome treated?

Most people who visit WHRIA for painful bladder syndrome have already had a number of investigations. We try to avoid adding to the list, unless your initial physical examination indicates you need a pelvic sonography.

Conservative management [SH1] will be coordinated by one of the allied health practitioners at WHRIA and includes psychological support with cognitive behavioral therapy and self-hypnosis.

The mainstay of treatment for Painful Bladder Syndrome is conservative management.

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WHRIA’s treatment protocol

Stages I & II

When your GP refers you to WHRIA for painful bladder syndrome, we will schedule a consultation with Dr Vancaillie or another doctor at WHRIA.

Your initial physical examination might show that you need a sonography. This is an ultrasound examination of the pelvic organs. We carry out this test to find any other problems that might be playing a potential role in your pain or discomfort, such as endometriosis or uterine fibroids.

The sonography will be performed by WHRIA Diagnostics, in the presence of one of WHRIA’s physicians. It’s important for us to be involved at each stage of your diagnosis and treatment, so we have the most information possible about you and your condition.

At the end of your consultation, we will decide on the next steps you need to take. We might recommend a review with allied health professional, where you will discuss your lifestyle, activity (including sleeping pattern) and diet.

Note: WHRIA does participate in clinical research, which may mean we change this treatment protocol at times.

Stages III & IV

If you are referred to WHRIA by your GP, we will organise a consultation with one of our doctors. You probably have a long history of investigations and interventions, so we’ll review these and do a physical examination to have a fresh look at your symptoms. We might decide to carry out further investigations and testing, which could include:

  • Sonography: An ultrasound examination of the pelvis to check for other problems which may coexist with the painful bladder syndrome. The sonography will be performed by WHRIA Diagnostics, in the presence of one of WHRIA’s physicians. This will help us to be as familiar with your condition as possible.
  • Pudendal nerve block: Often painful bladder syndrome overlaps with pudendal neuralgia (nerve pain), so we will perform a diagnostic pudendal nerve block in most cases to check for this.
  • MRI: We might use magnetic resonance imaging to check for other information. Sometimes an MRI will point to possible pudendal nerve entrapment syndrome, co-existing with the painful bladder syndrome.
  • Sacral neuro-modulation: In some cases of stage II and III conditions, we will recommend the use of a sacral neuro-modulator, often in conjunction with pudendal nerve release surgery, to stimulate the sacral nerve near the tailbone, which helps to control your urinary function.

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