The bladder is just another organ and system that is affected by EDS.

In many ways, the reasons why the bladder malfunctions is misunderstood, but it can affect your life on a spectrum of mild to debilitating.

One known (yet still poorly understood) cause of bladder problems within the EDS population is Interstitial Cystitis, otherwise known as ‘painful bladder syndrome’. It primarily causes bladder pain and problems with urination; both retention and continence.

Statistically, bladder problems secondary to EDS mostly affect teenage girls and young women; arguably the age at which you are most conscious about your appearance and lack in self confidence anyway. Wearing incontinence pads/nappies as a teenager, as well as the risk of unavoidable urinary incontinence at any time, can be embarrassing, shaming and cause a further lack in confidence.

On the other end of the spectrum is urinary retention, which often needs a catheter (long thin tube inserted into the bladder through the urethra) to relieve.

This is often a long term problem so many people have an indwelling catheter (the catheter staying in permanently and draining the urine into a bag), have to self catheterise (using small disposable catheters which empty the bladder and then are removed).

There is no cure for Interstitial Cystitis, so there are protocols, increasing in intervention coinciding with severity, to help manage the condition.

The treatment pattern is listed step-by-step below:

  • Treatment starts with lifestyle changes (such as diet, fluid intake, dealing with stress etc.).
  • If this is unsuccessful, medication – including painkillers which interfer with the pain signals reaching the nerves are prescribed.
  • The next step, if no relief by pain killers, is physiotherapy. During these sessions, bladder retraining (if feasible) is often attempted.
  • If still no improvement is observed, surgical treatments such as Botox injections, neuromodulation, or suprapubic (permanent, surgically placed) are an option.
  • In the most severe cases, if all else fails, a cystectomy is performed, meaning the bladder is removed completely and a stoma is made for the urine to leave the body.

This condition is often confused as it includes the word ‘cystitis’ – the common term used to describe an infection. Interstitial cystitis is not an infection, but mimics the symptoms of one – hence the name.

When the bladder of a person with interstitial cystitis is looked at with an internal camera, it is inflamed, scarred, damaged and bleeds easily. This is often how diagnosis is made, although biopsies can be sent off for a more accurate diagnosis, or if the diagnosis is unclear.