PoTS and Bladder Issues

Although PoTS is primarily considered to be a disorder of the autonomic (automatic) nervous system involving abnormal regulation of heart and blood pressure control, many other organ systems including the bladder and bowel are often involved. 

Urinary symptoms are common in many conditions which affect the autonomic nervous system such as PoTS and approximately two thirds of patients with PoTS have been shown to have bladder problems.  

In our experience, these symptoms often include a very sudden and unpleasant need to pass urine without much prior warning.  This can on occasions be associated with mild urinary leakage. The abnormal nerve transmission in PoTS appears to affect the normal signalling from the bladder to the brain. 

People without PoTS are typically aware that their bladders are beginning to become full.  They have plenty of warning giving them time to find a bathroom and they only tend to experience unpleasant urinary urgency if they ‘hold on’ for too long.  People with PoTS unfortunately do not have this prior, mild warning that their bladders are nearly full and only experience a sudden, very unpleasant feeling when their bladders are very full.  People with PoTS are also often on high salt and fluid diets and this can exacerbate their urinary problems. 

Secondly, the normal bladder should empty quickly and completely without the need to strain.  Patients with PoTS can find it difficult to empty their bladder efficiently; the flow can be weak, patients feel they cannot empty their bladders completely and often report the need to ‘double void’ and to strain to pass urine(2).    

Some patients with neurological illness (diseases of the brain, spinal cord and nerves) can develop very severe bladder problems.  These include conditions where a high pressure bladder can cause the patient to develop kidney failure.  Our studies in over 50 patients with PoTS has shown this is not a risk with the PoTS bladder. 

Remember that some medications such as midodrine can cause bladder problems, so read the side effects section of the leaflet that comes with your medication. If you think this may be contributing, discuss with the person who is prescribing the medication for you. 

PoTS bladder treatment recommendations: 

Most patients with PoTS bladder do not require medication or surgery.  For patients who have PoTS and urinary problems, we recommend that patients: 

1. Set a timer and empty their bladders every 2 hours even if they do not have the urge to pass urine.  This helps avoid the unpleasant urgency when the bladder reaches its capacity without warning. 

2. When passing urine (voiding), sit with feet flat on the ground and try gentle rocking forward and back to help empty the bladder. Also try voiding with elbows on the knees as this can help squeeze the bladder.  When finished, wait 5 minutes and try to empty the bladder for a second time. 

If the above steps do not work, we recommend that you are referred to your local urology department where they can perform a flow rate and residual volume measurement to check your emptying.  If you are retaining significant urine or you are finding it very difficult to void, we would recommend you are shown how to catheterise yourself with an ‘in and out’ catheter (sometimes called intermittent self catheterisation or ISC). 

If you still have symptoms despite self-catheterisation, we would recommend you are referred to a functional urologist with experience of PoTS bladder and you undergo a urodynamic test.