The bladder is an organ composed of layers of smooth muscle that sits in the pelvis. The function of the bladder is to collect urine that is made in the kidneys. When the bladder reaches its capacity, the nerves connected to the bladder signal the brain that the person needs to urinate. When the time comes to urinate, the bladder walls contract allowing urine to exit the body through the urethra (the tube that carries urine from the bladder to outside the body).
When a person is unable to void urine from the bladder appropriately, symptoms may occur. Initially, some individuals will have urinary hesitancy (difficulty starting the urinary stream). Others will urinate more frequently. Some may have incontinence (accidents). As it progresses, some develop urinary retention, the inability to empty the bladder. Acute urinary retention is defined as “the inability to voluntarily pass urine.”1
Urinary retention in people with Down syndrome
In our experience, people with Down syndrome are at an increased risk of developing urinary retention. This is likely due to a high incidence of decreased muscle tone in the bladder. This means that the muscles in the bladder are “floppy”2 and less taut at rest which can result in the bladder not being able to properly contract when urinating. This results in difficulty starting the urine stream or in urine remaining in the bladder after voiding. As more is learned about the neurologic function of people with Down syndrome, it seems likely that the laxity of the muscles in the bladder is due at least in part to a difference in the function of the autonomic nervous system (the part of the nervous system that acts automatically without us having to think about it).
Additional reasons for urinary retention include side effects from some medications, benign prostatic hyperplasia (enlargement of the prostate gland in men), other blockages of the urethra, and infections. People with Down syndrome may also have acquired behavioral patterns of holding their urine for long periods of time which can cause abnormal stretching of the bladder muscle and lead to a floppy bladder over time. A careful assessment is required to determine if one of these (or something else) is the cause of urinary retention.
There are several potential complications that can occur from urinary retention including the development of urinary tract infections, urinary incontinence, abdominal pain/discomfort, and possible kidney damage.
Urinary tract infections are caused by bacteria entering the bladder through the urethra. Normally, there shouldn’t be bacteria in the urine, but if they are present, they are voided from the bladder during urination. When the bladder isn’t emptied for a prolonged period of time, bacteria that have made their way into the bladder from outside the body can grow and create an infection in the urine. This infection can spread towards the kidneys if not treated properly. Urinary tract infections are typically identified through a urine test and treated with antibiotics.
Urinary incontinence occurs when the bladder becomes over-full and results in unintended leakage of urine from the bladder. A full bladder can quickly become too full which creates an urgent need to use the bathroom and the person may not make it in time.
Abdominal pain/discomfort can occur when the bladder becomes overly full and the person is unable to void in a timely manner. This may contribute to a change in behavior in some individuals with Down syndrome.
Kidney damage. Long standing urine retention in the bladder can cause pressure to build up in the urinary system that is transmitted upward towards the kidneys which can damage the kidneys’ anatomic structure and function over time.
Several tests are available to help determine the cause of the urinary retention.
A urine sample can be collected to do a urinalysis and culture to look for infection. The urinalysis also assesses for protein, red blood cells, and other indicators of possible causes or complications of urinary retention.
An ultrasound of the bladder can be done prior to and after urination to visualize if any urine remains in the bladder. This can be done at a hospital or imaging center with a formal ultrasound of the bladder. The ultrasound can assess both the amount of urine in the bladder as well as the structure of the bladder. A simpler method is the use of a bladder scanner. A bladder scan can be done easily in an office. It is an ultrasound device that is designed only to assess the amount of urine in the bladder. When assessing for urinary retention, the ultrasound can determine post-void residual (PVR), which is the amount of urine left in the bladder after urinating/voiding. More than 300 mL is the value usually considered to be abnormal.
A catheter can also be inserted into the bladder to help quantity how much urine is retained after urinating.
Formal voiding studies can also be done. These studies assess bladder volume, ability to empty the bladder, and bladder capacity. The need to tolerate the catheter that is placed in the bladder during the procedure and the need to report the sensations that one is experiencing as the bladder is filled limit its use in some individuals with Down syndrome.
A camera (cytoscope) can also be inserted into the bladder to visualize any overt causes of obstruction. This test is typically done by a urologist and sometimes performed in the office. For many people with Down syndrome, it is usually done in the operating room under sedation or anesthesia.
A computed tomography (CT) scan or an ultrasound of the kidneys may also be ordered to assess the effect of urinary retention on the kidneys.
Treatment of urinary retention can involve behavior modifications, catheters, medications, and surgical intervention.
For people with bladders that are over-stretched and don’t contract properly, behavior modification can play a big role in preventing overfilling of the bladder. Developing a system such as watch alarms, a schedule or picture instruction chart, or other reminder system that reminds the person to urinate every 2-3 hours for a pre-determined amount of time can help regulate the bladder function. Some toileting behaviors may be difficult to reverse because of the compulsive behaviors that some individuals with Down syndrome may have developed. The underlying cause of the urinary retention should be addressed and new behaviors should be explained and demonstrated in a way that the individual can understand.
Depending on the severity and acuity of the obstruction, a person may have a urinary catheter inserted into the bladder through the urethra. The catheter is attached to a bag. Depending on the need, the catheter may be kept in place for hours, days, or sometimes longer. When in place, the catheter keeps the bladder empty. By "decompressing the bladder" with the catheter, the overstretching of the muscle is reduced, and this can facilitate voiding after the catheter is removed. For adequate decompression, especially if the retention has been chronic, it is often necessary to leave the catheter in place for several days or perhaps a week or more.
In some people, it may become necessary to leave the catheter in long-term (indefinitely). When this is necessary, it is associated with a higher risk of developing bladder infections.
Another option for some is to intermittently (multiple times per day) put the catheter into the bladder via the urethra, empty the bladder, and then remove the catheter.
Some people may also benefit from medications that can improve urinary flow. Medications may:
affect the muscles controlling the outflow of urine (e.g., tamsulosin)
stimulate the muscle that contracts to expel urine (e.g., bethanechol)
or, if the problem is an enlarged prostate, reduce the size of the prostate (e.g., finasteride)
Lastly, surgical intervention by a urologist to remove a part of the prostate or other anatomic obstruction may be a viable option for some people. In some individuals, if a long-term catheter in the bladder through the urethra or intermittent catheterization are not options, a catheter can be surgically placed through the wall of the abdomen into the bladder and the urine is collected in a bag similar to a catheter inserted into the bladder through the urethra.
In our experience, urinary retention is more common in people with Down syndrome. It is important to consider due to the symptoms it can cause and the complications associated with it.
Additional resources from our online library can be found here.
Barrisford, G.W. & Steele, G.S. (2021). Acute urinary retention. In J. Givens (Ed.), UpToDate. Retrieved June 2022 from https://www.uptodate.com/contents/acute-urinary-retention?search=urinary retention&source=search_result&selectedTitle=1~84&usage_type=default&display_rank=1.
Chicoine, B., & McGuire, D. (2010). Urology. In The guide to good health for teens and adults with Down syndrome. Bethesda, MD: Woodbine House.
Original resource written by Agni Vlahos, MD in August 2017. Updated by Brian Chicoine, MD in June 2022.