I’m female, in my early forties, and have had moderate ME/CFS for about five years. More recently, I’ve been having a number of bladder symptoms – in particular a frequent and sudden urge to pass what are only quite small amounts of urine. I am also having to go to the bathroom on several occasions during the night.
My doctor thought I might have cystitis – even though I don’t have any pain. However, there were no signs of infection on repeated urine tests. My GP now says that I probably have an “overactive bladder”, and that while there are drugs that can definitely help to calm down an irritable bladder they can cause side-effects, including drowsiness.
Is having an overactive bladder more common in ME/CFS? And is there any other form of treatment – as this is causing me a lot of distress and restricting what I’m able to do outside the house.
As you may already be aware, a part of the nervous system called the autonomic nervous system is commonly involved in ME/CFS. Two sets of autonomic nerves pass from control centres in the brain to the bladder, bowels and heart/blood vessels – where they can either speed up or slow down activity in these parts of the body.
This probably explains why irritable bowel symptoms are quite common in people with ME/CFS and why some people have overactive bladder (OAB) symptoms. OAB is actually quite a common medical problem that affects both men and women – where it can also cause leakage of urine. However, before making a diagnosis of OAB, other causes of urinary frequency and urgency – such as infections, diabetes or the menopause – ought to be excluded.
When it comes to treatment there are some well established self-help measures that should be helpful. These include:
- Cutting down or removing foods and drinks that can cause bladder irritation – examples include alcohol, caffeine-containing drinks, fizzy drinks, citrus fruits and spicy foods,
- Avoiding constipation,
- Reducing weight if you are overweight,
- Bladder training – where the aim is to increase bladder capacity by gradually increasing the amount of time between going to the bathroom and the amount of urine that is passed each time,
- Pelvic floor exercises – which will help to tighten up the supporting muscles and tissues around the bladder.
Drugs that help to relax the bladder, and increase the capacity, are definitely worth considering if symptoms are more severe. However, side-effects – including drowsiness, dry mouth and blurred vision – can limit their use. There are also a number of surgical options that can be considered in more severe cases.
If there is any uncertainty about the cause and/or the best form of management for OAB you could ask your GP to refer you to the urodynamic department at the local hospital where various tests of bladder function and capacity can be assessed. These might include an ultrasound scan (to see how much urine is left in the bladder after emptying), a cystoscopy (to look inside the bladder) or dynamic testing (to see how the bladder is emptying).
- Overactive Bladder Syndrome (OAB): Reviewed by Dr Colin Tidy | Last edited
- Information about Bladder Tests and Treatments: The Mayo Clinic | May 2022
- The ME Association has detailed information explaining a more severe form of overactive bladder called interstitial cystitis.
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.