I am not aware of incontinence being characteristic in CF. Does anybody know this issue is higher than in the general population? I can thoroughly relate to an abdominal issue causing incontinence and CF presents about every abdominal issue in the book. I have been following some post topics recently and went to work on what might be at the root of idiopathic incontinence.
In the last topic post, male incontinence got the spotlight. For women, incontinence has been looked at seriously for a long time, with good reason. If the cause is treatable with medicines or special exercises, there is little reason not to take advantage of all there is available.
Nerve impingement is behind a lot if not most incontinence. Whether nerves are damaged, pinched, scarred from infection or fever, or just locked open/closed, they command your peeing.
Urination is consciously controlled and that control starts in the brain. A pinched nerve rendered a friend of mine weak-kneed and incontinent until surgery relieved the pressure in his neck! This huge nerve winds through the spine and branches out around the base of the ribs at L1and L2. Most of the nerves, left and right, wrap around the kidneys and parallel the ureters to the bladder.
Sphincter muscles at the junction of the ureter and bladder close when the bladder contracts. This is to prevent back flow and back pressure when urinating. The same nerve wraps the bladder and branches off to the prostate. At this point men cut off urine flow from the bladder. Women have the same bladder sphincter, thinly protected and with a short urethra (short for bacteria to travel). In men it is more interior and enveloped in the prostate gland.
Prostate surgery often leaves men incontinent which speaks volumes when looking at the root source of containing or releasing urine. Some surgeries preserve the nerves to the bladder sphincter and there is no incontinence. At the same time, most prostate problems such as prostate cancer or prostatitis, a chronic infection of the prostate, are discovered when a man cannot void. Older adults become quite equal in their ability to contract really nasty UTI’s or urinary tract infections. If a person can void, the pain may encourage holding it in as long as possible. These infections are a common end stage disease and can be fatal on their own. This is not a frivolous topic and though UTI’s frequently make voiding very difficult, the scarring from the infection could result in leaking or incontinence.
One CF related problem I am aware of that could easily screw with your euro genital nerve trunk and those are pseudocysts. I have pseudocysts all over my abdomen, especially my kidneys. They look like lumps of clay squished onto a wire. Somewhere in all that lump-a-bump is a kidney, ureter and feeder vessels and nerves. Every so often something rubs them wrong and I am jumping like someone with an instant kidney stone. I would be looking around pseudocysts, assuming you have them, with extreme prejudice. Most likely that would be your radiologist or urologist looking for this oddity.
Following the nerve path and trying to notice any unusual weakness or tingling may point to where the nerve is compromised. Case in point is my friend who experienced leg weakness, tingling in the groin and an open urinary sphincter. You may notice pain in the flanks or just back pain, one set of symptoms doesn't fit all situations here.
The actual nerve may be fine but the blood supply could be starving the nerves at some point so this requires some specialists. Avoid anybody wanting to run an EMG directly from the prostate to the base of the skull. It is a great diagnostic if you can stand being TASERED in the, you know where. Seriously, this falls in the area of a neurologist, urologist and another specialist or two talking to each other and deciding the best diagnostic course and treatment for you. Too many people have piddled around with this problem until something really serious developed.
Hope this helps,
LL
