Has anyone else dealt with Chiari-related incontinence? I’m 31, never had children, or had any other issue that can usually be related to female incontinence, but I started experiencing “leakage” in the past two years. It happens sometimes when I cough, but mostly I would just suddenly feel too moist down there and I’d go to the restroom and discover it was urine. It took me a long time to bring it up because I was embarrassed! I was referred to a urologist but insurance issues kept me from seeing them temporarily. I thought it was maybe happening because I gained weight but I’ve read that Chiari can actually cause that??! I’ve been referred to the urologist again but the appt. isn’t made yet. Do you think I should wait to schedule the appt. with the urologist until I’ve seen the Chiari specialist and asked her if she thinks it might be related?
Yes
I started having urinary incontinence when I was 17 with a number of full release episodes. Unfortunately, no investigation was done other that a UTI test (negative). I had mentioned it a number of times then stopped as it was embarrassing and no one was concerned. Of course, after kids there is even less concern.
I had urge and stress incontinence before surgery. After surgery, I had no concerns for two months - keep in mind that I was not very mobile at all. At two months, both forms of incontinence returned in full. Again I mentioned it, but was dismissed. Many months later, I pushed for a UTI test which turned out positive, just not with typical symptoms. Ta daa!
Now, I only have stress incontinence. After years of incontinence, my pelvic floor and abdominal muscles are weak. What I have noticed is that in the years since my surgery, I will have periods where I “tweak” my neck. I have remarked on this lovely phenomenon in previous posts. In regards to urinary incontinence, during the three day duration of symptoms, I notice that my muscle tone - especially my abdomen and pelvic floor - feels greatly decreased and I have an increase in urinary incontinence.
Before surgery, I would experience periods of decreased muscle tone, just not with a lot of the other symptoms.
Last fall, I started work on treating this pseudo-biomechanic neck disturbance (diet and miniscule neurodynamic exercise) which has made a big impact on neck “tweak” symptoms such that I feel it worth while to work on pelvic floor strengthening. So far so good. I actually have a sense where my bits are and am slowly addressing the strength and endurance aspect of muscles with no names.
So that is my experience so far. For yourself, I would highly suggest that part of your investigation be a manual (somebody palpates vaginally, anally, and surrounding area) ASSESSMENT of pelvic floor/abdominal muscles, tone, pelvic trigger points, myofascial tissues, and appropriate primitive reflexes. A bladder diary is necessary and tests for urinary flow patterns. I am sure that I am forgetting some.
To stress, the important part is the assessment. I have spoken to too many people who go and talk about their symptoms for 5 minutes and leave with a prescription and then go back for a larger dose then another drug, then a different drug. None of the underlying issues are revealed or diagnosed.
Could Chiari be an underlying source behind your incontinence? Maybe.
I do know that women do not have to experience child birth to develop incontinence. Many other movement/breathing patterns and other factors can contribute to incontinence.
Will surgery alone help the incontinence? Maybe. I would not count on it
What I do regret is not having been diligent in performing pelvic floor strengthening for the past 20 years. Chiari would have undermined my efforts but I believe that I would not have ended up in such a sorry state.
Bottom line. Get a good assessment and keep the muscles strong (or relaxed or both depending on your situation) regardless of what your Chiari is doing.
Good luck in your investigation
Hi, I had bladder testing in 2011 for global prolapse, before I knew I had Chiari. Was positive for leakage. I think all my issues are due to my Chiari. I sometimes have problems with couching, sneezing, and lifting. Sometimes I will leak from just walking or my standing position if my bladder is full. I am fine at night, of course I get up to go, but it never feels like I can never fully empty my bladder. I have had 2 kids and I’m 54. Good luck, Tina
Oh my, yes! I didn’t realise that incontinence was Chiari related until one of the two tests my neurosurgeon scheduled was an incontinence test. Somehow, the test determined whether the incontinence was a bladder related problem, or a nervous system defect. The results of my test proved the latter; CNS defect.
Before the surgery, I could never be more than a 10-second waddle from a toilet. Since the surgery, the problem is much better - but hasn’t gone away entirely. Like you said, the sneeze or hard cough still makes a leak. I always have to carry around an extra pair of undies everywhere I go… just in case!
I believe urniary frequency and incontince are listed as Chiari symptoms. I experience both symptoms.