Thoughts?

[still_here25]

I’ve posted here before, but got locked out of my account. Anyway, I’m in my 30s and have had chronic moderate to severe OAB with urge incontinence since I was 25ish. I started after a spine injury. They labeled it as a neurogenic bladder.

I’ve been taking oxybuynyn and ptns (weekly) for years which has helped the urgency intensity and frequency as well as the volume leakage. Recently I upped ptns to daily, which has given me even more relief. In fact, my quality of life has drastically improved. I wear a lighter pull on brief now which is great considering I was dependent on heavy duty briefs before. I asked my urologist if there’s anything else we can try other than surgery. She recommended pelvic floor physical therapy, which I’m excited to try.

I guess what I’m curious about is anyone has tried physical therapy for urge incontinence? Did it help? My urologist basically said she’s doesn’t know if it will help or not as much is still unknown about incontinence, which is so frustrating. Also, would love to hear your stories and what has worked for you.

 

[Eden98]

Hi, i am 50 years old and incontinence started for me in my early 30th. Although there had been many signs before, it was a shock for me. One sign was that i was a bedwetter up to my teen years, the other was that i dealt with an overactive bladder for as long as i can remember, although i did not know about a medical term for it. I did not consider it an issue though, it was just an oddity that ran in the family and from childhood on I adjusted my lifestyle to it. Looking back bladder control has always been difficult but still wetting myself as an adult was a shock.
I got into medical trajectory that lasted almost 10 years but no real cause was determined. At the same time i experienced other physical difficulties that were diagnosed as fibromyalgia and later Functional Neurological Disorder. Incontinence is my opinion related to my other symptoms. I experience more and more physical limitations and I am still searching for an answer. I am now on a waiting list at an Ehlers Danlos specialised clinic for diagnosis. I am quite sure i have Ehlers Danlos Hypermobility syndrome ( Beighton score ) and to me my incontinence and other physical difficulties make sense looking at EDS symptoms that can be traced back to low muscle strength.

I did try pelvic floor physical therapy, but it didn’t help me. I guess for me it was just too little, too late but my OAB, and incontinence is definitely caused by muscle weakness of my pelvic floor among other muscles. I hope it will help you but any physical therapy will at least help you understand your body and in particular your muscles better which can help find a diagnosis or underlying cause for your symptoms. Good luck.

 

[still_here25]

Hi Eden, thanks for sharing your story. Sorry to hear that you’ve been dealing with this since your 30s. Sucks that the PT didn’t work. Were there any treatments that did improve your symptoms?

 

[Eden98]

Hi, unfortunately it did not, although I tried every possible treatment. I have no regrets trying any, even if some were quite invasive and the pain and grief when yet another treatment didn’t work out, was sometimes very hard. Being incontinent is hard at any age but the prospect of having to deal with this issue for the rest of my life was unbearable. But incontinence is part of my daily life now and I had no treatments or urologist appointments for over 5 years.