www.incontinentsupport.org

I started with no name for my condition back in March. After dozens of exams and consultations with specialist providers, I have a name for my condition. Now I know what I'm fighting, even though I may lose. My neurologist says it's mild. But it is chronic and could be progressive. I struggled for 9 years trying to find out why I've been sick. Asking myself where all these conditions come from. I have my answer. But it can't be treated or cured. So I'm stuck. My doctors watch me like a hawk. I see my neuro and GP every three months for consults and labs. I've been going to see different providers sometimes 2-3x a week for the last 5 months. I am mentally and physically exhausted. My body is run down. But I'm having insomnia....

I did see my Gastroenterologist today. She reviewed all of my tests and found that I don't have gastroparesis and I'm not lactose intolerant. My GI distress comes from something different. I was diagnosed with pelvic floor dyssynergia, or spasticity. She said it is neuropathic. Basically the nerves controlling my pelvic floor muscles which control my bladder and bowel function, are mis-firing sending the wrong signals of when to open and close. So what I get is a lot of leakage. She said pelvic relaxation therapy may help but it's not guaranteed. The closest place that performs this type of therapy is over an hour away from my house. My first concern is that my wife works all week (I'm disabled and am unable to work), and two is that I can't afford to go. Also I have to pick up my daughter from preschool. She only goes to school for a few hours. So I have to be there for her. I just don't know. Once again I'm stuck. I've been in diapers for 9 years. Not sure if I'll ever get out.

Don, at least you have made progress in identifying your disorder. Many sufferers never get that far. Good luck in working out a way to get the therapy.

--John

Welcome to the club. I've been told basically the same thing, but from a known cause. If you can get pelvic floor physical therapy that is affordable, within easy commute, and that fits your schedule, go for it. The embarrassment can be a real deterrent, but persist. I have the highest regard for physical and occupational therapists. They taught me how to change my diaper safely when my world was spinning out of control due to intense vertigo, and they corrected my clumsy efforts at Kegel exercises. Good luck and report back.