My second pelvic floor PT session started with my therapist and I going over my bladder log and talking about the prior week. By the way, I should mention that they know what I do and has consented to my blogging my therapy. Basically, I do not drink anywhere near enough. They told me that my bladder would be happier with me drinking more coffee and sparkling water than the amount of liquids I have been drinking, which woo hoo! Because, I love coffee. (I have just started tapering onto a medication that is supposed to make people not love coffee and it does not seem to be impacting me that way at all!)
They was surprised at how rarely I pee given what I had told her at the first session and I explained that I had figured out after talking about my experiences and the fact that I could sleep through the night with the majority of my seizures without wetting myself, I can often just stay in whatever position I am in when I feel the post-seizure urgency and allow my bladder to recover. It does not help if my bladder is full, but if my bladder is actually mostly empty and I am sitting down and have a seizure, I can just let it recover. But if I get up as soon as I can move and rush for the toilet, I will probably have an accident. Of course, none of that helps if I am standing while I have a seizure.
Then we did the exam. I felt like it was less invasive than your average pap / internal woman’s exam. They examined my labia with their fingers, they stuck a finger or two in my vagina and pressed against the walls and asked me what I felt. they had me press against her fingers and told me what they were seeing. It was much more empowering than the usual gyn exam because I was getting a lot more feedback than even from the best gyn practitioners I have seen. Also, I felt like I was there for something I wanted (continence), not to prevent a worst case scenario (cervical cancer.)
What they found is that I have very weak right side pelvic wall muscles and I basically have no control over them. This is particularly interesting because my seizures are usually on my left side. So when I have a seizure I only have zero to partial control over my left side while I have control over my right side. But for the pelvic floor muscles, I regularly have no control over the right side muscles, which means basically no muscle control in that area.
Other things of note from my appointment. My therapist told me that I have the bladder log of someone who is or will be incontinent, so I am really glad I am getting therapy now. I was almost too embarrassed to ask for the referral, because in some ways, it is easier to just use pads than to say, hey, I am having trouble with bladder leaks and incontinence – even if you only have to say the latter once. Also, although my neurologists office has incontinence on the check off for every appointment, they pretty much never talk about. Seriously, if I have to acknowledge the problem, the doctors should too. If nothing else to ask if it is better, worse or the same.
I am supposed to really focus on getting enough to drink, at least 8 8 ounce glasses of liquid a day, any liquid. I am also supposed to focus on trying, but not trying too hard, to see if I have any control in any way on the muscles on my right side. Strangely, I feel like I do, but I have realized that I sort of use them like a wall that I use my other muscles against more than moving them. I am fairly certain that they have not always been like this. So now I am asking ex-lovers if they know or remember whether (when) I lost the ability to use those muscles. So far, I know I could not use them 5 years ago, but I remember having quite a bit of control of them 15 years ago.
On the other hand, I’ve never had control of my labia they way some women do – I’ve heard of women who can pick things up with their labia. That would be a cool, but useless, party trick!
My next appointment is not for several weeks, but I will keep you updated.