This is not a fun topic to talk about, but if you or your loved one dealing with post-ADEM symptoms are having trouble going to the bathroom (and/or sexual dysfunction), I urge you to talk with your neurologist about it.
I was sent to a Urology/Gynecologist who has sent me to Physical Therapy for Pelvic Floor Support Therapy. It’s not exactly fun and can be embarrassing to talk about with a stranger (although for me, I’ve lost most of my inhibitions from this awful disease), but it is helping! So please consider mentioning this or any symptoms to your doctor.
I’m the same.
I had a severely overactive Bladder, no use of my pelvic floor anymore after paralysis and my sphincter doesn’t work.
I’ve had physio for my pelvic floor. It’s a little device that works the internal muscles. Cheap to buy and easy to use. It’s helped build my muscles again and even though I can’t control them the tone is back to normal again.
My overactive bladder is controlled with Vesicare (Solfeniacin) tablets.
I have to catheterise every time I need to urinate as my sphincter won’t release
It’s annoying but I’ve got used to it now.
Everything in life is different now but you just have to find a way around the problems.
Thank you both for your candor. One of my earliest symptoms was a loss of sensation and loss of control in my anus. I also experience the pins and needles in my pelvic floor and vagina just as I do in my right shoulder, arm, hand and fingers. I am taking 1200 mg of Gabapentin every day and this seems to be working pretty well in keeping everything at bay, although I can sense when things are haywire. I am 4 and half months into my diagnosis so I am not as freaked out as I was initially . . .
I’m glad you’ve found a medicine that helps, but I encourage you to ask for Physical Therapy for this (or ANYTHING) you’re going through.
I’ve been to occupational therapy (to help with hand coordination), PT to help with walking and balance (although that was WAY to early in recovery…I probably would’ve done better without this one at this time), cognitive therapy to help with planning, word-finding and other frustrating things in life (HELPED SO MUCH!) and now PT for a spastic shoulder and PT for pelvic floor support.
I’m four years in and doing better, but officially (by gov’t decree - ridiculous how long this has taken) disabled. These two PTs I’m doing now are helping. I wish I’d mentioned these symptoms a lot sooner, but better late than never.
I’m also going to an acupuncturist recommended by my neurologist for pain management. It’s helping tremendously.
I avoided taking meds because so many had their own side effects, and I wanted to be aware what was happening with me. Besides one of my residuals from ADEM is debilitating headaches, so about once a month I’m on strong meds for that.
Anyway, please ask us or ask your doctor if you’ve got anything weird going on. Well, it’s all weird. So many odd symptoms with this but we’re here to ask if you want to. Or you can privately message one of us if you’d like.
Thanks, Sunshine Lou and LauraK. I appreciate the responses. It is all weird. It certainly helps to hear from fellow ADEM folks as living in isolation with this makes it all scarier . . . one day at a time is all we can do and that is everything
