Anyone dealing with pelvic floor spasms and/or pudendal nerve damage?

Posted by valerieanthony31 @valerieanthony31, Jul 9, 2023

On Thursday I'm having a procedure for Botox injections into my pelvic floor muscles due to extremely painful spasms. During the same procedure the doctor will also perform a pudendal nerve block. My condition has rendered me housebound and the doctors have suggested a rather dim prognosis. Apparently, even if the procedures work, the relief generally only lasts for 3-6 months. However, I am doing everything in my power to beat these odds. If anyone has any experience, I would greatly appreciate any insight you have to share.

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emo | @emo | Jul 9, 2023

I don't have pudendal nerve damage, but I have had pelvic floor spasms. You may have tried this already, but are you familiar with, or have you tried pelvic floor PT yet? That's usually the most conservative non-medicinal approach, and it's usually very effective--if you can find a pelvic PT in your area. Within a few months, my pelvic floor spasms resolved with PT, and I continue with my home program, though I still have chronic pelvic pain for other reasons. I return for hands-on PT and to refresh my program every 5-6 months.

But for reasons unknown to me (probably because Women's Health issues don't get enough attention, etc. etc.), many physicians may not be aware of or even bring it up. I had no clue pelvic PT for pelvic pain that was not related to pre- or post-partum conditions existed. Turns out the majority of pelvic PT appointments address chronic pelvic pain. Even my PCP didn't know.

I had to ask him for the order because I read about pelvic PT for pelvic spasms online, asked my regular PT about it (I live in Illinois and thankfully have access to the Shirley Ryan AbilityLab, which is the #1 rehabilitation hospital in the world, as they say), and she told me they definitely had pelvic PTs who could help me with it.

Pelvic PT isn't a cure for everyone, but I'm pretty sure it can be leveraged to help manage pain from this type of condition and/or complement the Botox injections. In fact, it's designed to teach you the skills to be able to self-manage your symptoms at home. (My PT constantly reminds me of this because I get so anxious about the pain returning that I'd just rather keep seeing her every week or few weeks than have her discharge me, but alas, that is not how the system works!)

naturalblondeone | @naturalblondeone | Jul 10, 2023

I have been having pelvic floor spasms for years . When I get a bad one I use a suppository with amitriptyline, baclofen and gabapentin. I also have diazepam suppositories for really bad ones. I find that if I do pelvic floor yoga, it helps a lot. You can Google yoga for the pelvic floor and it shows you different videos of poses. There are also a lot of Facebook groups that give you suggestions and Instagram groups.