Health Organization for Pudendal Education

Hi,
I’m new here (49) and think I have PN, although it hasn’t been formally diagnosed yet. It all started with working more and sitting more at work. I developed pain after work across my buttocks, everyone thought it was just hemorrhoids. As months progressed the pain got worse to the point it became debilitating.

I’m now seeing a pelvic floor physio, she thinks my PN is just irritated and she’s focused a lot on rebuilding muscle strength while loosening my pelvic tone. Thinks I have hypertonic pelvic muscles. Issue is, even though I was super fit before this started, any sort of exercise or stretching gives me so much pain the next day or days.

I’ve now developed hypersensitivity/nerve pain around my buttocks near my anus, my labia, and anywhere in between. Prior to starting on antiinflamatories 2 weeks ago I was unable to sit at all. Being in a car was unbearable.

I’ve become disabled by this very quickly. Also after any exam like a pelvic ultrasound or any vaginal exam, my pain is the worst it’s ever been. As in so sore I can’t move. And I’d never had any issues before.
I’ve had a few mris (all normal), normal ultrasound. Been in ER a few times. And now being referred to a gynecologist who specializes in pelvic pain but I’m told it could be up to a 7 month wait!

I can’t work and have been staying with my elderly parents as cant stand long enough to cook, or even be up much. I pretty much have been living in bed and trying to walk 30 mins a day. I’m widowed and have a house to care for and a mortgage. I’m terrified I’ll have to sell and live with my parents who are in their 80s!
To me, this doesn’t sound just like nerve irritation.
They want me to start gabapentin but I’m leery as am very sensitive to any side effects. Ie) even taking a Tylenol knocks me out.
I’ve done a lot of research and wonder if there’s any other Canadians or western Canadians on here? I’m so scared I might need surgery and it doesn’t seem to be done here. I don’t even know if nerve blocks are done here.
I’m upset and beyond frustrated as drs are starting to shrug their shoulders at me and I think my physio has no clue how bad it is. She’s giving me exercises like stairs and squats, yet I’ve read those are bad to do with PN.
I’m also worried it’s so rare that no one here believes me. My dr thinks it’s myofascial pain syndrome and just tells me to exercise.
I feel completely at a loss and have considered I cannot survive like this. It’s been 3 months now and I don’t know what to do.
Thankyou for any and all advice

Hi.I just joined and read your story and had to write back to you. I have had this debilitating condition for close to 4 years. First I was told I had IBSc by a nasty Gastro Dr. I joined IBS groups on Facebook and other than constipation, no one else had pain like mine. I then went to another gastro who sent me for an anorectal manometry test. It showed I had Pelvic Floor Dysfunction. He recommended Pelvic Floor Physio. We are a single income family and I only receive a small amount for physio, which was only 4 times. There isn't much medical doctor help here in Canada. I even managed to get in to see Dr. Nucelio Lemos at Mt. Sinai here in Toronto, which was a total waste of my time. I didn't respond well to nerve blocks, so he just dropped me and told me that the pain management Dr would have to "figure out what to do with me". I too am stuck in bed and at my wits end. I was going to try to visit RMT Glenn Cameron in Cornwall, Ontario but my husband has recently been diagnosed with Cancer. He just came home from a Colostomy and will be undergoing chemo in a few weeks. So I feel your pain. There seems to be so many options and help elsewhere around the world. Why this is ignored in Canada is beyond me. I am here for you if you wish to talk here.