Health Organization for Pudendal Education

Hello..I just joined this group today. My name is Janet from Toronto. I have had PN for close to 4 years now. I was misdiagnosed by a Gastroenterologist after my pain began. He told me I had IBSc. I joined a FB group for IBSc and no one had vaginal pain, so I knew something else was up. After a 16 month wait for another Doctor, I was sent for a anorectal manometry test, showing I had pelvic floor dysfunction. After battling for a Urogynocologist, she also said I had Pudendal Neuropathy. She couldn't help me but referred me to Dr. Nucelio Lemos at Mt. Sinai in Toronto. What a waste of time. He sent me for nerve blocks and they weren't successful. So instead of trying to help me, he told me "it's up to your pain management Dr to figure out what to do with you" and dropped me. I am at a loss of where to find help next. I have been doing Pelvic Floor exercises at home which seem to irritate this nerve even more. I am feeling so lost alone and scared. I just don't know where to turn next.
If anyone is here from the Toronto area and have had any success, could you write me here and let me know. There just seems to be a sorry lack of care here for people suffering with this condition.
I currently take 300mg gabapentin and xylocaine topically.
Thanks for accepting me to this forum.

Hi Janet,

I am so sorry to hear what you are going through. For me, I got pudendal neuralgia from childbirth. It used to be the most excruciating pain (clitoral) upon standing. I couldn’t sit in certain positions either. Today, it’s much better than before due to the experts at the Pelvic Health and Rehabilitation Center (USA). I went to four medical doctors and not one knew how to handle pudendal neuralgia. The urogynecologist (spelling?) literally poked my clit with a Q-tip causing me to flinch (not because of the PN....but because....who the heck wouldn’t flinch?!), then drew some totally bs conclusion about the cause of my pain. What a disappointment! Thank goodness for the PHRC. They are far from Toronto but they offer online appointments. My first appointment was online. I can’t guarantee they can help, but I hope the option will at least give you a little hope.

Best wishes, please stay well <3

Mine is also from childbirth, as I had a breech birth. The PN started 3 years after menopause, as hormones must have protected me. There is no help here in Canada. Every other country around the world seems to have Dr's that are knowledgeable about PN and offer to help. I am getting so sick of being bedridden and in constant pain. I am on 300 mg. Lyrica which does squat but my Dr doesn't want me taking any painkillers due to chronic constipation that has come with this. I just don't know how they can let people suffer like this.
I'm so happy you have found help and maybe one day I will have to travel elsewhere for a solution. For now, with this darn virus, I will just have to hold on.
Thank you for writing me back.
J

Hi Janet,

I really do wonder how many women suffer from this in silence after childbirth. I do think it’s uncommon but not *as* uncommon as people think. I do wish that there was more training in the potential injuries to the mother for people learning to be OBs or labor and delivery nurses, as well as more information given to pregnant women directly by their doctors on this topic prior to going into labor (and not expecting people to figure everything out on their own from google). I am generally unhappy with society’s attitude that a healthy baby alone is the success criteria for birth.....a healthy baby AND a chronic-pain-free and fully functioning mom should be the criteria!

Anyway, I have been thinking about you and while I can’t offer any medical advice, I did find a Facebook group you can consider joining for support. It’s more active than this forum so you might get more responses to your questions, though the forum is geared toward women with other types of nerve injuries that have led to mothers being unable to walk for months after birth. Many of them recover, which I personally find comforting, even though it’s a different nerve injury than mine. It’s called “moms with femoral/perineal/sciatic Nerve Damage from Labor and Delivery”

Know that you are not alone and I truly hope you get better soon <3

Hello