Anyone out there diagnosed with Pudendal Neuralgia?

Thank you so much for this! Can tell me what strength you took, and the worst side effects? Did it affect your sleep, stomach upset, constipation etc.?

I totally understand the severe pain from this condition, it affected all areas of my life. I finally was referred by my pain management to a very experienced physical therapist who specializes in pelvic floor dysfunction of all kinds. She did cupping, massage, stretching, dry needling, everything very specific areas. I went for 12 treatments. My pain Dr had even done a very specific block ...without any relief. I finally started going to a yoga class where the instructor had specialized training in pelvic floor problems. She had me do very specific supported restorative poses and this seemed to help more than any other treatments. I feel it was a combination of all the therapy, my home treatment of stretches, heat, special pillows, etc that provided some eventual relief. I still experience the pain, but if i start to exacerbate it, i can seem to get it under control before it gets too bad. They think mine is probably related to 3 gynecological abdominal surgeries: complete abdominal hysterectomy due to severe endometriosis, repair of vesico vaginal fistula x 2, ovarian teratoma removal, and a pilonidal cyst surgery x 2. At some point this nerve more than likely got entrapped especially since my body produces severe adhesions internally. I also have a connective tissue disease which i feel can affect any part of your body. I hope you find some relief, it is a pain that is so hard to treat, and so hard to ignore as it impacts so much of your daily life. Best wishes to you!

I am in Canada as well. I have lichen sclerosis which has caused nerve damage to the vulva for years, before I was diagnosed. Consequently my life was not great. I did have a couple of minor surgeries to release adhesions. Finally I was referred to Dr. Melanie Pratt. At the time she was head of dermatology at the Ottawa Civic Hospital. She correctly diagnosed my condition. Now I use Clobetasol ointment and take amitriptyline and Lyrica and my life is back on track, the nerve pain only rarely flares a bit. But all in all other problems, such as chronic tinnitus are worse by far. I hope this helps you somewhat. Good luck finding a solution.

I don't remember the dosage. I do remember that I had to get off of it because of the side effects. I was taking it off label for a daily persistent headache that I still have after 3 yrs/3 months. Side effects are different for everyone though. After my pudenal pain went away I mentioned it to my PT that I had stopped seeing and she said that she had read about anti-seizure medicine helping. She was a pelvic floor PT. What have you got to lose?
Mikayla

You’re so right. I don’t tolerate drugs well. I’ll be seeing my GP this week. Hopefully he has at least some knowledge and advice to give me regarding specific drugs. So far, I feel completely on my own. Even my pelvic floor physio, with over 20 years experience, I have a sense that she means well, but is sort of feeling her way forward. A kind of less is
more approach to pudendal neuralgia treatment.
Btw, my brother had non stop headaches for 3 years. He started using a 10% cream solution of dicoflenic in a
glaxial base. He no longer has headaches.
I’ll let you know how the Topsmax works out.

Yes, let me know. Tell me more about your brother's headaches. Where did he put the cream and where did he get it?

He got it with a prescription from his doctor. I believe he puts it on his neck. His headaches seem to originate there. I’ll ask him more about it. He’s away for a few days. I’ll let you know know more as soon as I can.

Do you have many side effects with Lyrica, such as insomnia or constipation ? Does it lower your thyroid?

TU. Where do you live, Robert? If you lived near me I could refer you to the pelvic PT I saw years ago. I'm outside of Philly.
Mikayla

I live in Canada in city called Saskatoon Saskatchewan. No one here knows anything about PN. Some say they do of course, but they don’t. No clue.