Anyone out there diagnosed with Pudendal Neuralgia?
I have not been on connect for quite a while since I have only recently received a diagnosis (one of many probably to come) I am looking for someone/anyone who has the pain from a surgical injury of sorts to this nerve to talk to. Is there anyone out there with Pudendal Neuralgia on connect? Thank you!
Interested in more discussions like this? Go to the Chronic Pain Support Group.
Chronic pain, digestive problems, saddle pain, can't sit long. Leg weakness. What has worked for others?
Dr Michael Hibner
Hi @oceanic50 and welcome to Mayo Clinic Connect. You'll see that I moved your post to an established conversation about pudendal neuralgia so that you could meet and connect with others that are having the same problems like @charleyzt and @charleyzt . How long have you been diagnosed?
Hi. I live in Houston and have pudendal nerve issues.
What doctor did your surgery, and did it help?
I also have a Tarlov cyst. We aren’t sure if I have PNE or the Tarlov cyst is causing it or both things are causing issues.
Welcome @chpianist, I'm not sure @professora is still following Connect. The member's last post was Jan 2021. There are some other discussions that you might want to read through to learn what others have shared.
— Tarlov Cyst on the spine: Any advice?: https://connect.mayoclinic.org/discussion/tarlov-cyst/
— Perineural or Tarlov cysts: https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/
@rocknrollgirljenn, @violetc, @francesmharris123 and others may have some information or thoughts to share with you on your questions.
Do your doctors think the Tarlov cyst may be compressing the nerve?
The doctors think the Tarlov cyst may be compressing the nerve, but I have scar tissue from a fourth degree tear during child birth, so there may be entrapment elsewhere.
I’’ve been suffering from pudendal neuralgia for over 4 years. I can’t live with the pain. No one here has any answers. I’m afraid surgery might make the pain even worse, if I can even find anyone here in Canada able to do it. I’m trying physio, but I sometimes think stretches just tighten the pelvic muscle even more. Can anyone help me?
Hi im in Houston
Help please. Tarlovs or PN. HAVE BOTH. PAIN IS BAD.
PLUS OFHER PELVIC ISSUES.
Welcome @robert88, It must be just awful trying to deal with the pudendal neuralgia pain for such a long time with no relief. Hopefully other members with experience can share what helped them. While we wait for others to respond, you might want to read through the following discussion on Myofascial Release Therapy that mentions it can help pudendal neuralgia.
— Myofascial Release Therapy (MFR) for treating compression and pain:
Have you heard of MFR or tried other massage therapies to see if they might help relieve the pain some?
I had this monster for 14 years and sat on a donut. The only thing that finally worked was anti-seizure medicine, Topamax. Took it for an unrelated issue and in 2 weeks my pudendal nerve was better.