Anyone out there diagnosed with Pudendal Neuralgia?

Posted by LeighO57 @leigho55, Jun 5, 2018

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!

@gtassithomas

How were you diagnosed? I developed pudendal nerve pain after a-severe colon infection or so we think. I had many digestive issues prior. Then after multiple on on and off again treatment for small intestinal bacterial overgrowth. I developed cdiff colitis After treatment for that with antibiotic I developed left side burning, tingling in left side of private parts and upper left leg. Going to a pelvic pain center but really need a diagnosis. Could you elaborate on your experience with this doctor?

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To be honest I was having pain for quite a few years, misdiagnosed by my regular gynecologist, referred to a specialized gynecologyst who did a biopsy of my genital area and I have an autoimmune disease called lichen planus… He thought that was the answer but the treatment didn't stop the pain. He prescribed Neurontin which worked wonderfully for the first month so he diagnosed me with neuralgia. He didn't say what kind of neuralgia and then the pain started to come back… I'm still on 1200mg three times a day. Narcotics do work but he wouldn't give me more than 20 Norco because the of medical board… He was worried about his license. He told me to find a pain doctor… Every pain specialist refused me because they didn't deal with "that kind of pain" I set about researching my symptoms and came up with Pudendal Neuralgia myself and also discovered Dr Hibner in the process!!! It took me three months of fighting for past medical records and referrals from my insurance company before I finally got an appointment. The tears I have cried over the last five years are unbelievable… So I have a double whammy…. I have to see the other guy every three months because Apparently the autoimmune can develop scar tissue and close up my vagina!!!!!! 😳😳😳
So last week I saw Dr Hibner… He did an MRI which indicated no nerve entrapment which is good but he did say that because of the pelvic surgeries I'd had in the past the nerve was irritated and was causing the neuralgia. I'm all set for a CT guided spinal nerve block in a few weeks and then the following week he's going to inject botox into my pelvic floor and also do nerve blocks either side of the pudendal nerve from the inside of my pelvis. He's also given me strict instructions to see a specialty physical therapist.
He was thorough and also so kind and he really is passionate about his work. Patients come from all over the US to see him and also from other countries too. You can web search him and find interviews and info on his views
Good luck with your treatment and research into new doctors. I'm sorry you're having this pain too.. It's miserable and debilitating. Have you tried lidocaine ointment 10%? It's a prescription but it helps immensely with the genital pain… Coccyx pain and sit bone pain obviously not but some relief is better than none.

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@nickyfriskel

To be honest I was having pain for quite a few years, misdiagnosed by my regular gynecologist, referred to a specialized gynecologyst who did a biopsy of my genital area and I have an autoimmune disease called lichen planus… He thought that was the answer but the treatment didn't stop the pain. He prescribed Neurontin which worked wonderfully for the first month so he diagnosed me with neuralgia. He didn't say what kind of neuralgia and then the pain started to come back… I'm still on 1200mg three times a day. Narcotics do work but he wouldn't give me more than 20 Norco because the of medical board… He was worried about his license. He told me to find a pain doctor… Every pain specialist refused me because they didn't deal with "that kind of pain" I set about researching my symptoms and came up with Pudendal Neuralgia myself and also discovered Dr Hibner in the process!!! It took me three months of fighting for past medical records and referrals from my insurance company before I finally got an appointment. The tears I have cried over the last five years are unbelievable… So I have a double whammy…. I have to see the other guy every three months because Apparently the autoimmune can develop scar tissue and close up my vagina!!!!!! 😳😳😳
So last week I saw Dr Hibner… He did an MRI which indicated no nerve entrapment which is good but he did say that because of the pelvic surgeries I'd had in the past the nerve was irritated and was causing the neuralgia. I'm all set for a CT guided spinal nerve block in a few weeks and then the following week he's going to inject botox into my pelvic floor and also do nerve blocks either side of the pudendal nerve from the inside of my pelvis. He's also given me strict instructions to see a specialty physical therapist.
He was thorough and also so kind and he really is passionate about his work. Patients come from all over the US to see him and also from other countries too. You can web search him and find interviews and info on his views
Good luck with your treatment and research into new doctors. I'm sorry you're having this pain too.. It's miserable and debilitating. Have you tried lidocaine ointment 10%? It's a prescription but it helps immensely with the genital pain… Coccyx pain and sit bone pain obviously not but some relief is better than none.

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I found this web site extremely informative
http://www.pudendalhope.info/node/9

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My new Dr. has ordered diphenhydramine for help with sleep. I have Pudendal neuralgia & fibromyalgia. Has anyone had any help or negative results with ZZZQuil?

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@beve

My new Dr. has ordered diphenhydramine for help with sleep. I have Pudendal neuralgia & fibromyalgia. Has anyone had any help or negative results with ZZZQuil?

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Hi, @beve – this article from Mayo Clinic on over the counter sleep aids might be interesting to you https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/sleep-aids/art-20047860. Also, this article might be useful in using the new sleep medication https://www.drugs.com/mtm/zzzquil.html.

I'd encourage you to consider starting a new discussion on ZZQuil in the Mayo Clinic Connect Sleep Health group https://connect.mayoclinic.org/group/sleep-health/, as I'm not seeing any discussions on it. Some instructions on starting a new discussion and some other tips on using Connect are on the Get Started with Connect Page, which you can find in the gray box on the bottom of any Connect page https://connect.mayoclinic.org/get-started-on-connect/. See "How to start a new discussion."

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Could You Plz Introduce A Good Doctor For Possible Pudendal Neuralgia?

My mother has chornic pelvic pain , with multiple steroid shot to pelvic region but she has burning pain and I want to take her to Mayo clinic or other places if you know a good doctor? Thanks

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Hello @alexking44 and welcome to Mayo Connect.

I am sorry to hear about your mom's chronic pain. That is so difficult to live with. Has she been diagnosed with Pudendal Neuralgia by another doctor? Were there any surgeries, cancer treatment, etc. that led to her pain?

If you are interested in finding a doctor at Mayo Clinic, here is the link with information about calling for an appointment http://mayocl.in/1mtmR63. They will be glad to help you find the correct physician for your mom to see.

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@alexking44

Could You Plz Introduce A Good Doctor For Possible Pudendal Neuralgia?

My mother has chornic pelvic pain , with multiple steroid shot to pelvic region but she has burning pain and I want to take her to Mayo clinic or other places if you know a good doctor? Thanks

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Hi @alexking44, welcome to Mayo Clinic Connect. You'll notice that I moved your post to an existing discussion where members are talking about pudendal neuralgia, like @beve @nickyfriskel @gtassithomas @rstollery @leigho55 @pita444help @menville and @dmburns54 and who may be able to offer physician recommendations for specialists in pudendal neuralgia. Simple click VIEW & REPLY to see the past posts.

Is your mom able to travel?

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@colleenyoung

Hi @alexking44, welcome to Mayo Clinic Connect. You'll notice that I moved your post to an existing discussion where members are talking about pudendal neuralgia, like @beve @nickyfriskel @gtassithomas @rstollery @leigho55 @pita444help @menville and @dmburns54 and who may be able to offer physician recommendations for specialists in pudendal neuralgia. Simple click VIEW & REPLY to see the past posts.

Is your mom able to travel?

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Hello I need a doctor for my mom and I wish you were not moving to another thread as no one has replied to me,

My mother can travel but we are from Canada and don't have health insurance and limited funds that's why I needed couple of recommended doctors as our funds are limited and we go right to the source

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I feel so bad reading your post. I posted under pudendal neuralgia a few years back and no one really responded. Who gave your mother the diagnosis of PN? did she have testing done to determine that? The Doctor who sent your mom for that nerve testing should have the name of a specialist to refer your mom to see. It is a very rare disease and very, very painful and something that will not go away. This has changed my life drastically and let me tell you Doctor's don't really seem to understand the psychological effects it can have on a person. How long has your mom had this pain? Do you have any idea how this happened? Are you sure this is not entrapment of the pudendal nerve? Has your mom been to a uro-gynecologist? Sorry for all the questions but just wondering what all you have done so far.

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I need few good doctors for pudendal neuralgia? Do you guys know any one?

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Does any one know couple of good doctors/surgeons for pudendal neuralgia?

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@alexking44

Does any one know couple of good doctors/surgeons for pudendal neuralgia?

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http://www.ObGyn.net
Has information about your painful condition.
They describe a surgical procedure.

Please get more than one opinion:
Gynecologist?
Family doctor ?
I wish you a complete healing.

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