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Is there any information on Pudendal Neuralgia including medications that work?

By October 4, 2008 - 6:50pm
 
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I have Pudendal Neuralgia. I am 25 yrs old and a full time student and mother of two. I have been going through a lot of pointless medications that are getting me nowhere and no relief. I am trying to find out as much information as possible and trying to find a medication or a group of medications that will actually work.

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Anonymous

Hi Ladies,

I've had pudendal neuralgia/neuropathy for years now, and didn't get diagnosed until about 5 years ago. I have experienced great improvement through physical therapy. I have been fortunate enough to work with 2 physical therapists who truly understand PN, vulvodynia, and pelvic floor disfunction. It is hard work--I work a lot (at one point I worked at 3 different college campuses at once--I'm an educator), and it can be hard to find time to do daily excercises that help my PN, but it has been so worth it. Things are not perfect now and I don't think they ever will be, but I now feel like my PN is manageable. I also have a much better understanding about the anatomy and physiology of the pelvic area, and my body. This has been crucial in me managing my PN.

Hope this helps. I've found that working on the nerve sensitivity, learning ways to relax targeted areas in the pelvic region, and strengthening the surrounding muscles has really helped--more so than medication that treats the symptoms.

October 14, 2011 - 1:14pm

I am so sorry to hear that you have been to numerous doctors, and have not found relief yet. I am not familiar with pudendal neuralgia, but I skimmed some professional journals (the ones your doctors should be reading), and provided the summaries below. I am not a doctor, so please know these are only the articles I found; there may be others that say surgery is not an option. (Can you get your hands on these journals through a university library, in order to do some further research?)

1) "Pudendal neuralgia is poorly recognized and poorly treated. Improvement is gained with conservative therapy. Injections and decompression benefit one half and one third of patients, respectively. Neuromodulation needs further evaluation."

This article mentions three types of therapy: conservative, injection/decompression and neuromodulation. I could not gain access to the full article, so am not sure what "conservative therapy" is.

2) I could not even gain access to this articles' abstract, but the title was intriguing: "new diagnostic and treatment algorithm". It also mentions something called "infiltrative therapy". Again, if you can get this article from a library, or at least there is another specific therapy term you can ask your doctor about

3) This article provided results for the LION technique (laparoscopic implantation), which was successfully performed...but he sample group was only three patients. They did find "significant diminution of pain without need for further medical treatment". "Conclusions: Laparoscopy allows optimal implantation of electrodes on all pelvic nerves through a minimally invasive approach. In addition, it permits new applications of neuromodulation for pelvic polyneuropathies or mononeuropathy, not covered by classical spinal cord or transcutaneous techniques."

Lostindiapers, I hope this didn't make you more confused, but I wanted to give you some information and technical terms ("doctor speak") for you to ask your doctors about! Please let me know if you can not access these articles through a university library, and I can try to help further!

Lastly, have you thought about seeing a naturopath or other health professional who helps people with chronic pain? The longer I've been on this site, the more posts I see from people in chronic pain (regardless of the source or condition) who have sought the alternative/complementary medicine professionals and have found this very beneficial. Here's a great website to get started: http://nccam.nih.gov/

Sources:
1) American Journal of Obstetrics and Gynecology
Volume 192, Issue 5, May 2005, Pages 1663-1668
Pudendal neuralgia, a severe pain syndrome
by Jesse Thomas Benson MD and Kenneth Griffis MD

2) Clinical Neurophysiology
Volume 117, Supplement 1, September 2006, Page 204
Abstracts of the 28th International Congress of Clinical Neurophysiology
P17.2 Neurophysiology in infiltrative therapy for pudendal neuralgia: New diagnostic and therapeutic algorithm
by S. Malagutia, M. Spinellia, M. Citeria, L. Zanolloa, J. Tarantolaa and T. Redaellia

3) Neuromodulation
Volume 10 Issue 1, Pages 18 - 23
Published Online: 10 Jan 2007
The Laparoscopic Implantation of Neuroprothesis (LION) Procedure to Control Intractable Abdomino-Pelvic Neuralgia
Marc Possover, MD, PhD Jan Baekelandt, MD Vito Chiantera, MD

October 5, 2008 - 6:07am
(reply to Alison Beaver)

I have been seeing a neurologist since about May of this year. Can I get the links for those sites? I am a college student but I do everything online. I live about 30 minutes from campus and can't drive cause of my medications. I have to find relief soon. I am having surgery in November for IBS, which is a bad side effect to Pudendal Neuralgia.

Thanks for the advice both of you!

Lori Barker
7 years with Pudendal Neuralgia
Currently on 4 different pain medications with no luck
Looking for hope!

October 5, 2008 - 9:20pm

Hi there lostindiapers, am sorry to hear that you haven't found a solution yet. Many times, a doctor will recommend that a PN patient "stop sitting, stop cycling, stop exercising except for walking. And use a pad without a center for keeping pressure off of the perineum."

Another type of treatment includes a series of injections around the nerve using a local anesthetic (like Novocain) and an anti-inflammatory corticosteroid drug.

According to pnfdn.org, "surgical treatment is offered when injection treatments do not provide complete relief. There are different approaches to the nerve. Experience at the Center for Urologic and Pelvic Pain consistently shows that surgical patients have true pudendal nerve entrapment."

Have you tried one of these methods yet? For more information about the injections, please visit this link.

If you can share a little more information with us, we may be able to have a specialist assist you with an answer. Thanks much!

October 4, 2008 - 11:15pm
(reply to Tina Tran)

Thank you so very much. I never knew this site existed. I have bee going to http://spuninfo.org which has helped me out a lot. It is almost impossible for me to stop sitting but I have noticed that if I sit on one of my butt cheeks, it feels kind of better for the moment. I also sit with a pillow in my hammock chair so that there is not that much "hard pressure" on my tailbone. My neurologist has been giving me muscle relaxers and hydrocodone and antidepressants to help out a little but they just are not cutting it anymore. All of my doctors refuse to do surgery cause they don't want to kill the nerve. It is one big chaotic mess! I am tired of feeling alone.

Lori Barker
7 years with Pudendal Neuralgia
Currently on 4 different pain medications with no luck
Looking for hope!

October 4, 2008 - 11:28pm
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