Health Organization for Pudendal Education

Not sure if anyone has tried this. My wife has had terrible pudendal neuralgia. I can't imagine it being any worse. Any type of activity, walking, sitting aggravates it. She has been surviving, not living for too long. She tried every drug out there without almost any success. I stumbled across a report of someone seeing benefits for their pelvic pain by taking Marinol. Marinol is typically prescribed for cancer patients for loss of appetite. It is a synthetic THC which is a component of marijuana. Her doctor agreed to prescribe it. Within the four hours of the first dose there was a noticeable difference in nerve pain from any previous drug(neurontin, amitriptiline, valium, lyrica, etc.,etc.,etc.). She only takes Marinol versus the multiple drugs she was taking simultaneously. We are of the strong belief her pelvic pain is caused by muscle issues compressing the nerve. The marinol has seemed to relax the muscles also. She is undergoing PT also but it was obvious the Marinol was beneficial from the start. Increasing activity too much still causes pain levels to jump significantly. She has a long way to go because her muscle issues are still significant but she is a different person now. That said, we are very excited that she may eventually have a normal life again. We are still working on dosage. The side effects have been minimal to date. The cost is expensive for this drug.

I hope this drug can benefit others as I have a level of empathy for those going through this. Pudendal neuralgia affects the whole family, but it is very painful to watch someone suffer like that.

One last thing, bladder function improved significantly. Still some pain but the length of time to void has decreased dramatically.

God bless

I've heard of patients here using medical marijuana for pudendal pain. I guess it depends on where you live, to be able to get it prescribed or not. I guess it's good that you've been able to discontinue the other drugs to help be able to afford the Marinol. Is the thinking that a course of it will cure the muscle spasms, or is she prepared to be on it for life? I'm curious only because I'm more familiar with medication wearing off and the pain is right there waiting. Anyway, I wish you all the best; relief is a good thing!

That's interesting as I did a search of the boards for marinol and medical marijuana and came up with zero. I was wondering if anyone had tried medical marijuana as I have seen reports for neuropathic pain on the web but no information related to pudendal neuralgia. It would be nice to hear if others have tried and if there was any success. We are not in a legal state so hoping Marinol would continue to work. She continues to have some periods of the day where muscles are relaxed and that never happened prior to Marinol. We are encouraged the muscle issues are changing for the better and maybe it won't be necessary for Marinol at some point. I don't expect that anytime soon though as we are early.

Marinol is legal in all states as it is not marijuana.

Mystoryhurts wrote:That's interesting as I did a search of the boards for marinol and medical marijuana and came up with zero.

There were at least two women on Tipna who used it, but I'm not sure if it was in Marinol form. It's been a couple of years since it came up over there. Hope this helps.

Mystoryhurts,

First let me say that I am very sorry to hear about the pain that your wife is in. She's very lucky to have you by her side. Second, thank you for your tip about Marinol. It sounds like a very interesting option for nerve pain. I plan to speak to my neurologist about it next time I see him.

I hope that the drug continues to ease your wife's pain from PN. Good luck.

My spouse has made significant progress since my first post. Marinol has been a godsend. It has been relaxing the muscles causing the nerve pain. She actually has periods where the nerve pain is gone and that has never been the case prior to Marinol. We were not sure if there was an entrapment that would require surgery but now we feel much more confident it is a muscle issue. She continues to have many pelvic muscle issues but is making progress. There appears to be a light at the end of this long, dark tunnel. Best wishes to all that suffer from this awful condition.

More good news! Thanks for sharing it. I wish your wife more better days!

Thank you for posting about this drug and how much it has helped your wife. I only recently found out that it was actually legal in all states. I am putting it on my question list for my next appointment with my pain doctor. I wonder why it is so difficult to find information about this drug? Do you know if it can only help when nerve pain is caused by muscular issues?

I am delighted to hear that your wife is doing so much better, and may it continue!

She believes it helps the nerve pain directly but it is hard to say with certainty. It is worth a try since the side effect profile is less than most drugs. Good Luck.

I did ask my pain management doctor about the possibility of trying Marinol yesterday. He said that he had not prescribed it before and that he did not think that he was allowed to. He said "I am an employee and I can not break the rules of the practice". I assured him that I was not asking him to break any rules but that I had read that it was legal in all states and also that it could be used for chronic pain as well as nausea. He did promise to look into it before my next appointment, but I think I can guess what the answer will be.

Hope anyone else who looks into this has better luck!