Health Organization for Pudendal Education

I wish we could do that over here. It works that way in the Netherlands, very sensible I think. What a pity it doesn't help you though, donstore.

Hello all. For six days I've been taking the Canadian equivalent of this synthetic cannibinoid called Cesamet (nabilone). I'm finding it very effective for my pain, especially for the overall muscle achiness/joint pain resulting from the strange ways in which I've been contorting my body to avoid sitting. First few days I was kinda spacey but now I'm better. With the drug I've been able to be more active. I can also sit "normally" again on my trusty home-made cushion for about twenty minutes instead of sitting sideways with my legs tucked under me. (Can't do this anymore as it too hard on the knees and hips).

I decided to take this "medical marijuana" route because the opiates were not agreeing with my digestive system. So far this medication seems to me working for me. I'll post a more detailed update later.

Warm regards,

Lernica

Hi Lernica,
Great news! I'm glad you found something that's finally helping! Was it difficult to get the prescription? How often do you take it? I know you said it made you feel spacy for a couple of days, but are you noticing any other side effects?
I sincerely hope you continue to do well with this!
Warm regards,
Karyn

Hey Karyn,

It was no problem at all obtaining the prescription and in fact my neuro/pain doctor had offered several other synthetic cannabinoids as alternatives. We settled on Cesamet because it is apparently best for someone with no experience with cannabis, like me.

I am taking .5 mg nightly. For the first few days it was very hard to get up the next morning and I was too dizzy to drive. Now I can wake up and get out of bed fine, in fact much better than before since I no longer wake up with aches and pains in my hips and legs. I am still not very comfortable behing the wheel and limit my trips to very short local ones.

Other side effects? Initially an upset stomach but that has subsided. Initially some dysphoria (opposite of euphoria) but that too has dissipated. Dry mouth and loss of libido is the same due to my anti-depressant, sertraline. Cognitive impairment is substantial but much better than with Gabapentin. IMHO these symptoms have been worth it to ease the aches and pains and to get me moving again. I had all but stopped walking because of the aches and pains. Now I am walking comfortably again for the first time in about a month.

Hope you're doing well, Karyn. I've been thinking about you, hoping your recovery is going well. By the sounds of it, it is.

Warm regards,

Lernica

Lernica,

Delighted to hear that the Cesamet is so helpful for you. You seem to have a very good neurologist/PM doctor. This makes me determined to try this drug. I have no experience with cannabis either and I can't get Marinol from my PM doctor as it is against his rules. If it comes down to having to go to Canada, I could do that, but do you know if Canadian doctors are willing to treat Americans? I know there must be long waits for Canadians to get appts so I can see that it might be unfair for them to take American patients. I spend a month in the summer in WA state near the border so a trip to Canada would be relatively easy, but getting an appt might be another story. I would like to do things legally but it looks like I might be forced to break the law for the first time in my life.

Or is there anyone out there from WA state who knows if Marinol/Cesamet is prescribed there?

Jeanie,

I'm sure that Canadian doctors see American patients all the time, provided they pay in cash. I think your plan of seeing a B.C. doctor this summer sounds like a good one. In the meantime, though, would you want to try smoking mj instead? I can't because of my son, etc., and I really don't like the thought of sucking up smoke into my lungs.

I really cannot believe that your PN cannot prescribe synthetic cannabinoid to you! This is insane. I'm sure it's a violation of your constitutional rights!

Hi Jeanie,

I don't post very often but when I started reading through this thread it got me pretty worked up!

It's really too bad you don't have another choice of pain physician groups in your area. There is absolutely no reason why your pain physician can't prescribe Marinol off-label for you. It is done all the time. Many different drugs are prescribed off-label for many different medical conditions. I guess if no other physicians in the group there are doing it then your physician would be rocking the boat if he did it and perhaps he's not very pro-active that way.
I am an nurse practitioner and would not hesitate to prescribe Marinol to someone in pain. I'm not sure how expensive it is and so the only issue I could see running in to might be getting it approved by insurance. (I had to stop working in early April because I just couldn't sit to drive anymore. At that point I was only working one day per week at a Coumadin clinic where I could stand up all day. Stopped family practice two summers ago.).

I think that you could find a physician or a nurse practitioner who would prescribe Marinol for you in Washington state. But you should be able to find a physician who would prescribe it for you in the state you live in, it seems it's just the pain practice you go to that isn't comfortable prescribing it.

I live in a state sandwiched between two states which allow the use of medical marijuana--Maine and Vermont. The New Hampshire state Senate and House of Representatives passed a bill for the use of medical marijuana last year but Governor Lynch vetoed it! I have MS and the use of marijuana has been shown to be very helpful for muscle spasms, pain, and may even slow the progression of the disease process.

Because I go to a pain clinic, which is actually very progressive, I still can't use marijuana, even with my MS because by law every once in a while they do have to do a urine check. Anyhow, talk about being stuck in a frustrating situation!!

All we, and others with legitimate pain are asking, is that we be allowed to get our pain treated so that we can live with some relief from the agonizing pain that so many of us experience. Is that really asking too much? I think that if the people who make it so difficult for people with legitimate pain to get the medication they need actually ever experienced this kind of pain themselves, it would be a whole different story.

On a slightly different note, I have bilateral pudendal nerve surgery as well as inferior cluneal nerve transection with Dr. Dellon on May 18th and I am feeling much better!!! Can't sit yet, but it has only been 7 weeks today and I'm doing way too much. Worked in the garden for 2 1/2 hours yesterday! The true blessing is I am no longer having the agonizing 24/7 ano-rectal nerve pain that had me just about ready to jump off a bridge here in this lovely small city!
I do plan to write more about this in the "Case Updates" section. Just wanted to give it more time before I did.

By the way, "Gusselsprouts" is one of the names we sometimes call our Akita, who's name is Gus.

Lois

Lois and Lernica,

Thank you so much for your helpful replies. You have given me several ideas for possibly obtaining Marinol, which I would rather do than smoke. I don't like the idea of smoking for a number of reasons, including that I would like to know the dosage I am getting. I know there is a NP working in the pain practice that I go to so this might be an option for me to at least find out where I might be able to get a script, although she herself would presumably be under the same rules as the doctors as she works for the same corporation.

Lois, your story has me more than a little worked up! The thought that MS could not only be less painful but also be slowed in its progression by a drug that seems to be difficult for some of us to obtain is just beyond comprehension. I am so glad to hear that your surgery with Dr Dillon seems to be helping you as far as PN pain. Please don't overdo it though I can see how it would be tempting to do so when you feel so much better. Looking forward to reading your case updates when you post them.

Jeanie

Jeanie,
When a doctor won't give me what I want, I find another doctor who will. This might be tougher depending on where you live but it can be done. In California, there are medical marijuana dispensaries on every corner so it's not an issue here. It should be like that everywhere. I used to smoke pot after work to relax but had to give it up because it made my pain worse but everyone is different. Good Luck.

Lois,
Glad your PN pain is better ! Looking forward to hearing about your progress as I have other nerve issues besides the pudendal and am considering raiding the IRA for Dr. Dellon. Keep us posted.

Best Wishes,

Don

Gusselsprouts (Lois), I have found your posts quite interesting. You seem like a woman that takes matters into her own hands and blames no one. I have a lot of respect for your courage. I too had surgery with Dr Dellon and mine was two days before yours. I now understand why Dr Dellon asked me how my rectal pain was in a recent email he sent me from Finland. he of course didn't have my chart with him so was a bit confused.

It sounds like you are doing well and I'm very glad to hear that. I feel like I'm improving too but my pelvic floor muscles are causing some pain that the tramadol wasn't helping. I recently switched to valium and it seems to help with the pain better. And of course, my biggest mistake is trying to do too much. I hate asking for help? And frankly, I don't have too many to ask. I live very far from my extended family and have moved a lot as a result of my husband's career so it's hard to establish and maintain friendships. So that leaves me with my very loving husband who is an executive with an auto supplier and has to travel quite a bit and works a lot. Then I have two beautiful teenagers who would rather hang out with their friends than help me. My 17 yr son is getting much better in that department but my almost 15 yr old daughter needs A LOT of work in that area.

I am very interested in trying cannabis but am afraid. It is legal in my state and I could probably find a doctor fairly easily, but my son had a bit of an issue with it a couple of years ago so that worries me. Plus my husband already thinks I take too many meds as it is (Im only taking valium for the pain but I have two meds that I take for different hormone issues, and I take cymbalta for the depression and trazodone to sleep) and I worry what he will think.

Good luck to you and I wish you the best in your recovery