Health Organization for Pudendal Education

Grammy--I have had six pelvic floor surgeries and six failed stim trials-- the last being done at a big hospital by a so called specialist . He placed the wires through the tailbone and proceeded to put one directly up my middle back and a second just a bit to the right. All stimulation was so one sided it was ridiculous. Now he wants to try again placing the wires to the right and the left of the lower spine. I have a niece that had a horrid surgery and was told that she would be in pain all the rest of her life--she even lost a kidney due to that surgery. BUT here is the deal. She has been encouraging me to try marijuana for some time but like one other poster I too live in NH so I would need to get it on the qt and hope that I did not get caught. At 68 years old and having a vagianl/rectal condition for 21 years I do not need to have any legal issues for sure. However right as I type this to all of you I do have a script to pick up for Marinol and I would love to know if anyone found that it helped with depression and despair? I have taken a small dose of methadone which they feel has caused central apnea so now I am on a very sophisticated cpap machine and of course I sleep with gel packs wrapped in a cloth right between my legs. It is the only time that I feel ok. All of the surgeries has caused my entire vaginal track to feel wrong and a few years ago I started with the rectal pain. I can not stop the circle of pain=anxiety=pain. So I am going to go and get my prescription and I am going to post for sure exactly what it has and has not done for me. My niece buys the marijuana and rolls it into cigarettes which she said that she uses throughout the day. She said that she only needs a couple of puffs and puts the cigarette out for later. If and when our state gets it I would not want to smoke so I would be looking into other ways of getting it. Marinol is synthetic like so many of our drugs and only the Good Lord knows what they have done to make this--to me it would be safer to use an organic material the Lord put on this earth for us to use. I hope that NH gets with it soon as those of us whose life has been destroyed by pain deserve to take whatever helps us in anyway. As to Valium I went to a site named Ask A Patient and you type in a drug and they give their opinions about it. People on that site have used valium for decades and say that it has worked when nothing else has. I am seriously thinking of using that instead of the klonopin that I have taken for years. So I will be posting under this site about my Marinol journey and trust me if this does not work I may go for the real deal if I could find a way to do that. Never smoked in my life and do not drink so I am rather green when it comes to many things. I am also going to be trying a new compounded vaginal cream and if it works I will post the ingredients for you.

My current drug list is methadone 10mg three times a day, Percocet, klonopin.5mg,effexor 75mg, and vaginal lidocaine cream

Grammy,
I replied to your previous post http://www.pudendalhope.info/forum/view ... 563#p45563. You really need to up your Butrans patch dose. The 5 microgram/hour you have been prescribed is too weak. 10-20 microgram/hour in your case should be therapeutic. You should give Butrans a chance before switching to something else.
My doctor said that the 5 microgram/hour Butrans patch is just to start the medication and get used to it.

I don't believe that switching from klonopin to valium will make any difference. They are very similar drugs. Valium has a longer half-life but is weaker.

Regarding MJ, I do not share that love affair Americans currently have with it. It is not a very good pain killer.

CBD MARIJUANA

There is a marijuana oil out that you don't smoke. It has been developed to help pain and not get you High.
Google it and read the info.
I hate everything about marijuana is why I haven't tried regular marijuana.
I just started cbd, It does not get me High.
I am not ready to give a report yet on if it is helping with pain.
You mix it with water and drink it. The best way is to put drops under your tounge .

Ray

Grammy,
For me marijuana actually made my pain worse. This was a shame because I really liked to use it for recreational purposes but had to give it up after I was afflicted. I did however notice that smoking allowed you to control the dosage more accurately than using some sort of synthetic oral substitute. There is apparently a group of people for whom marijuana is effective. I suspect that the reason is that it relieves anxiety for some people. It always made me feel more relaxed and reflective. This was one of the reasons I hated to give it up. It did however keep me out of the refrigerator after dinner once I gave it up. I currently use 40 mg of oxycodone and 20 mg of hydrocodone per day. Also 800 mg of Lyrica. As Ezer says I would urge you to increase the dosage of your opiate derivatives. These drugs have been very effective for me although I am not crazy about some of the side effects. But the pain is way worse. I just had my second hernia surgery and I am awaiting positive results from that. So far I feel a little better although it has only been three weeks so it is probably hard to tell for sure at this point about the long-term situation. My doctor did find a hernia that he had failed to repair due to the postoperative infection after my first hernia surgery last summer. I am hopeful that this will be an answer for me. Once again I would not hesitate to try any and all drugs that you have not tried yet. You never know what will work for you until you give it a try.

Don

Hello don,
I hope your second hernia repair will help. We had quite an interesting night here in the Bay Area...

Thanks, Ezer. I am giving it a month or two before I post on any of the results. Hopefully it will be good news. And yes it was an interesting night. But at least we don't have tornadoes.Take care.

Don

Any updates after your second hernia surgery Donstore?

Marinol is an FDA approved a drug which has been marketed as a safe alternative to medicinal marijuana. Its active ingredient is synthetic THC, a compound that produces the psychoactive effects of marijuana.

Thank you for posting this. I plan to ask my doctor about it.

Grammy wrote:Grammy--I have had six pelvic floor surgeries and six failed stim trials-- the last being done at a big hospital by a so called specialist . He placed the wires through the tailbone and proceeded to put one directly up my middle back and a second just a bit to the right. All stimulation was so one sided it was ridiculous. Now he wants to try again placing the wires to the right and the left of the lower spine. I have a niece that had a horrid surgery and was told that she would be in pain all the rest of her life--she even lost a kidney due to that surgery. BUT here is the deal. She has been encouraging me to try marijuana for some time but like one other poster I too live in NH so I would need to get it on the qt and hope that I did not get caught. At 68 years old and having a vagianl/rectal condition for 21 years I do not need to have any legal issues for sure. However right as I type this to all of you I do have a script to pick up for Marinol and I would love to know if anyone found that it helped with depression and despair? I have taken a small dose of methadone which they feel has caused central apnea so now I am on a very sophisticated cpap machine and of course I sleep with gel packs wrapped in a cloth right between my legs. It is the only time that I feel ok. All of the surgeries has caused my entire vaginal track to feel wrong and a few years ago I started with the rectal pain. I can not stop the circle of pain=anxiety=pain. So I am going to go and get my prescription and I am going to post for sure exactly what it has and has not done for me. My niece buys the marijuana and rolls it into cigarettes which she said that she uses throughout the day. She said that she only needs a couple of puffs and puts the cigarette out for later. If and when our state gets it I would not want to smoke so I would be looking into other ways of getting it. Marinol is synthetic like so many of our drugs and only the Good Lord knows what they have done to make this--to me it would be safer to use an organic material the Lord put on this earth for us to use. I hope that NH gets with it soon as those of us whose life has been destroyed by pain deserve to take whatever helps us in anyway. As to Valium I went to a site named Ask A Patient and you type in a drug and they give their opinions about it. People on that site have used valium for decades and say that it has worked when nothing else has. I am seriously thinking of using that instead of the klonopin that I have taken for years. So I will be posting under this site about my Marinol journey and trust me if this does not work I may go for the real deal if I could find a way to do that. Never smoked in my life and do not drink so I am rather green when it comes to many things. I am also going to be trying a new compounded vaginal cream and if it works I will post the ingredients for you.

My current drug list is methadone 10mg three times a day, Percocet, klonopin.5mg,effexor 75mg, and vaginal lidocaine cream

Grammy - can you tell me how you did on the Marinol? Where do you get vaginal lidocaine cream?