Health Organization for Pudendal Education

Hi Jeanie and Don,

Jeanie,
I'm sure you can find someone in Washington state who will prescribe Marinol for you. But then if you go back to your pain clinic it is going to show up in your urine tests and then your pain clinic will have a problem with that. So stupid!!!! I hope you can just find someone else where you live who will prescribe the meds you need for you including Marinol.
I could probably get my pain physician to prescribe Marinol for me but I actually haven't been that interested in trying it--though maybe I should have tried that instead of the Fentanyl patch that I am now in the process of weaning off. I am on Lyrica and gained a bit of weight and I'm sure Marinol would have me munching away! I've since lost quite a bit of that Lyrica weight as I started Topamax. I'll be glad to be off the Fentanyl and not have to go to the pain clinic every month to have an appointment and pick up a prescription. Then, if I want, I can use a little marijuana by vaporizor now and then. I find that it does help with the muscle spasms from my MS. It also makes me pretty useless though and I don't like that.( My family finds me quite entertaining though!) So it's not something I would do often, but it's nice to have the freedom to use it if I want and not worry about being caught by a random urine test at the pain clinic.

Don,
O.K., the pressure is on. I'd better write up my experiences with Dr. Dellon soon! I in no way want to be held responsible for your decision to raid your IRA however!
Apparently the other doctors at the Dellon Institute take insurance. So if you have other nerves that need to be attended to surgically they can address those and your insurance would hopefully cover it. Apparently Dr. Dellon is the only one doing the pudendal nerve surgery, so he would have to be the one to do that. I submitted my consultation bill with Dr. Dellon to my insurance company and was reimbursed 100%. Am waiting to see how much they are going to reimburse his surgical fee. I'm sure it won't be as much as he charged.
Anyhow, I have heard that the other physicians who work with him are great so I think it might be worth going for a consult at least. Maybe even before you go see Dr. Hibner in October.

Warm regard to you both,
Lois

Hi Griff!

Thank you for your kind words!!

Oh, I just had to laugh when you said you got an email from Dr. Dellon asking about your rectal pain!! I do owe him an update! I guess I had better do it pronto! I'm supposed to send him a photo of me in my garden!

I think I see your posts on Facebook in the Pudendal Support group as well, so I do know what a rough time you have been having. And it must be so difficult without much support. You really aren't on much in the way of meds at all, at least as far as I'm concerned! You need to be comfortable. If you are in pain it's so much more difficult to cope. I'm glad the Valium is helping you with the pain. I would think perhaps the Tramadol in addition to the Valium might be even better though you would have to be careful as far as how effected you in regard to alertness with driving, etc. It's so easy for other people to be judgemental when they aren't experiencing the pain. Your husband sounds like a kind and supportive man, it's just hard for him to understand, I'm sure.

Is there a possibility for you to get any counseling to just help with all that you are going through? I know that when I was diagnosed with MS it was such a life altering thing that I decided to get some counseling to help me cope. I still go and I find it helps. It's good to have someone to talk to that isn't family, because as you know, family members don't always understand. It seems you don't really have anyone to talk to where you are living and that would be helpful for you.

Whew, teenagers! Yup, that's not easy!! Not much more I can say there but bless you! I'm sure they are great kids though! They do become more understanding as they get older, but that's not much help right now! I'm always available to talk, so if we're not friend on Facebook, I'll make sure we are, and then I can send you my phone number. Do you have Skype?

Well, I'd better do that email to Dr. Dellon!! And then turn this computer off and go for a walk!

Take care and don't over do!! I know, you're just like me!

Will be thinking of you,

Lois

Griff,
Maybe I'm confusing you with someone else on Facebook. Sorry.
Lois

Linda,
I would echo the advice from Lois. Do what you have to do to take care of the pain and take it easy on yourself. You are barely out of the OR. Pain is counter productive to healing. Treating it is no different than taking blood pressure medication or antibiotics. I never had children but my best friends (parents of my goddaughter) used to say that aliens from outer space took her away between the ages of 14 and 17 and replaced her with someone much less agreeable (like in the old sci-fi movie Invasion of the Body Snatchers). We were all quite relieved when the real girl returned and turned into the fabulous young woman that we all loved and cherished. Hang in there.

Lois,
Looking forward to hearing about your progress and experience with Dr. Dellon. Just a note.... I don't think that urine testing for people on pain meds is the rule everywhere. I have been on pain meds for years and have never had a urine test. Best wishes for continued improvement in your recovery.

Don

Linda,
I definitely confused you with someone else on fb in the pudendal support group. Interesting in that this person also had surgery with Dr. Dellon at about the same time you did, I think the same day and her story seemed so much the same! Tramadol, etc.

Linda, Don makes such a good point, you and I are just a little over 7 weeks post-op. We are still healing. I keep forgetting that. Don't be ashamed or feel guilty for needing medication for the pain.

Don,
Thanks for that tip. I may ask my NP to take over my Fentanyl taper as I know she will not make me do urine tests.

Best wishes,
Lois

Well there will be no medical marijuana in this house due to recent circumstances. I'm about to ground my teenagers until they're 21! I'm so mad right now I could spit nails. And of course they pull this crap when they know their dad is out of town.

They always act worse with me when their dad's out of town too, so don't take it personally, Griff! Hope they behave better today. Maybe you need your m.m. more now than ever!

Linda,
My friends with children always said that the only thing that keeps you from killing them when they are teenagers is that you remember how cute they were before.

Don

Yeah Don you're right. I have a beautifully framed picture of them when they were each one yr old that faces my bed so I see it when I first wake up every morning. They are great kids but I just have to remind myself that growing up now in these times is a lot different than when and where I grew up. I grew up in the conservative south and I'm trying to raise them in a very liberal Midwest town. Marijuana is everywhere and easily accessible.

My kids attend a high school on a campus with two other high schools. These are all large schools too. The administration can not possibly manage to keep ahead of them. There are security guards stationed in each school's parking lot to make sure kids don't leave campus with out a pass. Well my son told me a story about a kid that bribed the security guard with pot and sat in his truck and smoked it with him and then let the kid leave school! This is the kind of mindset I'm trying to raise two intelligent, beautiful kids in!

I could be wrong but it's my understanding that marinol is completely legal, is approved by the FDA, and there should be no problem getting a prescription for it in the US.

http://www.justice.gov/dea/ongoing/marinol.html or http://tinyurl.com/37leket

Here's an excerpt from the link:

"Medical" Marijuana - The Facts

Medical marijuana already exists. It's called Marinol.

A pharmaceutical product, Marinol, is widely available through prescription. It comes in the form of a pill and is also being studied by researchers for suitability via other delivery methods, such as an inhaler or patch. The active ingredient of Marinol is synthetic THC, which has been found to relieve the nausea and vomiting associated with chemotherapy for cancer patients and to assist with loss of appetite with AIDS patients.