Health Organization for Pudendal Education

Cora, that is a great idea to have one location for medications. I have terrible side effects from all the meds I have tried, which is a long list, they give me tachycardia, argh. I am always looking for new ideas to ask the dr.'s about. I am very interested in trying supporitories with hopes that it might minimize side effects but reading this thread it may not be the case. I plan on asking Dr. Howard when I see him the end of Dec.

Cora wrote:Regarding meds in general, is there a place where we could list the different classes of drugs and then have people comment on them and their combinations. A reference place for all of us ?

cora

Great suggestion. I will take this to the mods and see if we can organize it. Can you help us come up with a list of sections to include?

sure will. i'll send you a list by pm

So sorry to hear about your experience with the suppository pain reliever. Pardon my naivete, but I wasn't even aware that diazepam suppositories existed. Is this something new or have they always existed? Either way, you're probably better off sticking with the oral medication. Interesting how taking the suppository caused you to become "high." You would have thought that putting it in a local area would cause that area to become numb as opposed to the entire body. I guess the only thing I can suggest is that you be careful and see if you can alter the dosage in any sort of way. Good luck!!!

I don't know if I mentioned my experience w/ vaginal diazepam. I took it for close to 5 months and I believed it would have helped me had I NOT had a PT at the time that was digging vicariously at my obturator internus muscle, flaring against what we now know was my scar entrapped PN at the Alcock's canal. I think vaginal diazepam is a great source of pain relief, and you may have to modify the formula a bit; my original formula was pure diazepam powder, MBK (a fatty acid) and silica gel. These suppositories did not need to be refrigerated. However, they dried out and irritated my vagina to the point where I thought I had a constant yeast infection. I asked my brother about the ingredients, (who is a chemist) and he said "well, silica gel DRIES THINGS OUT... it's the stuff they put in your shoe boxes!" I talked to my compounding pharmacist, and he switched the formula to pure diazepam powder in pure cocoa butter (needed refrigerated). Soothed the vaginal mucousa, created no infection, and helped. Although, I went downhill so fast from the vigorous PT Nazi... I bet when I get a little more post op I could go back to it, but for now, I'm using oral valium. Vaginal valium was only used at night and never made me high, it just helped me sleep like a baby.

AM

A's Mommy wrote:I don't know if I mentioned my experience w/ vaginal diazepam. I took it for close to 5 months and I believed it would have helped me had I NOT had a PT at the time that was digging vicariously at my obturator internus muscle, flaring against what we now know was my scar entrapped PN at the Alcock's canal.... Although, I went downhill so fast from the vigorous PT Nazi...

Lol I can relate to your PT experience. I have been on the receiving end of some truly dreadful PT. I used to flare up badly from vigorous PT. I now know the flare up was not a good sign as I was told but because the PT was pressing into a nerve entrapment also in my alcocks canal. This is a quote from a trigger point article. I think he has a point!

Consider this: If trigger points are not a fibrotic alteration in muscle tissue, then what is with all of this ischemic compression, deep tissue break down of adhesions,knobbles, knuckles, rigid fingers, elbows and knees all about? If, as the current research'strongly suggests, these pain sites are inflamed and abnormal nerve endings, then what in the world are we doing poking things into excited, painful nerves? Imagine you have a painful tooth. Do you want me to poke a fork into it? Does that sound therapeutic to you?

Excellent response, Charlie! I used to think I was a freak not benefitting from "vigorous internal PT", as I was told I should be.
It never made sense to me to apply extreme pressure and needling to unspeakably painful areas but I was always told it was to circulate blood flow or some silly thing.

I'm so grateful to have had good PT with Julie Sarton at UCI medical group... I never once felt worse after PT. I always felt relieved, a little lighter... and emotionally happier too as she is so sweet and caring. Although the PT didn't fix me, it did free up areas immediately after (but they didn't solve the pain) and it also made my vaginismus go away. I am grateful to her... and the emotional support was priceless.

So, if you have PT that makes you worse, run like the wind. PT is not supposed to be like that. A good PT will do it right.

I know, because one time an intern of hers worked on me for 3 minutes, and i had a huge flare afterwards with migraines.... experience versus inexperience = huge difference.

Her Majesty,

Would you share the dosages of the neurontin/ultram/valium that you take? My pain doctor is unbelievably useless and I have to suggest things to him to try. But when I asked him about adding valium he said I could take either ultram or valium but not both. Just curious as I am hoping to change pain doctors as soon as I can find one that has a clue around here!!

I did use valium suppositories once without any relief, but I am thinking that I should have tried them vaginally instead of just rectally and perhaps the dosage was off.

Anyway, thanks to whoever started this discussion again

Grace

Princess Di -- maybe a good question for your vulvodynia specialist would be "what nerve innervates the vulvar area"?

http://lucy.stanford.edu/vulva.html

"The vulva (covering or wrapping) is the region of the external genital structures of the female. It includes the mons pubis, the clitoris, labia majora and minora, the vestibule with its lessor vestibular glands, the urethral meatus and vaginal oriface, and the bulb of the vestibule and greater vestibular glands. The circulation to the vulva is via the perineal branches of the pudendal a., and the innervation is the genital branch of the genitofemoral n. anteriorly (mons), and the cutaneous branch of the pudendal n. centrally."