RE: -Tami or anyone...atrophine/ket/biotin compound? Questions please

[Guest guest]

I have some Tami, are you there? its not working for me. I can send

you them if you respond quickly. I am having bad thoughts I just cant

do this anymore.

>

> Tami,

> I'm so sorry to hear you're back to burning. I cried myself to

sleep last night. Anyway, wish I had some to give you. In case

medicare covers this other recipe you might consider trying

Amitriptylene and Baclofen. It does give some relief of the burning

and some relief to the pelvic floor muscle guarding. I could pass on

the recipe and compounding pharmacy if you decide.

>

> Kathy

>

>

>

> __________________________________________________

>

[Guest guest]

Kathy,

I know sweety, It's a tuff life to live. Not to

mention costly. Im sick of going to Drs. and trying

treatments too. I have that Nerve Block this week. If

I respond im a canidate to have the Radio Frequancy

Riziotomy. I dont know what to do. I just have to get

rid of this back, leg and low abdomin pain. I did get

relief from the vulva burning and the vaginal burning.

Im happy for that , but i have a large area of pain. I

would like the recipie for the baclofen and

Amitriptilyn. I need something that would be covered

by insurance. Im currently waiting to see if I can get

these Supositories covered. If not I would only be

able to get 10 maybe every other month.

I know it's frustrating to have a promissing

medication or treatment and then have it not work.

It's been 8 years now. Iv tried alot of stuff. Im

thankful for the suppositories but right now my back

and leg pain are gonna kill me. Just keep a list Kathy

of everything you have tried. Than try something else.

There has to be something that will work.

I did send a letter to my state represenitive for the

%5 increase for federal funding. New stuff comes out

all the time. In 2 months from now we could here of a

promissing new treatment or medication. It will

happen. We dont know what tomorrow holds. Your cure

can be right around the corner.

Hang on, You can do it....

Sending you cyber hugs and your in my prayers

Love ya, Tami

--- sarahvanessa17 wrote:

> I have some Tami, are you there? its not working for

> me. I can send

> you them if you respond quickly. I am having bad

> thoughts I just cant

> do this anymore.

>

>

>

>

>

> >

> > Tami,

> > I'm so sorry to hear you're back to burning. I

> cried myself to

> sleep last night. Anyway, wish I had some to give

> you. In case

> medicare covers this other recipe you might consider

> trying

> Amitriptylene and Baclofen. It does give some

> relief of the burning

> and some relief to the pelvic floor muscle guarding.

> I could pass on

> the recipe and compounding pharmacy if you decide.

> >

> > Kathy

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hi Tami,. I totally agree 100% with you about a cure. There will be one for all of us someday, maybe not the same one, but we all will find our answers and get out of this pain. You and I are one of the most intense and longest sufferers. What keeps me going is hope. I saw Pam son, one of NYC's top pelvic pain experts. I told her that I believe that I will be painfree one day. She told me that she disagrees. That the best I should hope for is a lower pain level. Needless to say, constant 24/7 pain, even at a lower level is not something I will be satisfied with. I was angry with her statement. I will pray that your "treatment/cure" will be covered by your insurance so that you can lead a normal life, or at least better address your back and other pain issues. Keep up that optimism! We

all need to be reminded that technology is blossoming daily. Love, Sandi

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Sandi, while still searching for that last missing link to my pain, I am living with level 1/2 pain on a 24/7 basis and I promise you it's not that bad. What it means is that I can wear jeans, I just can't wear tight ones. I can have intercourse as frequently as I like (with amply lube) but if I overdo (as in several times in one day and then again the next day - there is some nasty stinging added to the "discomfort" of the vv. In other words, it isn't really pain at this level, but more discomfort - an awareness of the area and that 'be careful' alarm that goes off in our brains when sitting or walking or playing too much.... don't want to make it worse!!!

My last doc visit, I had 3 little tiny areas - one vulvar two vestibular that were still an issue for the doc - as opposed to the entire vulva and vestibule when this all started.

I continue to search for whatever is that last component that keeps this disorder going, but I am eternally grateful that I live with this l/2 pain level now. I have accepted that I may not find that last component, because I suspect it is tied into my low back problems, which are chronic. I will not consider spinal fusion to correct it because of the problems inherent in that surgery so I may have to live like this for the forseeable future.

I know you will find your cure/cures (as you know I believe this is a culmination of many problems coming together in one area and misfiring big time). As you go down each notch on that pain scale, you will see what I mean about this being bearable.

Fingers crossed

Dusty

-----Original Message-----From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of Sandi SharpSent: Monday, April 10, 2006 3:02 PMTo: VulvarDisorders Subject: Re: -Tami or anyone...atrophine/ket/biotin compound? Questions please

Hi Tami,.

I totally agree 100% with you about a cure. There will be one for all of us someday, maybe not the same one, but we all will find our answers and get out of this pain. You and I are one of the most intense and longest