Re: Elavil

[Guest guest]

Hi Pam,

no, no constipation as far as I have noticed.

And the cream doesn't hurt or burn or anything...feels a little different once it starts working, but nothing bad.

[Guest guest]

Hi Pam!

Sure, no problem! I figured that since I had never heard about the elavil cream before and since I've been on it for a month and it seems to be helping substantially, that everyone could only benefit from knowing that it's out there!

[Guest guest]

Are you guys using anything else besides the Elavil?? A doctor tried to tell me that would cure all my problems 2 years ago when I began having this problem, I didn't buy it then and I don't buy it today. Something caused this to happen for me it may have been a sharp hormonal change on top of already declining estrogen levels. Have you explored other avenues?? What else have you tried?? please let us know what the biopsy tells you.. As a last resort I would medicate to get rid of the pain but my attitude has always been to find a solution and a cure rather than hide symptoms.

Daphne

[Guest guest]

Rose did anyone check your (SP?) pdueodenal nerve it sounds so much like a pinched nerve especially with the sudden onset and the disc problem is the tissue red and irritated?? do you have pain when you touch it or just all the time??

Yeah the sleep on elavil is great I almost forgot I had kids LOL!! I only took it for about a week and I found out I was pregnant, that was two years ago and I didn't know any better!!

My problem started when I took bc pills i started having urinary tract burning and then itching,I was given a ton of un needed meds for lack of anyother ideas and it got so bad I could no longer sit or tolerate sex at all for 4 months it got better when I left it alone and healed from all the burns the medicines caused. I now have good days and bad and very bad, have been through all the same nightmares you have been through believe me, the best thing you can do is research(knowledge is power) trust your own instincts raise your own questions and pray you can find adoc who has some knowledge or is interested in getting some!

Daphne

[Guest guest]

Hi,

Yes, the generic name for Elavil is Amitriptyline. I know how you feel,

trust me.

Tomorrow I will have completed 2 weeks on it and I was under the impression

that it would be beneficial as far as pain is concerned, however, I am

still having

the 24/7 burning, along with the stinging, rawness, etc. etc. I know it's

tough and

I've been suffering for 4 months, but it seems like a lifetime. Every

night I pray that

I wake up with less pain than the day before and sometimes I'm hopeful,

nonetheless,

I'm still waiting for that to happen. I am very frustrated at my doctor

who (in my opinion)

knows nothing about vulvodynia and therefore cannot really do much for me.

Every

medication I am presently on I have had to ask for from him. I am seeing a

OB/GYN

in March/02 believe it or not and have other tests booked (EMG, CT scan) in

Feb. and

March of next year also. So, believe me, I know how you feel and what you

are going

through. I am thinking of going to see my doctor tomorrow just to let him

know that

I am still in this pain with the Elavil and make him realize he hasn't got

rid of me yet!

Please have faith that you'll get better down the road. I know it sounds a

tad unrealistic

at this point, but trust me, it will happen. My faith is the only thing

that is keeping me

going right now, and of course, my wonderful 2 children who are the world

to me and all

I am living for. Your husband is probably a wonderful man who is kind and

understanding

and will see you through this to the end. I have a wonderful partner, I am

divorced, who

is so understanding and I feel truly blessed. So please, do not give up

hope. I am so

grateful for this group and being able to talk to people who truly

understand what I am

going through. Four months ago I thought I was the only one, believe me,

and the

depression, well, let's not even go there! Be strong and courageous, and

we'll see this

through until the day we are pain-free!! I'll pray for you.

Rose

----------

> From: jrs37042@...

> To: VulvarDisorders

> Cc: JRS37042@...

> Subject: Re: Elavil

> Date: Sunday, December 30, 2001 4:39 PM

>

Rose,

Is Amitriptyline the generic name for Elavil?? My doctor started me

on

it on Dec. 18th. Like you I am seeing little results so far.. My doctor

currently has me on 25mg a day. There were a couple of days that the

burning

was a tad bit better but not enough to even begin to get hopeful about.. I

am

having a really bad burn day today.. I just had my little cry for the day

(like that really helps anything), but I am just so sick of this 24/7

burning. Some days I feel like just telling my husband to give up on me

and

divorce me and find someone who is normal down there.. I go back to the

doctor on Jan. 2 for a re-check to see how I am doing on the

Amitriptyline..

Boy is he (my doctor ) gonna get an ear full of belly aching on that appt.

Sorry if I am sounding so out of it today.. I am just literally so

depressed

from having to deal with this 24/7 burning every day for over a yr now. I

know some of you have suffered a lot longer than me, but I guess everyone's

breaking point is different.. Sorry to ramble on.. I hope the Elavil helps

you and you get to feeling better real soon.. Still haven't gotten my

biopsy

results back yet from Walter Army Medical hospital in Washington.

That

is where they had to send my sample to for analyzation. My husband is

currently stationed at Fort Army post in Kentucky but we live on

the

Tennessee side.. Anyway, Best of luck to you.. Hope your suffering ends

soon.

God bless..

[Guest guest]

Hi-

I am not taking Elavil yet- hopefully I won't have to- my doc has

started me on PT and lidocaine (have had VVS for 5 months)- I may try

it at some later point after a few months if I don't improve with PT-

but anyway. When I was finding out about the different treatments

available, I asked my psychotherapist about Elavil, since she's cool

and I know she would give me straight answers about antidepressants.

She said the most major thing with the Elavil was dehydration. If I

had to start taking it, she recommended drinking water like a fish

since the Elavil would result in dried out mucous membranes. Again,

since I'm not actually taking elavil, just dismiss me if this thought

is off base, but I bet the Elavil drying people out would make

vaginas more susceptible to irritation. Just a thought...

Good luck!

Misty

[Guest guest]

<< As a last resort I would medicate to get rid of the pain but my attitude

has always been to find a solution and a cure rather than hide symptoms. >>

______________

I was very resistant to medication, especially elavil---wanting to just find

a cure. Having explored pretty much every avenue (they've all been mentioned

here many times over)...on the verge of a nervous breakdown from 24/7

burning, I started the elavil. I pretty much felt hopeless and miserable

since there was nothing immediate about it except the side effects.

I am so glad I stuck with it...was able to go to the higher levels and found

relief.

Constant testing and running to doctors of ALL KINDS turned up absolutely

nothing wrong with me beyond the constant burning pain, for which they had no

idea what to do--and quite honestly once they decided it wasn't something

" medical " they could have cared less and they shuffled me to the next

doctor/specialist or told me I was crazy and or/sexually abused as a

child--neither of which is true.

For me, the cure was ending the pain. Now that the 24/7 pain is completely

under control and for all intents and purposes is gone...I consider myself

cured.

If you can maintain a good attitude and want to keep searching for a

cure...my only caution is don't give in and have surgery thinking you will

wake up and this will all be over. I have read over and over again, the

times here when desperately someone chose surgery and then woke up with no

change and stitches and more healing to accomplish.

Good luck,

Anne

[Guest guest]

My problems started also when I started birth control.

I was 35 years old and had never used any birth

control. I think I had had one or two yeast infections

in my whole 35 years. I started with Depo shots. It

was great for almost a year, then I started getting

the burning and a yeast infection every three months

or so. Within another year I had developed yeast that

is a daily problem and all the burning and itching

that goes with it including vestibulitis. They say the

Depo was not the problem, but in my gut I believe it

was. They told me to get off the Depo and start on a

low estrogen pill which I did in September and it has

not gotten better. Perhaps worse. I am thinking of

quitting all birth control again. Has anyone gotten

better by doing that?

--- jsndsparsons@... wrote:

> Rose did anyone check your (SP?) pdueodenal nerve

> it sounds so much like a

> pinched nerve especially with the sudden onset and

> the disc problem is the

> tissue red and irritated?? do you have pain when you

> touch it or just all the

> time??

> Yeah the sleep on elavil is great I almost forgot I

> had kids LOL!! I only

> took it for about a week and I found out I was

> pregnant, that was two years

> ago and I didn't know any better!!

> My problem started when I took bc pills i started

> having urinary tract

> burning and then itching,I was given a ton of un

> needed meds for lack of

> anyother ideas and it got so bad I could no longer

> sit or tolerate sex at all

> for 4 months it got better when I left it alone and

> healed from all the burns

> the medicines caused. I now have good days and bad

> and very bad, have been

> through all the same nightmares you have been

> through believe me, the best

> thing you can do is research(knowledge is power)

> trust your own instincts

> raise your own questions and pray you can find adoc

> who has some knowledge or

> is interested in getting some!

> Daphne

>

=====

L. Manser

P.O. Box 2179

Lynnwood, WA 98036

__________________________________________________

[Guest guest]

Hi, Rose! I just wanted to let you know that it takes

approximately 2 weeks for a level of Elavil to build

up in your system, so I am not surprised that you're

not feeling much difference yet. Also, many women

have to take a higher dose than 10 mg. to get any

relief. The downside, of course, is that some women

are not helped at all by Elavil, but you won't know

that until you've tried it for a while, of course!

I'm on a very low dose of Elavil (5 mg. at night).

It sure makes me sleep well, but I'm not sure what

it's doing for my burning. My doctor told me to

increase the dose the next time I get a flare-up, but

since she told me that, I haven't had a real flare-up,

so I can't say if upping the dose will make a

difference.

Also, I was wondering why you stopped physical

therapy? Your symptoms sure *sound* like they would

be helped by PT (muscle spasms, pain on one side,

etc.), but of course, I can't be sure, since I'm not a

doctor and haven't examined you. PT did not help

me right away. I'd say it was a good month or more

before I felt a significant improvement. But since

then, the PT really has been an important part of my

regimen. I feel it has been a tremendous help with my

dysesthetic burning. I even have days now when I feel

very little or no pain. Wow, what a difference! Like

you, last summer I was so depressed and I just wanted

my old life back. At least now I *know* I can improve

and have decent days again. Please don't give up

hope.

I was thinking - would it be possible for your doctor

to write you a prescription for Estrace that you could

either have compounded at a U.S. pharmacy, or simply

order from a U.S. pharmacy? I'm not familiar with the

laws of Canada, but I know some Americans order their

drugs from *Canadian* pharmacies. I wonder if it

could work the other way? Just a thought; something

else for you to ask your doctor.

Take care, Rose. I hope 2002 is kinder to you than

2001 was.

Suzy

__________________________________________________

[Guest guest]

Daphne,

I wouldn't know where to start to get the pdueodenal nerve checked.

Although,

I am having an EMG and CT scan in the new year. The tissue inside the

labia

minora is red and irritated and I have the pain all the time, mostly on the

right.

I made an appt. with my doc for Thurs. and will demand he send me to a

good OB/GYN in Toronto who deals in vulvar problems. At this point, I

don't

care how far I have to travel to see someone who knows something about

this!! Getting back to the pdueodenal nerve, I do still have numbing in

the

right leg and pain only after I've been on it for a while. I try to stay

off my feet

as much as I can. I am so so confused with all this. And, I am tired of

people

telling me it will go away or just give it time. Why don't they realize

that I'm

in pain and I really don't know what is causing it?? I am beyond

frustrated!!

I'll keep you posted with the doc appt. Take care.

Rose

----------

> From: jsndsparsons@...

> To: VulvarDisorders

> Subject: Re: Elavil

> Date: Sunday, December 30, 2001 8:41 PM

>

Rose did anyone check your (SP?) pdueodenal nerve it sounds so much like

a

pinched nerve especially with the sudden onset and the disc problem is the

tissue red and irritated?? do you have pain when you touch it or just all

the

time??

Yeah the sleep on elavil is great I almost forgot I had kids LOL!! I only

took it for about a week and I found out I was pregnant, that was two years

ago and I didn't know any better!!

My problem started when I took bc pills i started having urinary tract

burning and then itching,I was given a ton of un needed meds for lack of

anyother ideas and it got so bad I could no longer sit or tolerate sex at

all

for 4 months it got better when I left it alone and healed from all the

burns

the medicines caused. I now have good days and bad and very bad, have been

through all the same nightmares you have been through believe me, the best

thing you can do is research(knowledge is power) trust your own instincts

raise your own questions and pray you can find adoc who has some knowledge

or

is interested in getting some!

Daphne

[Guest guest]

Suzy,

I'm seeing my doc on Thurs. and will let him decide if upping

the dose of Elavil is OK at this stage. Yesterday was 2 weeks,

and I really should give it more time. When you mention flare-up,

what do you mean? My pain level is always the same, so how can

I tell if I'm having a flare-up? Also, I'm very red and irritated all

over,

so when I see less red does that mean I'm healing?

I know it's a bit premature to give up on the PT, but I really do not

see any improvement, and there are days when I come out of there

in more pain. I guess you're right though, and I should give it more

time. I get more relief from the chiropractor so I'll stick with him a

little longer also. I've lost my patience with this, believe it or not I

used

to be the most patient person in the world, working and teaching children

with special needs and all!

I'll ask my doctor about getting the Estrace from the States if possible,

and I thank you for your suggestion.

Thanks for your support, and I sincerely hope you have continued

success with your pain management. All the best in 2002 and I'll

keep you posted on my progress.

Rose

----------

>

> To: VulvarDisorders

> Subject: Re: Elavil

> Date: Monday, December 31, 2001 12:18 PM

>

> Hi, Rose! I just wanted to let you know that it takes

> approximately 2 weeks for a level of Elavil to build

> up in your system, so I am not surprised that you're

> not feeling much difference yet. Also, many women

> have to take a higher dose than 10 mg. to get any

> relief. The downside, of course, is that some women

> are not helped at all by Elavil, but you won't know

> that until you've tried it for a while, of course!

> I'm on a very low dose of Elavil (5 mg. at night).

> It sure makes me sleep well, but I'm not sure what

> it's doing for my burning. My doctor told me to

> increase the dose the next time I get a flare-up, but

> since she told me that, I haven't had a real flare-up,

> so I can't say if upping the dose will make a

> difference.

>

> Also, I was wondering why you stopped physical

> therapy? Your symptoms sure *sound* like they would

> be helped by PT (muscle spasms, pain on one side,

> etc.), but of course, I can't be sure, since I'm not a

> doctor and haven't examined you. PT did not help

> me right away. I'd say it was a good month or more

> before I felt a significant improvement. But since

> then, the PT really has been an important part of my

> regimen. I feel it has been a tremendous help with my

> dysesthetic burning. I even have days now when I feel

> very little or no pain. Wow, what a difference! Like

> you, last summer I was so depressed and I just wanted

> my old life back. At least now I *know* I can improve

> and have decent days again. Please don't give up

> hope.

>

> I was thinking - would it be possible for your doctor

> to write you a prescription for Estrace that you could

> either have compounded at a U.S. pharmacy, or simply

> order from a U.S. pharmacy? I'm not familiar with the

> laws of Canada, but I know some Americans order their

> drugs from *Canadian* pharmacies. I wonder if it

> could work the other way? Just a thought; something

> else for you to ask your doctor.

>

> Take care, Rose. I hope 2002 is kinder to you than

> 2001 was.

>

> Suzy

>

>

>

> __________________________________________________

>

[Guest guest]

Hi, Rose! When I say " flare-up " , I mean a day when my

pain levels are anywhere from a 7-10. I've come far

enough in my healing process to have days that are

mostly 2-5 on a pain scale of 10. Even a 4-5 day is

more unusal than usual these days, and some days I

feel pain-free. So it's easy for me to sense when I'm

having a flare-up, because the pain goes *way* up. If

you're constantly in a lot of pain, I guess that that

is all pretty meaningless to you. I'm sorry about

that!

As for your skin being red some days and not others, I

know what you mean. At first, I couldn't understand

why neuropathic pain could make my skin red, but

believe me, it can. Between the decreased blood flow,

the stress chemicals you're body is making in response

to pain, etc., it's very possible for neuropathic pain

to cause redness and inflammation. That's not to say

for sure that you have neuropathic pain; certainly

redness can be caused by lots of conditions. When you

get to see a vulvar specialist, s/he *should* be able

to evaluate your pelvis and make an educated diagnosis

of whether or not your pudendal nerve is compressed or

otherwise irritated. (I say *should* because I know

there are some vulvar specialists out there who

pooh-pooh all this pelvic stuff and simply don't check

for it.) Definitely ask her/him if s/he is going to

check that out for you! It may not be your problem,

but it's definitely something to eliminate as a

possible cause of your pain.

In case you're wondering why we all keep mentioning

Estrace instead of Premarin, it's because Estrace is

bio-identical: the estrogen in it is biologically

identical to the estrogen in your body, and thus your

body readily uses it - it " fits " into your estrogen

hormone receptors better than other types of estrogen.

Interesting what you said about vulvodynia making you

less patient. In my case, it made me more patient.

Once I realized that the path toward healing was going

to be slow and filled with ups and downs, I became

much more patient in many aspects of my life. I guess

that's a " benefit " of vulvodynia, in my case???

But I surely can understand why it might make you less

patient. Who wants to deal with this endless pain and

burning, with no particular relief in sight? It's

enough to drive us all crazy.

Take care, Rose. Happy New Year.

Suzy

--- rose wrote:

> Suzy,

> I'm seeing my doc on Thurs. and will let him decide

> if upping

> the dose of Elavil is OK at this stage. Yesterday

> was 2 weeks,

> and I really should give it more time. When you

> mention flare-up,

> what do you mean? My pain level is always the same,

> so how can

> I tell if I'm having a flare-up? Also, I'm very red

> and irritated all

> over,

> so when I see less red does that mean I'm healing?

> I know it's a bit premature to give up on the PT,

> but I really do not

> see any improvement, and there are days when I come

> out of there

> in more pain. I guess you're right though, and I

> should give it more

> time. I get more relief from the chiropractor so

> I'll stick with him a

> little longer also. I've lost my patience with

> this, believe it or not I

> used

> to be the most patient person in the world, working

> and teaching children

> with special needs and all!

> I'll ask my doctor about getting the Estrace from

> the States if possible,

> and I thank you for your suggestion.

> Thanks for your support, and I sincerely hope you

> have continued

> success with your pain management. All the best in

> 2002 and I'll

> keep you posted on my progress.

> Rose

>

__________________________________________________

[Guest guest]

Hi Anne, I was wondering if you were still on the

Elavil and also how many mg did you work up to. I'm

taking Desipramine which is similar I guess. I read

that a woman can increase the dose until she finds

relief and then taper back off of them. I do have a

drs appt in March (a new dr) and I wonder if they will

ever be able to say exactly what caused the problem in

the first place. Take care. It was great to read of

your cure-it's such an encouragement for those of us

walking this path. Kathy

--- cahouse5@... wrote:

> In a message dated 12/30/01 7:34:45 PM,

> jsndsparsons@... writes:

>

> << As a last resort I would medicate to get rid of

> the pain but my attitude

> has always been to find a solution and a cure

> rather than hide symptoms. >>

>

> ______________

> I was very resistant to medication, especially

> elavil---wanting to just find

> a cure. Having explored pretty much every avenue

> (they've all been mentioned

> here many times over)...on the verge of a nervous

> breakdown from 24/7

> burning, I started the elavil. I pretty much felt

> hopeless and miserable

> since there was nothing immediate about it except

> the side effects.

>

> I am so glad I stuck with it...was able to go to the

> higher levels and found

> relief.

>

> Constant testing and running to doctors of ALL KINDS

> turned up absolutely

> nothing wrong with me beyond the constant burning

> pain, for which they had no

> idea what to do--and quite honestly once they

> decided it wasn't something

> " medical " they could have cared less and they

> shuffled me to the next

> doctor/specialist or told me I was crazy and

> or/sexually abused as a

> child--neither of which is true.

>

> For me, the cure was ending the pain. Now that the

> 24/7 pain is completely

> under control and for all intents and purposes is

> gone...I consider myself

> cured.

>

> If you can maintain a good attitude and want to keep

> searching for a

> cure...my only caution is don't give in and have

> surgery thinking you will

> wake up and this will all be over. I have read over

> and over again, the

> times here when desperately someone chose surgery

> and then woke up with no

> change and stitches and more healing to accomplish.

>

> Good luck,

> Anne

>

__________________________________________________