introduction

May 15, 2000

,

My daughter's cerebellar tonsils were above the level of the foramen magnum

(i.e., no herniation) - in fact, during surgery, it was discovered that her

tonsils were underdeveloped short " nubs " . Only 2 NSGs diagnosed Chiari I. There

are very few docs who consider anything less than 5mm as significant to symptoms

- and even then! Her many symptoms were alleviated after decompression surgery

and she continues to do very well over a year post-op.

Eurico

> In the meantime, I know there

> is risk in having the surgery itself, so I'd like to know if my little 2mm

> could be causing my problems. Has surgery ever helped anyone with only

> 2mm? Has it helped?

>

December 27, 2000

Benita,

Welcome to the list, and may you reach that goal in the upcoming year!

Terry

THANK YOU!

Benita Amedeo -

Mom to born 7/26/96

adopted and came home 9/8/97 and Angelina Rose born 7/31/00 adopted and came home 9/8/00

photos:

http://home.sprynet.com/~mahalo

December 27, 2000

Benita,

Welcome to the list, and may you reach that goal in the upcoming year!

Terry

THANK YOU!

Benita Amedeo -

Mom to born 7/26/96

adopted and came home 9/8/97 and Angelina Rose born 7/31/00 adopted and came home 9/8/00

photos:

http://home.sprynet.com/~mahalo

December 28, 2000

Benita, Welcome. Sounds like your doing great. Have you tried the Herbal

lfe bread mix yet?? I bought some but have not tried it yet.

Laverne

December 28, 2000

Benita, Welcome. Sounds like your doing great. Have you tried the Herbal

lfe bread mix yet?? I bought some but have not tried it yet.

Laverne

December 28, 2000

Benita, Welcome. Sounds like your doing great. Have you tried the Herbal

lfe bread mix yet?? I bought some but have not tried it yet.

Laverne

January 4, 2001

Welcome, you will find lots of good advice here. Mine is - Don't

get hungry. The first two weeks of induction you're supposed to

eat as much as you want. After that you can start tweaking it.

Beth in TX

Ferne wrote:

<<last night I blew it. I guess it's because I didn't have enough to

> eat at lunch and I was hungry before I got home from work.>>

January 4, 2001

Welcome, you will find lots of good advice here. Mine is - Don't

get hungry. The first two weeks of induction you're supposed to

eat as much as you want. After that you can start tweaking it.

Beth in TX

Ferne wrote:

<<last night I blew it. I guess it's because I didn't have enough to

> eat at lunch and I was hungry before I got home from work.>>

January 4, 2001

Welcome, you will find lots of good advice here. Mine is - Don't

get hungry. The first two weeks of induction you're supposed to

eat as much as you want. After that you can start tweaking it.

Beth in TX

Ferne wrote:

<<last night I blew it. I guess it's because I didn't have enough to

> eat at lunch and I was hungry before I got home from work.>>

January 4, 2001

hey Ferne! Just get right back in the saddle and you'll be fine. Did you

blow it because there wasn't anything legal to quickly make or did you just

want carbs? I really find it helpful to have some pre-cooked food on hand.

Right now my fridge holds 4 roasted chicken breasts and 1 hard boiled egg

(gotta boil some more!). There's also leftover potroast and veggies for the

rest of the family. It really helps when you are too tired to cook or need

something quickly to be able to just reach in and reheat

Kirstie

January 4, 2001

hey Ferne! Just get right back in the saddle and you'll be fine. Did you

blow it because there wasn't anything legal to quickly make or did you just

want carbs? I really find it helpful to have some pre-cooked food on hand.

Right now my fridge holds 4 roasted chicken breasts and 1 hard boiled egg

(gotta boil some more!). There's also leftover potroast and veggies for the

rest of the family. It really helps when you are too tired to cook or need

something quickly to be able to just reach in and reheat

Kirstie

September 6, 2002

Hi !

You've stumbled across a really great group for both emotional support (because vestibulitis sucks, for sure ;?) and for information on different kinds of treatments people are trying.

What medications have you tried that have not worked? What are your symptoms? What are you trying right now?

I hope you're having relatively pain-free days!

Cheers,

Kirstyn (25, in Colorado)

Introduction

Hello Everyone!My name is , and I am new to this whole thing. I found this searching on the internet. I am 23 and was diagnosed with vulvar vestibulitis 2 and a half years ago. I have been through several doctors and several medications and have seen no indications of relief. I thought this might be a good idea to talk to others with similar problems. This is a very frustrating and emotional disorder. It's nice to have a place to come and discuss problems. Well that's me! I guess I will be talking to all of you soon!*****END OF MESSAGE*****-------------------------------------------------Yahoo members can click on:http://groups.yahoo.com/group/VulvarDisordersOn the left side is a listing including bookmarks andFiles . If you click on those you will find much additional information posted by our members.To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

September 6, 2002

Hi !

You've stumbled across a really great group for both emotional support (because vestibulitis sucks, for sure ;?) and for information on different kinds of treatments people are trying.

What medications have you tried that have not worked? What are your symptoms? What are you trying right now?

I hope you're having relatively pain-free days!

Cheers,

Kirstyn (25, in Colorado)

Introduction

Hello Everyone!My name is , and I am new to this whole thing. I found this searching on the internet. I am 23 and was diagnosed with vulvar vestibulitis 2 and a half years ago. I have been through several doctors and several medications and have seen no indications of relief. I thought this might be a good idea to talk to others with similar problems. This is a very frustrating and emotional disorder. It's nice to have a place to come and discuss problems. Well that's me! I guess I will be talking to all of you soon!*****END OF MESSAGE*****-------------------------------------------------Yahoo members can click on:http://groups.yahoo.com/group/VulvarDisordersOn the left side is a listing including bookmarks andFiles . If you click on those you will find much additional information posted by our members.To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

September 6, 2002

Hi !

You've stumbled across a really great group for both emotional support (because vestibulitis sucks, for sure ;?) and for information on different kinds of treatments people are trying.

What medications have you tried that have not worked? What are your symptoms? What are you trying right now?

I hope you're having relatively pain-free days!

Cheers,

Kirstyn (25, in Colorado)

Introduction

Hello Everyone!My name is , and I am new to this whole thing. I found this searching on the internet. I am 23 and was diagnosed with vulvar vestibulitis 2 and a half years ago. I have been through several doctors and several medications and have seen no indications of relief. I thought this might be a good idea to talk to others with similar problems. This is a very frustrating and emotional disorder. It's nice to have a place to come and discuss problems. Well that's me! I guess I will be talking to all of you soon!*****END OF MESSAGE*****-------------------------------------------------Yahoo members can click on:http://groups.yahoo.com/group/VulvarDisordersOn the left side is a listing including bookmarks andFiles . If you click on those you will find much additional information posted by our members.To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

September 6, 2002

Wow, it was great to hear from somebody. When I was first diagnosed two years ago at the navy hospital I was put on premarin. Then my husband got out of the military and we didn't have insurance for a year. The next medicine was lotrizone two times a day with premarin in the afternoon and a sits bath everynight. Then I was just on lotrizone. Then I went to a different doctor who put me on estrace for 3 months. Now i am starting a new prescription cromolyn. I sure hope this works. My doctor also said that becoming pregnant helps reduce the pain...so we are attempting that.....the only problem is the fact to pretty much you need to have intercourse to get pregnant. Lastly, I am signed up to have surgery in January if everything fails. I have also used a low oxalte diet, acupuncture and homeopathic medicine. I am curious as to what treatments others have tried and if they were successful.

Oh...even tried seeing a psychologist...and today am going to a hypnotist....my mother is very much into alternative medicine!.

!

*****END OF MESSAGE*****-------------------------------------------------Yahoo members can click on:http://groups.yahoo.com/group/VulvarDisordersOn the left side is a listing including bookmarks andFiles . If you click on those you will find much additional information posted by our members.To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

September 8, 2002

How long did you try the low oxalate diet and other treatments? I think you should give it at least 6 months to a year. Do you do the Citrical along with it? Drink lots of water (flushes out oxalates) and rinse with sqiurt bottle after urination. I also have used Emu oil when in pain and as a lubricant with no burning after. You can get samples of Emu oil through The Wild Rose Emu Ranch at wildrose@... Ask for Clover, she is very nice and helpful. Anything is worth a shot. Have you tried PT? Sue

P.S. Where's Tom been on the list to talk about this with the "newbies"???

Re: Introduction

Wow, it was great to hear from somebody. When I was first diagnosed two years ago at the navy hospital I was put on premarin. Then my husband got out of the military and we didn't have insurance for a year. The next medicine was lotrizone two times a day with premarin in the afternoon and a sits bath everynight. Then I was just on lotrizone. Then I went to a different doctor who put me on estrace for 3 months. Now i am starting a new prescription cromolyn. I sure hope this works. My doctor also said that becoming pregnant helps reduce the pain...so we are attempting that.....the only problem is the fact to pretty much you need to have intercourse to get pregnant. Lastly, I am signed up to have surgery in January if everything fails. I have also used a low oxalte diet, acupuncture and homeopathic medicine. I am curious as to what treatments others have tried and if they were successful. Oh...even tried seeing a psychologist...and today am going to a hypnotist....my mother is very much into alternative medicine!. ! *****END OF MESSAGE*****-------------------------------------------------Yahoo members can click on:http://groups.yahoo.com/group/VulvarDisordersOn the left side is a listing including bookmarks andFiles . If you click on those you will find much additional information posted by our members.To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

September 8, 2002

How long did you try the low oxalate diet and other treatments? I think you should give it at least 6 months to a year. Do you do the Citrical along with it? Drink lots of water (flushes out oxalates) and rinse with sqiurt bottle after urination. I also have used Emu oil when in pain and as a lubricant with no burning after. You can get samples of Emu oil through The Wild Rose Emu Ranch at wildrose@... Ask for Clover, she is very nice and helpful. Anything is worth a shot. Have you tried PT? Sue

P.S. Where's Tom been on the list to talk about this with the "newbies"???

Re: Introduction

Wow, it was great to hear from somebody. When I was first diagnosed two years ago at the navy hospital I was put on premarin. Then my husband got out of the military and we didn't have insurance for a year. The next medicine was lotrizone two times a day with premarin in the afternoon and a sits bath everynight. Then I was just on lotrizone. Then I went to a different doctor who put me on estrace for 3 months. Now i am starting a new prescription cromolyn. I sure hope this works. My doctor also said that becoming pregnant helps reduce the pain...so we are attempting that.....the only problem is the fact to pretty much you need to have intercourse to get pregnant. Lastly, I am signed up to have surgery in January if everything fails. I have also used a low oxalte diet, acupuncture and homeopathic medicine. I am curious as to what treatments others have tried and if they were successful. Oh...even tried seeing a psychologist...and today am going to a hypnotist....my mother is very much into alternative medicine!. ! *****END OF MESSAGE*****-------------------------------------------------Yahoo members can click on:http://groups.yahoo.com/group/VulvarDisordersOn the left side is a listing including bookmarks andFiles . If you click on those you will find much additional information posted by our members.To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

September 13, 2002

Hi Jill,

I'm far from the most informative and well-researched contributor to this list, but I remember how hard it was for ME to send an introductory email. I also know how quickly I received support and encouragement from responses. So welcome, and I hope you find this group as knowledgeable and helpful as I do.

It sure sounds to me like you have vv and that it's causing you at least some of your discomfort. I confess I don't know much about cystocele, but I do know what it's like to have vvs. The redness and yelp/wince at the q-tip test are good indications of vv, but maybe for your piece of mind you should get a second opinion, just to be sure? I know there are many causes of vulvodynia, and vestibulitis is just one.

The first treatment I was prescribed was also topical steroid treatment with Clobetasol. For me, at least, it was severely irritating and caused a very bad flare-up. But I know that if used sparingly (as directed by a doctor) for a short period of time, its properties should be able to help you. Here's some info on Clob from a post sent by Dee:

-------------------------

Clobetasol and other steroids:

These are for 'symptoms' to help with inflammation, itch and pain, and

also those splits, or tears (for the pain of them)

Clobetasol/temovate et al, works on the immune system to slow it down,

as the Protopic does. Clob is the most potent one out there, and

there are others of less potency, such as Triamcinolone,

Kenalog,Pramasone etc.

This is an exact quote from an MD ( Oakley)

during a 'teaching' seminar on steroids for the skin.

"Topical steroids don't cure skin diseases but they controlsymptoms" so if you're not very bad, and don't havea lot of destruction to the tissue, just the fact

that your inflammed or itch or have surface tissue pain,

this can help, and is the reason for the natural color to return

but it's not the medicine per se' that's doing it,

but it's eliminating the inflammation so your own immune

system can restore itself.Also Steroids are good to be used in an 'acute' situation of pain, but if it's 'chronic' may cause the exact opposite effect of not helping if one ''overuses'' it.

''Overuse'' will cause even MORE inflammationand destruction as it's side effects are identicalto what we already have. That's exactly what happened to me, it was horrible and was the

cause of my fusing with the trauma it caused.Blisters, weeping, seeping,oozing mess till most of my skin almost fell off and had fused, I lost all tone, went from bright angry red to dull ugly gray, saggy, and the PAIN?? Unbearable! I looked like a radiationvictim. That's why I always caution to use the least amt.and 'just a dab'll do ya' .. just a pea size dab enough

to make a light film and always massage all these creams in

gently. That's very important. Also once the 'symptoms'

let up, I'd definitely taper down and then use only as a maintenance

if in a flare up. Again apply wherever your pain is.

I do want to say that often a steroid like the Clobalone (if one isn't very bad) may be enough short term. So Idon't want you to be frightened of it either. ok? Just cautious and aware. If you don't have 'some'relief within a few weeks or so, or you see your

pain worsening, I'd consider going offof it myself, and not be like me with my doctors insistingI use it when I was in extreme pain for almost 9 mos.!

---------------------------------------

I know that I haven't done any biofeedback yet, but others that post here have, so maybe they can advise.

Last note: I also have trouble remembering all the questions I need to ask my doc when I'm in her office---it's funny, but I feel like every doc's visit is a big deal with vvs and I get really nervous now. *Stage fright?* Anyway, I always start making a list of questions a couple days before the appointment and take the list in with me and read from it. I write down the answers and check off the questions as I go. Luckily, my doc is a very patient (and cool) lady and likes my 20 Questions routine, and even takes time to look up what she doesn't know right away.

Cheers and I hope you're having a good day,

Kirstyn

introduction

Hi everyone. This is my first post here. It took me a while to get up the courage to post! I was just diagnosed with vv. I had been experiencing discomfort including pain during intercourse (which basically precluded intercourse) and irritation when sitting, bending, leaning forward on a chair, etc., for 8 months since the birth of my baby. I also apparently have a cystocele (bladder prolapse into the anterior vaginal wall). I am really new to all of this and very confused (about which problem is causing most of the discomfort, whether I really do have vv or just a cystocele, and where to go from here as far as treatment. My doctor diagnosed the vv by doing a q-tip test and he said he saw redness in the areas that caused me to wince and yelp when they were touched with the q-tip. He has not done any other diagnostic tests at all. He gave me a sample of lidocaine, told me to try it to see if it helps the pain, and if so, that the next step would be to try treatment with a steroid cream. I happen to have a good friend who suffered with vv for years and finally saw some very reputable vulvar docs. She had the best results from following Dr. Glazer's home biofeedback program. She thought it might not be a good idea to use the steroid cream as a first resort, as it (and other topical treatments) will affect the vaginal pH and perhaps cause more problems. I am so confused about what to do, and I feel very discouraged hearing/reading about the chronicity of this condition. Between this and having an 8-month old baby who does not sleep well, I have no sex life at all at the age of 30, which is very depressing to me. First and foremost -- what questions should I have for my OB/GYN at this point? Are there any other diagnostic tests that are typically done to make sure this is really vv and rule out any other problems? What are some of the treatment options you all have tried besides the steroid creams? Anyone else have luck with biofeedback? Was it the Glazer protocol? I have an appt. to go back to see him on the 23rd and my husband is coming along (cause I get nervous and forget to ask my questions, etc. and then forget some of what the doctor said). Thank you in advance for your help!Jill*****END OF MESSAGE*****-------------------------------------------------Yahoo members can click on:http://groups.yahoo.com/group/VulvarDisordersOn the left side is a listing including bookmarks andFiles . If you click on those you will find much additional information posted by our members.To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

September 13, 2002

Hi Jill,

I'm far from the most informative and well-researched contributor to this list, but I remember how hard it was for ME to send an introductory email. I also know how quickly I received support and encouragement from responses. So welcome, and I hope you find this group as knowledgeable and helpful as I do.

It sure sounds to me like you have vv and that it's causing you at least some of your discomfort. I confess I don't know much about cystocele, but I do know what it's like to have vvs. The redness and yelp/wince at the q-tip test are good indications of vv, but maybe for your piece of mind you should get a second opinion, just to be sure? I know there are many causes of vulvodynia, and vestibulitis is just one.

The first treatment I was prescribed was also topical steroid treatment with Clobetasol. For me, at least, it was severely irritating and caused a very bad flare-up. But I know that if used sparingly (as directed by a doctor) for a short period of time, its properties should be able to help you. Here's some info on Clob from a post sent by Dee:

-------------------------

Clobetasol and other steroids:

These are for 'symptoms' to help with inflammation, itch and pain, and

also those splits, or tears (for the pain of them)

Clobetasol/temovate et al, works on the immune system to slow it down,

as the Protopic does. Clob is the most potent one out there, and

there are others of less potency, such as Triamcinolone,

Kenalog,Pramasone etc.

This is an exact quote from an MD ( Oakley)

during a 'teaching' seminar on steroids for the skin.

"Topical steroids don't cure skin diseases but they controlsymptoms" so if you're not very bad, and don't havea lot of destruction to the tissue, just the fact

that your inflammed or itch or have surface tissue pain,

this can help, and is the reason for the natural color to return

but it's not the medicine per se' that's doing it,

but it's eliminating the inflammation so your own immune

system can restore itself.Also Steroids are good to be used in an 'acute' situation of pain, but if it's 'chronic' may cause the exact opposite effect of not helping if one ''overuses'' it.

''Overuse'' will cause even MORE inflammationand destruction as it's side effects are identicalto what we already have. That's exactly what happened to me, it was horrible and was the

cause of my fusing with the trauma it caused.Blisters, weeping, seeping,oozing mess till most of my skin almost fell off and had fused, I lost all tone, went from bright angry red to dull ugly gray, saggy, and the PAIN?? Unbearable! I looked like a radiationvictim. That's why I always caution to use the least amt.and 'just a dab'll do ya' .. just a pea size dab enough

to make a light film and always massage all these creams in

gently. That's very important. Also once the 'symptoms'

let up, I'd definitely taper down and then use only as a maintenance

if in a flare up. Again apply wherever your pain is.

I do want to say that often a steroid like the Clobalone (if one isn't very bad) may be enough short term. So Idon't want you to be frightened of it either. ok? Just cautious and aware. If you don't have 'some'relief within a few weeks or so, or you see your

pain worsening, I'd consider going offof it myself, and not be like me with my doctors insistingI use it when I was in extreme pain for almost 9 mos.!

---------------------------------------

I know that I haven't done any biofeedback yet, but others that post here have, so maybe they can advise.

Last note: I also have trouble remembering all the questions I need to ask my doc when I'm in her office---it's funny, but I feel like every doc's visit is a big deal with vvs and I get really nervous now. *Stage fright?* Anyway, I always start making a list of questions a couple days before the appointment and take the list in with me and read from it. I write down the answers and check off the questions as I go. Luckily, my doc is a very patient (and cool) lady and likes my 20 Questions routine, and even takes time to look up what she doesn't know right away.

Cheers and I hope you're having a good day,

Kirstyn

introduction

Hi everyone. This is my first post here. It took me a while to get up the courage to post! I was just diagnosed with vv. I had been experiencing discomfort including pain during intercourse (which basically precluded intercourse) and irritation when sitting, bending, leaning forward on a chair, etc., for 8 months since the birth of my baby. I also apparently have a cystocele (bladder prolapse into the anterior vaginal wall). I am really new to all of this and very confused (about which problem is causing most of the discomfort, whether I really do have vv or just a cystocele, and where to go from here as far as treatment. My doctor diagnosed the vv by doing a q-tip test and he said he saw redness in the areas that caused me to wince and yelp when they were touched with the q-tip. He has not done any other diagnostic tests at all. He gave me a sample of lidocaine, told me to try it to see if it helps the pain, and if so, that the next step would be to try treatment with a steroid cream. I happen to have a good friend who suffered with vv for years and finally saw some very reputable vulvar docs. She had the best results from following Dr. Glazer's home biofeedback program. She thought it might not be a good idea to use the steroid cream as a first resort, as it (and other topical treatments) will affect the vaginal pH and perhaps cause more problems. I am so confused about what to do, and I feel very discouraged hearing/reading about the chronicity of this condition. Between this and having an 8-month old baby who does not sleep well, I have no sex life at all at the age of 30, which is very depressing to me. First and foremost -- what questions should I have for my OB/GYN at this point? Are there any other diagnostic tests that are typically done to make sure this is really vv and rule out any other problems? What are some of the treatment options you all have tried besides the steroid creams? Anyone else have luck with biofeedback? Was it the Glazer protocol? I have an appt. to go back to see him on the 23rd and my husband is coming along (cause I get nervous and forget to ask my questions, etc. and then forget some of what the doctor said). Thank you in advance for your help!Jill*****END OF MESSAGE*****-------------------------------------------------Yahoo members can click on:http://groups.yahoo.com/group/VulvarDisordersOn the left side is a listing including bookmarks andFiles . If you click on those you will find much additional information posted by our members.To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

November 22, 2002

> Hello, My name is , I'm 22 years old and was diagnoised with

Vulvar

> Vestibulitis a few days ago this is after about a year and a half

of doctors

> and tests.

Welcome !

You will find that vulvodynia dn vuvlar vestibulitis are caused by

many different things. The works is in finding the cause so you can

get treatment, relief and possibly cured (many have been cured).

I was looking at our group from when it first started and there is

only a couple of people who have been here since it started so either

they have gotten better and moved on (when people get better they

just stop coming back to post but it sure would be nice to read how

they did it..Candace just posted her story ) or they just stopped

posting.

Have you been taking birth control pills or mini pill or depo provera?

They are something that will cause this in younger women. Because of

the high progestin or in the case of mini pill and depo..100%

progestin, the estrogen does not get to the vulvar area and this is

can cause burning. Going off of them and adding some estrace cream

for a while has helped many.

Please feel free to list your symptoms and when they started etc.

Lynn

November 23, 2002

,

Welcome to the group. I've not used tricyclics for my vvs (can't b/c

I have bipolar disorder). But I've used many other things. Most of

the time, the side effects from meds go away in a few weeks. And they

can take a few weeks to work. So, I would suggest giving it a chance.

It may help you to ask the doc to explain how the tricyclics work or

read up about their use for pain conditions. One of the women on this

list surely could explain it too. I also agree with whoever else

replied to you about birth control pills and Estrace cream.

Sometimes, it is the type of progestin in the pill that bothers us as

well. One thing that many of us have tried and found helpful is the

Estrace cream. Since estrogen helps to fatten up the vulvar tissue

and heal it, it can really help. A good book I've read is called The

" V " Book, by Dr. .

She is a gynocologist who specializes in vulvar problems. I learned a

lot. Best wishes to you. And I hope you'll be feeling better soon.

Hugs,

Meg

November 25, 2002

hi katie

hang in there. consult other group members on surgery or perhaps another

doc. i have been suffering for ten years as well. what symptoms have you

got?

Anja

Introduction

Hello

My name is and I have had vulvar vestibulitis for ten years. I am

only 29 and have gone through many treatments that did not work. I am

frustrated and feeling very alone right now. I started in 1993 with the low

oxalate diet and calcium citrate for two years. I didn't notice much

improvement. I then went to see another doc who said he didn't believe in

that diet and he put me on disipramine and introduced me to lidocaine. This

was in 1996. I was still in college in Utah far away from this doctor that

I saw in home in MD. The disipramine didn't help either. At this point I

gave up getting help. I used lidocaine to numb myself for intercourse.

This problem lead to the break up of my engagement. I am now married to a

wonderful person who tries to be supportive. I am sure it is difficult to

be married to someone who has trouble with intimacy. I recently decided to

find a doctor that may be able to help. I have been seeing Dr. Hamod at

s Hopkins in Baltimore for about two months. I am taking amitrypaline,

allegra, calcium citrate and using stearin lanolin creme. I haven't notice

any improvement with the external burning. I just started physical therapy

with a therapist at Hopkins that specializes in women's health. I am trying

to remain hopeful, but it gets hard to keep your hopes up when you don't

hear many success stories. Dr. Hamod said if I don't start feeling better

externally we will need to discuss surgery. If anyone has any advice I

would love to hear it. I have also been dealing with anxiety attacks for

ten years and have recently been diagnosed with fibromyalgia. Please help.

*****END OF MESSAGE*****

-------------------------------------------------

Yahoo members can click on:

http://groups.yahoo.com/group/VulvarDisorders

On the left side is a listing including Links and

Files . If you click on those you will find much additional

information posted by our members.

To post message: VulvarDisorders

To Subscribe: VulvarDisorders-subscribe

Unsubscribe: VulvarDisorders-unsubscribe

List owner: VulvarDisorders-owner

*****

November 25, 2002