Re: Vulvar/lower vaginal pain along with lower pelvic pain

[Guest guest]

Hi,

I'm new to this group and your story sounds familiar. I was 17

when I realized I had a problem..went to many doctors over the

years. Been tested for everything under the sun with no negative

results, several biopsies, been told there's nothing wrong with

me and also been told I should see a psychiatrist. I was even

told in 1988 that it could be HIV!!! Scared the s@@t out of

me—got tested, of course—negative. At 45 I finally found the

Vulvar Pain Foundation's (VPF) website after extensive research

of my own. I figured if I was ever going to get better I had to find

the answer myself. There I found Dr Willems and other women

who had the same problem. What a relief it was to know I wasn't

crazy or the only one with this debilitating disease.

I've been seeing Dr Willems for 1.5 years who diagnosed vulvar

vestibulitis and am improving steadily. It's a slow process and

because I also have fibromyalgia, Dr Willems tells me I won't be

completely well until the fibro is under control. I go to Dr St

Amand for fibro treatment and am on guaifenesen. I have also

improved and don't hurt as much anymore. I also did some

biofeedback and that helped me to relax my muscles. I don't

have ovary/kidney pain so can't help you there.

Sex is still painful initially, but not nearly as bad as it has been. I

use Astroglide (like it better than KY) and it helps . I'm lucky to

have a boyfriend that understands/believes I have a problem.

That has not always been the case and relationships have been

terminated because the guy couldn't handle it. Tells me he

wasn't the right guy….so I/you must move on.

Check out the VPF website. The newsletters they publish are

also filled with a lot of useful information and compassionate

stories from women who are recovering. I'm not sure where you

live, but let us know and someone on this group will probably be

able to recommend a doctor.

Keep in touch,

Janet

P.S. I'm not a doctor, but would not want anyone to consider

surgery. I've included three paragraphs from the VPF's website

that I find particularly interesting. Hopefully women out there will

read this and go for a second opinion. Seems like some

doctors don't read their history.

__________________________________________________

http://www.vulvarpainfoundation.org/effective_treatment.htm

Excerpt from " Effective Nonsurgical Treatments for Vulvar Pain "

Vulvar pain is not new. (The vulva is the external genital skin of

women.) Over 100 years ago, pioneers in gynecology described

it as " excessive sensitivity of the nerves supplying the mucus

membrane. " They warned that surgery would not cure it.

" The sensitive tissue has been dissected off and relief

obtained for a time, the hyperesthesia returning, however, as

before the operation. " — Dr. A. J. C. Skene, Treatise on the

Diseases of Women, 1889.

" The vulvectomy did not help. The next month it (pain, itching,

and burning during intercourse for 25 years) all came back. " —

Letter to The Vulvar Pain Foundation, 1997.

__________________________________________________

> Hi all,

> I have pain in my vulvar vagina area, since the age of 17 yo. I

am

> wondering if I will be like this for hte rest of my life. I am now

> 37. I've been given everything from anitbiotics to yeast cream.

> Nothing is helping up to this point except tylenol and ky jelly to

> add moisture. This affects my relationship to a point to where

> intimate relations is painful afterwards. This is with mye24/7

and my

> ob=gyn doctor tells me she can't see anything on tests or

exams that

> indicate any type of disease. It is very frustrating that I have a 1

> inch chart at the clinic on this alone. I also have ovary and

kidney

> pain as well with no answers from the doctor's. I have

experience

> discomfort from the pain which causes tightness in my back,

vagina,

> and tummy and is so uncomfortable it rules my daily life.

> If there is someone like me please respond.

[Guest guest]

Hi,

I'm new to this group and your story sounds familiar. I was 17

when I realized I had a problem..went to many doctors over the

years. Been tested for everything under the sun with no negative

results, several biopsies, been told there's nothing wrong with

me and also been told I should see a psychiatrist. I was even

told in 1988 that it could be HIV!!! Scared the s@@t out of

me—got tested, of course—negative. At 45 I finally found the

Vulvar Pain Foundation's (VPF) website after extensive research

of my own. I figured if I was ever going to get better I had to find

the answer myself. There I found Dr Willems and other women

who had the same problem. What a relief it was to know I wasn't

crazy or the only one with this debilitating disease.

I've been seeing Dr Willems for 1.5 years who diagnosed vulvar

vestibulitis and am improving steadily. It's a slow process and

because I also have fibromyalgia, Dr Willems tells me I won't be

completely well until the fibro is under control. I go to Dr St

Amand for fibro treatment and am on guaifenesen. I have also

improved and don't hurt as much anymore. I also did some

biofeedback and that helped me to relax my muscles. I don't

have ovary/kidney pain so can't help you there.

Sex is still painful initially, but not nearly as bad as it has been. I

use Astroglide (like it better than KY) and it helps . I'm lucky to

have a boyfriend that understands/believes I have a problem.

That has not always been the case and relationships have been

terminated because the guy couldn't handle it. Tells me he

wasn't the right guy….so I/you must move on.

Check out the VPF website. The newsletters they publish are

also filled with a lot of useful information and compassionate

stories from women who are recovering. I'm not sure where you

live, but let us know and someone on this group will probably be

able to recommend a doctor.

Keep in touch,

Janet

P.S. I'm not a doctor, but would not want anyone to consider

surgery. I've included three paragraphs from the VPF's website

that I find particularly interesting. Hopefully women out there will

read this and go for a second opinion. Seems like some

doctors don't read their history.

__________________________________________________

http://www.vulvarpainfoundation.org/effective_treatment.htm

Excerpt from " Effective Nonsurgical Treatments for Vulvar Pain "

Vulvar pain is not new. (The vulva is the external genital skin of

women.) Over 100 years ago, pioneers in gynecology described

it as " excessive sensitivity of the nerves supplying the mucus

membrane. " They warned that surgery would not cure it.

" The sensitive tissue has been dissected off and relief

obtained for a time, the hyperesthesia returning, however, as

before the operation. " — Dr. A. J. C. Skene, Treatise on the

Diseases of Women, 1889.

" The vulvectomy did not help. The next month it (pain, itching,

and burning during intercourse for 25 years) all came back. " —

Letter to The Vulvar Pain Foundation, 1997.

__________________________________________________

> Hi all,

> I have pain in my vulvar vagina area, since the age of 17 yo. I

am

> wondering if I will be like this for hte rest of my life. I am now

> 37. I've been given everything from anitbiotics to yeast cream.

> Nothing is helping up to this point except tylenol and ky jelly to

> add moisture. This affects my relationship to a point to where

> intimate relations is painful afterwards. This is with mye24/7

and my

> ob=gyn doctor tells me she can't see anything on tests or

exams that

> indicate any type of disease. It is very frustrating that I have a 1

> inch chart at the clinic on this alone. I also have ovary and

kidney

> pain as well with no answers from the doctor's. I have

experience

> discomfort from the pain which causes tightness in my back,

vagina,

> and tummy and is so uncomfortable it rules my daily life.

> If there is someone like me please respond.

[Guest guest]

Hi. I'm one of Dr. Willems patients as well... I wanted to mention

something that may or may not be helpful. You said you did

biofeedback... (Out of curiosity, who'd you go to? I go to

PT.) One of the things I discovered, and this may play a role in your

case due to the fibro, I'm not sure - is that I'm recruiting other

muscle groups. Which I don't know if they always check with a second

sensor while you're hooked up to the vaginal probe. But in my case -

and it took _months_ to figure this out - I wasn't recruiting the

abdominals, like the tend to assume if they check a second muscle

group, but the gluteal muscles. Once I stopped moving (at all) during

sex, and practiced separating muscle contracations between the two

groups,I saw immediate improvement. Not a cure, but at least as much

improvement as the inital learning to relax the pelvic floor muscles

did, and more improvement than the estrogen cream and atarax together

did. Just thought I'd write in to see if you'd been checked for

tightness and recruiting in nearby muscle groups that could be

continuing the problem. :-)

> Hi,

>

> I'm new to this group and your story sounds familiar. I was 17

> when I realized I had a problem..went to many doctors over the

> years. Been tested for everything under the sun with no negative

> results, several biopsies, been told there's nothing wrong with

> me and also been told I should see a psychiatrist. I was even

> told in 1988 that it could be HIV!!! Scared the s@@t out of

> me?got tested, of course?negative. At 45 I finally found the

> Vulvar Pain Foundation's (VPF) website after extensive research

> of my own. I figured if I was ever going to get better I had to find

> the answer myself. There I found Dr Willems and other women

> who had the same problem. What a relief it was to know I wasn't

> crazy or the only one with this debilitating disease.

>

> I've been seeing Dr Willems for 1.5 years who diagnosed vulvar

> vestibulitis and am improving steadily. It's a slow process and

> because I also have fibromyalgia, Dr Willems tells me I won't be

> completely well until the fibro is under control. I go to Dr St

> Amand for fibro treatment and am on guaifenesen. I have also

> improved and don't hurt as much anymore. I also did some

> biofeedback and that helped me to relax my muscles. I don't

> have ovary/kidney pain so can't help you there.

>

> Sex is still painful initially, but not nearly as bad as it has

been. I

> use Astroglide (like it better than KY) and it helps . I'm lucky to

> have a boyfriend that understands/believes I have a problem.

> That has not always been the case and relationships have been

> terminated because the guy couldn't handle it. Tells me he

> wasn't the right guy?.so I/you must move on.

>

> Check out the VPF website. The newsletters they publish are

> also filled with a lot of useful information and compassionate

> stories from women who are recovering. I'm not sure where you

> live, but let us know and someone on this group will probably be

> able to recommend a doctor.

>

> Keep in touch,

> Janet

>

>

> P.S. I'm not a doctor, but would not want anyone to consider

> surgery. I've included three paragraphs from the VPF's website

> that I find particularly interesting. Hopefully women out there will

> read this and go for a second opinion. Seems like some

> doctors don't read their history.

> __________________________________________________

> http://www.vulvarpainfoundation.org/effective_treatment.htm

>

> Excerpt from " Effective Nonsurgical Treatments for Vulvar Pain "

>

> Vulvar pain is not new. (The vulva is the external genital skin of

> women.) Over 100 years ago, pioneers in gynecology described

> it as " excessive sensitivity of the nerves supplying the mucus

> membrane. " They warned that surgery would not cure it.

>

> " The sensitive tissue has been dissected off and relief

> obtained for a time, the hyperesthesia returning, however, as

> before the operation. " ? Dr. A. J. C. Skene, Treatise on the

> Diseases of Women, 1889.

>

> " The vulvectomy did not help. The next month it (pain, itching,

> and burning during intercourse for 25 years) all came back. " ?

> Letter to The Vulvar Pain Foundation, 1997.

> __________________________________________________

> > Hi all,

> > I have pain in my vulvar vagina area, since the age of 17 yo. I

> am

> > wondering if I will be like this for hte rest of my life. I am now

> > 37. I've been given everything from anitbiotics to yeast cream.

> > Nothing is helping up to this point except tylenol and ky jelly to

> > add moisture. This affects my relationship to a point to where

> > intimate relations is painful afterwards. This is with mye24/7

> and my

> > ob=gyn doctor tells me she can't see anything on tests or

> exams that

> > indicate any type of disease. It is very frustrating that I have a 1

> > inch chart at the clinic on this alone. I also have ovary and

> kidney

> > pain as well with no answers from the doctor's. I have

> experience

> > discomfort from the pain which causes tightness in my back,

> vagina,

> > and tummy and is so uncomfortable it rules my daily life.

> > If there is someone like me please respond.

[Guest guest]

Hi and welcome,

You've come to the right place. This was the first group I found last

December, and it was a lifesaver for me. I learned about vulvadynia

and all sorts of other things. I eventually was diagnosed with vulvar

vestibulitis, vulvadynia, interstitial cystitis, endometriosis, and

vaginismus. Many things can cause the " ovary " pain and other pelvic

pain. Tense muscles from fighting against the vulvar pain can pull

muscles across your hips and ovaries...endo can also cause ovary

pain...interstitial cystitis can cause all sorts of referred pelvic

pain. There is tons of new info out there on these illnesses. The

Vulvar Pain Foundation is a great place to start. I've read Screaming

to be Heard by Dr. Vliet, The " V " Book by Dr.

, The Endometriosis Sourcebook by Lou Ballweg and the Endo

Association, and more. They all were very helpful. Many great

resources are available thru this list--check the links section on

this list. Best wishes to you. You are not the only one, and

whatever is causing your pain is treatable! Happy Holidays!

Hugs,

Meg

[Guest guest]

hi

i also have liwer back and pelvic pain. i have been suffering for 10 years

now. have you tried physical therapy?

Anja

Vulvar/lower vaginal pain along with lower pelvic pain

> Hi all,

> I have pain in my vulvar vagina area, since the age of 17 yo. I am

> wondering if I will be like this for hte rest of my life. I am now

> 37. I've been given everything from anitbiotics to yeast cream.

> Nothing is helping up to this point except tylenol and ky jelly to

> add moisture. This affects my relationship to a point to where

> intimate relations is painful afterwards. This is with mye24/7 and my

> ob=gyn doctor tells me she can't see anything on tests or exams that

> indicate any type of disease. It is very frustrating that I have a 1

> inch chart at the clinic on this alone. I also have ovary and kidney

> pain as well with no answers from the doctor's. I have experience

> discomfort from the pain which causes tightness in my back, vagina,

> and tummy and is so uncomfortable it rules my daily life.

> If there is someone like me please respond.

>

>

> *****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

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> List owner: VulvarDisorders-owner

>

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[Guest guest]

Hi!

I haven't requested that to be done, but I've

noticed that only very injured people are signed

up for that in our clinic. My MD never suggested

that at all. But, I take yoga classes which

seems to help. Each night I take 150 mg. of

tylenol. I do stretches in bed and also do much

of the stomach crunches to release the tension of

holding in that pain. What do you take for pain?

and how do you cope? I also take lorazapam to

help me with the pain as well. 1 mg. per day.

-gwen

--- Anja Risovic

wrote:

> hi

>

> i also have liwer back and pelvic pain. i have

> been suffering for 10 years

> now. have you tried physical therapy?

>

>

> Anja

[Guest guest]

Beleive it or not nothing. Actually i am seeing a chiro who is trying to

see if my back is giving me the pain. i think it is just all the tense

musces from this vulvar pain. Anyway i started taking magnesium is seems to

help for now.

Anja

Re: Vulvar/lower vaginal pain along with lower pelvic pain

> Hi!

> I haven't requested that to be done, but I've

> noticed that only very injured people are signed

> up for that in our clinic. My MD never suggested

> that at all. But, I take yoga classes which

> seems to help. Each night I take 150 mg. of

> tylenol. I do stretches in bed and also do much

> of the stomach crunches to release the tension of

> holding in that pain. What do you take for pain?

> and how do you cope? I also take lorazapam to

> help me with the pain as well. 1 mg. per day.

> -gwen

> --- Anja Risovic

> wrote:

> > hi

> >

> > i also have liwer back and pelvic pain. i have

> > been suffering for 10 years

> > now. have you tried physical therapy?

> >

> >

> > Anja

>

>

> *****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

>

> *****