Re: Vulvodynia?

[Guest guest]

Vulvodynia is different for different women but yes I would say you

have constant pain or discomfort ie irritation sensation, redness,

sometimes itching but there is no infection or a woman might have been

treated for yeast or BV and the infection is gone but the symptoms

continues. Some women have more of a deep muscle ache/nerve

involvement or a mix of both. VV is a diagnosis of exclusion meaning

everthing else was ruled out so that is the category continued vaginal

pain falls in. Doctors usually use a Q tip test to see how sensitive

the areas are around the vaginal opening which many VV women have.

Since many GYNs have limited experience with VV it is hard for them to

know the variety of nuances VV can take. If you think you might have

it, it might be better to see a specialist. You can get a list of

Doctors in your area from the National Vulvodynia Association. You

don't have to join, they will help you.

As far as astoglide, I use a similar product if I feel dry. If you are

having trouble with dryness that might be the source of your problem ie

low estrogen, being on BCPs, drying soaps, irritation from clothes

etc.

>

> Does vulvodynia involve alot a pain? Do you experince symptoms like a

infection? I thought I had vulvodynia, but wasn't sure. Plus, I had

three doctors tell me I didn't have vulvodynia. And do any one use

astroglide even when you're not having sexual intercourse.

>

[Guest guest]

Hi, What kind of symptoms do you have? Maybe we can try to help some. There are so many docs out there that are so ignorant when it comes to vulvar pain. It took many years for me to be properly diagnosed. When vulvodynia hit me, I had constant pain. Rawness, irritation and burning. It's just different for each us, though. Some have pain all the time, some only have pain on contact - like wearing fitted jeans or pain with sex or insertion of tampons. Low hormones can cause dryness and pain, especially when going through peri or actual menopause. Many use Emu Oil or Coconut oil for lubrication. Hope this helps...Chelle

[Guest guest]

I was treated with antibotics for BV for nine months, the BV went away but the itching did not. They said I did not have a yeast problem. SO I went to my family doctor and she said I had a rare yeast on my tongue. I brought in the book "The Yeast Connection Handbook" by Crook. Begged her for Nystatin Oral antifungal (the one with NO sugar in it, the straight powder used in compounding pharmacies.) I went on the candida diet, took the nystatin. Did it religiously and after 4 months, the burning and itching was GONE! I am sure I had a rare yeast that did not respond to diflucan. Many of the gyns amazingly do not know about this.

Blueeberri

I haven't been diagnosed. I've seen now 2 Nurse Practitioners, 1 General Practitioner, and 2 Gynecologists. I have been cultured and told repeatedly there is no yeast or bacterial infection present. I was treated for Bacterial Infection with vaginal Metrogel, only the pain and itching never stopped. My symptoms can range from an intense dry feeling to burning pain to itching. It's been about 5 months now. IMHO the Dr.s (far too many of them) don't know a thing!! >> Does vulvodynia involve alot a pain? Do you experince symptoms like a infection? I thought I had vulvodynia, but wasn't sure. Plus, I had three doctors tell me I didn't have vulvodynia. And do any one use astroglide even when you're not having sexual intercourse.> One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now.

[Guest guest]

I haven't been diagnosed. I've seen now 2 Nurse Practitioners, 1

General Practitioner, and 2 Gynecologists. I have been cultured and

told repeatedly there is no yeast or bacterial infection present. I

was treated for Bacterial Infection with vaginal Metrogel, only the

pain and itching never stopped. My symptoms can range from an intense

dry feeling to burning pain to itching. It's been about 5 months now.

IMHO the Dr.s (far too many of them) don't know a thing!!

>

> Does vulvodynia involve alot a pain? Do you experince symptoms like

a infection? I thought I had vulvodynia, but wasn't sure. Plus, I had

three doctors tell me I didn't have vulvodynia. And do any one use

astroglide even when you're not having sexual intercourse.

>

[Guest guest]

Have you tried an antihistamine to reduce the itching? The doctor that I am now seeing told me that I didn't have vulvodynia. She told me that my biopsy results showed that I was experiencing a itching sensation to scratch,(I know this sounds wierd) She that the skin have thickened (chronic inflammation) due to recurrent infections. So for that she prescribed me clobetasol and a antihistamine to take orally. She told me to use astroglide every day, even if I'm not having sexual intercourse. However, the clobetasol and the antihistamine reduces itching. The astroglide just ease the discomfort, but I'm still experiencing burning and irritation.

Subject: Re: Vulvodynia?To: VulvarDisorders Date: Friday, December 26, 2008, 3:51 PM

I haven't been diagnosed. I've seen now 2 Nurse Practitioners, 1 General Practitioner, and 2 Gynecologists. I have been cultured and told repeatedly there is no yeast or bacterial infection present. I was treated for Bacterial Infection with vaginal Metrogel, only the pain and itching never stopped. My symptoms can range from an intense dry feeling to burning pain to itching. It's been about 5 months now. IMHO the Dr.s (far too many of them) don't know a thing!! >> Does vulvodynia involve alot a pain? Do you experince symptoms like a infection? I thought I had vulvodynia, but wasn't sure. Plus, I had three doctors tell me I didn't have vulvodynia. And do any one use astroglide even when you're not having sexual

intercourse.>

[Guest guest]

I have mostly itching, burning, irritation and sometimes a tingling feeling. I rarely have pain. Only when attempting intercourse. I'm kind of confused. My currently gynecologist told me that I didn't have vulvodynia. She went over with me my vulvar biopsy reports and told me that I had chronic inflammation and some big "h" word that meant I was experiencing a itching sensation to scratch due to recurrent infections. She said she want to work on to keep the infections from reccurring, because that is the main problem. She prescribed clobestosol and an antihistamine to take orally. Both are reducing the itching, but not the irritation and burning. I hope to find some answers soon.

Subject: Re: Vulvodynia?To: VulvarDisorders Date: Friday, December 26, 2008, 4:14 AM

Hi, What kind of symptoms do you have? Maybe we can try to help some. There are so many docs out there that are so ignorant when it comes to vulvar pain. It took many years for me to be properly diagnosed. When vulvodynia hit me, I had constant pain. Rawness, irritation and burning. It's just different for each us, though. Some have pain all the time, some only have pain on contact - like wearing fitted jeans or pain with sex or insertion of tampons. Low hormones can cause dryness and pain, especially when going through peri or actual menopause. Many use Emu Oil or Coconut oil for lubrication. Hope this helps...Chelle

[Guest guest]

I am not a doctor. Perhaps you have Acute Vaginitis which is dryness. Estrace Cream will go along way to help if that is what you have. THANK GOD you dont have pain all the time. I know the burning and irritation drives you crazy but that can be worked on ...maybe foods to avoid?? I dont know. get the hormones checked. hugs, ML

I have mostly itching, burning, irritation and sometimes a tingling feeling. I rarely have pain. Only when attempting intercourse. I'm kind of confused. My currently gynecologist told me that I didn't have vulvodynia. She went over with me my vulvar biopsy reports and told me that I had chronic inflammation and some big "h" word that meant I was experiencing a itching sensation to scratch due to recurrent infections. She said she want to work on to keep the infections from reccurring, because that is the main problem. She prescribed clobestosol and an antihistamine to take orally. Both are reducing the itching, but not the irritation and burning. I hope to find some answers soon.---

[Guest guest]

If a woman has yeast, the steriod cream can make it worse. So can estrace. Getting better includes trial and error. Changing my diet and having my hormone levels checked helped me.

Blueeberri

Talking to your dr about using estrace might be a good idea. When I first got VV, i had the muscle/nerve version which elavil helped tremendously. I looked fine vaginally. As the years went by that improved and now I have more of the topical irritation,redness and as I approach menopause my estrogen is dropping. I used estrace every day for 2 wks then 3x/wk after prescribed by my Nurse Pract and it has really helped. BTW, antihistamines are sometime prescribed for VV also. Dr. Ledger in NYC believes that VV is related to an overactive inflammatory response. VV is a frustrating problem because not all the treatments work for all the women. You kinda have to try things one by one and pay close attention to how your body reacts. As I said before, VV is a diagnosis of exclusion. So they have to rule out everything else to determine if that it what you have. It sounds like your doctor does have a treatment plan in mind for you. You might ask her how long she will leave you on the antihistamine/steroid cream to see if it works and what else she might try after. I would also write down the name of what she says she is treating and try to read more about it so you know more. problem>> I am not a doctor. Perhaps you have Acute Vaginitis which is dryness.> Estrace Cream will go along way to help if that is what you have. THANK GOD> you dont have pain all the time. I know the burning and irritation drives> you crazy but that can be worked on ...maybe foods to avoid?? I dont know.> get the hormones checked. hugs, ML> > > > > I have mostly itching, burning, irritation and sometimes a tingling> feeling. I rarely have pain. Only when attempting intercourse. I'm kind of> confused. My currently gynecologist told me that I didn't have vulvodynia.> She went over with me my vulvar biopsy reports and told me that I had> chronic inflammation and some big "h" word that meant I was experiencing a> itching sensation to scratch due to recurrent infections. She said she want> to work on to keep the infections from reccurring, because that is the main> problem. She prescribed clobestosol and an antihistamine to take orally.> Both are reducing the itching, but not the irritation and burning. I hope to> find some answers soon.> > ---> One site keeps you connected to all your email: AOL Mail, Gmail, and Yahoo Mail. Try it now.

[Guest guest]

Talking to your dr about using estrace might be a good idea. When I

first got VV, i had the muscle/nerve version which elavil helped

tremendously. I looked fine vaginally. As the years went by that

improved and now I have more of the topical irritation,redness and as

I approach menopause my estrogen is dropping. I used estrace every

day for 2 wks then 3x/wk after prescribed by my Nurse Pract and it

has really helped.

BTW, antihistamines are sometime prescribed for VV also. Dr. Ledger

in NYC believes that VV is related to an overactive inflammatory

response. VV is a frustrating problem because not all the treatments

work for all the women. You kinda have to try things one by one and

pay close attention to how your body reacts.

As I said before, VV is a diagnosis of exclusion. So they have to

rule out everything else to determine if that it what you have. It

sounds like your doctor does have a treatment plan in mind for you.

You might ask her how long she will leave you on the

antihistamine/steroid cream to see if it works and what else she

might try after. I would also write down the name of what she says

she is treating and try to read more about it so you know more.

problem

>

> I am not a doctor. Perhaps you have Acute Vaginitis which is

dryness.

> Estrace Cream will go along way to help if that is what you have.

THANK GOD

> you dont have pain all the time. I know the burning and irritation

drives

> you crazy but that can be worked on ...maybe foods to avoid?? I

dont know.

> get the hormones checked. hugs, ML

>

>

>

>

> I have mostly itching, burning, irritation and sometimes a

tingling

> feeling. I rarely have pain. Only when attempting intercourse. I'm

kind of

> confused. My currently gynecologist told me that I didn't have

vulvodynia.

> She went over with me my vulvar biopsy reports and told me that I

had

> chronic inflammation and some big " h " word that meant I was

experiencing a

> itching sensation to scratch due to recurrent infections. She said

she want

> to work on to keep the infections from reccurring, because that is

the main

> problem. She prescribed clobestosol and an antihistamine to take

orally.

> Both are reducing the itching, but not the irritation and burning.

I hope to

> find some answers soon.

>

> ---

>

[Guest guest]

I absolutely agree with you about estrace and yeast. I too had that

happen. Balancing everything is really a challenge and it is unique

for everyone depending on how suceptible you are.

> >

> > I am not a doctor. Perhaps you have Acute Vaginitis which is

> dryness.

> > Estrace Cream will go along way to help if that is what you

have.

> THANK GOD

> > you dont have pain all the time. I know the burning and

irritation

> drives

> > you crazy but that can be worked on ...maybe foods to avoid?? I

> dont know.

> > get the hormones checked. hugs, ML

> >

> >

> >

> >

> > I have mostly itching, burning, irritation and sometimes a

> tingling

> > feeling. I rarely have pain. Only when attempting intercourse.

I'm

> kind of

> > confused. My currently gynecologist told me that I didn't have

> vulvodynia.

> > She went over with me my vulvar biopsy reports and told me that

I

> had

> > chronic inflammation and some big " h " word that meant I was

> experiencing a

> > itching sensation to scratch due to recurrent infections. She

said

> she want

> > to work on to keep the infections from reccurring, because that

is

> the main

> > problem. She prescribed clobestosol and an antihistamine to take

> orally.

> > Both are reducing the itching, but not the irritation and

burning.

> I hope to

> > find some answers soon.

> >

> > ---

> >

>

>

>

>

>

> **************One site keeps you connected to all your email: AOL

Mail,

> Gmail, and Yahoo Mail. Try it now.

> (http://www.aol.com/?optin=new-

dp&icid=aolcom40vanity&ncid=emlcntaolcom00000025)

>

[Guest guest]

So you only have pain when attempting intercourse? Did anyone check you for vestibulitis? I actually had a doc check me 4 yrs. ago by doing the q-tip test - he said I didn't have vestibulitis. I went to a specialist this past April and said she I do indeed have localized vestibulitis (and I've had it for 16 yrs.)! Did your doc say you are having a histamine reaction? Histamine is released when there is inflammation and it can cause itching and burning. How often do you use the steroid cream? It can indeed reduce inflammation, but be careful. Most use estrogen cream with the use of steroids. Steroids can thin the skin and make the pain worse (that is why using estrogen cream can help). It protects the skin from thinning. Antihistamines are good, too.

That is first treatment I stumbled up on myself that gave

me any relief from the vulvar pain. If you tell us where you live someone might know of a good doc or specialist. Some women experience problems with recurrent infections and pain due to tight pelvic floor muscles. So...physical therapy can be very beneficial for some, too. Hope this helps...Chelle

[Guest guest]

I'm from Texas, (Dallas) and most gynecologists that I had saw says that it is unlikely that I would find a vulvar specialist, since gynecologist specialize in the female anatomy. So in the other words that is as close I could get to a vulvar specialist. My previous male gynecologist told me that I might have vestibulitis, but I wanted to seek a second opninion because I wasn't sure about vestibulitis. So I am currently seeing another gynecologist who is more familiar with vulvodynia(at least.) She believes I don't have vulvodynia and since I'm not having much pain, except with intercourse she didn't consider vestibulitis being the problem. She didn't really say if I was having a histamine reaction. She told me my vulvar biopsy from my previous gyn. showed "scratching" and chronic inflammation. The antihistamine and the steroid cream does work,

except for the burning. She want me to use the steroid cream for a month in total, 2 weeks, once everyday and for the next 2 weeks, every other day. Will the estrogen cream stop the itching and burning.

Subject: Re: Vulvodynia?To: VulvarDisorders Date: Monday, December 29, 2008, 2:10 AM

So you only have pain when attempting intercourse? Did anyone check you for vestibulitis? I actually had a doc check me 4 yrs. ago by doing the q-tip test - he said I didn't have vestibulitis. I went to a specialist this past April and said she I do indeed have localized vestibulitis (and I've had it for 16 yrs.)! Did your doc say you are having a histamine reaction? Histamine is released when there is inflammation and it can cause itching and burning. How often do you use the steroid cream? It can indeed reduce inflammation, but be careful. Most use estrogen cream with the use of steroids. Steroids can thin the skin and make the pain worse (that is why using estrogen cream can help). It protects the skin from thinning. Antihistamines are good, too. That is first treatment I stumbled up on myself that gave me any relief from the vulvar

pain. If you tell us where you live someone might know of a good doc or specialist. Some women experience problems with recurrent infections and pain due to tight pelvic floor muscles. So...physical therapy can be very beneficial for some, too. Hope this helps...Chelle

[Guest guest]

Dear "Dallas" you did not give your name: I see SPECIALISTS at UT Southwester and have been going for four years there. DRS Andersen and are females and have moved on to other Universities. Nurse Practioner Jane KaszWulf has move on to pursue teaching nurse practioners. At the end of January, I have an appointment with Dr. Dennis Factor who IS supposed to be THE person to see. I was referred to UT Southwestern Dallas by my OBGYN who said that is where the SPECIALISTS are and have improved greatly under the supervision of the above doctors .....SO I do not know who said it was highly unlikely but they tell me at UT that they see lots of us there! ML

When times are good, be happy; but when times are bad, consider:God has made the one as well as the other. Therefore, a mancannot discover anything about his future. http://www.theanimalrescuesite.com/

Re: Vulvodynia?To: VulvarDisorders Date: Monday, December 29, 2008, 2:10 AM

So you only have pain when attempting intercourse? Did anyone check you for vestibulitis? I actually had a doc check me 4 yrs. ago by doing the q-tip test - he said I didn't have vestibulitis. I went to a specialist this past April and said she I do indeed have localized vestibulitis (and I've had it for 16 yrs.)! Did your doc say you are having a histamine reaction? Histamine is released when there is inflammation and it can cause itching and burning. How often do you use the steroid cream? It can indeed reduce inflammation, but be careful. Most use estrogen cream with the use of steroids. Steroids can thin the skin and make the pain worse (that is why using estrogen cream can help). It protects the skin from thinning. Antihistamines are good, too. That is first treatment I stumbled up on myself that gave me any relief from the vulvar pain. If you tell us where you live someone might know of a good doc or specialist. Some women experience problems with recurrent infections and pain due to tight pelvic floor muscles. So...physical therapy can be very beneficial for some, too. Hope this helps...Chelle

[Guest guest]

I just started the Thomsons calendula cream with a tiny bit of estrace (estrogen) cream mixed with it - it has given me alot of relief having been on it for only a week now!

KL

From: Chelle <elliottmag (AT) yahoo (DOT) com>Subject: Re: Vulvodynia?To: VulvarDisorders@ yahoogroups. comDate: Monday, December 29, 2008, 2:10 AM

So you only have pain when attempting intercourse? Did anyone check you for vestibulitis? I actually had a doc check me 4 yrs. ago by doing the q-tip test - he said I didn't have vestibulitis. I went to a specialist this past April and said she I do indeed have localized vestibulitis (and I've had it for 16 yrs.)! Did your doc say you are having a histamine reaction? Histamine is released when there is inflammation and it can cause itching and burning. How often do you use the steroid cream? It can indeed reduce inflammation, but be careful. Most use estrogen cream with the use of steroids. Steroids can thin the skin and make the pain worse (that is why using estrogen cream can help). It protects the skin from thinning. Antihistamines are good, too. That is first treatment I stumbled up on myself that gave me any relief from the vulvar

pain. If you tell us where you live someone might know of a good doc or specialist. Some women experience problems with recurrent infections and pain due to tight pelvic floor muscles. So...physical therapy can be very beneficial for some, too. Hope this helps...Chelle