Re: Newbie has questions

December 14, 2007

Hello and welcome to the group Ivy! I was diagnosed with VVS a couple of years ago and these are my symptoms: - BAD contact pain (no intercourse possible) - burning when urinating or when doing nothing - itching This is what doctor's tried (and they are also some of the most common treatments): - Topical lotions (ie. Estrace) - Anti-depressants - PT - Biofeedback Therapy - low oxalate diet Unfortunately these treatments were not successful for me which is why I opted for surgery - a vestibulectomy that will remove some of my skin from the vestibule as research shows that VVS has to do with the nerve endings in this area. But the thing with VVS is that there is not one treatment that works for everybody -

so trial and error AND NOT GIVING UP HOPE is the best way to go I think. And I know how it feels when you don't want to change your OBGYN but have to, I was in the same situation. For me it was a good thing as I now found a urogynecologist who really knows about VVS - sometimes change can be good! So hang in there, ask any questions you may have and DON'T GIVE UP HOPE - one day we will all be better! Kathy :)Ivy wrote: Hi everyone- I'm new here, my name is Ivy, I'm 47, married, originally from NY and have lived in AZ for 17 years or so. I had a hysterectomy (complete) at the age of 24 due to adhesions. I've always had a problem with what I thought were yeast infections and cramps. I was recently diagnosed with vulvar vestibulitis and possibly lichen sclerosis. (She hasn't taken a biopsy yet because I'm scared to do it). My gyno put me on some cortisone vaginal suppositories over a month ago. The first week I used them daily, then she told me to go to every other day. At first it seemed to help, but then "whatever this is" came back and now nothing's helping. I saw the gyno again last week for the itching, cramping and irritation

and I also had another yeast infection then too. She gave me diflucan and the next day I had the worst abdominal cramps I've had in years. It seemed to subside for a couple of days and now it's back again and I took another diflucan today and I'm cramping again. I'm so tired of hurting and itching and cramping and so tired of not getting any relief. On top of it, my gyno no longer takes my insurance and I tried another gyno recently and she was horrible, I literally felt as if I'd been raped and she told me there was nothing wrong with me. Worst experience of my life (and I've had some bad ones...yes, I did report her). So now I don't know what to do anymore. I'm still on the cortisone suppositories and I can't afford to keep running back to the gyno once a week and pay out of pocket. I see my PCP next week so I'll ask for another gyno referral but I hate to leave mine, I've been with her 10 years and I adore her and her staff. So...I guess my questions are: 1) What does vestibulitis feel like and how do I know I have it? 2) Does it ever go away?3) Is there anything naturopathic I can do to help myself? 4) Is cramping normal for having this? I'm sure I'll have a ton more questions as time goes on so I guess that's it for now. Thank you for having me here. I'm very frustrated, scared and angry because of the v.v. Hugs- Ivy

Never miss a thing. Make Yahoo your homepage.

December 14, 2007

Hi Kathy-

It's nice to meet you. Thank you for sharing your experience although I'm sorry you have it too.

I have the same symptoms...bad contact pain (no intercourse possible here either), also burning all the time and itching (drives me up the wall).

I can't take anti-depressants (I'm allergic to them) but I'll ask my doctor about the Estrace. I also go to a pain clinic for something unrelated and I know the girl who works on me also does biofeedback so I'll ask her about that, thanks for the suggestion.

My doctor did mention that if the cortisone doesn't work that the surgery would really be the only other thing that might help. I'm very worried about that. How does that affect your vagina in terms of intercourse for the future etc? How much do they remove? Did it help you?

Does anyone else get the rectal itching and cramping in the abdomen too?

It's all so new to me and pretty scary.

Oh, I also have interstitial cystitis which I was diagnosed with this year. Does anyone else have that too? I hear that and V.V. Go hand in hand.

Anyway, thank you again Kathy. I appreciate your help!

Happy pain free holidays!

Hugs-

Ivy

-- Re: Newbie has questions

Hello and welcome to the group Ivy!

I was diagnosed with VVS a couple of years ago and these are my symptoms:

- BAD contact pain (no intercourse possible)

- burning when urinating or when doing nothing

- itching

This is what doctor's tried (and they are also some of the most common treatments):

- Topical lotions (ie. Estrace)

- Anti-depressants

- PT

- Biofeedback Therapy

- low oxalate diet

Unfortunately these treatments were not successful for me which is why I opted for surgery - a vestibulectomy that will remove some of my skin from the vestibule as research shows that VVS has to do with the nerve endings in this area.

But the thing with VVS is that there is not one treatment that works for everybody - so trial and error AND NOT GIVING UP HOPE is the best way to go I think.

And I know how it feels when you don't want to change your OBGYN but have to, I was in the same situation. For me it was a good thing as I now found a urogynecologist who really knows about VVS - sometimes change can be good!

So hang in there, ask any questions you may have and DON'T GIVE UP HOPE - one day we will all be better!

Kathy :)Ivy wrote:

Hi everyone-

I'm new here, my name is Ivy, I'm 47, married, originally from NY and have lived in AZ for 17 years or so.

I had a hysterectomy (complete) at the age of 24 due to adhesions.

I've always had a problem with what I thought were yeast infections and cramps. I was recently diagnosed with vulvar vestibulitis and possibly lichen sclerosis. (She hasn't taken a biopsy yet because I'm scared to do it). My gyno put me on some cortisone vaginal suppositories over a month ago. The first week I used them daily, then she told me to go to every other day. At first it seemed to help, but then "whatever this is" came back and now nothing's helping. I saw the gyno again last week for the itching, cramping and irritation and I also had another yeast infection then too. She gave me diflucan and the next day I had the worst abdominal cramps I've had in years. It seemed to subside for a couple of days and now it's back again and I took another diflucan today and I'm cramping again.

I'm so tired of hurting and itching and cramping and so tired of not getting any relief. On top of it, my gyno no longer takes my insurance and I tried another gyno recently and she was horrible, I literally felt as if I'd been raped and she told me there was nothing wrong with me. Worst experience of my life (and I've had some bad ones...yes, I did report her).

So now I don't know what to do anymore. I'm still on the cortisone suppositories and I can't afford to keep running back to the gyno once a week and pay out of pocket. I see my PCP next week so I'll ask for another gyno referral but I hate to leave mine, I've been with her 10 years and I adore her and her staff.

So...I guess my questions are:

1) What does vestibulitis feel like and how do I know I have it?

2) Does it ever go away?3) Is there anything naturopathic I can do to help myself?

4) Is cramping normal for having this?

I'm sure I'll have a ton more questions as time goes on so I guess that's it for now.

Thank you for having me here. I'm very frustrated, scared and angry because of the v.v.

Hugs-

Ivy

Never miss a thing. Make Yahoo your homepage.

December 14, 2007

Hi Ivy,

I am sorry you are going through this, I completely understand.

I too have similar symptoms, including the urinary ones. I

sometimes don't know which is worse!

Something about your intro note struck me. You had a hysterectomy a

long time ago - have you been on hormone replacement therapy in the

past, or now? Some doctors think this VVS stuff AND cystitis is

related to low levels of estrogen which can damage the sensitive

skin in the area.

If you aren't on hormonal therapy now, perhaps mention it to your

new doctor. Also, i see your in AZ. There is a medical clinic in

Tucson that specializes in hormonal therapies for the problems you

are having - Dr Vliet at http://www.herplace.com

Good luck Ivy. While this VVS/Vulvodynia thing is so hard to treat,

many, MANY women get better with time.

Best,Emma

> Hi everyone-

>

> I'm new here, my name is Ivy, I'm 47, married, originally from NY

and have

> lived in AZ for 17 years or so.

> I had a hysterectomy (complete) at the age of 24 due to adhesions.

>

> I've always had a problem with what I thought were yeast

infections and

> cramps. I was recently diagnosed with vulvar vestibulitis and

possibly

> lichen sclerosis. (She hasn't taken a biopsy yet because I'm

scared to do

> it). My gyno put me on some cortisone vaginal suppositories over a

month ago

> The first week I used them daily, then she told me to go to every

other day

> At first it seemed to help, but then " whatever this is " came back

and now

> nothing's helping. I saw the gyno again last week for the itching,

cramping

> and irritation and I also had another yeast infection then too.

She gave me

> diflucan and the next day I had the worst abdominal cramps I've

had in years

> It seemed to subside for a couple of days and now it's back again

and I

> took another diflucan today and I'm cramping again.

> I'm so tired of hurting and itching and cramping and so tired of

not getting

> any relief. On top of it, my gyno no longer takes my insurance and

I tried

> another gyno recently and she was horrible, I literally felt as if

I'd been

> raped and she told me there was nothing wrong with me. Worst

experience of

> my life (and I've had some bad ones...yes, I did report her).

> So now I don't know what to do anymore. I'm still on the cortisone

> suppositories and I can't afford to keep running back to the gyno

once a

> week and pay out of pocket. I see my PCP next week so I'll ask for

another

> gyno referral but I hate to leave mine, I've been with her 10

years and I

> adore her and her staff.

>

> So...I guess my questions are:

> 1) What does vestibulitis feel like and how do I know I have it?

> 2) Does it ever go away?

> 3) Is there anything naturopathic I can do to help myself?

> 4) Is cramping normal for having this?

>

> I'm sure I'll have a ton more questions as time goes on so I guess

that's it

> for now.

> Thank you for having me here. I'm very frustrated, scared and

angry because

> of the v.v.

> Hugs-

> Ivy

>

> Never miss a thing. Make Yahoo your homepage.

>

December 14, 2007

Google symptoms for vulvodynia, or better yet go to www.nva.org to

find a list of symptoms and treatments. Ongoing pain is vulvodynia

while typically contact pain is vestibulitis. Physical therapy got

rid of my vestibulitis and now I'm working on finishing off the

vulvodynia pain with a combination of pt and I've been battling

recurrent infections. It can go away but I suggest you find a doc

who is experienced in treating this. The NVA can give you a list of

docs in your area.

Lindsey

>

> Hi everyone-

>

> I'm new here, my name is Ivy, I'm 47, married, originally from NY

and have

> lived in AZ for 17 years or so.

> I had a hysterectomy (complete) at the age of 24 due to adhesions.

>

> I've always had a problem with what I thought were yeast infections

and

> cramps. I was recently diagnosed with vulvar vestibulitis and

possibly

> lichen sclerosis. (She hasn't taken a biopsy yet because I'm scared

to do

> it). My gyno put me on some cortisone vaginal suppositories over a

month ago

> The first week I used them daily, then she told me to go to every

other day

> At first it seemed to help, but then " whatever this is " came back

and now

> nothing's helping. I saw the gyno again last week for the itching,

cramping

> and irritation and I also had another yeast infection then too. She

gave me

> diflucan and the next day I had the worst abdominal cramps I've had

in years

> It seemed to subside for a couple of days and now it's back again

and I

> took another diflucan today and I'm cramping again.

> I'm so tired of hurting and itching and cramping and so tired of

not getting

> any relief. On top of it, my gyno no longer takes my insurance and

I tried

> another gyno recently and she was horrible, I literally felt as if

I'd been

> raped and she told me there was nothing wrong with me. Worst

experience of

> my life (and I've had some bad ones...yes, I did report her).

> So now I don't know what to do anymore. I'm still on the cortisone

> suppositories and I can't afford to keep running back to the gyno

once a

> week and pay out of pocket. I see my PCP next week so I'll ask for

another

> gyno referral but I hate to leave mine, I've been with her 10 years

and I

> adore her and her staff.

>

> So...I guess my questions are:

> 1) What does vestibulitis feel like and how do I know I have it?

> 2) Does it ever go away?

> 3) Is there anything naturopathic I can do to help myself?

> 4) Is cramping normal for having this?

>

> I'm sure I'll have a ton more questions as time goes on so I guess

that's it

> for now.

> Thank you for having me here. I'm very frustrated, scared and angry

because

> of the v.v.

> Hugs-

> Ivy

>

December 14, 2007

Google symptoms for vulvodynia, or better yet go to www.nva.org to

find a list of symptoms and treatments. Ongoing pain is vulvodynia

while typically contact pain is vestibulitis. Physical therapy got

rid of my vestibulitis and now I'm working on finishing off the

vulvodynia pain with a combination of pt and I've been battling

recurrent infections. It can go away but I suggest you find a doc

who is experienced in treating this. The NVA can give you a list of

docs in your area.

Lindsey

>

> Hi everyone-

>

> I'm new here, my name is Ivy, I'm 47, married, originally from NY

and have

> lived in AZ for 17 years or so.

> I had a hysterectomy (complete) at the age of 24 due to adhesions.

>

> I've always had a problem with what I thought were yeast infections

and

> cramps. I was recently diagnosed with vulvar vestibulitis and

possibly

> lichen sclerosis. (She hasn't taken a biopsy yet because I'm scared

to do

> it). My gyno put me on some cortisone vaginal suppositories over a

month ago

> The first week I used them daily, then she told me to go to every

other day

> At first it seemed to help, but then " whatever this is " came back

and now

> nothing's helping. I saw the gyno again last week for the itching,

cramping

> and irritation and I also had another yeast infection then too. She

gave me

> diflucan and the next day I had the worst abdominal cramps I've had

in years

> It seemed to subside for a couple of days and now it's back again

and I

> took another diflucan today and I'm cramping again.

> I'm so tired of hurting and itching and cramping and so tired of

not getting

> any relief. On top of it, my gyno no longer takes my insurance and

I tried

> another gyno recently and she was horrible, I literally felt as if

I'd been

> raped and she told me there was nothing wrong with me. Worst

experience of

> my life (and I've had some bad ones...yes, I did report her).

> So now I don't know what to do anymore. I'm still on the cortisone

> suppositories and I can't afford to keep running back to the gyno

once a

> week and pay out of pocket. I see my PCP next week so I'll ask for

another

> gyno referral but I hate to leave mine, I've been with her 10 years

and I

> adore her and her staff.

>

> So...I guess my questions are:

> 1) What does vestibulitis feel like and how do I know I have it?

> 2) Does it ever go away?

> 3) Is there anything naturopathic I can do to help myself?

> 4) Is cramping normal for having this?

>

> I'm sure I'll have a ton more questions as time goes on so I guess

that's it

> for now.

> Thank you for having me here. I'm very frustrated, scared and angry

because

> of the v.v.

> Hugs-

> Ivy

>

December 14, 2007

Google symptoms for vulvodynia, or better yet go to www.nva.org to

find a list of symptoms and treatments. Ongoing pain is vulvodynia

while typically contact pain is vestibulitis. Physical therapy got

rid of my vestibulitis and now I'm working on finishing off the

vulvodynia pain with a combination of pt and I've been battling

recurrent infections. It can go away but I suggest you find a doc

who is experienced in treating this. The NVA can give you a list of

docs in your area.

Lindsey

>

> Hi everyone-

>

> I'm new here, my name is Ivy, I'm 47, married, originally from NY

and have

> lived in AZ for 17 years or so.

> I had a hysterectomy (complete) at the age of 24 due to adhesions.

>

> I've always had a problem with what I thought were yeast infections

and

> cramps. I was recently diagnosed with vulvar vestibulitis and

possibly

> lichen sclerosis. (She hasn't taken a biopsy yet because I'm scared

to do

> it). My gyno put me on some cortisone vaginal suppositories over a

month ago

> The first week I used them daily, then she told me to go to every

other day

> At first it seemed to help, but then " whatever this is " came back

and now

> nothing's helping. I saw the gyno again last week for the itching,

cramping

> and irritation and I also had another yeast infection then too. She

gave me

> diflucan and the next day I had the worst abdominal cramps I've had

in years

> It seemed to subside for a couple of days and now it's back again

and I

> took another diflucan today and I'm cramping again.

> I'm so tired of hurting and itching and cramping and so tired of

not getting

> any relief. On top of it, my gyno no longer takes my insurance and

I tried

> another gyno recently and she was horrible, I literally felt as if

I'd been

> raped and she told me there was nothing wrong with me. Worst

experience of

> my life (and I've had some bad ones...yes, I did report her).

> So now I don't know what to do anymore. I'm still on the cortisone

> suppositories and I can't afford to keep running back to the gyno

once a

> week and pay out of pocket. I see my PCP next week so I'll ask for

another

> gyno referral but I hate to leave mine, I've been with her 10 years

and I

> adore her and her staff.

>

> So...I guess my questions are:

> 1) What does vestibulitis feel like and how do I know I have it?

> 2) Does it ever go away?

> 3) Is there anything naturopathic I can do to help myself?

> 4) Is cramping normal for having this?

>

> I'm sure I'll have a ton more questions as time goes on so I guess

that's it

> for now.

> Thank you for having me here. I'm very frustrated, scared and angry

because

> of the v.v.

> Hugs-

> Ivy

>

December 14, 2007

Thanks Lindsey!

-- Re: Newbie has questions

Google symptoms for vulvodynia, or better yet go to www.nva.org to

find a list of symptoms and treatments. Ongoing pain is vulvodynia

while typically contact pain is vestibulitis. Physical therapy got

rid of my vestibulitis and now I'm working on finishing off the

vulvodynia pain with a combination of pt and I've been battling

recurrent infections. It can go away but I suggest you find a doc

who is experienced in treating this. The NVA can give you a list of

docs in your area.

Lindsey

>

> Hi everyone-

>

> I'm new here, my name is Ivy, I'm 47, married, originally from NY

and have

> lived in AZ for 17 years or so.

> I had a hysterectomy (complete) at the age of 24 due to adhesions.

>

> I've always had a problem with what I thought were yeast infections

and

> cramps. I was recently diagnosed with vulvar vestibulitis and

possibly

> lichen sclerosis. (She hasn't taken a biopsy yet because I'm scared

to do

> it). My gyno put me on some cortisone vaginal suppositories over a

month ago

> The first week I used them daily, then she told me to go to every

other day

> At first it seemed to help, but then "whatever this is" came back

and now

> nothing's helping. I saw the gyno again last week for the itching,

cramping

> and irritation and I also had another yeast infection then too. She

gave me

> diflucan and the next day I had the worst abdominal cramps I've had

in years

> It seemed to subside for a couple of days and now it's back again

and I

> took another diflucan today and I'm cramping again.

> I'm so tired of hurting and itching and cramping and so tired of

not getting

> any relief. On top of it, my gyno no longer takes my insurance and

I tried

> another gyno recently and she was horrible, I literally felt as if

I'd been

> raped and she told me there was nothing wrong with me. Worst

experience of

> my life (and I've had some bad ones...yes, I did report her).

> So now I don't know what to do anymore. I'm still on the cortisone

> suppositories and I can't afford to keep running back to the gyno

once a

> week and pay out of pocket. I see my PCP next week so I'll ask for

another

> gyno referral but I hate to leave mine, I've been with her 10 years

and I

> adore her and her staff.

>

> So...I guess my questions are:

> 1) What does vestibulitis feel like and how do I know I have it?

> 2) Does it ever go away?

> 3) Is there anything naturopathic I can do to help myself?

> 4) Is cramping normal for having this?

>

> I'm sure I'll have a ton more questions as time goes on so I guess

that's it

> for now.

> Thank you for having me here. I'm very frustrated, scared and angry

because

> of the v.v.

> Hugs-

> Ivy

>

**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST,

Thanks for your cooperation! **

***

December 14, 2007

I went there and you have to join and pay $45 for a list of doctors who treat it. I can't afford to join (I live on disability) and I don't think it's right that they charge for that. Oh well.....

-- Re: Newbie has questions

Google symptoms for vulvodynia, or better yet go to www.nva.org to

find a list of symptoms and treatments. Ongoing pain is vulvodynia

while typically contact pain is vestibulitis. Physical therapy got

rid of my vestibulitis and now I'm working on finishing off the

vulvodynia pain with a combination of pt and I've been battling

recurrent infections. It can go away but I suggest you find a doc

who is experienced in treating this. The NVA can give you a list of

docs in your area.

Lindsey

>

> Hi everyone-

>

> I'm new here, my name is Ivy, I'm 47, married, originally from NY

and have

> lived in AZ for 17 years or so.

> I had a hysterectomy (complete) at the age of 24 due to adhesions.

>

> I've always had a problem with what I thought were yeast infections

and

> cramps. I was recently diagnosed with vulvar vestibulitis and

possibly

> lichen sclerosis. (She hasn't taken a biopsy yet because I'm scared

to do

> it). My gyno put me on some cortisone vaginal suppositories over a

month ago

> The first week I used them daily, then she told me to go to every

other day

> At first it seemed to help, but then "whatever this is" came back

and now

> nothing's helping. I saw the gyno again last week for the itching,

cramping

> and irritation and I also had another yeast infection then too. She

gave me

> diflucan and the next day I had the worst abdominal cramps I've had

in years

> It seemed to subside for a couple of days and now it's back again

and I

> took another diflucan today and I'm cramping again.

> I'm so tired of hurting and itching and cramping and so tired of

not getting

> any relief. On top of it, my gyno no longer takes my insurance and

I tried

> another gyno recently and she was horrible, I literally felt as if

I'd been

> raped and she told me there was nothing wrong with me. Worst

experience of

> my life (and I've had some bad ones...yes, I did report her).

> So now I don't know what to do anymore. I'm still on the cortisone

> suppositories and I can't afford to keep running back to the gyno

once a

> week and pay out of pocket. I see my PCP next week so I'll ask for

another

> gyno referral but I hate to leave mine, I've been with her 10 years

and I

> adore her and her staff.

>

> So...I guess my questions are:

> 1) What does vestibulitis feel like and how do I know I have it?

> 2) Does it ever go away?

> 3) Is there anything naturopathic I can do to help myself?

> 4) Is cramping normal for having this?

>

> I'm sure I'll have a ton more questions as time goes on so I guess

that's it

> for now.

> Thank you for having me here. I'm very frustrated, scared and angry

because

> of the v.v.

> Hugs-

> Ivy

>

**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST,

Thanks for your cooperation! **

***

December 14, 2007

I went there and you have to join and pay $45 for a list of doctors who treat it. I can't afford to join (I live on disability) and I don't think it's right that they charge for that. Oh well.....

-- Re: Newbie has questions

Google symptoms for vulvodynia, or better yet go to www.nva.org to

find a list of symptoms and treatments. Ongoing pain is vulvodynia

while typically contact pain is vestibulitis. Physical therapy got

rid of my vestibulitis and now I'm working on finishing off the

vulvodynia pain with a combination of pt and I've been battling

recurrent infections. It can go away but I suggest you find a doc

who is experienced in treating this. The NVA can give you a list of

docs in your area.

Lindsey

>

> Hi everyone-

>

> I'm new here, my name is Ivy, I'm 47, married, originally from NY

and have

> lived in AZ for 17 years or so.

> I had a hysterectomy (complete) at the age of 24 due to adhesions.

>

> I've always had a problem with what I thought were yeast infections

and

> cramps. I was recently diagnosed with vulvar vestibulitis and

possibly

> lichen sclerosis. (She hasn't taken a biopsy yet because I'm scared

to do

> it). My gyno put me on some cortisone vaginal suppositories over a

month ago

> The first week I used them daily, then she told me to go to every

other day

> At first it seemed to help, but then "whatever this is" came back

and now

> nothing's helping. I saw the gyno again last week for the itching,

cramping

> and irritation and I also had another yeast infection then too. She

gave me

> diflucan and the next day I had the worst abdominal cramps I've had

in years

> It seemed to subside for a couple of days and now it's back again

and I

> took another diflucan today and I'm cramping again.

> I'm so tired of hurting and itching and cramping and so tired of

not getting

> any relief. On top of it, my gyno no longer takes my insurance and

I tried

> another gyno recently and she was horrible, I literally felt as if

I'd been

> raped and she told me there was nothing wrong with me. Worst

experience of

> my life (and I've had some bad ones...yes, I did report her).

> So now I don't know what to do anymore. I'm still on the cortisone

> suppositories and I can't afford to keep running back to the gyno

once a

> week and pay out of pocket. I see my PCP next week so I'll ask for

another

> gyno referral but I hate to leave mine, I've been with her 10 years

and I

> adore her and her staff.

>

> So...I guess my questions are:

> 1) What does vestibulitis feel like and how do I know I have it?

> 2) Does it ever go away?

> 3) Is there anything naturopathic I can do to help myself?

> 4) Is cramping normal for having this?

>

> I'm sure I'll have a ton more questions as time goes on so I guess

that's it

> for now.

> Thank you for having me here. I'm very frustrated, scared and angry

because

> of the v.v.

> Hugs-

> Ivy

>

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December 14, 2007

Ivy,

I would seriously recommend seeing Dr. Vliet at HER place clinic, since

you are fortunate enough to be in traveling distance of it.

Also, there are SOOOO many things to try before surgery. Physical

therapy with a good pelvic floor therapist who does skin rolling

methods can do wonders for VV and IC - my PT has essentially cured my

VV, along with estrace and dietary changes. She has lots of IC patients

and they get better too!

Melinda

December 14, 2007

Ivy,

I would seriously recommend seeing Dr. Vliet at HER place clinic, since

you are fortunate enough to be in traveling distance of it.

Also, there are SOOOO many things to try before surgery. Physical

therapy with a good pelvic floor therapist who does skin rolling

methods can do wonders for VV and IC - my PT has essentially cured my

VV, along with estrace and dietary changes. She has lots of IC patients

and they get better too!

Melinda

December 14, 2007

Ivy,

I would seriously recommend seeing Dr. Vliet at HER place clinic, since

you are fortunate enough to be in traveling distance of it.

Also, there are SOOOO many things to try before surgery. Physical

therapy with a good pelvic floor therapist who does skin rolling

methods can do wonders for VV and IC - my PT has essentially cured my

VV, along with estrace and dietary changes. She has lots of IC patients

and they get better too!

Melinda

December 14, 2007

Ivy,

E-mail or call them and let them know of your predicament. I think

that they have given that list to people in the past who are on a

fixed or low income. I know it's frustrating...but the NVA is the

ONLY organization out there trying to organize research and education

about this problem, and they have to drum up funds one way or

another. I think it's important to see a good doc who knows what

they are doing with this problem from the very beginning so you don't

waste your time. Dr. Vliet might also be a good resource, or you

could google " vulvodynia " and " Arizona " together and see what you

come up with. This program in Sedona:

http://www.myofascialrelease.com/clinics/clin_sedona.asp

does physical therapy (I don't know anything about this clinic other

than I saw their advertisement when I was in Phoenix visiting family

a few weeks ago). Another way to raise money for the NVA is to go to

www.goodsearch.com and plug in NVA into the " who do you goodsearch

for? " and use that search engine for your searches, proceeds go to

the NVA.

Lindsey

> >

> > Hi everyone-

> >

> > I'm new here, my name is Ivy, I'm 47, married, originally from NY

> and have

> > lived in AZ for 17 years or so.

> > I had a hysterectomy (complete) at the age of 24 due to adhesions.

> >

> > I've always had a problem with what I thought were yeast

infections

> and

> > cramps. I was recently diagnosed with vulvar vestibulitis and

> possibly

> > lichen sclerosis. (She hasn't taken a biopsy yet because I'm

scared

> to do

> > it). My gyno put me on some cortisone vaginal suppositories over a

> month ago

> > The first week I used them daily, then she told me to go to every

> other day

> > At first it seemed to help, but then " whatever this is " came back

> and now

> > nothing's helping. I saw the gyno again last week for the itching,

> cramping

> > and irritation and I also had another yeast infection then too.

She

> gave me

> > diflucan and the next day I had the worst abdominal cramps I've

had

> in years

> > It seemed to subside for a couple of days and now it's back again

> and I

> > took another diflucan today and I'm cramping again.

> > I'm so tired of hurting and itching and cramping and so tired of

> not getting

> > any relief. On top of it, my gyno no longer takes my insurance and

> I tried

> > another gyno recently and she was horrible, I literally felt as if

> I'd been

> > raped and she told me there was nothing wrong with me. Worst

> experience of

> > my life (and I've had some bad ones...yes, I did report her).

> > So now I don't know what to do anymore. I'm still on the cortisone

> > suppositories and I can't afford to keep running back to the gyno

> once a

> > week and pay out of pocket. I see my PCP next week so I'll ask for

> another

> > gyno referral but I hate to leave mine, I've been with her 10

years

> and I

> > adore her and her staff.

> >

> > So...I guess my questions are:

> > 1) What does vestibulitis feel like and how do I know I have it?

> > 2) Does it ever go away?

> > 3) Is there anything naturopathic I can do to help myself?

> > 4) Is cramping normal for having this?

> >

> > I'm sure I'll have a ton more questions as time goes on so I guess

> that's it

> > for now.

> > Thank you for having me here. I'm very frustrated, scared and

angry

> because

> > of the v.v.

> > Hugs-

> > Ivy

> >

>

> **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST,

> Thanks for your cooperation! **

>

> ***

December 14, 2007

Ok, thanks again Lindsey. I appreciate it.

Sedona is very far away from me, a whole days drive and due to my other health problem post herpetic neuralgia I can't sit up in a car all day unfortunately. I'm not able to travel anymore. Maybe I can find someone down here in the East Valley closer to me.

Thanks Hun.