update

[Guest guest]

I have a question? What is " perneoplasty? "

Also, has anyone had benefit from the testerone (sp?) creme? I had that

burning off of the HVP way back in July and am still in pain. My gyno wanted

me to try that aloing with steroid creme, but I was told by a friend it made

it worse. Comments? Thanks! Lainey

[Guest guest]

Lainey,

It's actually a perineoplasty, I spelled it incorrectly. Anyway, what was

done is the affected area was excised and then the vaginal tissue was

advance to cover the excoriated surgical area. The surgery isn't for

everyone. If you would like more details please feel free to e-maill me.

----------

> From: Lainey9911@...

> To: VulvarDisordersonelist

> Subject: Re: update

> Date: Tuesday, February 02, 1999 8:46 PM

>

> From: Lainey9911@...

>

> I have a question? What is " perneoplasty? "

>

> Also, has anyone had benefit from the testerone (sp?) creme? I had that

> burning off of the HVP way back in July and am still in pain. My gyno

wanted

> me to try that aloing with steroid creme, but I was told by a friend it

made

> it worse. Comments? Thanks! Lainey

>

> ------------------------------------------------------------------------

>

[Guest guest]

CONGRATULATIONS BECKIE!!!!!!!!!

----------

> From: RAL341@...

> To: VulvarDisordersonelist; vulvarpainforum@...

> Subject: update

> Date: Wednesday, February 24, 1999 7:26 AM

>

> From: RAL341@...

>

> Hi Everyone,

> I have not written in a while to give you an update on my surgery. To

refresh

> everyones memory, I had a vestibulectomy on December 15. The first time I

had

> intercourse after the surgery, it hurt! It was not the old pain but more

like

> a stretching type pain. After that, there has been no pain at all! So, I

think

> the surgery worked! I have had intercourse several times with NO

> pain!!!!!!!!!!!!!!!!! I am very excited. (no pun intended!)

>

> Also, I still suffer from chronic pelvic pain. Last week I had a nerve

block

> done and they were able to pinpoint the exact nerve that is damaged. I am

> finally getting some answers! I see my doctor next week and we will

discuss my

> options. I am probably looking at surgery where they will cut the nerve.

The

> only long term affect of that is chronic constipation. I think I can

handle

> that better than the pain!

>

> I just wanted to let everyone know, there is some hope out there. It just

> takes time! This has been a long struggle for me but I am finally getting

some

> answers. Thanks for all of your support through my surgery. It is great

to

> have friends like you!

>

> Beckie

>

> ------------------------------------------------------------------------

> If you like the colors orange and blue, you will like our new web site!

> http://www.onelist.com

> ------------------------------------------------------------------------

>

[Guest guest]

CONGRATULATIONS BECKIE!!!!!!!!!

----------

> From: RAL341@...

> To: VulvarDisordersonelist; vulvarpainforum@...

> Subject: update

> Date: Wednesday, February 24, 1999 7:26 AM

>

> From: RAL341@...

>

> Hi Everyone,

> I have not written in a while to give you an update on my surgery. To

refresh

> everyones memory, I had a vestibulectomy on December 15. The first time I

had

> intercourse after the surgery, it hurt! It was not the old pain but more

like

> a stretching type pain. After that, there has been no pain at all! So, I

think

> the surgery worked! I have had intercourse several times with NO

> pain!!!!!!!!!!!!!!!!! I am very excited. (no pun intended!)

>

> Also, I still suffer from chronic pelvic pain. Last week I had a nerve

block

> done and they were able to pinpoint the exact nerve that is damaged. I am

> finally getting some answers! I see my doctor next week and we will

discuss my

> options. I am probably looking at surgery where they will cut the nerve.

The

> only long term affect of that is chronic constipation. I think I can

handle

> that better than the pain!

>

> I just wanted to let everyone know, there is some hope out there. It just

> takes time! This has been a long struggle for me but I am finally getting

some

> answers. Thanks for all of your support through my surgery. It is great

to

> have friends like you!

>

> Beckie

>

> ------------------------------------------------------------------------

> If you like the colors orange and blue, you will like our new web site!

> http://www.onelist.com

> ------------------------------------------------------------------------

>

[Guest guest]

Heidi...I'm sorry to hear you aren't any better. Did you make an appt. with

your doctor? Maybe it would be good for him to see you while you are so red &

in so much pain. Since you are having trouble getting pregnant have you ruled

out having edometrosis. Just a thought. Take care & keep us updated. Diane

[Guest guest]

Heidi...I'm sorry to hear you aren't any better. Did you make an appt. with

your doctor? Maybe it would be good for him to see you while you are so red &

in so much pain. Since you are having trouble getting pregnant have you ruled

out having edometrosis. Just a thought. Take care & keep us updated. Diane

[Guest guest]

Heidi,

I am really sorry that you are having so much pain. I know that this will

sound kind of simplistic, but have you tried the low oxalate diet and the

calcium citrate? It hasn't gotten rid of my pain really but I do get a lot

worse if I eat too many medium oxalate foods. I don't know if you have tried

this but it could help you.

<A HREF= " http://www.branwen.com/rowan/oxalate.htm " >The Low Oxalate Diet</A>

<A HREF= " http://www.vulvarpainfoundation.org./Low_oxalate_treatment.htm " >Low

Oxalate Treatment</A>

I know it is scary now, but you will find something to help. Sometimes it is

just trial and error.

I hope you get some answers very soon.

Take care

Darlene

[Guest guest]

Heidi! I'm so sorry to hear you are still in so much pain. I'm sorry I don't

have any suggestions but I wanted you to know that I was thinking about you.

I have a question for you and any other who have missed work because of the

pain - what exactly do you say??? Heidi, don't respond to me until you are

feeling better. TAKE CARE OF YOURSELF FIRST!!!! Promise! Nery

[Guest guest]

Heidi! I'm so sorry to hear you are still in so much pain. I'm sorry I don't

have any suggestions but I wanted you to know that I was thinking about you.

I have a question for you and any other who have missed work because of the

pain - what exactly do you say??? Heidi, don't respond to me until you are

feeling better. TAKE CARE OF YOURSELF FIRST!!!! Promise! Nery

[Guest guest]

Heidi! I'm so sorry to hear you are still in so much pain. I'm sorry I don't

have any suggestions but I wanted you to know that I was thinking about you.

I have a question for you and any other who have missed work because of the

pain - what exactly do you say??? Heidi, don't respond to me until you are

feeling better. TAKE CARE OF YOURSELF FIRST!!!! Promise! Nery

[Guest guest]

Heidi:

Thanks for letting us know how you're doing. Did you tell me you were on

antibs. recently? I'm wondering if that caused all this. Let me know. In the

meantime, I hope you can get into see your gyno after your period. As far as

work goes, you can't help it if you are having a problem right now. I'm hoping

they will understand. I had to talk to my boss about my IC at the time and

they seemed pretty understanding, so maybe let someone know you are having

female problems and are trying to take care of it. I'm so sorry this is

happening to you! Lainey

[Guest guest]

Heidi:

Thanks for letting us know how you're doing. Did you tell me you were on

antibs. recently? I'm wondering if that caused all this. Let me know. In the

meantime, I hope you can get into see your gyno after your period. As far as

work goes, you can't help it if you are having a problem right now. I'm hoping

they will understand. I had to talk to my boss about my IC at the time and

they seemed pretty understanding, so maybe let someone know you are having

female problems and are trying to take care of it. I'm so sorry this is

happening to you! Lainey

[Guest guest]

Heidi:

Thanks for letting us know how you're doing. Did you tell me you were on

antibs. recently? I'm wondering if that caused all this. Let me know. In the

meantime, I hope you can get into see your gyno after your period. As far as

work goes, you can't help it if you are having a problem right now. I'm hoping

they will understand. I had to talk to my boss about my IC at the time and

they seemed pretty understanding, so maybe let someone know you are having

female problems and are trying to take care of it. I'm so sorry this is

happening to you! Lainey

[Guest guest]

Nery:

Years ago I worked for a woman boss. I went into her office, closed the door

and told her I was having some women problems. I started off by talking about

my bladder and IC problems. I know most woman can relate to bladder pain. Then

I told her I was also having extreme vaginal pain. We worked out that I would

use up my lunch hour for doctor appts. or work later if need be. I used up

personal days, sick days, vacation time on it, which didn't help my stress

level as I never got a vacation! But, it did help in knowing SHE knew I was

doing my best to deal with something chronic and still work. I did miss a lot,

BTW.

As far as male bosses, just saying you have female problems usually shuts them

up. I don't mean to sound mean. It's just when I've said it, they blush and

mumble and say, ah, ah, okay. We have to keep our sense of humor here. One

thing I did learn, they can't fire you for being sick. There are now laws in

place to protect anyone with a disability. Hope this helps some. Lainey

[Guest guest]

Nery:

Years ago I worked for a woman boss. I went into her office, closed the door

and told her I was having some women problems. I started off by talking about

my bladder and IC problems. I know most woman can relate to bladder pain. Then

I told her I was also having extreme vaginal pain. We worked out that I would

use up my lunch hour for doctor appts. or work later if need be. I used up

personal days, sick days, vacation time on it, which didn't help my stress

level as I never got a vacation! But, it did help in knowing SHE knew I was

doing my best to deal with something chronic and still work. I did miss a lot,

BTW.

As far as male bosses, just saying you have female problems usually shuts them

up. I don't mean to sound mean. It's just when I've said it, they blush and

mumble and say, ah, ah, okay. We have to keep our sense of humor here. One

thing I did learn, they can't fire you for being sick. There are now laws in

place to protect anyone with a disability. Hope this helps some. Lainey

[Guest guest]

Heidi,

I woud call your doctor and tell him/her you need to see them asap. You

will take whatever appointment there is. As I have told you in other

notes when I am in a great deal of pain and can't seem to get through on

the telephone I go and sit n the doctors office and so farI have always

been seen. You need to go asap so the doctor and SEE where the pain is

located.

I had that sharp pain you are describing. My period(which is never late)

was 10 days late. I got (not really cramps) but sharp pains where my

ovaries might be. For 2 days I could hardly stand up. It finally did go

away but I plan to ask my doctor about it when I see her next week.

As far as work goes, I took my boss aside and explained what was

happening to me. She thought I could just go to the doctor get some

medicine and it would go away. Well we all know that is NOT the way it

is. She seems to be more sympathetic now. Also they can't fire you

because you are sick!

Have you tried the cool compresses? Sometimes I put a few ice cubes in a

napkin and hold that between my legs. Pretty soon I do't feel anythng.

I do hope you feel better soon.

MIchele D

[Guest guest]

Heidi,

I woud call your doctor and tell him/her you need to see them asap. You

will take whatever appointment there is. As I have told you in other

notes when I am in a great deal of pain and can't seem to get through on

the telephone I go and sit n the doctors office and so farI have always

been seen. You need to go asap so the doctor and SEE where the pain is

located.

I had that sharp pain you are describing. My period(which is never late)

was 10 days late. I got (not really cramps) but sharp pains where my

ovaries might be. For 2 days I could hardly stand up. It finally did go

away but I plan to ask my doctor about it when I see her next week.

As far as work goes, I took my boss aside and explained what was

happening to me. She thought I could just go to the doctor get some

medicine and it would go away. Well we all know that is NOT the way it

is. She seems to be more sympathetic now. Also they can't fire you

because you are sick!

Have you tried the cool compresses? Sometimes I put a few ice cubes in a

napkin and hold that between my legs. Pretty soon I do't feel anythng.

I do hope you feel better soon.

MIchele D

[Guest guest]

From Deb at DLitzFletc@...

Heidi,

Ditto what Micelle said. I have always been able to get to my gyn by

phone and/or get an appointment when I really needed him to take a look at

what was going on and hash out a treatment plan with me.

As for the sharp pain in the region of the ovaries, I had several severe

episodes between the ages of 13 and 34 and several times was told it was

probably benign ovarian cysts or cysts in my Fallopian tubes passing. Wrong!

I had severe endo and was at the point that ovulation on by left side left me

doubled over in pain before the endo was discovered when I had a tubal

ligation. Anyone who has this type of pain should follow up with their

doctor.

Deb

[Guest guest]

From Deb at DLitzFletc@...

Heidi,

Ditto what Micelle said. I have always been able to get to my gyn by

phone and/or get an appointment when I really needed him to take a look at

what was going on and hash out a treatment plan with me.

As for the sharp pain in the region of the ovaries, I had several severe

episodes between the ages of 13 and 34 and several times was told it was

probably benign ovarian cysts or cysts in my Fallopian tubes passing. Wrong!

I had severe endo and was at the point that ovulation on by left side left me

doubled over in pain before the endo was discovered when I had a tubal

ligation. Anyone who has this type of pain should follow up with their

doctor.

Deb

[Guest guest]

From Deb at DLitzFletc@...

Heidi,

Ditto what Micelle said. I have always been able to get to my gyn by

phone and/or get an appointment when I really needed him to take a look at

what was going on and hash out a treatment plan with me.

As for the sharp pain in the region of the ovaries, I had several severe

episodes between the ages of 13 and 34 and several times was told it was

probably benign ovarian cysts or cysts in my Fallopian tubes passing. Wrong!

I had severe endo and was at the point that ovulation on by left side left me

doubled over in pain before the endo was discovered when I had a tubal

ligation. Anyone who has this type of pain should follow up with their

doctor.

Deb

[Guest guest]

Heidi,

Call both of the doctors' offices and see which one seems most

responsive and can see you soonest. Part of my criteria for a good doctor is

having a staff that is responsive to patient needs and does not just run

interference, put you on hold immediately when you call before you can even

identify yourself and your problem, or tell you that you should be okay just

wait until your next scheduled appointment.

I think some of us forgot that you were between doctors, myself included.

Another thought on doctors --- I had a gyn as my primary care during the

18 months when my endo had escalated out of control, then after the

hysterectomy I started having vulvodynia symptoms, then 6 months later was

diagnosed with ic. It worked well for me because it eliminated the middleman

in getting to the gyn who could address my primary needs at the time. My

doctor was also pretty good with run of the mill stuff like allergies, sinus

infections, strep throat etc. When my insurance changed, I had to switch to

an internist as the new one does not allow gyns to be primary care physicians.

Thankfully, land passed a law that women do not have to get referrals to

go to a gyn for a gynecological problem. I can't imagine what a nightmare

this would be if an internist or family practice guy who knew nothing about

vulvodynia was playing gatekeeper and I needed a referral every time I went to

the gyn. I am sure that I have gone no less than 12 times each of the last

two or three years! I tease the office staff that if Dr. gave out

frequent flier miles they would see me less often because I would be in Hawaii

or some place else warm and worry free!

Hope you match a connection with a good doctor soon. Deb

[Guest guest]

Heidi,

Call both of the doctors' offices and see which one seems most

responsive and can see you soonest. Part of my criteria for a good doctor is

having a staff that is responsive to patient needs and does not just run

interference, put you on hold immediately when you call before you can even

identify yourself and your problem, or tell you that you should be okay just

wait until your next scheduled appointment.

I think some of us forgot that you were between doctors, myself included.

Another thought on doctors --- I had a gyn as my primary care during the

18 months when my endo had escalated out of control, then after the

hysterectomy I started having vulvodynia symptoms, then 6 months later was

diagnosed with ic. It worked well for me because it eliminated the middleman

in getting to the gyn who could address my primary needs at the time. My

doctor was also pretty good with run of the mill stuff like allergies, sinus

infections, strep throat etc. When my insurance changed, I had to switch to

an internist as the new one does not allow gyns to be primary care physicians.

Thankfully, land passed a law that women do not have to get referrals to

go to a gyn for a gynecological problem. I can't imagine what a nightmare

this would be if an internist or family practice guy who knew nothing about

vulvodynia was playing gatekeeper and I needed a referral every time I went to

the gyn. I am sure that I have gone no less than 12 times each of the last

two or three years! I tease the office staff that if Dr. gave out

frequent flier miles they would see me less often because I would be in Hawaii

or some place else warm and worry free!

Hope you match a connection with a good doctor soon. Deb

[Guest guest]

Heidi,

This may sound simplistic, but I've found that when I have fragile skin

with those darn little splits in it, applying either vaseline or Crisco

helps somewhat. It isn't a cure, but it does soothe and protect the skin.

Hope you start feeling better soon!

At 01:36 PM 3/9/1999 -0800, you wrote:

>

>

>I would insist that I get in to see my Gyn except for one minor problem

>- I don't have a Gyn right now. In fact, I don't even have a primary

>care physician right now as I just switched insurance plans.

>

>I did send an email to the ISSVD and requested the names of any

>physicians in MN who belong. They sent me the names of two, and

>amazingly, both are covered under my insurance. I'm going to try to get

>appointments with them as soon as I send this message. I'll let you

>know what happens.

>

>As far as the low ox diet/calcium citrate. I've " been there, done that "

>with no help whatsoever. I guess I've tried just about everything up to

>this point and the only thing that has helped even a little is the

>Estrace.

>

>Last night upon examination of the irritated vulvar skin, I noticed that

>the bad area is VERY shiny. My husband said it looks as if it's really

>thin and you can see blood vessels through it, or there are tiny

>hairline cuts or cracks. There was blood there, but we couldn't be

>absolutely sure if it was from my period or not. We doubted it because

>it was so much higher than the vagina. Anyway - even the Estrace is

>burning the area now. *sigh* Didn't someone on here say that if the

>skin is shiny it's because it's thinned?

>

>Anyway - wish me luck as I try to get an appointment with *someone*!

>

>Heidi

>

>------------------------------------------------------------------------

>Did you know that we have over 85,000 e-mail communities at Onelist?

>http://www.onelist.com

>Come visit our new web site and explore a new interest

>------------------------------------------------------------------------

>

[Guest guest]

I would insist that I get in to see my Gyn except for one minor problem

- I don't have a Gyn right now. In fact, I don't even have a primary

care physician right now as I just switched insurance plans.

I did send an email to the ISSVD and requested the names of any

physicians in MN who belong. They sent me the names of two, and

amazingly, both are covered under my insurance. I'm going to try to get

appointments with them as soon as I send this message. I'll let you

know what happens.

As far as the low ox diet/calcium citrate. I've " been there, done that "

with no help whatsoever. I guess I've tried just about everything up to

this point and the only thing that has helped even a little is the

Estrace.

Last night upon examination of the irritated vulvar skin, I noticed that

the bad area is VERY shiny. My husband said it looks as if it's really

thin and you can see blood vessels through it, or there are tiny

hairline cuts or cracks. There was blood there, but we couldn't be

absolutely sure if it was from my period or not. We doubted it because

it was so much higher than the vagina. Anyway - even the Estrace is

burning the area now. *sigh* Didn't someone on here say that if the

skin is shiny it's because it's thinned?

Anyway - wish me luck as I try to get an appointment with *someone*!

Heidi

[Guest guest]

Heidi,

I would call your doctor and demand to be seen. No one should have to suffer

like that without even seeing the doctor. If you have problems with him/her,

switch doctors. Hope your agony lessens soon.