Re: My success story

[Guest guest]

,

Can you post the proportions of the oils that you used? I'm sure many

would be interested.

Melinda

[Guest guest]

hi eryn--

i'm so happy for the relief you've found! did you have pain only on

attempted intercourse or at other times too?

julie

>

> hi all,

> i first saw this support group about a year ago, and at the time i was

> desperately hopeless about my situation and wanted so much to see some

> happy stories that would give me hope. now i want to share my success

> story here in hopes that it will help someone else out there who is

> suffering.

> when i lost my virginity at 17 (i am now almost 22), there was a lot

> of pain. i assumed that was normal for the first time. but every time

> we tried to have intercourse it was equally as painful. i visited my

> family doctor and two gynecologists, all of whom told me different

> things, prescribed useless creams and generally disregarded me. i

> spent the next three years completely depressed about sex. i accepted

> in my mind that i would never have painless sex and that no man would

> ever truly love me... and even if a man did love me, i was sure he

> would eventually leave me because of it. i grew to HATE my condition.

> i wouldn't think about it or talk about it to anyone. i secretly hated

> my friends for flippantly speaking about sex and taking it for

> granted. i can not possibly express in words the dark cloud that this

> put over my daily life.

> i learned eventually that my older sister also suffered from this

> condition (genetic? no one knows). luckily, she immediately found a

> specialist who knew a lot about vestibulitis and did not have to go

> through years of turmoil like i did. the first time i saw this

> wonderful gynecologist, he looked at my vagina for a quick second and

> said " i know what you have just by looking, and it is treatable. " i

> burst into tears right there. he said that it's a shame that so many

> women suffer from this but are too afraid to see a doctor, and even if

> they do, most doctors are very unaware about vulvodynia/ vestibulitis.

> in the beginning i was using a topical anesthetic. it did take the

> pain away, but i was not happy with how it interrupted the natural

> flow of love making. the cream would work best in a loving

> relationship, but sometimes sex happens casually... and taking 10

> minutes to try and get the cream in just the right spot and then

> waiting 10 more for it to take effect is not my idea of sexy!

> to make a long story short, what worked for me was a combination of

> gabapentin (600 mg 3x daily) and cognitive therapy. i can NOT stress

> how important therapy was, and firmly believe that it is impossible to

> overcome this condition without it. the gabapentin worked wonderfully,

> and of course the first time i had painless sex i burst into tears,

> like a horrible darkness had been lifted from my life.

> recently, i went off of the medication entirely. i now have moderate

> pain during intercourse upon entry, but it is bearable and does not

> last once he is inside.

> my whole life has changed because i learned to stop hating my

> condition and i took control of it. it was not an easy battle, and i

> am now on antidepressants for the lasting effects this has had on my

> mood. but i feel happy, healthy and i am in love and having sex often!

> it's a shame that there is so little research out there, but i want to

> let people know that we can overcome it and that there is hope.

>

> -eh

>

[Guest guest]

hi katie,

i guess i should have specified that i did cognitive (not physical)

therapy. the gabapentin did work for me, but i don't think it would

have worked had i not addressed all of the emotional issues

surrounding the disorder with my therapist. the fact that i can have a

healthy sex life today is an equal result of medicine and seeing a

psychologist, i think.

- eh

hi all,

> i first saw this support group about a year ago, and at the time i was

> desperately hopeless about my situation and wanted so much to see some

> happy stories that would give me hope. now i want to share my success

> story here in hopes that it will help someone else out there who is

> suffering.

> when i lost my virginity at 17 (i am now almost 22), there was a lot

> of pain. i assumed that was normal for the first time. but every time

> we tried to have intercourse it was equally as painful. i visited my

> family doctor and two gynecologists, all of whom told me different

> things, prescribed useless creams and generally disregarded me. i

> spent the next three years completely depressed about sex. i accepted

> in my mind that i would never have painless sex and that no man would

> ever truly love me... and even if a man did love me, i was sure he

> would eventually leave me because of it. i grew to HATE my condition.

> i wouldn't think about it or talk about it to anyone. i secretly hated

> my friends for flippantly speaking about sex and taking it for

> granted. i can not possibly express in words the dark cloud that this

> put over my daily life.

> i learned eventually that my older sister also suffered from this

> condition (genetic? no one knows). luckily, she immediately found a

> specialist who knew a lot about vestibulitis and did not have to go

> through years of turmoil like i did. the first time i saw this

> wonderful gynecologist, he looked at my vagina for a quick second and

> said " i know what you have just by looking, and it is treatable. " i

> burst into tears right there. he said that it's a shame that so many

> women suffer from this but are too afraid to see a doctor, and even if

> they do, most doctors are very unaware about vulvodynia/ vestibulitis.

> in the beginning i was using a topical anesthetic. it did take the

> pain away, but i was not happy with how it interrupted the natural

> flow of love making. the cream would work best in a loving

> relationship, but sometimes sex happens casually... and taking 10

> minutes to try and get the cream in just the right spot and then

> waiting 10 more for it to take effect is not my idea of sexy!

> to make a long story short, what worked for me was a combination of

> gabapentin (600 mg 3x daily) and cognitive therapy. i can NOT stress

> how important therapy was, and firmly believe that it is impossible to

> overcome this condition without it. the gabapentin worked wonderfully,

> and of course the first time i had painless sex i burst into tears,

> like a horrible darkness had been lifted from my life.

> recently, i went off of the medication entirely. i now have moderate

> pain during intercourse upon entry, but it is bearable and does not

> last once he is inside.

> my whole life has changed because i learned to stop hating my

> condition and i took control of it. it was not an easy battle, and i

> am now on antidepressants for the lasting effects this has had on my

> mood. but i feel happy, healthy and i am in love and having sex often!

> it's a shame that there is so little research out there, but i want to

> let people know that we can overcome it and that there is hope.

>

> -eh

>

>

>

>

>

>

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

> Take the Internet to Go: Yahoo!Go puts the Internet in your pocket:

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>

[Guest guest]

i had pain during intercourse (mostly upon entry) but also when

inserting tampons and having pap tests done. basically, it felt sore

and raw to touch at any time, even if i had not attempted sex in a

long time.

there's still always some degree of pain during intercourse, but

nowhere near to how it was before. basically, i can have a healthy sex

life now and i never thought that would have been possible.

> >

> > hi all,

> > i first saw this support group about a year ago, and at the time i was

> > desperately hopeless about my situation and wanted so much to see some

> > happy stories that would give me hope. now i want to share my success

> > story here in hopes that it will help someone else out there who is

> > suffering.

> > when i lost my virginity at 17 (i am now almost 22), there was a lot

> > of pain. i assumed that was normal for the first time. but every time

> > we tried to have intercourse it was equally as painful. i visited my

> > family doctor and two gynecologists, all of whom told me different

> > things, prescribed useless creams and generally disregarded me. i

> > spent the next three years completely depressed about sex. i accepted

> > in my mind that i would never have painless sex and that no man would

> > ever truly love me... and even if a man did love me, i was sure he

> > would eventually leave me because of it. i grew to HATE my condition.

> > i wouldn't think about it or talk about it to anyone. i secretly hated

> > my friends for flippantly speaking about sex and taking it for

> > granted. i can not possibly express in words the dark cloud that this

> > put over my daily life.

> > i learned eventually that my older sister also suffered from this

> > condition (genetic? no one knows). luckily, she immediately found a

> > specialist who knew a lot about vestibulitis and did not have to go

> > through years of turmoil like i did. the first time i saw this

> > wonderful gynecologist, he looked at my vagina for a quick second and

> > said " i know what you have just by looking, and it is treatable. " i

> > burst into tears right there. he said that it's a shame that so many

> > women suffer from this but are too afraid to see a doctor, and even if

> > they do, most doctors are very unaware about vulvodynia/ vestibulitis.

> > in the beginning i was using a topical anesthetic. it did take the

> > pain away, but i was not happy with how it interrupted the natural

> > flow of love making. the cream would work best in a loving

> > relationship, but sometimes sex happens casually... and taking 10

> > minutes to try and get the cream in just the right spot and then

> > waiting 10 more for it to take effect is not my idea of sexy!

> > to make a long story short, what worked for me was a combination of

> > gabapentin (600 mg 3x daily) and cognitive therapy. i can NOT stress

> > how important therapy was, and firmly believe that it is impossible to

> > overcome this condition without it. the gabapentin worked wonderfully,

> > and of course the first time i had painless sex i burst into tears,

> > like a horrible darkness had been lifted from my life.

> > recently, i went off of the medication entirely. i now have moderate

> > pain during intercourse upon entry, but it is bearable and does not

> > last once he is inside.

> > my whole life has changed because i learned to stop hating my

> > condition and i took control of it. it was not an easy battle, and i

> > am now on antidepressants for the lasting effects this has had on my

> > mood. but i feel happy, healthy and i am in love and having sex often!

> > it's a shame that there is so little research out there, but i want to

> > let people know that we can overcome it and that there is hope.

> >

> > -eh

> >

>

[Guest guest]

Coginitive therapy is fabulous and easy to find. I use it in my

private practice. I would highly recommend it for anybody with a

painful problem like we have. Eryn, have you considered physical

therapy to help " cement " the good work you have done so far with the

meds and the cbt?

Lindsey

> hi all,

> > i first saw this support group about a year ago, and at the

time i was

> > desperately hopeless about my situation and wanted so much to

see some

> > happy stories that would give me hope. now i want to share my

success

> > story here in hopes that it will help someone else out there

who is

> > suffering.

> > when i lost my virginity at 17 (i am now almost 22), there was

a lot

> > of pain. i assumed that was normal for the first time. but

every time

> > we tried to have intercourse it was equally as painful. i

visited my

> > family doctor and two gynecologists, all of whom told me

different

> > things, prescribed useless creams and generally disregarded me.

i

> > spent the next three years completely depressed about sex. i

accepted

> > in my mind that i would never have painless sex and that no man

would

> > ever truly love me... and even if a man did love me, i was sure

he

> > would eventually leave me because of it. i grew to HATE my

condition.

> > i wouldn't think about it or talk about it to anyone. i

secretly hated

> > my friends for flippantly speaking about sex and taking it for

> > granted. i can not possibly express in words the dark cloud

that this

> > put over my daily life.

> > i learned eventually that my older sister also suffered from

this

> > condition (genetic? no one knows). luckily, she immediately

found a

> > specialist who knew a lot about vestibulitis and did not have

to go

> > through years of turmoil like i did. the first time i saw this

> > wonderful gynecologist, he looked at my vagina for a quick

second and

> > said " i know what you have just by looking, and it is

treatable. " i

> > burst into tears right there. he said that it's a shame that so

many

> > women suffer from this but are too afraid to see a doctor, and

even if

> > they do, most doctors are very unaware about vulvodynia/

vestibulitis.

> > in the beginning i was using a topical anesthetic. it did take

the

> > pain away, but i was not happy with how it interrupted the

natural

> > flow of love making. the cream would work best in a loving

> > relationship, but sometimes sex happens casually... and taking

10

> > minutes to try and get the cream in just the right spot and then

> > waiting 10 more for it to take effect is not my idea of sexy!

> > to make a long story short, what worked for me was a

combination of

> > gabapentin (600 mg 3x daily) and cognitive therapy. i can NOT

stress

> > how important therapy was, and firmly believe that it is

impossible to

> > overcome this condition without it. the gabapentin worked

wonderfully,

> > and of course the first time i had painless sex i burst into

tears,

> > like a horrible darkness had been lifted from my life.

> > recently, i went off of the medication entirely. i now have

moderate

> > pain during intercourse upon entry, but it is bearable and does

not

> > last once he is inside.

> > my whole life has changed because i learned to stop hating my

> > condition and i took control of it. it was not an easy battle,

and i

> > am now on antidepressants for the lasting effects this has had

on my

> > mood. but i feel happy, healthy and i am in love and having sex

often!

> > it's a shame that there is so little research out there, but i

want to

> > let people know that we can overcome it and that there is hope.

> >

> > -eh

> >

> >

> >

> >

> >

> >

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

> > Take the Internet to Go: Yahoo!Go puts the Internet in your

pocket:

> mail, news, photos & more.

> >

>

>

>

>

>

>

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

> Be a better Globetrotter. Get better travel answers from someone

who knows.

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>

[Guest guest]

Ha ha, I also happen to be a (without the h).

I also have had a lot of success with a 20mg dose of Prozac. It

didn't completely cure me for two reasons:

1. After having so many yeast infections since I was 5 or so, I can't

tell the difference between a yeast infection and anything else very

well. So even after I started the Prozac I either thought I had one

or didn't think I had one, being wrong all the time. Best to just go

to the doc to get tested. This part of my issue was eventually

treated by going to a nutritionist; after ONE DAY I felt so much

better on that front. Turns out I am highly reactive in a very

specific way to eating wheat and yeast.

2. I'm now pregnant and trying to stay off Prozac. Since quitting, I

have started to have pain with intercourse but I'm not sure whether

this is the lack of Prozac or just thickening of tissue from pregnancy.

Other than that, though, Prozac made the pain go away. I too am

surprised that SSRI's are rarely mentioned.

[Guest guest]

, that's interesting information. I was told many years ago by my

PT that my sacrum is out of alignment and that my pelvic floor is

messed up. I also have extremely tight hamstrings. However, the

torture I endured for about a year of PT didn't seem to help me, so I

stopped. Perhaps I should look into it again. I think I'll have to be

tranquilized first, though, because it was the most painful thing I've

ever gone through. I remember not being able to stifle my cursing

during the sessions, and I couldn't control the tears of pain.

[Guest guest]

Nathlie--

I have corresponded with two women who have had their vulvodynia cured

by higher doses (40 and 60 mg) of Paxil.

The upshot of all this seems to be that different women respond to

different meds for nerve pain. I know some " experts " in the field just

keep trying meds until one works.

My IBS was greatly helped years ago by a combo of Prozac and thyroid

meds.

I did try Paxil last year for my pain and didn't have any luck. I was

on Prozac when it started, and am on it now, so it's not doing the

trick for me, but I know that it can and does for some people.

Also, Prozac and a couple of the other SSRIs have been proven to have

a strong antifungal effect. Google " antifungal effect of SSRI " and the

article will come up.

Would you mind explaining what your symptoms were like? Were they

localized or all over? Burning?

Thanks!

>

> Hello, everyone. I've been reading this forum for a while, and I

> thought I'd share my success story, relatively speaking. I've had

> vulvodynia (both vestibulitis and dyesthesia) for more than 20 years.

> I've gone through the gamut of treatments--pudendal nerve blocks,

> epidurals, pelvic floor biofeedback, intense physical therapy

> (internal and external), tricyclic antidepressants, massage therapy,

> lidocaine gel, etc.

>

> Well, years ago I ended up going to a psychiatrist for depression

> (imagine that!). He prescribed SSRIs, and lo and behold, I

> coincidentally noticed that the vulvodynia had lessened. I'm now

> taking Lexapro, and have relief of about 97% of my pain. I still have

> some clitoral pain w/pressure, pain at the introitus, and internal

> pain (not sure if it is part of pelvic floor problems or

> endometriosis, which I also have). However, I no longer spend each day

> wanting to hole myself up in a room. I've been relatively " normal " now

> for several years. I still want to get to the bottom of the internal

> pain that I experience with intercourse, but I am significantly better

> than I used to be.

>

> I just want you to know of this option in case you haven't tried it.

> I'm ticked off that there aren't more studies of SSRIs in vulvodynia

> patients, because it works for me very well (but the tricyclics did

> nothing but make me gain weight). The one caveat is that my sex drive

> went to nearly nothing. My doctor added Wellbutrin a month ago and it

> seems to help with that a bit. I may have to raise the dose.

>

> Good luck, everyone. Let me know if anyone else has had a similar

> experience.

>

> -Nathalie

>

[Guest guest]

one more question--which tricyclics did you try and at what dosage?

thanks! julie

> >

> > Hello, everyone. I've been reading this forum for a while, and I

> > thought I'd share my success story, relatively speaking. I've had

> > vulvodynia (both vestibulitis and dyesthesia) for more than 20 years.

> > I've gone through the gamut of treatments--pudendal nerve blocks,

> > epidurals, pelvic floor biofeedback, intense physical therapy

> > (internal and external), tricyclic antidepressants, massage therapy,

> > lidocaine gel, etc.

> >

> > Well, years ago I ended up going to a psychiatrist for depression

> > (imagine that!). He prescribed SSRIs, and lo and behold, I

> > coincidentally noticed that the vulvodynia had lessened. I'm now

> > taking Lexapro, and have relief of about 97% of my pain. I still have

> > some clitoral pain w/pressure, pain at the introitus, and internal

> > pain (not sure if it is part of pelvic floor problems or

> > endometriosis, which I also have). However, I no longer spend each day

> > wanting to hole myself up in a room. I've been relatively " normal " now

> > for several years. I still want to get to the bottom of the internal

> > pain that I experience with intercourse, but I am significantly better

> > than I used to be.

> >

> > I just want you to know of this option in case you haven't tried it.

> > I'm ticked off that there aren't more studies of SSRIs in vulvodynia

> > patients, because it works for me very well (but the tricyclics did

> > nothing but make me gain weight). The one caveat is that my sex drive

> > went to nearly nothing. My doctor added Wellbutrin a month ago and it

> > seems to help with that a bit. I may have to raise the dose.

> >

> > Good luck, everyone. Let me know if anyone else has had a similar

> > experience.

> >

> > -Nathalie

> >

>

[Guest guest]

I can't remember the dosages, but I tried Pamelor and Elavil. I

believe the dosages were fairly low and increased over time, but there

was no relief.

My symptoms were multiple--I had sharp clitoral pain--almost like a

feeling of having a thorn in it. I still have that pain, but it is

much less and manageable. I also used to have yeast infections, or

what *seemed* like constant yeast infections (one doc said I just had

an " overgrowth of white blood cells " --huh??). Now I rarely get them.

The worst problem of all (aside from the clitoral pain, horrible on

its own) was feeling like I had a urinary tract infection for days at

a time. It was a horrible burning, scalding-type sensation, and was

excruciating when I urinated. That's what put me over the edge. I

remember that my health provider at the time, Spadt in

Philadelphia, reproduced the sensation by pressing internally against

one of the walls of my vagina. She explained that it was a nerve

sensation and had something to do with my pelvic floor dysfunction--it

had nothing to do with an infection. I still get traces of that pain

if I have intercourse in certain positions. I also noticed that if I

am very ill, like with the flu, I'll get a flare of that pain.

What I'd really like is to be cured of the source of the problem--not

just masked by symptom relief, with the potential side effects of

antidepressants. That's why I'm considering trying PT again. But then

again, I hate to mess with something that's working (for the most part).

[Guest guest]

Hi Arline,

Basically my nutritionist started me on an anti-yeast diet plus some

further restrictions so we could take out everything that might be

causing me a problem and then slowly add it back in. So it was mostly

a diet of chicken, lean meats, veggies, and rice. Oh, and lots of

almonds. If I eat wheat or yeast, I get a yeast infection. It does

not affect me in any other way; most people who have bigger problems

with it have itching all over, etc. but mine is just the yeast. Of

course that affects my VV by causing me to treat the yeast, and after

so many OTC's, this exacerbates the problem. I am not sure whether it

was IgA (I'm not sure what that means).

These days, I try to do a yeast cleanse (available at Whole Foods and

natural food stores; if not, easy to look up how to do your own on the

Internet) when I do get a yeast infection and I'm not pregnant. For

me, the symptoms actually disappear faster than using Diflucan or

topical yeast treatments. Probably has to do with some kind of VV

reaction to the yeast or the treatments I guess. Yeast cleanses are

not fun and they do not taste good but well worth it.

I know there is a great doctor around the LA area who has done a lot

of research about the VV-yeast connection but I can't remember her

name and have not gone to her yet. When I am done being pregnant I

definitely want to see her. The pain with VV was one thing but I got

that fixed pretty quick with an SSRI; however the yeast problem has

been much harder to fix permanently.

Hope this helps!

BABB wrote:

>

> ,

>

> I am very curious about the kind of reaction that the

> nutritionist decided you were having to wheat and

> yeast (I assume that was baker's and brewer's yeast).

> Was it an IgA reaction by any chance?

>

>

> Turns out I am highly

> > reactive in a very

> > specific way to eating wheat and yeast.

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____

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>

[Guest guest]

,

I wanted to mention, RE: your anti-candida diet - typically rice is not

allowed on these diets, it is a very high glycemic index grain (read:

high sugar) and feeds yeast.

Melinda

[Guest guest]

That's very true. As I said, I did a very personalized version per

what the nutritionist recommended for my case. I also probably should

have added it was only brown rice, only once a day. Thanks for the catch.

>

> ,

> I wanted to mention, RE: your anti-candida diet - typically rice is not

> allowed on these diets, it is a very high glycemic index grain (read:

> high sugar) and feeds yeast.

> Melinda

>

[Guest guest]

> Basically my nutritionist started me on an

> anti-yeast diet plus some

> further restrictions so we could take out everything

> that might be

> causing me a problem and then slowly add it back in.

It must have been hard to figure all that out?

> So it was mostly

> a diet of chicken, lean meats, veggies, and rice.

> Oh, and lots of

> almonds. If I eat wheat or yeast, I get a yeast

> infection.

Really interesting. Are you aware that people who are

gluten sensitive have the double edged sword of

candida and gluten cross reacting and there is the

autoimmune disease of gluten sensitivity/Celiac

Disease. You might want to think about checking this

out.

Of

> course that affects my VV by causing me to treat the

> yeast, and after

> so many OTC's, this exacerbates the problem. I am

> not sure whether it

> was IgA (I'm not sure what that means).

There are certain autoimmune reactions that produce

antibodies that destroy the tissues. IgA is one of

them. For example I have IgA reactions to grains with

gluten, soy, dairy products, baker's and brewer's

yeast, and I don't what else.

> These days, I try to do a yeast cleanse (available

> at Whole Foods and

> natural food stores; if not, easy to look up how to

> do your own on the

> Internet) when I do get a yeast infection and I'm

> not pregnant.

Thanks for that tip. I might try that.

For

> me, the symptoms actually disappear faster than

> using Diflucan or

> topical yeast treatments. Probably has to do with

> some kind of VV

> reaction to the yeast or the treatments I guess.

> I know there is a great doctor around the LA area

> who has done a lot

> of research about the VV-yeast connection but I

> can't remember her

> name and have not gone to her yet.

Smart doctor probably.

When I am done

> being pregnant I

> definitely want to see her. The pain with VV was one

> thing but I got

> that fixed pretty quick with an SSRI; however the

> yeast problem has

> been much harder to fix permanently.

> Hope this helps!

Thanks .

Arline

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