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Hi ,

I just wanted to tell you that I really support you being on this

list. I'm not bitter towards men (yet!!!) - I realize that it is

tough to watch someone you love go through this. Vin (my boyfriend)

always tells me the hardest part about this disease is not that we

can't have sex - it is that I lost my spirit, the happy smile, the

spontaneous and fun person I used to be. This disease has really

crushed who I am as a person. It took away the things I used to love

to do - it took away a lot of my will to live. And I believe he is

going through a horrible time watching the girl he fell in love with

transform into another person. So I don't think for one minute, we

should be bitter towards men. They are also going through hell

themselves.

It is great that you go on this list and you try to give support

- that is what we really need. We need to hear " I will love you

regardless of this. " We need to hear - it will get better one day.

And if we ever want to make any progress in battling this disease, we

need to come together, men and women. Men are intelligent beings as

well as women and we both can put our minds together to figure this

out. I believe the very thing we complain about - not enough

information to the public about vv - is compounded when we say we

don't want men to voice their opinions. I think we should welcome

everyone. Sorry so long - - I just didn't want you to get the

idea that everyone on this list feels that way about men. I love

men!!

Love,

Seema

> Thanks. Some times I get a tad defensive.

>

> (((To Bellon)))

>

>

> > I personally was not referring to you in my post. All of the

women on

> > this list are plenty capable of figuring out who is *really*

looking

> > for info. to help a girlfriend or wife and who simply has other

> > objectives.

> > Meg

> >

> >

> >

> > *****END OF MESSAGE*****

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

> > To post message: VulvarDisorders@y...

> > To Subscribe: VulvarDisorders-subscribe@y...

> > Unsubscribe: VulvarDisorders-unsubscribe@y...

> > List owner: VulvarDisorders-owner@y...

> >

> > *****

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Seema,

1. Did somebody say that shouldn't be on this list? I didn't read

anybody saying that.

2. Who do you think is bitter towards men? I didn't hear anybody say that.

3. Did anybody say they didn't want men to voice their opinion.???? I didn't

read that anywhere.

I don't know where you are getting your material, Seema.

Arline

>

>Hi ,

> I just wanted to tell you that I really support you being on this

>list. I'm not bitter towards men (yet!!!) - I realize that it is

>tough to watch someone you love go through this. Vin (my boyfriend)

>always tells me the hardest part about this disease is not that we

>can't have sex - it is that I lost my spirit, the happy smile, the

>spontaneous and fun person I used to be. This disease has really

>crushed who I am as a person. It took away the things I used to love

>to do - it took away a lot of my will to live. And I believe he is

>going through a horrible time watching the girl he fell in love with

>transform into another person. So I don't think for one minute, we

>should be bitter towards men. They are also going through hell

>themselves.

> It is great that you go on this list and you try to give support

>- that is what we really need. We need to hear " I will love you

>regardless of this. " We need to hear - it will get better one day.

>And if we ever want to make any progress in battling this disease, we

>need to come together, men and women. Men are intelligent beings as

>well as women and we both can put our minds together to figure this

>out. I believe the very thing we complain about - not enough

>information to the public about vv - is compounded when we say we

>don't want men to voice their opinions. I think we should welcome

>everyone. Sorry so long - - I just didn't want you to get the

>idea that everyone on this list feels that way about men. I love

>men!!

>

>Love,

>Seema

_________________________________________________________________

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Arline,

I think some could have been implied but I most likely opened the can of

assumption. :-)

On Wed, 17 Apr 2002 11:59:12 +0000 grandy grandy

wrote:

Seema,

1. Did somebody say that shouldn't be on this list? I didn't read

anybody saying that.

2. Who do you think is bitter towards men? I didn't hear anybody say that.

3. Did anybody say they didn't want men to voice their opinion.???? I didn't

read that anywhere.

I don't know where you are getting your material, Seema.

Arline

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Arline,

To answer your questions, #1: no one explicitly said

shouldn't be on this list, but I can see how he could have been

offended by the email.

#2: I thought this part sounded a little bitter towards men. I

DO CARE that the men suffer because of their wives' physical problems.

Definitely the women in the group need to talk about

how to deal with

husbands and maybe this list is where, I don't know.

My hackles really rise

when I hear the men whining on it, though and I really

get uncomfortable

when one of them starts describing how wonderful they

themselves are and

their feelings, etc. toward the woman in their life.

It is one thing to have

voyeurs and scam artists on the list and another thing

to encourage them and

to tell them how wonderful they are.

I don't care very much how the men suffer because

their wives' genitals are

rotting off, anyway. What a crock!!

#3: A few people did say that they get uncomfortable when men

give advice about this condition. My personal opinion is - I don't

care who gives out the advice, if it useful, take it. Also, I like to

hear men's advice on what we as women with these conditions can do to

make their life easier as well. I care about my boyfriend's happiness

- it makes me sad to know I can't satisfy him sexually in that way

anymore. He is a sweetheart and says he doesn't mind since I do other

things for him. But I want to make this disease easier on him. It is

hard for everybody, not just women. True, we suffer physical pain as

well as emotional, but what the men are going through is hell too.

I don't want to get in any discussions with you - I just wrote

that message because I wanted to see that a lot of women support

him as I could see how he might have been offended.

Seema

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Seema,

is the one who brought into this. I never mentioned his name and

in fact didn't know it until he got defensive and decided I was talking

about him. The world does not revolve around (or you). I certainly

wasn't thinking about him or talking about him. You seem to make a lot of

things up as you go along and you do spin your web! I would appreciate your

not getting me involved in your fantasies. I wasn't talking to him or you,

nor do I want to. How you feel about your boyfriend, , and the rest of

the men in the universe is entirely your business and I am really not

interested and don't care. You can support who and what you want. I don't

care if gives advice. I didn't ever say I didn't think he should give

advice or anybody else shouldn't give advice. You keep putting words in my

mouth with your mythology and I think you should stop it and stop dragging

me into your elaborate fictionalized accusatory discussions.

Arline

Arline

>

>Arline,

> To answer your questions, #1: no one explicitly said

>shouldn't be on this list, but I can see how he could have been

>offended by the email.

>

> #2: I thought this part sounded a little bitter towards men. I

>DO CARE that the men suffer because of their wives' physical problems.

> Definitely the women in the group need to talk about

>how to deal with

> husbands and maybe this list is where, I don't know.

>My hackles really rise

> when I hear the men whining on it, though and I really

>get uncomfortable

> when one of them starts describing how wonderful they

>themselves are and

> their feelings, etc. toward the woman in their life.

>It is one thing to have

> voyeurs and scam artists on the list and another thing

>to encourage them and

> to tell them how wonderful they are.

>

>

> I don't care very much how the men suffer because

>their wives' genitals are

> rotting off, anyway. What a crock!!

>

>

>

> #3: A few people did say that they get uncomfortable when men

>give advice about this condition. My personal opinion is - I don't

>care who gives out the advice, if it useful, take it. Also, I like to

>hear men's advice on what we as women with these conditions can do to

>make their life easier as well. I care about my boyfriend's happiness

>- it makes me sad to know I can't satisfy him sexually in that way

>anymore. He is a sweetheart and says he doesn't mind since I do other

>things for him. But I want to make this disease easier on him. It is

>hard for everybody, not just women. True, we suffer physical pain as

>well as emotional, but what the men are going through is hell too.

>

> I don't want to get in any discussions with you - I just wrote

>that message because I wanted to see that a lot of women support

>him as I could see how he might have been offended.

>

>

>

>Seema

>

>

>

>

>

>

>

>

>*****END OF MESSAGE*****

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

>To post message: VulvarDisorders

> To Subscribe: VulvarDisorders-subscribe

> Unsubscribe: VulvarDisorders-unsubscribe

> List owner: VulvarDisorders-owner

>

>*****

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Seema,

is the one who brought into this. I never mentioned his name and

in fact didn't know it until he got defensive and decided I was talking

about him. The world does not revolve around (or you). I certainly

wasn't thinking about him or talking about him. You seem to make a lot of

things up as you go along and you do spin your web! I would appreciate your

not getting me involved in your fantasies. I wasn't talking to him or you,

nor do I want to. How you feel about your boyfriend, , and the rest of

the men in the universe is entirely your business and I am really not

interested and don't care. You can support who and what you want. I don't

care if gives advice. I didn't ever say I didn't think he should give

advice or anybody else shouldn't give advice. You keep putting words in my

mouth with your mythology and I think you should stop it and stop dragging

me into your elaborate fictionalized accusatory discussions.

Arline

Arline

>

>Arline,

> To answer your questions, #1: no one explicitly said

>shouldn't be on this list, but I can see how he could have been

>offended by the email.

>

> #2: I thought this part sounded a little bitter towards men. I

>DO CARE that the men suffer because of their wives' physical problems.

> Definitely the women in the group need to talk about

>how to deal with

> husbands and maybe this list is where, I don't know.

>My hackles really rise

> when I hear the men whining on it, though and I really

>get uncomfortable

> when one of them starts describing how wonderful they

>themselves are and

> their feelings, etc. toward the woman in their life.

>It is one thing to have

> voyeurs and scam artists on the list and another thing

>to encourage them and

> to tell them how wonderful they are.

>

>

> I don't care very much how the men suffer because

>their wives' genitals are

> rotting off, anyway. What a crock!!

>

>

>

> #3: A few people did say that they get uncomfortable when men

>give advice about this condition. My personal opinion is - I don't

>care who gives out the advice, if it useful, take it. Also, I like to

>hear men's advice on what we as women with these conditions can do to

>make their life easier as well. I care about my boyfriend's happiness

>- it makes me sad to know I can't satisfy him sexually in that way

>anymore. He is a sweetheart and says he doesn't mind since I do other

>things for him. But I want to make this disease easier on him. It is

>hard for everybody, not just women. True, we suffer physical pain as

>well as emotional, but what the men are going through is hell too.

>

> I don't want to get in any discussions with you - I just wrote

>that message because I wanted to see that a lot of women support

>him as I could see how he might have been offended.

>

>

>

>Seema

>

>

>

>

>

>

>

>

>*****END OF MESSAGE*****

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

>To post message: VulvarDisorders

> To Subscribe: VulvarDisorders-subscribe

> Unsubscribe: VulvarDisorders-unsubscribe

> List owner: VulvarDisorders-owner

>

>*****

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  • 4 months later...

Welcome

I am sure you have already got most of the answers to the

questions you asked by now! You will find everyone here in the group very

helpful! I pray you are speaking of Dr. Levin! Heres some info I have I

will share with you!

http://www.babies-by-levin.com/Get your tubal ligation reversal . . . in

a few simple steps . . . the picture guide! M. Levin, M.D., PSC /

/ www.babies-by-levin.com

<http://www.babies-by-levin.com>This picture guide is a fun way to

discover how to get your tubal ligation reversed without having to read

all that boring stuff on Dr. Levin's web site, much less the stuff he

will send to your home for you to read. This guide sort of cuts to the

chase and gives the boiled down, bare facts! Enjoy . . . come and get

pregnant! Call the Medical Records Department (or the doctor's office)

where you had your sterilization performed. Send them a signed release

<http://www.babies-by-levin.com/recordsrelease.html> requesting your

operative note and pathology report from your tubal sterilization. On the

release you need to include: the approximate date of the surgery, your

name at the time of the surgery, your current name, address, phone

number, date of birth and social security number. Ask them to send the

records to your address. Once you receive the records, separate out the

" Operative Note " and " Pathology Report " . Some types of sterilizations do

not have a pathology report so don't sweat it if it's not there. Mail the

reports to: M. Levin, M.D., PSC One Medical Center Plaza 225

Abraham Flexner Way, Suite 501 Louisville, KY 40202 . . . or you can fax

the reports to 1- . . . then check your calendar to see when

you can call Dr. Levin's office to do a " telephone consultation " if you

live far away, or an in-office consultation if you live close. Then call

Dr. Levin's office at 1- from far off places or 584-7787 for

those of you who live within the area. During this consultation, Dr.

Levin will ask you a bunch of medical questions about your general health

and your female system. Dr. Levin will review your sterilization records

and will then give you his best idea of your chances of a successful

surgery. He will give you the opportunity to ask as many questions as

your would like. Once the consultation is over you will need to get your

money together to prepay the surgery. If you don't have enough money,

then you can apply for a loan on Dr. Levin's web site at Lend me some

money dude <http://www.babies-by-levin.com/couponplan.htm>. If that

doesn't work because your credit has problems, then you can go back to

Dr. Levin's web site to the 24 month prepayment plan

<http://www.babies-by-levin.com/prepay24.htm>. Print the document on your

printer, sign and date it (your man too!), add a check for $250.00 made

out to M. Levin, M.D. for the out-patient procedure or for

$270.83 for the in-patient procedure where you spend the first night in

the hospital rather than the hotel. Each month send another check for a

total of 24 checks and mail the check to . . . M. Levin, M.D.,

PSC One Medical Center Plaza 225 Abraham Flexner Way, Suite 501

Louisville, KY 40202 Once the last payment is made, call Dr. Levin's

office at 1- for out of region patients . . . or 584-7787 for

local patients. Speak to Nurse Venica . . . the one with the needle . . .

and schedule your surgery. When it's time to come for the surgery

remember to pack very lightly. Nightgown and sweats, stuff that's loose

and won't irrigate your incision. Fly or drive to Louisville. For those

who come from far away, please arrive the afternoon or evening prior to

your reversal and check in at The Inn for Jewish Hospital. Get a good

nights sleep, leave a wake-up call and either walk the block over to the

hospital or take the shuttle so that you arrive at the hospital on time

to check in at Registration on the ground floor. After the nursing staff

gets you ready for the surgery, Dr. Levin will answer any questions you

have . . . do a physical exam . . . let you get some " feel good " medicine

from the anesthesia doctor . . . do your reversal . . . let you awaken in

the recovery room and then . . . shuttle you back to the hotel . . .

where you will eat, sleep and be not so very merry . . . until you pop a

few pain pills and doze off for the night! You can then fly or drive home

0-3 days later . . . as you see fit . . . and when you get home, you will

email (or call) us weekly so we know how you're doing. You will do the

" baby dance " whenever you want . . . until the " stork " does his thing!

(Is this getting deep?) Soon the baby will come . . . and crawl around

the floor to make you all so very, very merry . . . then you will sing

praises to God for your miracle of birth. End of story! PS: If the Stork

blows it and pregnancy doesn't happen within 6-8 months, you should

contact Dr. Levin who will figure out what's up and help make your dream

a come true! If this guide is too simple and you want to know more . . .

please read the literature mailed to you or browse at

www.babies-by-levin.com Thanks for your attention, it's an honor to

serve you!

On Sun, 1 Sep 2002 18:16:27 EDT bjgibbsbishop@... writes:

> How much is the consult and how can I contact that Doctor? I have

> just

> started my research and have not obtained much information yet. I

> just joined

> this group and everything is new to me.

>

>

>

>

>

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,

Thanks so much for your reply!

Why did you only use Protopic once or twice a week? My instrux say to use it twice a day, which was impossible at first, but is now doable.

So can you use Estrace while you are pregnant? Has pregnancy been hard for your vestibulitis? Did your symptoms change? Just curious, sorry ;?)

Right now I'm either doing double Protopic duty (one application in the morning and one before bed), or just a bedtime application. No Estrace. The reason for this is that I am not sure that my vulva is entirely used to the Protopic yet---it doesn't hurt to apply anymore, but it *definitely* increased tenderness in my problem areas when it flared for the first few days, and that will take a little while to recover. It still burns when I spray water directly on my vulva in the shower---another odd Protopic initial side effect which will take time to dissipate, I'm afraid.

But I hope to get back on an Estrace regimin soon, since it was uber helpful and I really started to feel better on it.

That's great news about your baby---September 24th is a very good birthday! You must be so excited. Cheers to that.

I'm off to work (oy!),

Kirstyn

Re: To Kirstyn/Protopic

Hi Kirstyn, Glad to hear that Protopic isn't irritating youanymore. I used the .1% strength.Regarding Estrace and Protopic - I only used Protopiconce or twice a week. So I would use Estrace on a dayI wasn't using Protopic. When I used Protopic twice aday I didn't use the Estrace. But I was also usingthe Estring - which is a ring inserted into the vaginathat slowly releases estrogen. So I was getting someestrogen to the area. Next time I go to my doctor Iwill have to ask her about mixing estrace and protopicto see what she has to say.FYI - right now I am not using Protopic because I ampregnant but I plan to start using it again as soon asI am finished breastfeeding etc. I only have 3 weeksleft! I am having a c-section on Tues. Sept 24.--- kjleuner wrote:> Hi ,> > I hung in there for two more applications of> Protopic and I'm now at the warm, fuzzy, Bengay> feeling you mentioned. Thank goodness! I think I'm> through the worst of it. Thank you for your> encouragement---that was a tough couple of days.> > You mentioned that you use Estrace and Protopic, but> not at the same time. So how do you alternate them?> What percentage (.03% or .1%) Protopic are you> using? My dilemma is that my doc prescribed .03%> Protopic 2x/day while I'm already using Estrace once> a day---which means I would have to mix Protopic> with Estrace either at night or in the morning. I'm> going to stick to just Protopic until I feel totally> done with the initial irritation it caused, and then> I'm not sure how I'm going to juggle the P and the> E.> > Have a good weekend,> Kirstyn__________________________________________________

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  • 4 months later...

Dear

Thank you for sharing you story. It is encouraging to hear of

successes and have feelings validated.

> We got engaged in August 1999. My pain from vulvar vestibulitis

> started in January 2001 (two years after starting to have sex).

How long did it take you to get diagnosed?

Did you doubt yourself and wonder if it was in your head?

What you said about things being easier to handle because the

relationship had already being cemented makes sense. I just have to

get to the stage where I can accept the pain as different and not bad.

It it positive that you entered your marriage knowing there were

hurdles. Didn't you have second thoughts about 'inflicting' this

difference on someone else? Sorry if that sounds harsh, its just

where my head is at the moment.

Even if it was a " bandaid "

> solution - like using lidocaine so I can't feel the pain - there

were

> still things that we could try.

I'll have to get more info about this I don't know about it. Is it a

numbing cream or somehting?

Last winter, a year after I had been diagnosed,

> I was feeling pretty darn shitty about the whole thing.

Was there any sense of relief that you had a name for it? A handle?

It was kind of like, how can he

> want me if I'm broken?

That is where I am, though I don't know who the 'he is' and am

otherwise not depressed.

But I've come to the point where I don't

> think of myself so much as broken, as different.

This is good but the difference doesn't only affect you. I am not

trying to challenge you, just humbly ask, how you can trust that your

husband wont get sick of the adapting he has to do, wont want to just

have sex without the hassles, wont go looking for it elsewhere. Of

course the simple answer is that he loves you enough to not risk the

marriage over something as trivial as -excuse the bluntness - getting

his dick inside someone? But is it fair to expect that of someone for

a lifetime? Please do not be offended by these questions, I am really

interested in how you resolved them if they occurred to you.

Like my knees -

Interesting analogy but your knees do not so intrinsically affect how

you express and develop a sense of intimacy with another. Thye affect

only you, not your relationships. I undestand you were using it as an

example of how you have adapted to another problem in your life and I

thank you for sharing it. I can relate to it in a sense that I have

significant food intolerances and have had to modify my eating habits

to be able to function. But this again is something I can take

responsibility of myself. If I eat out I chat with the cook, if I'm

going to someone's place I let them know or take my own food etc. In

this sense it can create some hassles with people who don't

understand how sick I become if I eat the wrong stuff, but thankfully

most are tolernat of it. Guess I can draw some strength from this

expereience when I see it in this light, that people have accepted

that difference

......

I I don't have great grains of

> wisdom for overcoming that detatchment.

Did you ever project that sense of detachmnet onto your husband? I

mean, did you ever wonder if your wanting to be 'away' from him meant

you had made a bad choice of partner? Again please be don't be

offended by this question.

I can say, however, that one thing that helped me, was

> realizing that my husband is an adult. He can make the decision to

> leave if he wants to, and the decision to stay.

He didn't even think of

> leaving - thought I was silly for feeling how I did (not in a bad

> way, in a " you silly girl, stop feeling so bad, you shouldn't " sort

> of way).

Sounds like things did get pretty rocky. Hope things are smoother now

and that you aren't being sent broke by th cost of condoms ;-).

Kind regards

>

>

>

>

> > Hi

> > Thanks for the encouragement, common sense approach and advice

> about

> > the other board.

> > I have had treatment for vaginismus with a councellor and now

> > understand that that was a problem caused by the other pain. I

> > believe I have that part of the puzzle sorted. I have an

> appointment

> > in April with a specialist but the appointment is for 15 minutes!

> as

> > a first consult. There is still a glimmer of hope that this will

> find

> > something....

> >

> > >Please go on and enjoy your life as much as

> > > you can.... All I'm saying is don't put your life on hold b/c

of

> > this.

> > This is what I need to hear and to learn how to do. I feel like

I'm

> > trapped because of wanting some sense of 'normality', wanting to

> > explore life and to find a soul mate through that journey. I also

> > find as I get close to someone I start fearing further intimacy.

I

> > never know if this hesitance is because of a lack of 'chemistry'

> for

> > that person or because of self protective behaviours to protect

> from

> > the anticipated pain. Does that make sense? This leads me to

think

> I

> > do have to detach from the intimate side of myself until this

pain

> > thing is resolved so as to not furhter confuse myself or people

> > around me. If it never is solved I feel I will never have a sense

> of

> > complete wholeness.

> >

> > May I ask how things went with your husband. Were you aware of

your

> > pain issues before the marriage or did you discover the pain

> problem

> > together? I think this makes a difference.

> >

> > Thanks again and I look forward to hearing more of your thoughts.

> >

> > Kind regards

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Hi

Thanks again for sharing your ideas and getting your husband's

perspective too. You articulate your ideas very well(in a way that I

can make sense of) and I am grateful for the time you must be putting

in to answer all these questions. Hope you are not getting in trouble

at work.......

especially for getting

> things out about the book... in fact, I might have to ask you

whether

> or not I could use this in a Q & A type segment....

Sure you can. I have wondered over the last few days if this site

could support a 'frequently asked question' section where people can

write answers to some of these questions and where new comers to the

group can go and read of other's expereiences. I am sure I am not teh

first person to ask these kind of questions, to want to explore these

questions and you would get very bad RSI if you had to respond to

everyone's questions:-)!!

Not to try and take away from your book or anything......

A friend has arrived to walk around the lake with me. Will write more

after dinner.

Kind regards

>

> > > this is why I WANT to get the book I'm trying to write about

this

> > > finished, but having such a tough time with it...

> > This sounds like a great way to get things in perspective. What

type

> > of book are you creating?

>

> I'm trying to write something pretty much autobiographical, just

going

> over my experiences and how I felt and what I did during this.

> Nothing intended as medical. I've talked my husband into trying to

> write some of the chapters from his point of view as well, but his

> motivation level is even lower than mine, so it's going nowhere

fast

> at the moment.

>

> > That's great you were so lucky with doctors. How did you find

this

> > site?

>

> I don't remember. Probably searching for stuff on google. I spent

> (and still do spend) plenty of time searching the 'net for new info.

>

> > That is also great that you have the experience of pain-free sex.

I

> > don't have that as a memory to shoot towards. If it ever happens

it

> > will probably be unbeleivable! I know this is a big factor in my

> > believing that it wont ever get better, I have a sense it is a

> > structural problem, like your knee.......

>

> I think that does make a huge difference, not having that initial

> experience... But don't think that just because the problem is

> structural that you can't make it any better. At least 1/3 of my

pain

> came from tight pelvic floor muscles (high resting levels) and

doing

> the biofeedback exercises helped that a lot. Some of the pain came

> from tight glutes and back muscles, and doing PT for those has

helped

> that as well. In both cases, it's a structural thing, but that's

> exactly what physical therapy is for - structural problems!

>

> > > So it was plainly out on the table that

> > > not proceeding with the wedding was always an option, but it

was

> > > never actually discussed, because it didn't really cross our

> > > minds.

> > This is confusing for me. Sounds like it may have been something

you

> > were both thinking and neither of you were prepared to bring up.

Is

> > this possible? Have you ever brought it up? Again, not trying to

> > challenge, just curious.

>

> Yeah, it's confusing to explain. In our relationship, there's very

> little that undergoes serious contemplation without being spoken

> about. I'm not sure exactly how to describe it, but since there

was

> no particular problem regarding arguments or pressuring about the

sex

> life, it wasn't something that came up. Basically, I don't think

that

> both of us were really thinking of it much. Any thoughts related

to

> it were closer to the " I'm going to be disappointed about how often

we

> have sex on hour honeymoon. " Though, it's important to keep in

mind

> that by the point of us setting a date and planning the wedding, I

was

> already out of the worst of my depression. I was able to

experience

> feeling, and so forth.

>

> > > I think, even in my darker times, I knew that there would be

some

> > > improvement - eventually, even if not complete improvement.

> > Well done on the optimism. Glad things have worked for you. I

take

> > courage from your story.

>

> Well, so much of it is basic personality type. Are you a glass

half

> full or glass half empty person, sort of thing. Why? I dunno! ;-

) I

> guess I figure that I haven't ruled out EVERY LAST option, hence

there

> is hope left, because there is something left to try.

>

> > > I haven't used lidocaine (yeah, it's an anesthetic that numbs

you)

> > > myself, but some of the women on the board seem to have found

it

> > > useful for them.

> > I have trouble with this concept. I am thinking 'like what's the

> > point?'. If the significance of the emotional bonding associated

> > with

> > intercourse is triggered by physical responses and these are

being

> > numbed, it would be like acting like a prostitute - no feeling

just

> > doing the deed. Harsh again but at least this is allowing me to

> > access some thoughts. Another way of looking at it though is that

it

> > would allow someone to 'act' in a way they were unable to

> > previously though it would be only that, acting....

>

> Well, and I mean no harshness here at all, I think that this view

may

> be skewed by your lack of ever experiencing pain free sex. The

> emotional bonding that comes from intercourse is NOT nearly

entirely

> derived by what you feel from it. Well, for me it certainly

isn't.

> When the problem was worse than it is now, but we were still able

to

> occasionally have sex, I wasn't able to orgasm (too distracted by

what

> pain I did have). But I still got enjoyment out of the act because

I

> could see that HE got enjoyment out of the act. You could think of

it

> as vicariously having sex... ;-) Because you're doing this for

the

> other person (not, say for money) and your intent is to have them

> enjoy themselves, you still very much get something out of it. In

> that sense, they are not only acting. Making love uses all of your

> body, not just the vulva, so there is still a lot that you are

doing,

> and your emotions aren't numbed at all. I've had sex plenty of

times

> where I don't orgasm and there is still a lot of emotional bonding

> that occurs. ;-)

>

> > > Well, there you go expecting that you won't see any improvement

in

> > > your lifetime. :-) Is that realistic?

> > I hope not but I expect it might be the case. I guess that is the

> > message I have got so far by medicos, being told there is nothing

> > wrong. My vulva pain issues are 95% with penetration (of

anything)

> > so

> > as someone else described their sypmtoms they are a 'don't mess

with

> > me and I won't mess with you' type. In this case it seems easier

to

> > not fight it, to respect my bodies needs and just adjust to

them...

> > Only there is a small part of me that still hopes.

>

> I hope that the future finds you, if not 100% better, at least more

> optomistic (because I think that helps the pain as well). Let's

use

> another medical example: asthma. I've got asthma, and it was bad

> enough that when I first took up running, I could hardly run more

than

> 40 steps without getting short of breath. Should I have not fought

it

> and " respected " my body's need for me to be sedentary? No! I went

to

> the doctor, I learned what I could do medically (from taking the

> appropriate medication before going running to keep lung

inflammation

> down and building up my lung capacity slowly). Just because it's

what

> your body is doing does not mean that it's what your body should be

> doing, or would be doing under ideal circumstances. I agree that

it

> is a LOT easier to not fight it, but I don't think it's worth what

you

> give up and lose. And before you say anything, think about the

> running/asthma analogy. It's VERY similar in the pelvic floor

tension

> sense, because time and practice - in the case of the vulva

stretching

> the muscle slowly over time, in the case of the lungs working the

> muscle slowly over time - can help (if that's the problem). I

agree

> that there are times when you should respect your body and just

adjust

> to it, but there are times when your body doesn't have good

conditions

> to operate in, and then just accepting whatever it does is just

> defeatist.

>

> > > There

> > > will be times when it's better or when it's worse, of course,

but

> > > I don't think it will ALWAYS be as bad as it is at its worst

> > > because there are always other treatments to try.

> > this is optimistic. I have a very short list currently of things

to

> > try. Does the V book everyone talked about contain lots of ideas

for

> > treatments?

>

> I think it discusses a number of them, and many of them I've

gleaned

> off of what people talk about on this board and others. It's a lot

of

> gathering information over time. Hmm... to list the things that

I've

> tried: hypo-allergenic laundry detergent, no soap on the vulva,

> getting rid of spermicides, trying non-latex condoms, natural

cotton

> hygiene products, finding a lubricant without propylene glycol,

> different positions, the low-oxalate diet with calcium citrate

> supplements, estrace (by itself), vagifem (by itself), always

wearing

> skirts, yoga, estrace and atarax and physical therapy with

> biofeedback, discontinuing some of my asthma meds, discontinuing

all

> my other meds (including the Pill), physical therapy for my back,

and

> now I'm getting a home unit for biofeedback. Some things I haven't

> tried: tricyclics, rinseing with water after every bathroom stop,

> lidocaine, testosterone cream, accupuncture, surgery, and all the

> other things listed on these boards... :-)

>

> > > He cheats, I ever find out about it, it's over. Period.

> > Why? For me at the moment I have gone completely the other way in

my

> > thinking. That is, if I had a partner who provided all the

emotional

> > support I needed, treated me kindly and accepted acts of kindness

> > from me, where they put their dick would not matter. Like, I

accept

> > sex may be somehting I am unable to share with them so I am happy

> for

> > them to have another partner for that - just as you may be happy

for

> > your husband to have someone else to run with. This proabaly

sounds

> > confusing because if I could believe this wholeheartedly I would

not

> > be on this group. I would not be looking for answers. So this

leads

> > me back to accepting and not fighting my body....

>

> Because that's who I am. Because I have my own trust issues from

> childhood, and trusting someone so completely was hard enough in

the

> first place that I would never be free of doubting him if that

> happened. That wouldn't be fair to either of us in a marriage.

I'm

> not saying it's the only way to go - plenty of people have gotten

past

> it and moved on with their lives and marriages, but - at least at

this

> point in my life - I don't think I'm strong enough to do that. I

> would never be able to trust that he wouldn't end up falling in

love

> with the other person and no longer want me around for the non-

sexual

> parts of the relationshiop. I would never feel confident saying I

> wanted him to spend time with me instead of her. Part of that

feeling

> is because sex is so closely intertwined with relationships in our

> society. To me, sex is an emotional thing. It is also physical,

but

> I am not able to completely separate the sexual act from the

emotional

> act. In a monogomous society, that sort of emotional act belongs

> within the emotional relationship... Uh oh, am I making any

sense...?

> Trying to write and think at the same time is hard! :-) Who knows,

> perhaps if I never was able to have sex or knew that I'd never be

able

> to have sex again, I might think differently. And that may make a

> difference in our differing thoughts here too. But make sure that

> it's not just a feeling of defeat making you think that. 'Cause

I'm

> convinced that you'll see at least some amount of improvement in

your

> lifetime!

>

> > > Second, I've told him, again, _explicitly_, that if he thinks

he

> > > can't do this, that he needs to find someone with whom he can

be

> > > as sexual as he wants, then let me know, and we'll get a

divorce.

> > > I won't be happy about it, but I won't deny him that

opportunity

> > > either.

> > Harsh question alert. ;-) So you wouldn't consider using the

> > services of a prostitute so you could maintain the other strong

> parts

> > of your relationship?

>

> No! I would not be able to get past that. Call it my own personal

> failing for not being able to get past it, but that's who I am.

> That's not to say that it would be the wrong choice for someone

else

> to make, but it would be the wrong choice for me.

>

> > > I always leave things like oral sex as an option

> > So, were you able to do these things when you were 'feeling

nothing'

> > for your husband? Were you prepared to go through the motions

when

> > you were 'disconnected'? I would have thought that would have

been

> > more damaging....

>

> For the most part, yes. I wasn't as deep a depression as other

people

> have talked about, so I was able to carry out the daily functions

of

> life, and I have always enjoyed giving him oral sex, so I got

> something out of it too. I internalized - fairly early - that my

lack

> of emotion was just that - a lack, like a blanket covering up

what's

> on the floor. So I was still able to function relatively well.

And

> that includes having fun sometimes. Of course not as often - I was

> usually too tired/grumpy for much of anything. But on the better

of

> those days, I could still get enjoyment out of HIM getting

enjoyment.

> This also plays into my answer to a question that comes up in a few

> questions, about how I felt and what I thought about the

relationship,

> etc...

>

> > > And if intercourse is a

> > > physical need, and I think that there's any chance that I can

deal

> > > with the pain, then I'm willing to consider that.

> > So how do you know if you will be able to stand the pain in

advance?

> > Why do you risk it?

>

> Well, if I was feeling pain during the day that was bad, I know

it'll

> be a bad night. I can also simply try using my finger or something

> else (even his penis - we _tried_ to have sex many times only for

it

> to not work!) to see how bad the burning would be. As for why to

risk

> it? Well, as with all decisions in a relationship, you don't just

> consider yourself. Since his happiness contributes to my

happiness, I

> have to take what makes him happy into account. When his need for

sex

> outweighs - for me - the pain that I would experience, that would

be a

> time when I would consider risking it. Just like you might agree

to

> do something scary with your significant other (like white water

> rafting), because they really really really want to try it. It's a

> judgement call, and one that I'd have to make at each given moment,

> but my husband's important to me, and that's why it may be worth

> risking it.

>

> > > Fourth, is

> > > basic trust...he's had a very stable

> > > family life as a background to learning about relationships and

> > This is a very good point.thank you for reminding me of its

> > significance. Do you also have the same type of background?

> > I don't! I've met some wonderful people who have tried to teach

me

> > and I think I'm doing OK considering....

>

> HA! Me? Stable relationshiop to learn about

relationships!?!?!?!?!?

> Anything but. My dad's a manipulative control freak who alienated

us

> from my mother's side of the family and most of his side of the

family

> when my mother died when I was 5. He didn't know how to raise a

> teenager that needs to develop their own sense of self-worth and

> respect and freedom and responsibility and pulled all sorts of

games

> that fall somewhere on the less nasty end of the emotional abuse

> spectrum. But for some reason (I'm not religious, so I don't

credit

> God), partially what he taught me as a child and partially the

> knowledge and people I was exposed to, I was in a position to

become

> more stable when I moved out on my own in college. (Note, this is

the

> incredibly short version of a LONG saga, that - according to my

father

> - is still far from finished... ;-) ) And while it might have

caused

> potential problems, it was my friends in college - which included

my

> husband - that helped so much. Having to be ON MY OWN helped a lot

> too, of course, as did what I learned and the people I was around

in

> general. The parents of my friends were also helpful as well. In

the

> end, it was the extended support system that helped so much. That,

> and knowing that my background was a terrible example of how

> relationships should go! ;-)

>

> > I now see this connection between diets and running!. I never

> > thought of running as something people did together - thought of

> > it as a solo sport. :-) And beleive it or not I had not actually

> > thought of how my restricted diet would make it harder for

someone

> to give

> > to give to me, but its true that it would.

>

> :-) But it will make it all the more special when they find the

work

> around that will let them share something with you that you can

deal

> well with! :-)

>

> > I didn't expect you to admit the doubts you had about your choice

of

> > partner - thank you for your honesty.

>

> :-) It was hardest to admit it to myself.

>

> > > But I didn't feel anything at all. So I just sort

> > > of said " wait it out, at least past the winter, and until I see

> > > some improvement in the VV " . Because I knew I couldn't think

> straight

> > > straight about it through depression.

> > So how did you answer those original questions about the quality

of

> > your choice? How do you know that what you are feeling now is

> > genuine, is it just now other things are good so you are not

looking

> > at those hard questions? (Yes I do have committemnt issues ;-))

>

> Well... it's hard to explain. I've already noted that I sort of

put

> the questions on hold for a while. What made the difference is

that

> we had four years before that of being very much in love and a

couple.

> Many of the times I asked myself whether or not I should be

thinking

> about it instead of putting it off, I reminded myself that HE

hadn't

> changed, and I KNEW for a fact that I loved him for four years,

> there's got to be a reason for it. I think some of what your

> expressing is more a commitment fear than anything else, but after

> four years, we already had a fair amount of commitment. The thing

> was, it was either keep going in a relationsip that made us happy

and

> loved giving up the opportunity to date other people, or take the

> chance on finding someone else who made each of us as happy and

lose

> what we already had. Yeah, it's a risk, either way, but this way

made

> more sense, given the relationship that we had/have.

>

> > If your husband is the only man you have ever had sex with did

you

> > doubt his skill level, wonder if he was a 'better'lover

(smaller???)

> > there wouldn't be a problem? Didn't you want to try sex with

others

> > to see if with different chemistry your body would react

> > differently? Did you consider you may have been 'allergic' to each

> > other I guess you are at a place where you have not had this

> absolute

> > belief in another betrayed, so your instincts tell you to trust

as

> > this is your expereience. Is this fair?

>

> Well, he's downright average. (My doc suggested I get a vibrator,

> they looked big, so I measured him. Decidedly average.) So I

wasn't

> thinking too much on size. But remember, we had TWO years where we

> had sex. And it was good. And it felt lovely. And we learned our

> skills together. Different chemistry reactions would have put me

at

> risk for STDs and pregnancy (yep, we used the pill and condoms most

of

> the time), but there wasn't a problem from that perspective, and I

> knew it because we had sex successfully so many times. Did I want

to

> try sex with others? Sure, so does he. Variety is the spice of

life.

> But we both believe in monogamy as a practicle thing (fantasy

lives

> can have as many partners as you want!), and we didn't want to give

up

> what we had, so we stuck with just each other. I think the big

> difference is the fact that we did have sex without a problem for a

> while. If we didn't, I probably would have had those doubts - but

for

> the most part, you can deal with them. Wondering about size being

the

> problem? Get a set of dilators and test it out. Wondering if

allergy

> is the problem? Get some different condoms and try them out.

> Wondering if skill is a problem? Get some books, get some

practice,

> try it out. (I'm an applied physicist, what can I say! :-) )

>

> > > I never put it in the

> > > terms " I don't think I love you " because that wasn't the case.

> > How did you know this? How did you know that you hadn't mistaken

> > campanionship love with intimate love? How did you know that your

> > need to be distant from your husband wasn't causing your need to

> > retract from everything else?

>

> Because I had no motivation for anything. Because I used to love

> cooking and I didn't care anymore. Because I used to love running,

> and I didn't care any more. Because I used to enjoy playing games

and

> I didn't care anymore. Because the world was one big, damp, grey,

> dark, expansive, dreary place of forced existence that had no light

in

> it. That sort of comprehensive lack of emotion doesn't come from

one

> thing in your life being wrong. Outside of the depression thing,

> companionship love _feels_ different from intimate love. I call it

> " the warm fuzzies " , and I doubt I could explain it even if it meant

my

> life if I didn't. Saying " I don't love you " would have been wrong

> because that's not what I felt. What I felt was nothing. Nothing

is

> not a lack of love, because a lack of love is something... Uh oh,

I

> don't want to get metaphysical here... :-) Hopefully you get what

I

> mean... :-)

>

> > > He remained optomisitic,

> > > reminding me that I needed to give the treatments for the

> > > VV a chance, and if they didn't work, we'd try something else.

> > This is great! Sounds like you found yourself a gem. Were there

ever

> > times he put pressure on you? How did you handle these times?

>

> Nope. Don't ask me why or how, but nope. I did not ever feel

> pressure from him. Ever. I know, he's a gem - and no, I'm not

giving

> him up to anyone! :-) I think it helps that his sex drive is not

over

> the top, and he was (and is) free to masturbate as much as

possible.

> And that he did get sex on occasion (more about that at the end).

>

> > >Talking to him helped a lot I think, because if I sounded less

> > > sincere when saying " I love you " right before we went to sleep,

he

> > > knew that it wasn't because I didn't love him, it was because I

> > > was walking around as a depressed shell, void of any emotion to

> > > put into any statement. I know that half the

> > > reason that we're still strong through all that is my husband,

and

> > > I'm very very glad for it, but the other half was finding the

> > > strength to come out of it - but admit to being in it when I

was

> > > and talking about it....

> > Well done on the growth you have acheived from these internal

> > hardships. And thanks again for sharing.

>

> No problem. Thank you for asking the questions and giving me the

> opportunity to air out my thoughts.

>

> > I know a lot of the questions I have asked really don't have

> > answers, they are just things you have chosen to see in a

particular

> > way as that is the way that seems most helpful at the time - life

is

> > often like that - no absolutes, and the sooner I get my head

around

> > that the better I'll probably be.

>

> It takes time. And you're totally right that it's all about how

you

> see it. Let me end by adding something my husband wrote. When you

> asked about whether or not we specifically talked about

> cancelling/postponing the wedding, I emailed him to ask him if he

> remembered, and then he asked for the whole post for context, and

> here's what he wrote:

>

> * " You may have specifically asked if I wanted to call off /

postpone

> * the wedding, I don't recall. If you did, I'm sure I brushed it

> aside

> * with the probably-too-casual confidence that we'd get you fixed

> * sooner or later, which I'll talk more about in a second. Did I

ever

> * think about postponing/calling off the wedding? No. Or at least

> not

> * for that! :-) I vaguely recall having doubts in general about

the

> * same sort of only had one girlfriend, getting tied down, won't be

> * able to stick my dick into random people, blah blah blah stuff

that

> I

> * imagine everyone does. But nothing serious.

>

> * I think the fact that we had a solid foundation of pain-free

> * intercourse before all of this happened, and that we had solved

> * previous pain issues made me confident that we would find a

> solution-

> * also the fact that there was almost always, even in the worst of

the

> * months, a time in the month that things would be considerably

better

> * than at other times of the month, that I think kept us going

pretty

> * well. There's probably a big difference in the psychological

effect

> * of 3.5 weeks w/o sex than say, 3 or 4 months. Although many

couples

> * have to go through that kind of a phase during pregnancy/child

birth

> * anyway... So, from that point of view- I really never had it

*that*

> * bad.

>

> * Anyway, so I don't think I ever really seriously

considered, 'What

> if

> * there came a time when we just couldn't have sex at all?' because

> * primarily, I have no idea what would happen. I don't think I

could

> * know how I would deal with it unless it actually happened. So

why

> * should I put my life on hold for that possible eventuality? We

can

> * deal with that if it does in fact come along. Maybe if I had

more

> of

> * a legitimate " 'til death do us part " mentality, I would have

worried

> * more about it, but I didn't! :-) "

>

> He later added:

>

> * The other thought I had with regard to her question about me

> 'getting

> * sick of the adapting I have to do to have sex without the

hassles'-

> * That's what marriage is! Sex with hassles! All men want to

stick

> * their dicks inside other people, but unless you have an open

> marriage

> * or you're cheating, you deal with the fact that you can't stick

your

> * dick into other people, and there are going to be hassles- it's

not

> * like all married couples always want to have sex with each other

all

> * of the time. Anyway, once you accept that you can't stick you

dick

> * in everyone, a little added VV hassle isn't really that big a

deal

> * compared with general living together kind of hassles. (not that

> * you're hard to live with or anything- but there are compromises

> * inherent in any relationship, etc.) Now, no sex would be

different.

>

> * But anyway...

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Thanks for the encouragement about the physio. Your comments have

encouraged me to act. I was given a contact by my regular Physio

months ago but was not empowered enough to act - they practise 600km

away - but now have a greater sense that it may be worth trying!

without being spoken

The

> > emotional bonding that comes from intercourse is NOT nearly

> entirely derived by what you feel from it. Well, for me it

certainly isn't.

This is a new idea to me! I beieve the sensations associated with the

closeness of intercourse would deepen the intensity of the emotional

bond.

Making love uses all of your

> > body, not just the vulva, so there is still a lot that you are

> doing,

> > and your emotions aren't numbed at all. I've had sex plenty of

> times

> > where I don't orgasm and there is still a lot of emotional

bonding

> > that occurs. ;-)

OK, I'm not linking orgasm with bonding, I am connecting the

sensation of physical togetherness, physical bonding with emotional

bonding. I think we have differing experiences here.

Should I have not fought

> it

> > and " respected " my body's need for me to be sedentary? No!

I'm not sure I agree with you. There are sports that asthma suffers

can take up, ie swimming, that don't require drugs and which help

develop fitness without any intervention. I guess I am trying to see

things in a very definite way here. Am I trying to throw out all the

Pharmacutical developments of the last century??? Whilst writing this

I remembered an article about how asthma attacks can be overcome by

learning breathing techniques. If I agree that its good for asthma

sufferes to learn these techniques I should agree with trying Physio

for vulva issues. Think I've ironed out those thoughts now.....

I agree that

> it

> > is a LOT easier to not fight it, but I don't think it's worth

what

> you

> > give up and lose.

And this is where you have a positive experience to draw on and to

beleive. All I have is pain and other people's stories. It is a

pretty big act of faith to believe that when/if I get the pain stuff

sorted it will open a new exciting world I've not known. I remember

my councellor talking about little steps, little successes. That is

what I must focus on, pushing myself forward, resting if I need to,

but not allowing myself to move back into helplessness.

Hmm... to list the things that

> I've

> > tried:

Thanks for the list. I've printed it to take as a resource when I see

the specialist.

To me, sex is an emotional thing. It is also physical,

> but

> > I am not able to completely separate the sexual act from the

> emotional

> > act.

This is great for you. For me, because of the pain issues, the self

doubt that that created, combined with partners who were insenstive

to these issues, I learnt to separate the two as a survival skill.

( " They don't want to be hurting me, I shouldn't hurt, I won't feel

the hurt " type thinking only I wasn't strong enough to block the

physical pain). Only thing is now I don't seem to be able to unlearn

it, to reconnect the two. Perhaps this is poor choice of partners,

perhaps it is still the pain??

> > else (even his penis - we _tried_ to have sex many times only for

> it

> > to not work!)

How does he cope with this. How does he cope with the frustration?

Wondering about size being

> the

> > problem?

I know it isn't a case of too big for me. I have had this as an issue

with all sized insertions even down to a cotton bud that my

councellor suggested I do a 'mapping' exercise with! That

realisation, that a cotton bud caused pain , was very discouraging.

The councellor helped me turn that around into seeing it as more

information to use when seeking help from professionals.

Wondering if

> allergy

> > is the problem?

Allergy may be part of the issue, I have inherited skin 'issues' that

may be affecting the vulva skin too.

There's probably a big difference in the psychological

> effect

> > * of 3.5 weeks w/o sex than say, 3 or 4 months.

Maybe if I had

> more

> > of

> > * a legitimate " 'til death do us part " mentality, I would have

> worried

> > * more about it, but I didn't! :-) "

What did he mean by this??

I've kind of run out of questions but thanks againfor your input.

Kind regards

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> Thanks for the encouragement about the physio. Your comments have

> encouraged me to act. I was given a contact by my regular Physio

> months ago but was not empowered enough to act - they practise 600km

> away - but now have a greater sense that it may be worth trying!

> without being spoken

Wow! That is a long distance. Maybe - and it still won't be cheap,

unfortunately - they can set you up on a home program? I'm going to

be setting one up this month, since the insurance company is tired of

paying for the past year of PT. :-) Maybe in that case, you could

head out there for two days, get to learn what you need to do in two

sessions, go home, and perhaps do a follow up or two over the next few

months? Still not cheap, but _if_ you can find someone to help you

set it up, I think you've got a good shot. I guess I hadn't

really realized that you haven't tried physical therapy yet, despite

thinking that is was physiological/muscular. I say go for it! :-) So

many women have found it to help them, I think you've got a chance at

improvement there! Well, I'm certainly holding out HOPE that you've

got a chance at improvement there! :-) If you do decide to do this,

let us know how it goes. (Heehee... I'm getting all excited for you.

:-) )

> > > The

> > > emotional bonding that comes from intercourse is NOT nearly

> > > entirely derived by what you feel from it. Well, for me it

> certainly isn't.

> This is a new idea to me! I beieve the sensations associated with

> the

> closeness of intercourse would deepen the intensity of the emotional

> bond.

Well, I think you're right that it deepens it... But it's kinda like

having either a couple small bites of your favorite ice cream or a big

bowlful. Both are good - and normally you'd want the big bowlful to

get the " full experience " of the taste (Mmm... strawberry

Haagen-Daas... YUM! :-) ) But you can still fully enjoy the small

bites too. It does depend on your mood, I think. And so much of it

really is in deriving joy from somebody else's joy. I think I used

the word vicarious, because sometimes, that's very much how it feels,

but when you love someone like that, making them feel so good is a

very rewarding sensation, I think. I don't know, maybe it's another

personality thing. Maybe it's just me...

> > > Making love uses all of your

> > > body, not just the vulva, so there is still a lot that you are

> > > doing,

> > > and your emotions aren't numbed at all. I've had sex plenty of

> > > times

> > > where I don't orgasm and there is still a lot of emotional

> > > bonding

> > > that occurs. ;-)

> OK, I'm not linking orgasm with bonding, I am connecting the

> sensation of physical togetherness, physical bonding with emotional

> bonding. I think we have differing experiences here.

I'm sorry I misunderstood you there. But there's still a lot of

emotional bonding that comes from a lack of intercourse that still

involves physical togetherness. While I'd agree that there is a

difference if you exclude all forms of penetration, I don't think it's

as big of a difference as I'm getting the impression that you are

thinking of... If you follow my chain there... :-) There's a lot to

be said - from a psychological perspective - for skin-skin contact,

but that doesn't require any penetration. It _does_ require a partner

who doesn't _expect_ penetration as the end-all-be-all to the

experience. I think it goes a step past " heavy petting " without

getting to " home base " ... There's a book I picked up at & Noble

called " A Woman's Guide to Overcoming Sexual Fear and Pain " that goes

through a number of exercises designed just for this sort of thing.

(Wow, I'm so sorry I haven't mentioned it yet!!! You might find it to

be a good read.) It goes through a number of exercises, from the very

very basic (nothing sexual at all) touching exercises, to more

intimate exercises, some involving touching (usually non-genital, in

fact, in order to dissociate intimate contact with intimate genital

contact), some only involving talking. I believe a lot of sex

therapists use the same sort of sensate focus exercises, and - if

practiced often enough - I can see them being very useful. We didn't

really go through them as they're laid out in the workbook, because we

weren't quite fitting the niche it was directed to, but I found some

of the ideas quite useful and I have used them.

> > > Should I have not fought

> > > it

> > > and " respected " my body's need for me to be sedentary? No!

> I'm not sure I agree with you. There are sports that asthma suffers

> can take up, ie swimming, that don't require drugs and which help

> develop fitness without any intervention. I guess I am trying to see

> things in a very definite way here. Am I trying to throw out all the

> Pharmacutical developments of the last century??? Whilst writing

> this

> I remembered an article about how asthma attacks can be overcome by

> learning breathing techniques. If I agree that its good for asthma

> sufferes to learn these techniques I should agree with trying Physio

> for vulva issues. Think I've ironed out those thoughts now.....

Isn't it amazing how our thoughts progress through arguments like that

:-) (As for swimming not being a problem for an asthmatic - ha!,

that's only true if you stick exclusively with the backstroke,

otherwise the repeated holding your breath and blowing out under water

is HARD - I'm working on it right now, and I can only barely make the

length of the pool twice :-) But again, practice practice. :-) )

Then again, to continue your analogy, what about sexual practices

that could be picked up that won't hurt you. There's a fair amount of

intimacy that can be obtained without intercourse at all. Many of the

women on here have discussed that they've learned a lot about having

sex without penetration because of this problem. It's hard to really

think about it, and to this day, I have trouble thinking about it as

real sex, but I'm young and inexperience, and I have a feeling that a

little more maturity and the experience of the pain after childbirth

will fix that little perception problem of mine. ;-) I know that some

of the more reader friendly versions of the Kama Sutra go into greater

detail about these sorts of things, and I think there are books

directed entirely to sex without penetration. There's even a group on

here (yahoo groups) for the medically celebate, and I bet they've got

all kinds of great ideas!

> > > I agree that it

> > > is a LOT easier to not fight it, but I don't think it's worth

> > >what you give up and lose.

> And this is where you have a positive experience to draw on and to

> beleive. All I have is pain and other people's stories. It is a

> pretty big act of faith to believe that when/if I get the pain stuff

> sorted it will open a new exciting world I've not known. I remember

> my councellor talking about little steps, little successes. That is

> what I must focus on, pushing myself forward, resting if I need to,

> but not allowing myself to move back into helplessness.

True. I wish that everyone whose had a positive experience could

funnel it right into your brain so you could _understand_ it from the

inside out. On the other hand, I'm always worried about unnecessarily

getting my hopes up, so I worry when you say " when/if I get the pain

stuff sorted it will open a new exciting world I've not know " . A new

world, yes, and I'd say good... But " exciting " would probably take a

lot of time to gain confidence and assurance in yourself and your

body. I totally agree with the counselor about little steps. I can't

imagine how many things in the world I wouldn't have accomplished if

not going for the little steps first! :-) Maybe some people who have

had pain since day one and have had improvement can chime in and give

some words of advice that are more closely suited to your situation.

(Anyone? Please!!) I agree, though, helplessness is BAD.

> > > Hmm... to list the things that

> > > I've tried:

> Thanks for the list. I've printed it to take as a resource when I

> see the specialist.

I'd suggest reading through the past posts. There are other things

that they've listed that I'm sure I've forgotten... Like Protopic (a

mast cell inhibitor), or even the over-the-counter mast cell

inhibitor nose spray... can't remember the name... drat... , aloe

vera, magnesium supplements... Oh, there are so many things that have

been discussed, I could spend hours, DAYS just going through the old

posts to harvest ideas. There are so many helpful women on here who

have tried so many things, they're a wealth of information!

> > > To me, sex is an emotional thing. It is also physical, but

> > > I am not able to completely separate the sexual act from the

> > > emotional act.

> This is great for you. For me, because of the pain issues, the self

> doubt that that created, combined with partners who were insenstive

> to these issues, I learnt to separate the two as a survival skill.

> ( " They don't want to be hurting me, I shouldn't hurt, I won't feel

> the hurt " type thinking only I wasn't strong enough to block the

> physical pain). Only thing is now I don't seem to be able to unlearn

> it, to reconnect the two. Perhaps this is poor choice of partners,

> perhaps it is still the pain??

A big frowny face and a big GRRRRR to all your insensitive, selfish

partners who have done that two you. The Bastards! I don't mean to

male bash, but I hate men like that. I promise you they aren't all

like that, but it may be worth while to look at the type of men you

typically go after and see if they have a tendency to behave that way

more than other demographic groups. (What I'm thinking of is so many

of the conversations I've had with people my age, looking for dates,

etc, who say they can't find any good men, and I tell them to go hunt

down the geeks and nerds - because I am one and went to a college full

of them. They always so " oh god no, I don't want to date one of

THOSE! " But they're overlooking a populations o - from my personal

experience - a group of much more understanding and sensitive

potential dates/mates.) But you're a lot more to offer than your

vagina! There's so much more and men who can't see that... well, are

they worth the time? Honestly, I don't understand why a man would

still try to have sex with you if it hurt that much... I mean, if you

go out on a hiking trip, and you break your leg, does he say " Well,

get up and walk, I don't want to wait for a rescue team " ? I don't

think so! Sigh... I wish the right partner could just pop up for

you... I think it's so important. At least, it's really important to

not have the wrong partners... I'm sorry for the psychological trauma

they put you through, and I really really hope that it doesn't ever

happen to you again.

> > > else (even his penis - we _tried_ to have sex many times only

> > > for it to not work!)

> How does he cope with this. How does he cope with the frustration?

Again, I just opted to ask him this one:

*You know what the problem with women is? They're just too damn

*empathetic! :-)

(Just a note: He means this in a good way. He's just teasing a bit,

and not being an ass, I promise. It'd be obvious if you knew him and

his personality...)

*Coping with the frustration isn't that hard. Not letting it

*psychologically affect you into not making the effort to try it out

*again the next time is harder.

*However, to try to stay on topic... I think the answer here is to

*not get frustrated in the first place. Don't come into it expecting

*that you're going to be able to necessarily go all the way every

*time, as it were. That doesn't mean it's not worth trying out to

*see if it'll work that day... Who knows, you might get lucky! And

*if it doesn't work out, then you just have to do what you can and

*move on.

*I'm probably not the best person to ask on this subject, because I

*don't get frustrated easily, so I don't really have good advice on

*how to avoid it.

> > > Wondering about size being the problem?

> I know it isn't a case of too big for me. I have had this as an

> issue

> with all sized insertions even down to a cotton bud that my

> councellor suggested I do a 'mapping' exercise with! That

> realisation, that a cotton bud caused pain , was very discouraging.

> The councellor helped me turn that around into seeing it as more

> information to use when seeking help from professionals.

Well, a q-tip test is the common method of dx'ing VV. I mean, when my

doctor used the q-tip to determine where the pain was, I didn't quite

jump up off the table or kick him in the face, but I wanted to. :-)

Some of the other women have described litterally jumping off the

table from the pain of the q-tip test. That's pretty much the nature

of VV. But the other nice part about doing this test is that - as I

continued my treatment - it was an objective test to see how much

better I was getting. When my doctor did the first test - at my first

appointment - he explained to me that it's a diagnostic test to see

where and how severe the pain is. After a couple months of treatment,

when going back, he noted, even if I didn't feel a big difference

(like sex still hurt a lot or jeans were absolutely impossible to

wear), there was a good chance that the q-tip test would show that the

area of pain was receeding a bit. And he was right... It slowly grew

smaller and smaller. It's still there right not, of course, since I'm

not " cured " , but it did provide a lot of reassurance that even if I

didn't see a lot of improvement in my day to day pain, it was clear

that the treatment WAS having an effect, and I just needed to be

patient.

> > > Wondering if allergy is the problem?

> Allergy may be part of the issue, I have inherited skin 'issues'

> that may be affecting the vulva skin too.

Well, it certainly played a part for me. My whole family has

allergies, and so do I. My doctor's theory relates to allergies and

seems to be holding true for me. His theory is that something

(doesn't know quite what... perhaps a gene variation combined with an

environmental trigger?) causes a large release of histamine in the

vulval skin. Histamine can cause pain - besides just itching. But it

also degrades the collagen, thinning the skin, bringing the nerves

closer to the surface of the skin, making them recieve more input when

they recieve any pressure. Additionally, the muscles tighten up in a

" protective " stance due to the pain. This causes yet more pressure -

and pain of it's own when the muscles get too tight. The additional

pressure releases yet more histamine, causing a nasty little cycle

that's a pain in the ass to get out of. Hence me being on

antihistamines to get rid of the histamine, estrace to thicken the

vulva skin and rebuild the collagen, and biofeedback/physical therapy

to retrain those muscles and stretch them out so they aren't in a

constant state of contraction. My first gyn tried just the estrogen

on me and I saw a little bit of improvement, but not much. But there

was definitely an improvement when using all three approaches at the

same time, so I definitely think that allergy plays a role in it.

Honestly, I want to get an allergy test for hormonal allergies,

because my allergies were much worse on the pill, but I've not gotten

very far on that yet. If you think it's an allergy/skin problem,

perhaps there's a dermatologist in your area that specializes in

gynecological dermatology? Some of the women on the board have

mentioned a few, and they're probably few and far between, but maybe

they'd be helpful?

> > > *Maybe if I had more of

> > > *a legitimate " 'til death do us part " mentality, I would have

> > > * worried more about it, but I didn't! :-) "

> What did he mean by this??

We wrote our own vows, and we didn't want to say " 'til death do us

part " . Neither of us are staunch foes of divorce or anything like

that. We both know that if it really really doesn't work and we can't

fix it, we can get a divorce. Additionally, while that doesn't mean

that either of us think of this relationship as anything other than

life-long (at this point in our life), we're young and not exactly

long-sighted. It's hard to internalize " 'til death do us part " at 23

years old. :-)

> I've kind of run out of questions but thanks againfor your input.

Thank you for asking so many questions. It's been so helpful to get

this down on " paper " and your questions have been so interesting to

think about too! :-) But now I have so much hope for improvement for

you!!!! :-)

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Dear

Will make the Physio appontment tomorrow as I got home from work too

late tonight....>

> There's a lot to

> be said - from a psychological perspective - for skin-skin contact,

> but that doesn't require any penetration. It _does_ require a

partner

> who doesn't _expect_ penetration as the end-all-be-all to the

> experience.

Yep. Haven't found one yet.

> " A Woman's Guide to Overcoming Sexual Fear and Pain " that goes

> through a number of exercises designed just for this sort of

thing.

Will look it up to buy. Sense I will need someone to practise

with..... :-(

> Then again, to continue your analogy, what about sexual practices

> that could be picked up that won't hurt you. There's a fair amount

of

> intimacy that can be obtained without intercourse at all.

Yes I know, and am fond of tehm however I haven't yet found someone

who doesn't think like you, that it isn't real sex!

Maybe some people who have

> had pain since day one and have had improvement can chime in and

give

> some words of advice that are more closely suited to your

situation.

> (Anyone? Please!!)

> I'd suggest reading through the past posts.

This will take forever!! (that's where I started but its hard to keep

things in context with so much info...) Wonder if it would possible

to make a list in the 'files' section of this group that every new

strategy can be listed on..... It would be a big list but it could

also be an inspiration. That is, people could print the list and

cross off each thing they've tried. Thus allowing us/them to see

progress even if not success.....

> A big frowny face and a big GRRRRR to all your insensitive, selfish

> partners who have done that two you. The Bastards! I don't mean

to

> male bash,

Perhaps you are making assumptions they were all males.. :-)

but I hate men like that. I promise you they aren't all

> like that, but it may be worth while to look at the type of men you

> typically go after and see if they have a tendency to behave that

way

> more than other demographic groups.

I'm a dork too! (you said earlier you were an applied Physicist. My

undergraduate degree was Geophysics, then I studied teaching and

taught as a high school teacher for 6 years.) All my partners have

been the University type, except for one police officer. So I'm not

sure it is easy to tell from the 'outside' of someone how they will

behave in a sexual arena. Even if you do 'know' them well. It is not

easy for me to predict at least...

Honestly, I don't understand why a man would

> still try to have sex with you if it hurt that much... I mean, if

you

> go out on a hiking trip, and you break your leg, does he say " Well,

> get up and walk, I don't want to wait for a rescue team " ?

One of my partners, when I reached the point of total exhaustion on a

hiking trip, stopped, made me a cup of tea, sat with me whilst I

drank it, then expected me to keep going. This has happened several

times. I hadn't made that connection either....

Just as I can't understand 'what all the fuss is about', trying to

have real sex, I guess some men/women can't understand why I don't

crave it as they do.

> If you think it's an allergy/skin problem,

> perhaps there's a dermatologist in your area that specializes in

> gynecological dermatology?

The local one of these is 600km away as well, that's who I have an

appointment with in April. Hopefully I can see the Physio and the

doctor during the same trip.

No more questions, thanks again to you and your husband.

Kind regards

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Whoohoo! :-) I'm glad you're giving it a try! :-) I'll let you

know if my home program gets me any additional improvement. (I just

picked up my biofeedback device last night.)

(And yep, I did assume they were all male, and wasn't that short

sighted of me! ;-) GRRR to ANY/ALL of them, regardless of genetic

profile, planet of birth, or type of car they drive! GRR GRR GRR! :-

))

Mmm... Geophysics. I took one class in it, and it was a lot of

fun! :-) Well, I certainly can't knock your taste in dates. ;-) But

I'm sorry they've been, well, GRRRR! :-)

It's been really great talking with you about this! So many things

to think about! :-)

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Hmm... I don't seem to have his address here... His name is Dr.

Bustillo and his number is . He's in Fountain Valley

(or at least he was last year...), oh, I can't remember the cross

streets... Brookhurst and ... something south of the 405... At the

Talbert Medical Offices...

> > > Hi :

> > >

> > > I just started PT today with at . It definitely is

> > > interesting, but she is very nice. I am wondering; I know that

> you

> > > go to Dr. Willems in La Jolla, but do you also have a more

local

> > > physician you go to? I'm still not sold on the doctor I went

to

> > > because she doesn't want to do a trial of antihistamines or

> > Estrace,

> > > but at least I got the PT going. I'm just wondering if you

have

> a

> > > local doctor who has now become more aware of treating

> vestibulitis

> > > after having you go to Dr. Willems. I hope you don't feel I'm

> > being

> > > nosey or intrusive. Thanks for any help you might be able to

> > give.

> > > JR

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Hmm... I don't seem to have his address here... His name is Dr.

Bustillo and his number is . He's in Fountain Valley

(or at least he was last year...), oh, I can't remember the cross

streets... Brookhurst and ... something south of the 405... At the

Talbert Medical Offices...

> > > Hi :

> > >

> > > I just started PT today with at . It definitely is

> > > interesting, but she is very nice. I am wondering; I know that

> you

> > > go to Dr. Willems in La Jolla, but do you also have a more

local

> > > physician you go to? I'm still not sold on the doctor I went

to

> > > because she doesn't want to do a trial of antihistamines or

> > Estrace,

> > > but at least I got the PT going. I'm just wondering if you

have

> a

> > > local doctor who has now become more aware of treating

> vestibulitis

> > > after having you go to Dr. Willems. I hope you don't feel I'm

> > being

> > > nosey or intrusive. Thanks for any help you might be able to

> > give.

> > > JR

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Thanks !!! :)

> > > > Hi :

> > > >

> > > > I just started PT today with at . It definitely

is

> > > > interesting, but she is very nice. I am wondering; I know

that

> > you

> > > > go to Dr. Willems in La Jolla, but do you also have a more

> local

> > > > physician you go to? I'm still not sold on the doctor I went

> to

> > > > because she doesn't want to do a trial of antihistamines or

> > > Estrace,

> > > > but at least I got the PT going. I'm just wondering if you

> have

> > a

> > > > local doctor who has now become more aware of treating

> > vestibulitis

> > > > after having you go to Dr. Willems. I hope you don't feel

I'm

> > > being

> > > > nosey or intrusive. Thanks for any help you might be able to

> > > give.

> > > > JR

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Thanks !!! :)

> > > > Hi :

> > > >

> > > > I just started PT today with at . It definitely

is

> > > > interesting, but she is very nice. I am wondering; I know

that

> > you

> > > > go to Dr. Willems in La Jolla, but do you also have a more

> local

> > > > physician you go to? I'm still not sold on the doctor I went

> to

> > > > because she doesn't want to do a trial of antihistamines or

> > > Estrace,

> > > > but at least I got the PT going. I'm just wondering if you

> have

> > a

> > > > local doctor who has now become more aware of treating

> > vestibulitis

> > > > after having you go to Dr. Willems. I hope you don't feel

I'm

> > > being

> > > > nosey or intrusive. Thanks for any help you might be able to

> > > give.

> > > > JR

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