Re: New to this group- some info about me

January 19, 2009

Hang in there...it was not until I was treated by Dr.Kamal Hamod in

Baltimore (he is with s Hopkins and specializes in vulvar pain)

that I saw any type of relief and felt hopeful about ever feeling

normal again. I would consider seeing him in addition to/or instead of

Dr. Marvel who I am sure is great too.

Good luck...you will feel relief when under the right care.

> Hello Everyone,

>

> I go by the name B. on Yahoo's groups. Some of you know me from

> Happy Pelvis (I recognize some of the names here!). I thought I'd

> introduce myself- I'm 27, live in Canada, and have suffered with 24/7

> vulvar pain since February 2007. More specifically, I have

> vestibulodynia and clitorodynia. I have tried many treatments

> (including various drugs and PT), but haven't had much relief thus

> far. I recently came to the conclusion that I may have a hormonal

> imbalance of some sort, as I've suffered increasingly severe PMS/PMDD

> for almost every month since February 2008- and I *never* had such a

> problem before I developed vulvodynia. I'm very often depressed and

> angry due to pain, but about ten to fourteen days before my period, I

> go into this crazy nutzoid rage that scares the living daylights outta

> my partner (he says it gets worse each cycle). I also get super-weepy

> at this time. Plus, my pain usually shoots up at this time, as does

> my vulvar dryness (which seems to affect me more often than not).

> Despite all this, my gyn refuses to test my hormones because I'm " too

> young " to have an imbalance. Total bs, IMO- these crazy symptoms are

> *not* normal.

>

> I am currently on a wait list for a pain clinic in Canada (the Wasser

> Pain Clinic in Toronto, to be exact). It will likely take until 2010

> to get in, so I'm thinking of going to see Dr. Marvel in Baltimore in

> the meantime (I've heard many good things about him). Unfortunately,

> there are no vulvar specialists where I live, so I have to travel

> ridiculously long distances for treatment. Being Canadian, I do not

> have U.S. health insurance, and must pay for everything out of my own

> pocket. I've spent over 15k already, and the only reason I can afford

> to spend more is because I sold my house last year! I'm very lucky to

> have cash reserves, but because there is really no guarantee that any

> treatment will work, I get all panicky that I will go broke before I

> experience pain relief. But if I want to be well, it seems I have to

> take financial risks (*sigh*).

>

> Emotionally, my disease has tested me to the maximum. I am unable to

> do many things because of pain. I cannot get married, hold down a

> job, exercise, wear panties comfortably, or have sex because I hurt so

> much. My gyn told me that I'd never be well, and I often wonder if

> she's right, as nothing has helped me, and no good docs exist where I

> live. In over 90% of the success stories I've seen, the individuals

> telling them were lucky enough to live close to good medical care. I

> don't, so it seems tnat statistically, my chance of recovery is next

> to zero (I hope I'm wrong about this!).

>

> Well, this is me in a nutshell. I apologize for all the negativity.

> I really hope that I can ultimately beat this crap, and be a

> fully-functioning human being again. If that ever happens, I will be

> eternally grateful. I would give just about anything to be

> vulvodynia-free- no joke. If anyone has any suggestions for me, feel

> free to pass them on! And likewise, if I have any ideas that may help

> anyone else here, I will let you know.

>

> Looking forward to getting to know all of you guys,

> B.

>

January 19, 2009

B.,

Have you tried any dietary interventions? Often, hormonal imbalances

can be helped by dietary changes and you can do that no matter where

you live. Just a thought...I had really irregular cycles until I went

gluten-free and then conceived a baby within a few months! Many people

who are gluten-intolerant have trouble with their hormones and various

body systems, as food intolerances can have a systemic effect. I am

considering, at some point, doing a gut-healing diet, but I haven't

had the willpower yet.

Melinda C.

January 19, 2009

Hello, and Melinda,

: Thanks for passing on the Dr. info. What you say about

receiving the right care is certainly important. Trouble is, I've had

a tough time accessing it.

Melinda: I've never tried any of the dietary interventions- mainly

because I haven't seen any scientific evidence that these work for the

majority of sufferers. I've never noticed flaring as a result of

eating specific foods. Also, my cycles are regular despite PMS, so I'm

not sure if going gluten-free will help me (I don't really know

anything about this diet).

B.

>

> B.,

> Have you tried any dietary interventions? Often, hormonal imbalances

> can be helped by dietary changes and you can do that no matter where

> you live. Just a thought...I had really irregular cycles until I went

> gluten-free and then conceived a baby within a few months! Many people

> who are gluten-intolerant have trouble with their hormones and various

> body systems, as food intolerances can have a systemic effect. I am

> considering, at some point, doing a gut-healing diet, but I haven't

> had the willpower yet.

> Melinda C.

>

January 19, 2009

Hi B.,I'm glad you joined us! Please don't think that you will never get better. I developed vulvar pain a loooong time ago, 17 yrs. ago to be exact, and I am much, much better today. My husband and I were just talking about that last night. Even though I live in the US and I have Insurance, I've spent a lot of money out of pocket and I've also had to travel often, too. But you know what? It's worth it when it means the difference between getting better or not. Please, please try to get your hands on a copy of Dr. Vliet's book. When you suspect something hormonal, her info is fantastic. I've learned so much from that book and used the info to seek out treatment (on hormones) for myself. Diet is definitely important to all of us, so I've decided to do my best to eat

healthy (and I'm still working on it). I'd say most of us could stand to eat more fresh fruits and veggies, and some meat (unless your vegan;-), and cut back on the processed food! I have found that my thyroid is playing a role in my hormonal issues. Have you ever taken the birth control pill? Are you on it at the moment? While the pill will not lead to vulvar painfor every woman, there are 'some' of us that it will cause vulvar pain. I am one of the ones it effected.If you will use the search box on the homepage you can type in any keys words you'd like and see what you can find on hormones! If you have any specific questions, I'll do my best to help. I haven't seen Dr. Marvel myself, but I know others have and hopefully they will chime in. I'll send in some articles and such and self help suggestions that I hope will help you. Just know you are not alone...and it

is not impossible to overcome this. Though you feel discouraged, it's very important to tell yourself that you WILL get better! ;-) Big Hugs and Welcome!Chelle

January 19, 2009

, would you mind adding Dr. Hamod's contact info to the Database on the homepage? The more practitioners we can list (who are worth our time and money), the better! ;-) Chelle

January 19, 2009

Hi Chelle,

Thank you, as always, for your compassion towards me.

re: Vliet's book: I've actually started to read it already. Haven't

gotten too far, so I'll need to do more reading (looks a bit like a

" heavy " read to me).

Re: the pill: no, I am not on it. I was on it for a month in summer

2008 (upon a doc's suggestion for PMS). But, knowing what it can do

to women with vulvar pain, I didn't want to stay on it. I had never

taken the BCP prior to getting sick.

I hear you about the travel thing. I agree that if it works, it's

worth it. But, because $$$ is finite, there's a lot of pressure for

me to get a treatment option " Right the first time " , if you kwim. If

I felt confident that something could work for me, I'd be less

paranoid over spending money.

I look forward to learning any more info on Dr. Marvel. I would

imagine he's much cheaper than a doc like Goldstein, and I've heard

he's very thorough. Hopefully, he has some familiarity with the

impact of female hormone issues on vulvar pain.

Glad to hear you're doing better.

B.

>

> Hi B.,

>

> I'm glad you joined us! Please don't think that you will never get

better. I developed vulvar pain a loooong time ago, 17 yrs. ago to be

exact, and I am much, much better today. My husband and I were just

talking about that last night.

>

> Even though I live in the US and I have Insurance, I've spent a lot

of money out of pocket and I've also had to travel often, too. But

you know what? It's worth it when it means the difference between

getting better or not.

>

> Please, please try to get your hands on a copy of Dr. Vliet's book.

When you suspect something hormonal, her info is fantastic. I've

learned so much from that book and used the info to seek out treatment

(on hormones) for myself.

>

> Diet is definitely important to all of us, so I've decided to do my

best to eat healthy (and I'm still working on it). I'd say most of us

could stand to eat more fresh fruits and veggies, and some meat

(unless your vegan;-), and cut back on the processed food!

>

> I have found that my thyroid is playing a role in my hormonal

issues. Have you ever taken the birth control pill? Are you on it at

the moment? While the pill will not lead to vulvar pain

> for every woman, there are 'some' of us that it will cause vulvar

pain. I am one of the ones it effected.

>

> If you will use the search box on the homepage you can type in any

keys words you'd like and see what you can find on hormones! If you

have any specific questions, I'll do my best to help.

>

> I haven't seen Dr. Marvel myself, but I know others have and

hopefully they will chime in. I'll send in some articles and such and

self help suggestions that I hope will help you. Just know you are

not alone...and it is not impossible to overcome this. Though you

feel discouraged, it's very important to tell yourself that you WILL

get better! ;-)

>

> Big Hugs and Welcome!

> Chelle

>

January 19, 2009

-B.,

There is little scientific evidence on any diet working for people,

because it costs money to study these things, and most studies are

funded by drug companies - and no drug company is gonna fund a study

on a diet (because that doesn't make them any money!!). Just a thought. =)

Melinda

January 19, 2009

karen,

did you do physical therapy?

CA Good Credit Score is 700 or Above. See yours in just 2 easy steps!

January 19, 2009

Hi, I definitely feel your pain; I'm 25 and was diagnosed last year after literally having months where I could not do much more than get out of bed to pee because the pain was so incredibly intense. I went to Dr. Marvel and he helped me so much! When you call the office they send you a 20-page questionnaire to fill out and you send them your medical records as well and everything gets entered into the computer there so they have a thorough history on you. I found Dr. Marvel to be really thorough and he helped me immensely; I've been 99% pain-free for almost 4 months now! I was diagnosed with pudendal neuralgia (basically, nerve pain in pelvic area) and I'm now on Cymbalta and using topical Estrace cream, as I also had atrophic vaginitis. I was on low-hormone birth control which really screwed up my system; hormones have a huge effect on our bodies and when they are out of whack it can really screw everything up.

Have you read The V Book by ? There's a lot of good info in there and it's available on Amazon.com and I've seen it at and Noble as well. Good luck and you can beat this!!! Let me know if you have any more questions about anything I've mentioned.

Hello Everyone,

I go by the name B. on Yahoo's groups. Some of you know me from

Happy Pelvis (I recognize some of the names here!). I thought I'd

introduce myself- I'm 27, live in Canada, and have suffered with 24/7

vulvar pain since February 2007. More specifically, I have

vestibulodynia and clitorodynia. I have tried many treatments

(including various drugs and PT), but haven't had much relief thus

far. I recently came to the conclusion that I may have a hormonal

imbalance of some sort, as I've suffered increasingly severe PMS/PMDD

for almost every month since February 2008- and I *never* had such a

problem before I developed vulvodynia. I'm very often depressed and

angry due to pain, but about ten to fourteen days before my period, I

go into this crazy nutzoid rage that scares the living daylights outta

my partner (he says it gets worse each cycle). I also get super-weepy

at this time. Plus, my pain usually shoots up at this time, as does

my vulvar dryness (which seems to affect me more often than not).

Despite all this, my gyn refuses to test my hormones because I'm " too

young " to have an imbalance. Total bs, IMO- these crazy symptoms are

*not* normal.

I am currently on a wait list for a pain clinic in Canada (the Wasser

Pain Clinic in Toronto, to be exact). It will likely take until 2010

to get in, so I'm thinking of going to see Dr. Marvel in Baltimore in

the meantime (I've heard many good things about him). Unfortunately,

there are no vulvar specialists where I live, so I have to travel

ridiculously long distances for treatment. Being Canadian, I do not

have U.S. health insurance, and must pay for everything out of my own

pocket. I've spent over 15k already, and the only reason I can afford

to spend more is because I sold my house last year! I'm very lucky to

have cash reserves, but because there is really no guarantee that any

treatment will work, I get all panicky that I will go broke before I

experience pain relief. But if I want to be well, it seems I have to

take financial risks (*sigh*).

Emotionally, my disease has tested me to the maximum. I am unable to

do many things because of pain. I cannot get married, hold down a

job, exercise, wear panties comfortably, or have sex because I hurt so

much. My gyn told me that I'd never be well, and I often wonder if

she's right, as nothing has helped me, and no good docs exist where I

live. In over 90% of the success stories I've seen, the individuals

telling them were lucky enough to live close to good medical care. I

don't, so it seems tnat statistically, my chance of recovery is next

to zero (I hope I'm wrong about this!).

Well, this is me in a nutshell. I apologize for all the negativity.

I really hope that I can ultimately beat this crap, and be a

fully-functioning human being again. If that ever happens, I will be

eternally grateful. I would give just about anything to be

vulvodynia-free- no joke. If anyone has any suggestions for me, feel

free to pass them on! And likewise, if I have any ideas that may help

anyone else here, I will let you know.

Looking forward to getting to know all of you guys,

B.

January 19, 2009

Also, have you thought about getting some sort of international health insurance? I googled the term " international health insurance " and came up with these sites that might be helpful:http://www.internationalcitizens.com/

http://www.worldwidemedical.com/These companies seem to be geared more towards U.S. citizens but I imagine there would something similar available for Canadian citizens who travel abroad as well.