Almost all better (or as good as I'll get)! LONG post

August 13, 2008

This is a little premature, I know, but progress has been so good, I

wanted to post, because posts like this were inspiring to me when I

was at my worst with my vestibulitis, and hopefully it'll help someone

else stay strong.

Back story:

I've always had some pain with sex/tampon insertion, but it was never

bad enough for me to complain about. Until I entered college and

started bellydancing. I've had scoliosis since I was 12, and knew my

hips were uneven, but never gave it much thought, until my sophomore

year, when I started noticing that I was getting crampy and sore after

I finished dancing. I just chalked it up to not stretching properly

and ignored it, until it started affecting my sex life. It started

with a sharp, stabbing pain, and when I went to the on-campus gyno, I

was just told it was probably a blood clot and to lay off for a month.

So I did, and it didn't help. What started as a sharp, stabbing pain

turned into a searing, knife-like pain that left me sore, throbbing,

and sobbing after sex. When I had my annual a few months after the

pain was starting to reach it's peak, I mentioned the pain, and my

gyno (who I absolutely love) grabbed a Q-tip, poked me a couple of

times, and when I screamed, she sighed and told me I had vulvar

vestibulitis. She handed me some paper about it, told me to avoid

looking it up online because I'd lose hope, and gave me a prescription

of lidocaine gel. I joined this group the next day.

Treatments

It started with the lidocaine gel. I was told to apply it before

having sex, and at night before bed (I can't remember if it was in the

morning, too, but it seems like it). That stuff burned like unholy

hell, and only helped cut the pain from sex for maybe 2 seconds. I

used that stuff for a month, during which time the pain just got worse

and worse. So when I went back to the gyno, now worse off than

before, she gave me a prescription for amitryptaline. That stuff

knocked me on my ass, and I'd literally sleep 12 hours when I upped

the dose (i got up to 100mg/day), and sleep through alarms, phone

calls...you probably could have drop-kicked me in the head and I

wouldn't have woken up. This drug didn't help either, so after a few

months of that, I went off, and started seeing Dr. Hope Haefner at the

U of M (well, her partners...never actually got to see her, which is

my biggest complaint with her office). They poked and prodded me,

gave me some Neurotin and sent me on my way. It went HORRIBLY. I was

on that drug maybe a month, if that, because the side effects were so

god-awful. So I went back to the U of M, and they put me on an

amitryptaline-baclofen ointment, which I used twice a day.

Burning...oohh man, the burning. I cried every time I used it, esp.

the first few times.

The Breaking Point

During all the treatment, I had continued bellydancing, and my hips

were slowly getting worse and worse. I had started putting two and

two together that maybe my scoliosis was part of the reason I had the

vestibulitis, but every time I mentioned it to a doctor, I was

ignored. Eventually, my hips were deteriorating to the point where if

I had to stand for longer than half an hour, the muscles would start

to cramp. At the job I was working, i had a chair, so it wasn't as

big an issue. Until they took my chair away. I begged to have it

back, because my hips would hurt so bad, and squats weren't helping.

She refused, and one day, the cramping was so bad it lasted

(literally) hours, and let up about an hour before bellydance

practice. I made the mistake of going, partially because I was

teaching a class, and because we were learning a new dance, which was

a hip-hop fusion (if you don't know what hip-hop/bellydance fusion

is...it's a lot more exaggerated movements, and a LOT of hip work

that's sharp and complex). I felt my hips starting to cramp halfway

through teaching, but just pushed through. I made it 10 minutes into

the second class before giving up and limping out. I was in so much

pain, i wouldn't walk right, i couldn't get comfortable, i couldn't

breathe, or cry. So I went to the ER, and they gave me some pain

killers and muscle relaxers. That was the end for me. I went back to

the U of M after this, they gave me Lyrica, and told me to see a

physical therapist. The first one I saw was nice, but too gentle, and

the second one I saw, Kathy Duff in Lebanon, IN, was aggressive, but

confident. She didn't baby me, and encouraged me to push through the

pain, while giving me a ton of stretches to do at home. Eventually I

graduated to dilators, and the rest is history!

Now

I'm still not having entirely pain-free days, but those days are

usually when I forget to stretch. I can now hold my stretches for 2

minutes, which is great because before, 30 seconds was impossible. I

can touch my toes, and my hips are perfectly straight for the first

time in my life (which means my clothes fit funny, but I'm dealing,

haha). The dilators and I aren't getting along as well, because I

still have some problems with vaginismus and the dilators just

frustrate me, so I do manual stretching. I don't have nearly the

spasms and cramps I used to, and when I do, I know how to deal with

them. My current battle is to investigate whether or not I have

endometriosis, because my PT keeps finding adhesions places and

despite being on the pill, I still have cramps and discomfort with my

period, and tampons are still unpleasant (though I can use them

again-I was just on pads for the longest time, and i HATE pads. i

couldn't stop my period b/c the pills didn't work for that, and i have

a funky cycle to begin with), but it's all better! I've accepted that

I will never be 100%, that I'll always have to do stretches, that

there always be some pain, but I'll take 98% pain-free over 10% or

less, which was where I was at for months. Oh, and I'm off medication

for this completely-just stretches now! Tho the Lyrica worked the

best of anything I tried. And my fiance and I? Still together, and

stronger than ever. We took this tragedy and frustration and made it

into a joint battle, and we conquered it together. He drove me the 6+

hours to the U of M for appointments, sat with me in doctor's offices,

held me when I cried from the pain, and aside from one moment of

understandable frustration, never, ever pushed me or made me feel

guilty. So ladies, there ARE men (and women)out there who understand,

and won't run just because you're sick. There's hope!

My Advice

NEVER, EVER!!! stop pushing. Don't let doctors, family, ANYONE try to

blame this on you, to make you feel like you're exaggerating or being

a baby or making it up. Listen to your body, because it's telling you

what's wrong...just, decoding it takes some work. If I hadn't caught

on that my scoliosis was part of the problem (since no one else would

listen), I'd still be sitting in a doctor's office, dealing with quick

fixes that weren't fixing the root of the problem. You've got to be

the one who's strong, because while this journey is so hard, and can

be so painful and frustrating, if you stay strong and keep pushing

forward, people will have to listen. MAKE them listen. And remember

that groups like this are some of our best weapons-the advice,

strength, and support I got here is a HUGE part of what kept me going

This group is amazing, and I don't have any plans to leave, so you'll

still hear from me (that, and I'm not really as good as I can think,

but I'm definately almost to that top). You ladies are all so

fantastic, and I can't tell you how much your support has meant to

me!! Thank you so, so much, for everything.

Beth

August 13, 2008

Beth, I am glad you are doing better. I just wanted to ask if you were aware

that a lot of gluten sensitive/celiac people have scoliosis--because of the

inability to absorb nutrients?

Arline

>

> Subject: Almost all better (or as good as I'll get)! LONG post

> To: VulvarDisorders

> Date: Wednesday, August 13, 2008, 4:27 PM

> This is a little premature, I know, but progress has been so

> good, I

> wanted to post, because posts like this were inspiring to

> me when I

> was at my worst with my vestibulitis, and hopefully

> it'll help someone

> else stay strong.

>

> Back story:

> I've always had some pain with sex/tampon insertion,

> but it was never

> bad enough for me to complain about. Until I entered

> college and

> started bellydancing. I've had scoliosis since I was

> 12, and knew my

> hips were uneven, but never gave it much thought, until my

> sophomore

> year, when I started noticing that I was getting crampy and

> sore after

> I finished dancing. I just chalked it up to not stretching

> properly

> and ignored it, until it started affecting my sex life. It

> started

> with a sharp, stabbing pain, and when I went to the

> on-campus gyno, I

> was just told it was probably a blood clot and to lay off

> for a month.

> So I did, and it didn't help. What started as a

> sharp, stabbing pain

> turned into a searing, knife-like pain that left me sore,

> throbbing,

> and sobbing after sex. When I had my annual a few months

> after the

> pain was starting to reach it's peak, I mentioned the

> pain, and my

> gyno (who I absolutely love) grabbed a Q-tip, poked me a

> couple of

> times, and when I screamed, she sighed and told me I had

> vulvar

> vestibulitis. She handed me some paper about it, told me

> to avoid

> looking it up online because I'd lose hope, and gave me

> a prescription

> of lidocaine gel. I joined this group the next day.

>

> Treatments

> It started with the lidocaine gel. I was told to apply it

> before

> having sex, and at night before bed (I can't remember

> if it was in the

> morning, too, but it seems like it). That stuff burned

> like unholy

> hell, and only helped cut the pain from sex for maybe 2

> seconds. I

> used that stuff for a month, during which time the pain

> just got worse

> and worse. So when I went back to the gyno, now worse off

> than

> before, she gave me a prescription for amitryptaline. That

> stuff

> knocked me on my ass, and I'd literally sleep 12 hours

> when I upped

> the dose (i got up to 100mg/day), and sleep through alarms,

> phone

> calls...you probably could have drop-kicked me in the head

> and I

> wouldn't have woken up. This drug didn't help

> either, so after a few

> months of that, I went off, and started seeing Dr. Hope

> Haefner at the

> U of M (well, her partners...never actually got to see her,

> which is

> my biggest complaint with her office). They poked and

> prodded me,

> gave me some Neurotin and sent me on my way. It went

> HORRIBLY. I was

> on that drug maybe a month, if that, because the side

> effects were so

> god-awful. So I went back to the U of M, and they put me

> on an

> amitryptaline-baclofen ointment, which I used twice a day.

> Burning...oohh man, the burning. I cried every time I used

> it, esp.

> the first few times.

>

> The Breaking Point

> During all the treatment, I had continued bellydancing, and

> my hips

> were slowly getting worse and worse. I had started putting

> two and

> two together that maybe my scoliosis was part of the reason

> I had the

> vestibulitis, but every time I mentioned it to a doctor, I

> was

> ignored. Eventually, my hips were deteriorating to the

> point where if

> I had to stand for longer than half an hour, the muscles

> would start

> to cramp. At the job I was working, i had a chair, so it

> wasn't as

> big an issue. Until they took my chair away. I begged to

> have it

> back, because my hips would hurt so bad, and squats

> weren't helping.

> She refused, and one day, the cramping was so bad it lasted

> (literally) hours, and let up about an hour before

> bellydance

> practice. I made the mistake of going, partially because I

> was

> teaching a class, and because we were learning a new dance,

> which was

> a hip-hop fusion (if you don't know what

> hip-hop/bellydance fusion

> is...it's a lot more exaggerated movements, and a LOT

> of hip work

> that's sharp and complex). I felt my hips starting to

> cramp halfway

> through teaching, but just pushed through. I made it 10

> minutes into

> the second class before giving up and limping out. I was

> in so much

> pain, i wouldn't walk right, i couldn't get

> comfortable, i couldn't

> breathe, or cry. So I went to the ER, and they gave me

> some pain

> killers and muscle relaxers. That was the end for me. I

> went back to

> the U of M after this, they gave me Lyrica, and told me to

> see a

> physical therapist. The first one I saw was nice, but too

> gentle, and

> the second one I saw, Kathy Duff in Lebanon, IN, was

> aggressive, but

> confident. She didn't baby me, and encouraged me to

> push through the

> pain, while giving me a ton of stretches to do at home.

> Eventually I

> graduated to dilators, and the rest is history!

>

> Now

> I'm still not having entirely pain-free days, but those

> days are

> usually when I forget to stretch. I can now hold my

> stretches for 2

> minutes, which is great because before, 30 seconds was

> impossible. I

> can touch my toes, and my hips are perfectly straight for

> the first

> time in my life (which means my clothes fit funny, but

> I'm dealing,

> haha). The dilators and I aren't getting along as

> well, because I

> still have some problems with vaginismus and the dilators

> just

> frustrate me, so I do manual stretching. I don't have

> nearly the

> spasms and cramps I used to, and when I do, I know how to

> deal with

> them. My current battle is to investigate whether or not I

> have

> endometriosis, because my PT keeps finding adhesions places

> and

> despite being on the pill, I still have cramps and

> discomfort with my

> period, and tampons are still unpleasant (though I can use

> them

> again-I was just on pads for the longest time, and i HATE

> pads. i

> couldn't stop my period b/c the pills didn't work

> for that, and i have

> a funky cycle to begin with), but it's all better!

> I've accepted that

> I will never be 100%, that I'll always have to do

> stretches, that

> there always be some pain, but I'll take 98% pain-free

> over 10% or

> less, which was where I was at for months. Oh, and I'm

> off medication

> for this completely-just stretches now! Tho the Lyrica

> worked the

> best of anything I tried. And my fiance and I? Still

> together, and

> stronger than ever. We took this tragedy and frustration

> and made it

> into a joint battle, and we conquered it together. He

> drove me the 6+

> hours to the U of M for appointments, sat with me in

> doctor's offices,

> held me when I cried from the pain, and aside from one

> moment of

> understandable frustration, never, ever pushed me or made

> me feel

> guilty. So ladies, there ARE men (and women)out there who

> understand,

> and won't run just because you're sick.

> There's hope!

>

> My Advice

> NEVER, EVER!!! stop pushing. Don't let doctors,

> family, ANYONE try to

> blame this on you, to make you feel like you're

> exaggerating or being

> a baby or making it up. Listen to your body, because

> it's telling you

> what's wrong...just, decoding it takes some work. If I

> hadn't caught

> on that my scoliosis was part of the problem (since no one

> else would

> listen), I'd still be sitting in a doctor's office,

> dealing with quick

> fixes that weren't fixing the root of the problem.

> You've got to be

> the one who's strong, because while this journey is so

> hard, and can

> be so painful and frustrating, if you stay strong and keep

> pushing

> forward, people will have to listen. MAKE them listen.

> And remember

> that groups like this are some of our best weapons-the

> advice,

> strength, and support I got here is a HUGE part of what

> kept me going

>

> This group is amazing, and I don't have any plans to

> leave, so you'll

> still hear from me (that, and I'm not really as good as

> I can think,

> but I'm definately almost to that top). You ladies

> are all so

> fantastic, and I can't tell you how much your support

> has meant to

> me!! Thank you so, so much, for everything.

>

> Beth

August 18, 2008

Beth, I haven't checked my e-mail for a few days, but I wanted to tell you that I'm thrilled to hear your doing so much better! I remember when you were battling with your boss about needing a chair while at work, you pushed on and you ended up with the chair. Thanks, for this post it encourages me to stay strong and know there is a light at the end of the tunnel, even though at times, I become depressed and think I'll never get better.

**