ERIN/ jolts at night and having a really hard time

[Guest guest]

nne,

How are they going to do botox in the clitoris? I

really hate this clitoral pain- i woke up this morning

and had that arousal feeling again which i've never

had in the morning- usually the mornings are when i

feel best, so now i think i'm getting worse.

wonderful.

erin

--- millburytimes wrote:

> - I just found out today that my best friend

> who has the clitoral

> shocks, and is a patient of Dr. Conway and Dr.

> Quesada will be getting Botox

> in hopes that it will help her. She is in pretty bad

> shape, so they are

> trying everything possible to help her. We don't

> know yet if Botox will be

> covered for this condition by her insurance company,

> but even if it isn't

> she will have it done anyway.

>

>

>

> nne

>

>

>

>

>

> From: VulvarDisorders

> [mailto:VulvarDisorders ] On Behalf

> Of euc1109 s

> Sent: Wednesday, February 06, 2008 8:53 AM

> To: VulvarDisorders

> Subject: RE: jolts at night and having a

> really hard time

>

>

>

> Thanks for everyone's input. I am one of Dr.

> Conway's patients and he does

> not think my nerve is entrapped (at least not severe

> enough to require

> surgery). I haven't talked to him about these yet,

> as they are relatively

> recent, but I am going to get another block in a

> couple of weeks and will

> talk to him about them then. While I don't know why

> I am having these, I

> hope that it means my nerve is starting to heal,

> since they're not painful.

> But, who knows....i doubt it, but I try to look on

> the positive side for

> some hope. I'm currently on medications but

> relatively low ones and if a

> few more different blocks don't help then Dr.

> Quesada is going to change my

> meds. I'm only 23 and pretty healthy- my nerves

> should be able to fully

> heal!!!!! (that's me looking on the positive

> side...usually I don't have

> any hope)

>

>

>

> erin

>

> millburytimes wrote:

>

> If you do a search for electric shocks or jolts on

> the pudendal.info site

> you will find a lot of information. It is called

> hyper-arousal syndrome. A

> very good friend of mine has this very severely. It

> was caused by the birth

> of her child - he should have been delivered by

> C-section, but the doctor

> let him sit with his head pressing on the pudendal

> nerve (near the clitoris)

> for too long. That was two years ago. Her shocks are

> so bad, that she can no

> longer drive as she jerks so badly she swerves off

> the road. She can have 30

> or more shocks during a 24 hour period, also while

> sleeping. They are

> extremely painful and can literally double her over.

> She has no other PN or

> vaginal symptoms. She is a patient of Dr. Conway and

> had pudendal

> decompression surgery five months ago, and still is

> not any better. Dr.

> Conway feels that she will improve with time, but

> (as with all PN surgeries)

> it can take up to two years.

>

> From: VulvarDisorders

> [mailto:VulvarDisorders ] On Behalf

> Of euc1109

> Sent: Monday, February 04, 2008 2:35 AM

> To: VulvarDisorders

> Subject: jolts at night and having a really

> hard time

>

> hi all,

>

> i'm having a very difficult time going to sleep

> right now and am on the

> verge of just losing

> every single ounce of hope. i think i am getting

> worse because lately when i

> go to bed

> and my body relaxes, i get these jolts into the

> clitoris. they don't hurt

> and i don't really

> know how to describe them, but they wake me up and

> eventually my nerves just

> end up

> feeling aroused and very stimulated. i don't know

> why i only get this at

> night, and it's not

> when i'm laying in bed watching tv, it's as i'm

> falling asleep. i have no

> idea what this

> means and have a feeling it's not good. does anyone

> else ever experience

> this?

>

> all in all i am just breaking down. i just keep

> thinking this is a horrible

> dream and that i

> just have to wake up, but it never happens. i'm only

> 23 and can't even

> fathom living the

> rest of my life like this. i feel like i've tried

> everything, and i don't

> even know what my

> problem is. at first i thought it was pudendal

> neuralgia but i'm questioning

> that lately.

> then i thought maybe it's lichen planus under the

> hood, but with these

> jolts/arousal

> feeling at night now, i'm not sure how that could be

> from lichen. i feel so

> alone through

> all of this. my friend and my mom knows about it,

> but i think they're tired

> of dealing with

> me and don't know what to say so i just don't talk

> to them about it anymore.

> i don't have

> a boyfriend to talk to about it, and don't see how i

> could ever start a

> relationship with this

> problem. i thought it was bad enough before, but now

> with these

> jolts/arousal like feeling

> at night it's getting hard for me to get any sleep,

> when sleep never used to

> bother me

> before, another reason that i think i'm getting

> worse. i know everyone on

> here has gone

> through times like this, but i just don't even know

> how to stay sane

> anymore. imagine

> trying to go to sleep and having jolts into your

> clitoris that end up making

> you feel

> extremely aroused that doesn't go away. sleep used

> to be my only time to

> escape but now

> i don't even have that anymore. i keep thinking that

> i don't understand how

> something

> that is used solely for pleasure is causing me so

> much pain and depression.

> i just feel like

> my life is over and for the next 50 years i'll be

> living in hell. i just

> keep pondering over

> why i get like this at night as i'm falling asleep

> and i've got nothing. i

> really don't think i

> can keep pushing along for much longer before i go

> into complete and utter

> depression,

> not to mention having a very difficult time

> sleeping.

>

> today's going to be a wonderful day at work and

> school, since i'm pretty

> sure i'll be in pain

> and will be exhausted from only getting a couple of

> hours of sleep, if any

> at all.

>

> erin

>

>

>

>

>

> _____

>

> Looking for last minute shopping deals? Find

>

<http://us.rd.yahoo.com/evt=51734/*http:/tools.search.yahoo.com/newsearch/ca

> tegory.php?category=shopping> them fast with Yahoo!

> Search.

>

>

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[Guest guest]

,

did Dr. Conway give you any other suggestions other than more blocks? Did he definitely

say you could not have the surgery? Did the EMG test show any compression at

all? Not that I am suggesting surgery - as I mentioned my friend had the PN surgery

for the exact same symptoms and she is a lot worse now. But her tests also

showed she was severely compressed. Dr. Conway has told her the same thing

about the nerve sending signals that it is getting better, but she is starting

on the blocks also including first the Botox, because she just can’t stand

it any longer. She takes a lot of narcotics, but they barely help, and it

interferes with her sleep also. She has her son in day care as she can’t

take care of him because of the pain. Dr. Conway says we have to be patient

that it takes a long time for nerves to heal. A month ago, I cried through my

whole appointment with him. It was really funny now, because he just kept

handing me tissues as he talked! LOL. But, I am better now – it has been

just six months, and he told me two years before I would be healed. I am

getting a series of five ganglion impar blocks to calm the pelvic nerves, in

hopes that it will quiet everything down. So I have to be patient, but it is very very hard. All of this

is such trial and error – what works for one doesn’t work for

another and vice a versus. Are you still going to Raquel? PT might help. I

started back with PT today and have appointments until the end of next

November. Raquel said my muscles were much better, not as tight as they were

before surgery. I know how you must feel, but try and forge ahead and do

everything possible that could help. Spend a lot of time talking to Dr. Q. also;

he has been so helpful to me. He will try and think of anything possible to

help you – he has been a saint for me – I have never met a doctor

like him. I have seen him once a month for almost two years now. Are you taking

any meds – that might get you through your work, school, etc? Any

narcotics? Also, sometimes a muscle relaxer will help you sleep or a valium. Both

of those helped me more than pain meds when the pain was really bad. And also,

the more you think about it, the worse it gets. Try some relaxation tapes. I know

if something is upsetting me at home, my pain really goes up. I am sure you are

worried about getting a job after graduation, and if you should move, etc. –

all of this is stressful and could cause the hyper-arousal. Don’t give

up, keep trying – there are still other things out there including the many

different kind of blocks. You are very lucky, you have the very best in medical

care, and something will work eventually. Just don’t give up. I wish I had

more suggestions for you – my prayers are with you if that helps at all.

nne

From:

VulvarDisorders [mailto:VulvarDisorders ] On

Behalf Of euc1109 s

Sent: Monday, February 11, 2008 9:05 AM

To: VulvarDisorders

Subject: Re: ERIN/ jolts at night and having a really hard time

nne,

Yes, please let me know how they do it and how it

goes. I just spoke with Conway this morning and he said that sometimes

after surgery people experience these electrical impulses which imply that the

nerve is sending signals on the path to getting better, but that he does not

think this is the case with me. he doesn't think i'm necessarily getting

worse, just that my symptoms are changing. i look at it as worse because

i still have the pain and now i have the electrical impulses and

arousal/hypersensitive feeling. I go back to Dr. Q next wednesday and i

think he's either going to try changing my meds or doing a hypogastric plexus

block or dorsal clitoral block. a few weeks ago i wasn't sure if i had

pudendal neuralgia, but after these new symptoms i think i do. i am very

discouraged though because the normal pudendal blocks did not help, which is

why we're trying other things. last time i went i had the ganglion impar

block to help with the hypersensitivity, but it didn't do anything. I'm

getting very discouraged, especially now that things are getting worse.

it's getting harder to focus on work, school work, sitting at work, sitting in

class, and especially sleeping. i don't sleep very well at all anymore

thanks to this. All in all, looks like i'm getting to the end of the road

with options, especially since they don't think surgery is an option for

me.

erin

millburytimes wrote:

,

I don’t know how they he do it, but as soon as she has it done I will

post all the details. I hope it works for her as she is in so much pain –

the electrical shocks are just terrible.

,

why don’t you call Dr. Conway and see what he thinks. Also, why

don’t you make an appointment with Dr. Quesada and ask him. I am in

the process of having a series of five ganglion of Impar blocks done. I have

had one already, and a second one next week. This was at the suggestion of Dr.

Conway, and Dr. Quesada does them. I still see both of the once a month, and

they both have been extremely helpful.

nne

From: VulvarDisorders [mailto:VulvarDisorders ]

On Behalf Of euc1109 s

Sent: Saturday, February 09, 2008 9:52 AM

To: VulvarDisorders

Subject: Re: ERIN/ jolts at night and having a really hard time

nne,

How are they going to do botox in the clitoris? I

really hate this clitoral pain- i woke up this morning

and had that arousal feeling again which i've never

had in the morning- usually the mornings are when i

feel best, so now i think i'm getting worse.

wonderful.

erin

--- millburytimes

wrote:

> - I just found out today that my best friend

> who has the clitoral

> shocks, and is a patient of Dr. Conway and Dr.

> Quesada will be getting Botox

> in hopes that it will help her. She is in pretty bad

> shape, so they are

> trying everything possible to help her. We don't

> know yet if Botox will be

> covered for this condition by her insurance company,

> but even if it isn't

> she will have it done anyway.

>

>

>

> nne

>

>

>

>

>

> From: VulvarDisorders

> [mailto:VulvarDisorders ]

On Behalf

> Of euc1109 s

> Sent: Wednesday, February 06, 2008 8:53 AM

> To: VulvarDisorders

> Subject: RE: jolts at night and having a

> really hard time

>

>

>

> Thanks for everyone's input. I am one of Dr.

> Conway's patients and he does

> not think my nerve is entrapped (at least not severe

> enough to require

> surgery). I haven't talked to him about these yet,

> as they are relatively

> recent, but I am going to get another block in a

> couple of weeks and will

> talk to him about them then. While I don't know why

> I am having these, I

> hope that it means my nerve is starting to heal,

> since they're not painful.

> But, who knows....i doubt it, but I try to look on

> the positive side for

> some hope. I'm currently on medications but

> relatively low ones and if a

> few more different blocks don't help then Dr.

> Quesada is going to change my

> meds. I'm only 23 and pretty healthy- my nerves

> should be able to fully

> heal!!!!! (that's me looking on the positive

> side...usually I don't have

> any hope)

>

>

>

> erin

>

> millburytimes

wrote:

>

> If you do a search for electric shocks or jolts on

> the pudendal.info site

> you will find a lot of information. It is called

> hyper-arousal syndrome. A

> very good friend of mine has this very severely. It

> was caused by the birth

> of her child - he should have been delivered by

> C-section, but the doctor

> let him sit with his head pressing on the pudendal

> nerve (near the clitoris)

> for too long. That was two years ago. Her shocks are

> so bad, that she can no

> longer drive as she jerks so badly she swerves off

> the road. She can have 30

> or more shocks during a 24 hour period, also while

> sleeping. They are

> extremely painful and can literally double her over.

> She has no other PN or

> vaginal symptoms. She is a patient of Dr. Conway and

> had pudendal

> decompression surgery five months ago, and still is

> not any better. Dr.

> Conway feels that she will improve with time, but

> (as with all PN surgeries)

> it can take up to two years.

>

> From: VulvarDisorders

> [mailto:VulvarDisorders ]

On Behalf

> Of euc1109

> Sent: Monday, February 04, 2008 2:35 AM

> To: VulvarDisorders

> Subject: jolts at night and having a really

> hard time

>

> hi all,

>

> i'm having a very difficult time going to sleep

> right now and am on the

> verge of just losing

> every single ounce of hope. i think i am getting

> worse because lately when i

> go to bed

> and my body relaxes, i get these jolts into the

> clitoris. they don't hurt

> and i don't really

> know how to describe them, but they wake me up and

> eventually my nerves just

> end up

> feeling aroused and very stimulated. i don't know

> why i only get this at

> night, and it's not

> when i'm laying in bed watching tv, it's as i'm

> falling asleep. i have no

> idea what this

> means and have a feeling it's not good. does anyone

> else ever experience

> this?

>

> all in all i am just breaking down. i just keep

> thinking this is a horrible

> dream and that i

> just have to wake up, but it never happens. i'm only

> 23 and can't even

> fathom living the

> rest of my life like this. i feel like i've tried

> everything, and i don't

> even know what my

> problem is. at first i thought it was pudendal

> neuralgia but i'm questioning

> that lately.

> then i thought maybe it's lichen planus under the

> hood, but with these

> jolts/arousal

> feeling at night now, i'm not sure how that could be

> from lichen. i feel so

> alone through

> all of this. my friend and my mom knows about it,

> but i think they're tired

> of dealing with

> me and don't know what to say so i just don't talk

> to them about it anymore.

> i don't have

> a boyfriend to talk to about it, and don't see how i

> could ever start a

> relationship with this

> problem. i thought it was bad enough before, but now

> with these

> jolts/arousal like feeling

> at night it's getting hard for me to get any sleep,

> when sleep never used to

> bother me

> before, another reason that i think i'm getting

> worse. i know everyone on

> here has gone

> through times like this, but i just don't even know

> how to stay sane

> anymore. imagine

> trying to go to sleep and having jolts into your

> clitoris that end up making

> you feel

> extremely aroused that doesn't go away. sleep used

> to be my only time to

> escape but now

> i don't even have that anymore. i keep thinking that

> i don't understand how

> something

> that is used solely for pleasure is causing me so

> much pain and depression.

> i just feel like

> my life is over and for the next 50 years i'll be

> living in hell. i just

> keep pondering over

> why i get like this at night as i'm falling asleep

> and i've got nothing. i

> really don't think i

> can keep pushing along for much longer before i go

> into complete and utter

> depression,

> not to mention having a very difficult time

> sleeping.

>

> today's going to be a wonderful day at work and

> school, since i'm pretty

> sure i'll be in pain

> and will be exhausted from only getting a couple of

> hours of sleep, if any

> at all.

>

> erin

>

>

>

>

>

> _____

>

> Looking for last minute shopping deals? Find

>

<http://us.rd.yahoo.com/evt=51734/*http:/tools.search.yahoo.com/newsearch/ca

> tegory.php?category=shopping> them fast with Yahoo!

> Search.

>

>

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