Re: Pam

[Guest guest]

Pam,

How are you doing?

I am glad to see you found a good neurologist who has other options to try

before the surgery. Let me know how things are doing.

Bunny /| |\

. .

( ! )

_________________________________________________________________

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[Guest guest]

,

I'm hanging in there and still keeping the hope

that I will feel better soon.

[Guest guest]

Hi, Pam! Hope you don't mind me butting in here!

My doctor diagnosed my dysesthetic vulvodynia both by

my symptoms and by the thorough pelvic exam she gave

me. She pressed on all kinds of muscles in my vagina

(and later, my rectum), pressed on the tissue under my

sit bones (OW!), had me sit up and bend forward and do

other stuff so she could see if my pelvis was

asymmetric, and did all kinds of that sort of stuff to

see where I had asymmetry and high-tone pelvic

muscles. (I don't think everyone who has high-tone

pelvic muscles necessarily has to have pelvic

asymmetry - Tom? - but I did.) Believe me, at some

points during the exam I was yelling ouch! at the same

time I was blown away by the fact that simply pressing

on certain parts of my body could evoke such pain.

After her incredibly thorough exam, she diagnosed me

with pudendal nerve entrapment, pelvic floor

dysfunction/high-tone pelvic muscles, and SI joint

problems. Believe it or not, my MRI looked perfectly

normal for a 43-year-old. I have heard of some women

having an MRI that *did* show some abnormality, but

mine didn't. I remember my doctor talking with me

about the " slight bulging " of 2 discs, which she said

she would expect to see in a person of my age. But

she did warn me that I had to really take care of my

back, because the discs that were bulging (I can't

remember which two!) could press on the pudendal nerve

if they bulged out more. So if you have bulging discs

or some other abnormality, your MRI might enable your

doctor to pin down the source of your pain.

Regarding your rectal surgery, you may be on to

something. Remember, the pudendal nerve has a branch

that goes to the rectum. I wonder if it is possible

the nerve got touched or compressed or something

during your surgery(ies)? You really need a doctor

who can put all the pieces of your puzzle together for

you! I've been reading a lot about neuropathic pain

lately, and it is incredibly complicated. There is

just so much that medicine does not yet understand

about these sorts of pain, and the pain can act in

crazy ways that seem counter-intuitive to anyone who

knows the " normal " ways our body signals pain. sigh.

So, after all my yakking here... Even if your MRI

looks perfectly normal, that doesn't necessarily mean

you don't have some kind of neuropathic pain. You may

ultimately need to consult with someone who

specializes in neuropathic pain. If s/he had a deep

understanding of vulvodynia, that would be even

better, but at least s/he would understand the nature

of the pain and could perhaps nail down a diagnosis of

DV or not for you.

Take care, Pam.

Love,

Suzy

--- march301955 wrote:

> Rose,

> I also saw an neurologist who feels that my pain

> and constant burning is nerve related. The

> neurologist

> is having me have an MRI on the beginning of April.

> I am interested in how they were able to diagnose

> you having pudendal neuralgia by doing a rectal

> exam?

> I have had three rectal surgeries in the past and

> after

> the last surgery is when my burning and pain began,

> first rectally then moved on to the vulva and

> vaginal

> area. I have never had anyone in the medical field

> do a rectal exam on me since this all began and am

> now wondering if this is how pudendal neuralgia is

> confirmed? Sorry for all the questions, but I really

> think this could be part of my problem.

> Pam

>

>

>

>

>

__________________________________________________

[Guest guest]

Pam, nope you don't sound desperate. You just sound

like someone who needs to connect with the right

doctor/healer, and you're going about getting the

information you need! Here's 's phone number:

. When she is seeing patients in the

office, she usually cannot take phone calls because

she is so preoccupied. So you may have to leave your

number and have her call you back. She also always

responds to my faxes (fax # ).

attends all kinds of conferences, so she probably

knows a goodly number of the doctors who are treating

vulvar pain. There is also a woman in the office

named Marie who seems to know a lot of what's going

on. She's not one of the receptionists, and she's not

one of the medical professionals; she may be the

office manager. She is very nice, and perhaps she

would know of a doctor you can see.

Good luck, and LMK how you make out. You are in my

thoughts every day.

Love,

Suzy

--- march301955 wrote:

>

>

> Hi Suzy,

> No you are not butting in, I really appreciate

> all and any information that could lead to my

> geeting better. Sounds like you have such a

> great doctor you are seeing and very thorough.

> Well, here is my question, could you possibly

> give me 's number? I asked Rose also for

> her doctors number even though she lives in

> Ontario. I thought maybe just maybe one of

> them would possible know of someone here that

> could help me. I know I probably sound somewhat

> desperate but I am not giving up until I find

> some sort of relief, even if I have to search

> and search until I find help. I still have a lot

> living left to do in this middle age body!

>

> Hugs, Pam

__________________________________________________

[Guest guest]

Suzy and Pam,

You are correct...not everyone has asymmetry even they have high tone pelvic

muscles. If they are high toned equally on both sides..it is a tug of war and a

draw at that.

TKOPT

suzy fromage wrote:

> Hi, Pam! Hope you don't mind me butting in here!

> My doctor diagnosed my dysesthetic vulvodynia both by

> my symptoms and by the thorough pelvic exam she gave

> me. She pressed on all kinds of muscles in my vagina

> (and later, my rectum), pressed on the tissue under my

> sit bones (OW!), had me sit up and bend forward and do

> other stuff so she could see if my pelvis was

> asymmetric, and did all kinds of that sort of stuff to

> see where I had asymmetry and high-tone pelvic

> muscles. (I don't think everyone who has high-tone

> pelvic muscles necessarily has to have pelvic

> asymmetry - Tom? - but I did.) Believe me, at some

> points during the exam I was yelling ouch! at the same

> time I was blown away by the fact that simply pressing

> on certain parts of my body could evoke such pain.

> After her incredibly thorough exam, she diagnosed me

> with pudendal nerve entrapment, pelvic floor

> dysfunction/high-tone pelvic muscles, and SI joint

> problems. Believe it or not, my MRI looked perfectly

> normal for a 43-year-old. I have heard of some women

> having an MRI that *did* show some abnormality, but

> mine didn't. I remember my doctor talking with me

> about the " slight bulging " of 2 discs, which she said

> she would expect to see in a person of my age. But

> she did warn me that I had to really take care of my

> back, because the discs that were bulging (I can't

> remember which two!) could press on the pudendal nerve

> if they bulged out more. So if you have bulging discs

> or some other abnormality, your MRI might enable your

> doctor to pin down the source of your pain.

>

> Regarding your rectal surgery, you may be on to

> something. Remember, the pudendal nerve has a branch

> that goes to the rectum. I wonder if it is possible

> the nerve got touched or compressed or something

> during your surgery(ies)? You really need a doctor

> who can put all the pieces of your puzzle together for

> you! I've been reading a lot about neuropathic pain

> lately, and it is incredibly complicated. There is

> just so much that medicine does not yet understand

> about these sorts of pain, and the pain can act in

> crazy ways that seem counter-intuitive to anyone who

> knows the " normal " ways our body signals pain. sigh.

>

> So, after all my yakking here... Even if your MRI

> looks perfectly normal, that doesn't necessarily mean

> you don't have some kind of neuropathic pain. You may

> ultimately need to consult with someone who

> specializes in neuropathic pain. If s/he had a deep

> understanding of vulvodynia, that would be even

> better, but at least s/he would understand the nature

> of the pain and could perhaps nail down a diagnosis of

> DV or not for you.

>

> Take care, Pam.

>

> Love,

>

> Suzy

>

> --- march301955 wrote:

> > Rose,

> > I also saw an neurologist who feels that my pain

> > and constant burning is nerve related. The

> > neurologist

> > is having me have an MRI on the beginning of April.

> > I am interested in how they were able to diagnose

> > you having pudendal neuralgia by doing a rectal

> > exam?

> > I have had three rectal surgeries in the past and

> > after

> > the last surgery is when my burning and pain began,

> > first rectally then moved on to the vulva and

> > vaginal

> > area. I have never had anyone in the medical field

> > do a rectal exam on me since this all began and am

> > now wondering if this is how pudendal neuralgia is

> > confirmed? Sorry for all the questions, but I really

> > think this could be part of my problem.

> > Pam

> >

> >

> >

> >

> >

>

> __________________________________________________

>

[Guest guest]

Pam, don't feel stupid! You never know, maybe that

guy will remember what he overheard someday when he

meets a woman with vulvodynia, and he'll be

sympathetic. He's probably *still* wondering

about what he heard, though. I accidentally sent

an email to my hubby at work the other day, and

mentioned my vulvodynia in it - well, I *thought* it

went to my hubby. Instead, I sent it to his father's

email address (they have the same email name, just

different ISPs). hee, hee! My f-i-l has no idea that

I have vulvodynia. Good thing I didn't go into any

details! Hah! Anyway, he just silently forwarded the

stray message to my husband. I wonder if he's

been busy surfing the net trying to figure out what

vulvodynia is???

Have you had an MRI before? I had one in November,

and can clue you in as to what to expect if you've

never had one.

Take care.

Suzy

--- march301955 wrote:

> Hi Rose,

> When do you have your MRI? I was told that mine

> would

> last about an hour. I am having mine April 7th (on a

> Sunday, which is different but the nice part is that

> I don't have to take off work.

> I plan on calling the Wasser pain center on Thursday

> on

> my day off. I hate calling from work because I don't

> always

> have privacy when on the phone. I remember not to

> long a go

> being on the phone with the nurse, I was describing

> how the

> cream the doctor had prescribed had burned my inner

> thighs

> and I was going into detail how irritated and red my

> vulva

> was, I turned around and standing right behind me

> was the

> auditor from the bank. Poor young guy, his face was

> beat

> red not to mention how stupid I felt. Since then I

> try to

> be more discreet.

>

> Take care and let me know how your MRI goes.

>

> Hugs, Pam

>

>

>

>

>

__________________________________________________

[Guest guest]

I'll concur with that - my pelvic floor muscles are in high tone, but

according to my osteopath I don't have any pelvic or sacral

assymetry. Unless my osteopath is wrong about that, but he

seems very clued-up and thorough so i doubt it. Makes sense for

me because my problems were triggered very suddenly by an

incredibly itchy yeast infection - not slowly, or by a back injury or

anything. I think the yeast infection was just so severe that it

threw my muscles into spasm - all my neuromuscular

connections went completely haywire down there ...

The good news is that the biofeedback does seem to be helping

- after 5 months of it I am finally getting some improvement,

though I still have a way to go so no celebrations yet.

andrea

> Suzy and Pam,

> You are correct...not everyone has asymmetry even they have

high tone pelvic muscles. If they are high toned equally on both

sides..it is a tug of war and a draw at that.

> TKOPT

[Guest guest]

pam, What is neruopathic pain? Is this like pain with the nerves, and not just associated with the skin?

march301955 wrote: Seema,I forgot to add that yes it was Dr. onthat I was seeing in Milwaukee. I still feelshe is a good doctor, and she did help meget my skin tissue looking healthy, it's just so frustrating when you feel that adoctor is giving because they can't makeyou better. I am realizing that neuropathicpain is hard to treat.Take care, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Tracey, My skin tissue is healthy now with no

skin irritation but the burning is still there

plus I experience inner thigh burning. Sometimes

I wake up in the middle of the night and feel

like I am being electricuted through my whole

pelvic area and into my thighs, it's awful.

I only experience burning no itching. I have

been told by three physicians that my pain

is neuropathic pain, probably involving the

pudendal nerve. I hope this helps.

Hugs, Pam

PS I am not sure what the itching in the pubic

area could be caused from.

[Guest guest]

Pam,

Have any of them tried a block on that nerve ? Not only woulfdthat give you a dx but also would be treatment if it works! The Helena womens clinic in san did this kind of nerve block if you live close to there? What suggestion did they give you when they told you thats what they thought it was?

Daphne

Re: Pam

Tracey, My skin tissue is healthy now with noskin irritation but the burning is still thereplus I experience inner thigh burning. SometimesI wake up in the middle of the night and feellike I am being electricuted through my wholepelvic area and into my thighs, it's awful.I only experience burning no itching. I havebeen told by three physicians that my painis neuropathic pain, probably involving thepudendal nerve. I hope this helps.Hugs, PamPS I am not sure what the itching in the pubicarea could be caused from. *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Hi Pam,

Did you contact the Wasser Pain Clinic in Toronto yet?

Just curious.

Rose

----------

>

> To: VulvarDisorders

> Subject: Re: Pam

> Date: Wednesday, April 03, 2002 8:46 PM

>

> Tracey, My skin tissue is healthy now with no

> skin irritation but the burning is still there

> plus I experience inner thigh burning. Sometimes

> I wake up in the middle of the night and feel

> like I am being electricuted through my whole

> pelvic area and into my thighs, it's awful.

> I only experience burning no itching. I have

> been told by three physicians that my pain

> is neuropathic pain, probably involving the

> pudendal nerve. I hope this helps.

>

> Hugs, Pam

>

> PS I am not sure what the itching in the pubic

> area could be caused from.

>

>

>

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

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

> To post message: VulvarDisorders

> To Subscribe: VulvarDisorders-subscribe

> Unsubscribe: VulvarDisorders-unsubscribe

> List owner: VulvarDisorders-owner

>

> *****

[Guest guest]

Daphne, I have an appoinment with the pain

clinic on the 11th and will talk to them about

a block right to the nerve. I wonder if that

would be the same as the epidural into the

pudendel nerve? The pt at the pain clinic

said that may be an option for me. I also

am having an MRI this weekend so hopefully

that may shed some light into the situation.

Take care, Pam

[Guest guest]

Hi Rose,

I was planning on calling them but after

talking to the neurologist and my vv

specialists they both said that the

pain clinic I went to last week is one

of the best for pelvic floor problems,

so I ended up not calling them last week,

but I will probably still call them today

or tomorrow just get there opinion,

sure can't hurt.

Hugs, Pam

[Guest guest]

Hi Rose,

I was planning on calling them but after

talking to the neurologist and my vv

specialists they both said that the

pain clinic I went to last week is one

of the best for pelvic floor problems,

so I ended up not calling them last week,

but I will probably still call them today

or tomorrow just get there opinion,

sure can't hurt.

Hugs, Pam

[Guest guest]

Pam and anyone else with neuropathic pain,

You might just want to check this page out. The group is a really nice bunch and it is possible it could be helpful. Leah

Re: Pam

Tracey, My skin tissue is healthy now with noskin irritation but the burning is still thereplus I experience inner thigh burning. SometimesI wake up in the middle of the night and feellike I am being electricuted through my wholepelvic area and into my thighs, it's awful.I only experience burning no itching. I havebeen told by three physicians that my painis neuropathic pain, probably involving thepudendal nerve. I hope this helps.Hugs, PamPS I am not sure what the itching in the pubicarea could be caused from. *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Pam and anyone else with neuropathic pain,

You might just want to check this page out. The group is a really nice bunch and it is possible it could be helpful. Leah

Re: Pam

Tracey, My skin tissue is healthy now with noskin irritation but the burning is still thereplus I experience inner thigh burning. SometimesI wake up in the middle of the night and feellike I am being electricuted through my wholepelvic area and into my thighs, it's awful.I only experience burning no itching. I havebeen told by three physicians that my painis neuropathic pain, probably involving thepudendal nerve. I hope this helps.Hugs, PamPS I am not sure what the itching in the pubicarea could be caused from. *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Pam and anyone else with neuropathic pain,

You might just want to check this page out. The group is a really nice bunch and it is possible it could be helpful. Leah

Re: Pam

Tracey, My skin tissue is healthy now with noskin irritation but the burning is still thereplus I experience inner thigh burning. SometimesI wake up in the middle of the night and feellike I am being electricuted through my wholepelvic area and into my thighs, it's awful.I only experience burning no itching. I havebeen told by three physicians that my painis neuropathic pain, probably involving thepudendal nerve. I hope this helps.Hugs, PamPS I am not sure what the itching in the pubicarea could be caused from. *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Pam,

thats great that they are giving you that option, I hope it is the answer for you. If they do it and it works you have an answer if not no harm is really done. Its worth the try.

from what I was told they do the injection right into the nerve but you want to make sure you go somewhere that they have done alot of them , I guess it is a difficult nerve to hit??

keep us posted ,

Daphne

Re: Pam

Daphne, I have an appoinment with the painclinic on the 11th and will talk to them abouta block right to the nerve. I wonder if that would be the same as the epidural into thepudendel nerve? The pt at the pain clinicsaid that may be an option for me. I alsoam having an MRI this weekend so hopefully that may shed some light into the situation.Take care, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Pam,

thats great that they are giving you that option, I hope it is the answer for you. If they do it and it works you have an answer if not no harm is really done. Its worth the try.

from what I was told they do the injection right into the nerve but you want to make sure you go somewhere that they have done alot of them , I guess it is a difficult nerve to hit??

keep us posted ,

Daphne

Re: Pam

Daphne, I have an appoinment with the painclinic on the 11th and will talk to them abouta block right to the nerve. I wonder if that would be the same as the epidural into thepudendel nerve? The pt at the pain clinicsaid that may be an option for me. I alsoam having an MRI this weekend so hopefully that may shed some light into the situation.Take care, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

now be careful please, I have been told and read in alot of places that you should never get that p nerve cut, so please don't let them talk you into doing anything like that,

Traci

Re: Pam

Daphne, I have an appoinment with the painclinic on the 11th and will talk to them abouta block right to the nerve. I wonder if that would be the same as the epidural into thepudendel nerve? The pt at the pain clinicsaid that may be an option for me. I alsoam having an MRI this weekend so hopefully that may shed some light into the situation.Take care, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

now be careful please, I have been told and read in alot of places that you should never get that p nerve cut, so please don't let them talk you into doing anything like that,

Traci

Re: Pam

Daphne, I have an appoinment with the painclinic on the 11th and will talk to them abouta block right to the nerve. I wonder if that would be the same as the epidural into thepudendel nerve? The pt at the pain clinicsaid that may be an option for me. I alsoam having an MRI this weekend so hopefully that may shed some light into the situation.Take care, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Traci,

I think you miss understood what I meant,

I was talking about possibly having a epideral

to the pudendel nerve not having the nerve cut.

Do doctors actually do that? It sounds kind of

scary to me.

Pam

[Guest guest]

Dear Pam,

I posted the sites again...let me know if it doesn't work. Leah

Leah ?

Hi Leah,I didn't see the page that you mentionedfor neuropathic pain on your post. Couldyou post it again. Thanks a bunch.Hugs, Pam*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Hi Pam,

I was wondering - when you had the steroid injection, was it

injected into the nerve? I just read a site that talked about

pudendal neuralgia and it basically stated that the steroid must be

injected straight to the nerve. What kind of dye did they give you -

I had iodine when they did my CAT scan. It gave me a warm sensation,

almost like you feel the urge to urinate. But after the scan was

done, that feeling was gone.

I hope you are doing better. I'm doing miserable today. I just

don't feel like I have the strength to deal with this anymore. I very

much feel like I don't want to live anymore - I don't feel there is

any hope in my condition. What other doctors can I go to? I remember

when I went to the naturopath - I was hoping she would say it's

yeast!! But then, she told me this is definitely not yeast. That's

wonderful news - they kept telling me it's an autoimmune disease.

Well, why isn't anything working then? Why do I still have so much

pain? I am so tired of this that I just can't do it anymore. I want

to feel like a young woman again - instead, I feel like I'm 70. I

just don't know what to do anymore - but I can't keep on going on like

this, without any hope. Thanks for listening to my rant.

Love,

Seema

> Hi Seema,

> I still have yet to had a chance to research the neuro

> stim implant, I have been busy planning a bridal

> shower for my niece, but I plan on spending some

> quality time on the computer by the end of this

> week. Today I han my MRI, it was painless but I

> still didn't like it. I did get a bit anxious being

> in that tube for 2 1/2 hours. I'm hoping that

> it shows something that will shed some light on my

> situation. I should here back from the neurologist

> by the end of next week. I have noticed that I am

> having more then my usual urethra burning today and

> I am wondering if it could be from the dye that I had

> injected into my vein for the MRI?

>

> Take care, Pam

[Guest guest]

Yes Pam I would really like that. does really well out of all her

sessions for about 45 minutes and then needs a break. I'm hoping they will

accommodate her at school. I am trying not to focus on this until the IU

gives me more information. It's still there though.

G