Hollis' Kellogg app't report/long!

August 19, 2007

OK, here's my belated report on my appointment last Tuesday with

.

First of all, for those of you giving me tips on the logistics

of getting there and parking, thanks so much. Everything went

well: we allowed two hours to get from King of Prussia to

Graduate Hospital and even with taking the wrong exit and

wandering through downtown Philly, we arrived in an hour. It

was a gorgeous warm, dry, sunny day, so it was fun to do a

little unintended sightseeing. . . .

The first thing said when she entered the room was that,

based on the answers to the questionnaire, she really thought

my main problem was bladder, not vulvar (?!), and said that

i could be seen by the urologist (Whitmore) in the afternoon.

I agreed,though i really don't think my bladder is primary and

didn't see what it would accomplish really, since i have no

interest in using drugs and there's absolutely no way that

i would ever voluntarily subject myself to another cystoscopy.

However,on to the vulvar exam. . . .

After taking a Pap and yeast culture (without using a speculum)

and taking a few seconds to check things out up close and

personal with her magnifying head gear, she announced, " I

want you to have a biopsy. " To which i pretty much shrieked,

" NO, i don't want one! Why??? "

Much to my shock, she told me she thinks i might have Lichens

Planus and wanted to rule it out. Because i have so much

nerve/pain hypersensitivity with any kind of poking or prodding

and i really don't want to have a biopsy if at all possible,

we struck a deal: if, after 12 weeks of capsaicin therapy

(a top reason i wanted to see her, after ruling out things

like LS and LP that i was sure i didn't have. . .)she doesn't

see positive changes in my vascular situation, i have the

biopsy.

The q-tip test and the internal PF poking with her finger were,

in select locations, quite exciting, shall we say -- i practically

arched my back to the ceiling as i yelled, " a five! a five! "

Other spots, though, were not bad at all. I also got the

test where i was to tell her, as she placed a sensor at different

spots, when i first felt any vibration. There was another test

that she said she wouldn't do (i'm guessing a vaginal bio-feedback

sensor one)since she didn't think i could tolerate it. She

didn't do any STD testing, since she knew i was concerned about

what dealing with a speculum would do. But since i want to rule

everything out that can be ruled out, i'm going to ask her to

do that at my next visit.

Her conclusions, based on the exam, were:

1. She saw " changes to the vulvar architecture " (another shock

to me). When i asked what exactly, she showed me how the outer

labia is " collapsing " inward toward the inner one. Could have

fooled me, but as she pointed out, " How many vulvas have you

looked at??? " Good point.

2. Based on her magnified look and the results of the " vibration

sensing " test, she said i have EXTREMELY advanced vascular

somethingorother (I asked her to write the medical term down,

but it never happened; will get it next visit.), which she

described as extreme dilation of the capillaries along what

i think would be considered the Hart's line. Or maybe it's

further in toward the introitus. I've been aware of a pretty

consistent line of reddening in that area, but i honestly didn't

think it was that big a deal. According to her it is. She

said it's about the most extreme she's ever seen. Yikes.

3. The nerve threshold test (the vibration thing) confirmed

what i already knew. She told me, " It's not in your head. You

are EXTREMELY hypersensitive -- it's impressive! " This is

something i deal with body-wide and it is a result, most likely,

of long-term and long-untreated Lyme doing a real number on my

nerves/muscles in the form of extreme exercise-intolerant fibro

and inflammation.

's recommendations:

1. Capsaicin treatment, with it compounded in my beloved

emu oil. She looked me in the eye, though, and told me that

with my extreme vascular irriation it would, basically hurt

like hell at first and that she was going to start me at, not

..025%, but half of that: .0125% Sounds good to me.

2. Lidocaine 5% compounded in emu oil.

3. Singular taken in the a.m. I'm going to see if i can get

this compounded by my pharmacy, since my one attempt at taking

anti-histamines years ago triggered a bad bladder flare-up and

i had to stop.

4. A homeopathic topical anti-histamine treatment she's been

doing: crushing 10 BHI Trameel tablets to a fine powder, putting

it in emu or another oil and applying to the vestibule 3x/day.

Says she's getting good results with this.

I'll be returning in six weeks on Sept. 26 for the first application

of the capsaicin.

After all was said and done, she told me that she agreed with

my view that exploring the urology angle didn't make sense

(apparently she was impressed how good my urethra looked when

she poked around and dropped the idea that i see Whitmore.

She sees the vulvar problems as paramount and said that, to her

surprise, my PFD was only " moderate " and " all on the left. "

Felt that there was no way i could handle internal PT at this

point.

Which brings me to my last point:

To me, it wasn't a matter of whether or not this appointment was

going to send me into a serious, serious flare. It was just a

question of how many day, weeks, or months it would take for

things to calm down. I left with a water-filled frozen glove

to stave off what i thought would probably be a pain-filled

trapse through the aisles of the near-by Whole Foods to pick

up the Traumeel and just have fun checking out my first WF.

But to my utter, utter amazement, I NEVER HAD ANY PAIN TO

SPEAK OF AFTER 100X THE POKING AND PRODDING THAT HAS SET ME

OFF FOR WEEKS IN THE PAST! This is, to me, absolutely miraculous.

The only thing i can figure is that perhaps some of her internal

work released some of my bad trigger points. (It sure hurt

enough.) Got me, but i'm just so grateful. And mystified.

So, that's the story. I'm more than a little freaked, never

expecting the possible LP diagnosis, nor her classifying my

vascular stuff as being so extremely bad. Wish i had seen

her a few years ago instead of waiting until things had

advanced to this stage, but. . . at least i'm being proactive

at long last.

And, yes, IS great -- quite the character! I love the

fact that she's so open-minded and alternatively inclined --

as i am -- in her treatment options. I will join the other

people on the list in highly recommending her.

Hollis

August 19, 2007

Don't want to mix in and give bad advice. I would check however with another doctor to see if you indeed need a biopsy to confirm

LP. I was biopsyed 15 years ago and that finished me off. I had vulvodynia and it did not heal and had to have the surgery.

I don't want to scare you, just be careful about the biopsy. Millie

Millie,

I'm already extremely, extremely wary of the effects of a biopsy. . .so i'm

already scared! I do plan to get some other opinions on this. Thanks for

the cautionary tale.

Hollis

August 19, 2007

Don't want to mix in and give bad advice. I would check however with another doctor to see if you indeed need a biopsy to confirm

LP. I was biopsyed 15 years ago and that finished me off. I had vulvodynia and it did not heal and had to have the surgery.

I don't want to scare you, just be careful about the biopsy. Millie

Hollis' Kellogg app't report/long!

OK, here's my belated report on my appointment last Tuesday with.First of all, for those of you giving me tips on the logisticsof getting there and parking, thanks so much. Everything wentwell: we allowed two hours to get from King of Prussia toGraduate Hospital and even with taking the wrong exit andwandering through downtown Philly, we arrived in an hour. Itwas a gorgeous warm, dry, sunny day, so it was fun to do a little unintended sightseeing. . . .The first thing said when she entered the room was that,based on the answers to the questionnaire, she really thoughtmy main problem was bladder, not vulvar (?!), and said that i could be seen by the urologist (Whitmore) in the afternoon.I agreed,though i really don't think my bladder is primary anddidn't see what it would accomplish really, since i have no interest in using drugs and there's absolutely no way that i would ever voluntarily subject myself to another cystoscopy.However,on to the vulvar exam. . . .After taking a Pap and yeast culture (without using a speculum)and taking a few seconds to check things out up close andpersonal with her magnifying head gear, she announced, "I want you to have a biopsy." To which i pretty much shrieked,"NO, i don't want one! Why???" Much to my shock, she told me she thinks i might have LichensPlanus and wanted to rule it out. Because i have so muchnerve/pain hypersensitivity with any kind of poking or proddingand i really don't want to have a biopsy if at all possible, we struck a deal: if, after 12 weeks of capsaicin therapy (a top reason i wanted to see her, after ruling out thingslike LS and LP that i was sure i didn't have. . .)she doesn'tsee positive changes in my vascular situation, i have thebiopsy. The q-tip test and the internal PF poking with her finger were,in select locations, quite exciting, shall we say -- i practicallyarched my back to the ceiling as i yelled, "a five! a five!" Other spots, though, were not bad at all. I also got the test where i was to tell her, as she placed a sensor at differentspots, when i first felt any vibration. There was another testthat she said she wouldn't do (i'm guessing a vaginal bio-feedbacksensor one)since she didn't think i could tolerate it. She didn't do any STD testing, since she knew i was concerned aboutwhat dealing with a speculum would do. But since i want to ruleeverything out that can be ruled out, i'm going to ask her todo that at my next visit.Her conclusions, based on the exam, were:1. She saw "changes to the vulvar architecture" (another shockto me). When i asked what exactly, she showed me how the outerlabia is "collapsing" inward toward the inner one. Could havefooled me, but as she pointed out, "How many vulvas have youlooked at???" Good point.2. Based on her magnified look and the results of the "vibrationsensing" test, she said i have EXTREMELY advanced vascular somethingorother (I asked her to write the medical term down,but it never happened; will get it next visit.), which shedescribed as extreme dilation of the capillaries along whati think would be considered the Hart's line. Or maybe it'sfurther in toward the introitus. I've been aware of a prettyconsistent line of reddening in that area, but i honestly didn'tthink it was that big a deal. According to her it is. Shesaid it's about the most extreme she's ever seen. Yikes. 3. The nerve threshold test (the vibration thing) confirmedwhat i already knew. She told me, "It's not in your head. Youare EXTREMELY hypersensitive -- it's impressive!" This issomething i deal with body-wide and it is a result, most likely,of long-term and long-untreated Lyme doing a real number on mynerves/muscles in the form of extreme exercise-intolerant fibroand inflammation.'s recommendations:1. Capsaicin treatment, with it compounded in my belovedemu oil. She looked me in the eye, though, and told me thatwith my extreme vascular irriation it would, basically hurtlike hell at first and that she was going to start me at, not.025%, but half of that: .0125% Sounds good to me.2. Lidocaine 5% compounded in emu oil.3. Singular taken in the a.m. I'm going to see if i can getthis compounded by my pharmacy, since my one attempt at takinganti-histamines years ago triggered a bad bladder flare-up andi had to stop.4. A homeopathic topical anti-histamine treatment she's beendoing: crushing 10 BHI Trameel tablets to a fine powder, puttingit in emu or another oil and applying to the vestibule 3x/day.Says she's getting good results with this.I'll be returning in six weeks on Sept. 26 for the first applicationof the capsaicin.After all was said and done, she told me that she agreed withmy view that exploring the urology angle didn't make sense (apparently she was impressed how good my urethra looked whenshe poked around and dropped the idea that i see Whitmore.She sees the vulvar problems as paramount and said that, to hersurprise, my PFD was only "moderate" and "all on the left."Felt that there was no way i could handle internal PT at thispoint.Which brings me to my last point:To me, it wasn't a matter of whether or not this appointment wasgoing to send me into a serious, serious flare. It was just aquestion of how many day, weeks, or months it would take for things to calm down. I left with a water-filled frozen gloveto stave off what i thought would probably be a pain-filledtrapse through the aisles of the near-by Whole Foods to pickup the Traumeel and just have fun checking out my first WF.But to my utter, utter amazement, I NEVER HAD ANY PAIN TOSPEAK OF AFTER 100X THE POKING AND PRODDING THAT HAS SET MEOFF FOR WEEKS IN THE PAST! This is, to me, absolutely miraculous.The only thing i can figure is that perhaps some of her internalwork released some of my bad trigger points. (It sure hurt enough.) Got me, but i'm just so grateful. And mystified.So, that's the story. I'm more than a little freaked, neverexpecting the possible LP diagnosis, nor her classifying myvascular stuff as being so extremely bad. Wish i had seenher a few years ago instead of waiting until things had advanced to this stage, but. . . at least i'm being proactiveat long last.And, yes, IS great -- quite the character! I love thefact that she's so open-minded and alternatively inclined --as i am -- in her treatment options. I will join the other people on the list in highly recommending her.Hollis

August 19, 2007

Well, you know we want to help each other, not

give our horror stories, but I wish I had had

someone to help me, 15 years ago,

things were not so organized as now and I was

really alone. Good luck and let us know what

happens. Millie

Re: Hollis' Kellogg app't report/long!

In a message dated 8/19/2007 12:32:08 PM Eastern Daylight Time, mgoodman (AT) carr (DOT) org writes:

Don't want to mix in and give bad advice. I would check however with another doctor to see if you indeed need a biopsy to confirm LP. I was biopsyed 15 years ago and that finished me off. I had vulvodynia and it did not heal and had to have the surgery. I don't want to scare you, just be careful about the biopsy. Millie Millie, I'm already extremely, extremely wary of the effects of a biopsy. . .so i'm already scared! I do plan to get some other opinions on this. Thanks for the cautionary tale. Hollis

August 24, 2007

>

> OK, here's my belated report on my appointment last Tuesday with

> .

>

> First of all, for those of you giving me tips on the logistics

> of getting there and parking, thanks so much. Everything went

> well: we allowed two hours to get from King of Prussia to

> Graduate Hospital and even with taking the wrong exit and

> wandering through downtown Philly, we arrived in an hour. It

> was a gorgeous warm, dry, sunny day, so it was fun to do a

> little unintended sightseeing. . . .

>

> The first thing said when she entered the room was that,

> based on the answers to the questionnaire, she really thought

> my main problem was bladder, not vulvar (?!), and said that

> i could be seen by the urologist (Whitmore) in the afternoon.

> I agreed,though i really don't think my bladder is primary and

> didn't see what it would accomplish really, since i have no

> interest in using drugs and there's absolutely no way that

> i would ever voluntarily subject myself to another cystoscopy.

> However,on to the vulvar exam. . . .

>

> After taking a Pap and yeast culture (without using a speculum)

> and taking a few seconds to check things out up close and

> personal with her magnifying head gear, she announced, " I

> want you to have a biopsy. " To which i pretty much shrieked,

> " NO, i don't want one! Why??? "

>

> Much to my shock, she told me she thinks i might have Lichens

> Planus and wanted to rule it out. Because i have so much

> nerve/pain hypersensitivity with any kind of poking or prodding

> and i really don't want to have a biopsy if at all possible,

> we struck a deal: if, after 12 weeks of capsaicin therapy

> (a top reason i wanted to see her, after ruling out things

> like LS and LP that i was sure i didn't have. . .)she doesn't

> see positive changes in my vascular situation, i have the

> biopsy.

>

> The q-tip test and the internal PF poking with her finger were,

> in select locations, quite exciting, shall we say -- i practically

> arched my back to the ceiling as i yelled, " a five! a five! "

> Other spots, though, were not bad at all. I also got the

> test where i was to tell her, as she placed a sensor at different

> spots, when i first felt any vibration. There was another test

> that she said she wouldn't do (i'm guessing a vaginal bio-feedback

> sensor one)since she didn't think i could tolerate it. She

> didn't do any STD testing, since she knew i was concerned about

> what dealing with a speculum would do. But since i want to rule

> everything out that can be ruled out, i'm going to ask her to

> do that at my next visit.

>

> Her conclusions, based on the exam, were:

>

> 1. She saw " changes to the vulvar architecture " (another shock

> to me). When i asked what exactly, she showed me how the outer

> labia is " collapsing " inward toward the inner one. Could have

> fooled me, but as she pointed out, " How many vulvas have you

> looked at??? " Good point.

>

> 2. Based on her magnified look and the results of the " vibration

> sensing " test, she said i have EXTREMELY advanced vascular

> somethingorother (I asked her to write the medical term down,

> but it never happened; will get it next visit.), which she

> described as extreme dilation of the capillaries along what

> i think would be considered the Hart's line. Or maybe it's

> further in toward the introitus. I've been aware of a pretty

> consistent line of reddening in that area, but i honestly didn't

> think it was that big a deal. According to her it is. She

> said it's about the most extreme she's ever seen. Yikes.

>

> 3. The nerve threshold test (the vibration thing) confirmed

> what i already knew. She told me, " It's not in your head. You

> are EXTREMELY hypersensitive -- it's impressive! " This is

> something i deal with body-wide and it is a result, most likely,

> of long-term and long-untreated Lyme doing a real number on my

> nerves/muscles in the form of extreme exercise-intolerant fibro

> and inflammation.

>

> 's recommendations:

>

> 1. Capsaicin treatment, with it compounded in my beloved

> emu oil. She looked me in the eye, though, and told me that

> with my extreme vascular irriation it would, basically hurt

> like hell at first and that she was going to start me at, not

> .025%, but half of that: .0125% Sounds good to me.

>

> 2. Lidocaine 5% compounded in emu oil.

>

> 3. Singular taken in the a.m. I'm going to see if i can get

> this compounded by my pharmacy, since my one attempt at taking

> anti-histamines years ago triggered a bad bladder flare-up and

> i had to stop.

>

> 4. A homeopathic topical anti-histamine treatment she's been

> doing: crushing 10 BHI Trameel tablets to a fine powder, putting

> it in emu or another oil and applying to the vestibule 3x/day.

> Says she's getting good results with this.

>

> I'll be returning in six weeks on Sept. 26 for the first application

> of the capsaicin.

>

> After all was said and done, she told me that she agreed with

> my view that exploring the urology angle didn't make sense

> (apparently she was impressed how good my urethra looked when

> she poked around and dropped the idea that i see Whitmore.

> She sees the vulvar problems as paramount and said that, to her

> surprise, my PFD was only " moderate " and " all on the left. "

> Felt that there was no way i could handle internal PT at this

> point.

>

> Which brings me to my last point:

>

> To me, it wasn't a matter of whether or not this appointment was

> going to send me into a serious, serious flare. It was just a

> question of how many day, weeks, or months it would take for

> things to calm down. I left with a water-filled frozen glove

> to stave off what i thought would probably be a pain-filled

> trapse through the aisles of the near-by Whole Foods to pick

> up the Traumeel and just have fun checking out my first WF.

> But to my utter, utter amazement, I NEVER HAD ANY PAIN TO

> SPEAK OF AFTER 100X THE POKING AND PRODDING THAT HAS SET ME

> OFF FOR WEEKS IN THE PAST! This is, to me, absolutely miraculous.

> The only thing i can figure is that perhaps some of her internal

> work released some of my bad trigger points. (It sure hurt

> enough.) Got me, but i'm just so grateful. And mystified.

>

> So, that's the story. I'm more than a little freaked, never

> expecting the possible LP diagnosis, nor her classifying my

> vascular stuff as being so extremely bad. Wish i had seen

> her a few years ago instead of waiting until things had

> advanced to this stage, but. . . at least i'm being proactive

> at long last.

>

> And, yes, IS great -- quite the character! I love the

> fact that she's so open-minded and alternatively inclined --

> as i am -- in her treatment options. I will join the other

> people on the list in highly recommending her.

>

> Hollis

Have the biopsy, I did on my inner labia and did't feel a thing. They

numb you and that is that. Like you I am super sensitive in that area

because of the LP which is what the biopsy showed. After that, I use

the clob and very powerful steroid oinment when needed to control the

LP. it works for me, but you have to be very careful using it.

After the novacaine wore off from the biopsy I jsut had some burning

etc. Once you can get it under control, your life will be so much more

normal. Believe me, I have suffered with this for 40 years!!! It was

only in the last 5 years that I finally found a specialist to tell me

what I had.

Good Luck~

>

August 25, 2007