my biopsy dilemma

[Guest guest]

NOTE: I know this is super long, but once i started writing. . .

I'm really upset about this whole thing and would really, really

appreciate any thoughts/info that anyone might have. Thanks!!

Here's the background:

After decades of bladder and, later, vulvar pain as well that waxed

and waned (and didn't get attended to because of other more pressing

health issues and because nothing i tried would help) i was finally

motivated to make an appointment with the vulvar specialist,

Kellogg-Spadt, in Philly last summer. I was involved with someone at

the time -- my first sexual relationship in decades after years of

serious ill-health which had dramatically improved enough to be able

to think about such things. . . . We took it slowly, didn't have

intercourse immediately, and after a few months were having great sex,

albeit with some occasional mild initial penetration pain and post-sex

irritation that were far outweighed by the bliss. This continued for

about a year and a half, but in February 2005, that all changed:

intercourse was suddenly far too painful to have and we stopped,

switching to non-penetrative sexual activities. It was the

threatened end of the relationship that finally got me to make the

appointment, which, sadly, didn't stop the relationship from

dissolving in July (for reasons not just having to do with the

sex stuff, though i feel that it definitely was a factor) after almost

four years.

At my intial -- and, to date, only -- appointment in August,

took one look at me and literally within seconds said, " I want to do a

biopsy. " She wasn't positive, but she felt i might have Lichens

Planus, which came as a shock, since from the little reading i had

done on it and Lichens Schlerosis, i really didn't think they were

possibilities. I shrieked, " No, i don't want one! " and we struck a

deal: if, after three months of capsaicin treatment (what i really

wanted to try and was really excited about doing) didn't improve

things, then i would agree to the biopsy. I got my capsaicin Rx from

her compounding pharmacist and waited for the follow-up appointment

the next month, when she would do the initial application to

double-check my reaction before i used it on my own.

Then in September, before the date of the appointment, i completely

freaked out one night when i realized that the lower portion of my

inner labia appeared to be fusing. Flaps that i would have

sworn had been there a short while ago just weren't anymore. . . .

Under normal circumstances i would have been in a rush to get back to

have her look at it, but things are never normal with me: i have very

severe reactive hyperacusis (collapsed tolerance to sound/can't handle

sounds that most people would consider fine) due to Lyme disease and

had had a horrible set-back triggered by a too loud and long phone

call earlier in the month. I hoped that i would improve enough to be

able to make the trip, but when it came to crunch time, i was still in

such ear/head agony that there was simply no way i could even

contemplate leaving my apartment to go cross town, let alone making a

two day, eight hour trip and all that would involve. I spoke

(painfully) to on the phone and she said that, from my

description, it did indeed sound as if i had one or perhaps

both of the Lichens, but that i was really " between and rock and a

hard place " because she absolutely required a biopsy before treatment.

She told me to continue with the estradiol i had been using

faithfully for over a year (sure didn't stop this from happening. . .

) and the Traumeel crushed into emu oil, which she claimed, though not

as potent as the steroids, could quell the inflammation. And suggested

that i reschedule for December (3 months later) and hope for the best

in the meantime. The capsaicin, she said, was now totally out.

Well, four months later, the fusion is still evident and is, from what

i can tell, progressing. Two rescheduled follow-up appointments had

to be re-rescheduled because of periods and/or a period which would

have come immediately after the biopsy, which i didn't want to deal

with during recovery. I now have yet another appointment coming up a

week from tomorrow, but am facing a huge dilemma that i hope any of

you who are still with me here can help with:

In the last week or so i've come to the realization that i REALLY,

REALLY DON'T WANT TO HAVE A BIOPSY AND DON'T KNOW WHAT TO DO.

This is not because i'm afraid of the pain that can be involverd with

and immediately after the procedure; i actually have a high pain

threshold and dealing with short-term pain isn't a big deal for me. (I

once had a tooth drilled for a filling without anesthetic at my

urging. My dentist thought i was nuts but did it.) My concern is what

would happen AFTER the procedure -- and into the future. Because of

the Lyme messing big-time with my nerves, i am now SUPER

hyper-sensitive. herself, when she conducted the test

that shows how quickly you can sense vibration at various points

around the vulva, said, " You're not imagining it. You are INCREDIBLY

hypersensitive! It's impressive!! " I already knew this. And the

more i think about it, the more convinced i am that having a biopsy

would be a terrible mistake.

Here are some examples of why i think this:

1. Years ago i had a nerve conduction study done on my leg. The pain

was so horrendous that i refused to have the second part of the study

done and it took days, with a lot of erratic spasming, before the

muscles and nerves calmed down. I was told that this was " highly

unusual. "

2. I later had a muscle biopsy done on my upper thigh. Besides the

fun of initially being cut into without any anesthetic (it didn't take

effect as it should have when it should have), i didn't recover the

way i was supposed to. I was told that most people go back to work

the next day. I spent weeks with my quadracep going into sudden

violent and painful spasm that would leave me unable to walk (This was

when i was still mobile; now i'm unable to walk much at all, largely

due to just this kind of hypersensitivity/muscle and nerve

intolerance). Not to mention the fact that it literally took years

for the scar to heal.

And closer to vulvar home. . .

3. Sometime last year, in a kind of oh why not mood, i tried Dee's

Q-tip swirl one night. What a terrible mistake that was! Almost

instantly i experienced throbbing, burning, shooting nerve pain that

intensified over the next hours. The following few days were absolute

hell and it took a good month before the severe nerve pain, which

included a bad bladder flare-up (with me, any irritation of the nerves

in one area of the pelvis will most likely activate nerves in another,

secondarily), subsided.

And, just as i was trying to convince myself that i really needed to

bite the bullet, think nice positive thoughts and just get the biopsy

done so i know what's happening, this happened last week:

4. In what was my second round of boric acid caps at night for the c.

Krusei infection that found, the oily capsule got waylaid and

wedged in a nook and cranny, requiring me to dig a little to pull it

out and get it realigned and properly inserted. Just that little bit

of fumbling and pressure it took to extricate it set everything

off yet again (the very same thing happened to me last year). I had

to stop using the caps since i couldn't bear to touch the area at all,

have had shooting pain, clitoral/vaginal pain and aching, and a lovely

bladder/urethral flare-up that still hasn't calmed down after a week.

5. And the one time i accidentally nicked myself very slightly on my

outer labia when trimming my pubic hair a few years ago, i went from

no pain to severe days of sharp shooting pain and throbbing aching.

So, the bottom line is that my body has very little tolerance for

being bonked, let alone cut into and can take a LONG, LONG, LONG time

to calm down when it does. This is the unfortunate result of decades

of undiagnosed and untreated (until recently) neurological Lyme

disease and is why i have acute sound and light sensitivity, as

well as why i can't lift more than a matter of ounces, if my arms

aren't supported, without horrendous pain and spasming. And when i

really think about what get a biopsy in my labia would mean i, who

usually doesn't freak out about medical procedures, am now freaking

out big-time.

I have contemplated faxing and asking her, given this history

and my fears, if there is ANY WAY she would be willing to make an

exception and forego the biopsy. I just don't think i can handle it

on top of all the other chronic pain issues i have and the fact that,

because i use a wheelchair and have limited standing ability,

the potential devastating effect it could have on my functioning for

who knows how long into the future. I realize that i may be

catastrophizing here and that maybe that recovery from a biopsy would

be far easier than i'm envisioning -- which is why i posted a few

weeks ago soliciting people's experiences, but in my heart of hearts

(and based on all my past experiences) i really don't think so. And

the stories of biopsies that HAVEN'T gone well and my unique

screwed up neurological responses have made me feel more and more

strongly that i just can't go through with it.

As a reality check, could anyone who's still reading this, tell me:

1. Has anyone experienced anywhere near the kind of way

out-of-normal-range pain reactions to something like a Q-tip swirl

that i've described? Has anyone here who has Lyme with neurological

involvement had a biopsy? What was your experience?

2. Is there ANY difference at all in how LP and LS is approached as

far as meds go???

3. For those of you who have had negative biopsies for LP or LS, did

your physician go ahead and treat you with steroids anyway, based on

your clinical symptoms?

4. I'm going to make some phone calls, but. . . Does anyone know any

other vulvar specialists in Philly or any other place in Pennsylvania

(or DC, for that matter) who treats LP/LS without requiring a biopsy?

I hate to have to postpone getting treatment even longer by having to

switch to another doctor if will not budge, but if she doesn't,

i'm afraid that's what i'll have to do.

Any or all comments/suggestions would be greatly appreciated. Thanks

for letting me vent at such great length!!

Hollis