Introduction and At Wit's End -- L-O-N-G (my apologies)

[Guest guest]

Hello! My name is Leigh Ann. I'm 42 years old and live in Alabama.

If some of you have been on the lichen sclerosis page hosted by Dee,

you have read my story. I feel like I have been through the wringer

and today was the worst.

Here's a short history (ok, I just re-read it and it isn't so

short!!!): I started having vaginal pain about a year and a half ago.

At first I thought it was yeast (as I've had that before with no

itching, only burning) so I treated myself with an OTC medication.

Twice. Then I went to my doctor who gave me diflucan. Twice. I even

tried a home remedy of yogurt. Needless to say, that didn't work. My

doctor (family doctor) said that I may always have to take a diflucan

now and again throughout menopause to control yeast.

I wanted a second opinion since nothing really helped, so I went to my

gynecologist. The nurse practitioner there diagnosed bacterial

vaginosis. Twice. I used the medication she gave me to no avail. At

that point I got to see the gynecologist. She thought I had lichen

sclerosis and she did a biopsy. The biopsy came back showing only

inflammation. The gyn said that even though the biopsy didn't show LS

that she felt sure that is what I had and she was going to treat me

for that anyway. She gave me clobetesol. I wanted a better answer,

because " I'm going to treat you for this even though the test doesn't

confirm it " was not acceptable for me. I asked her to send me to the

best and she referred me to a oncologist-gynecologist.

The ON-GYN said it was not LS and to quit using the clobetesol. He

thought I had mild displaysia and he did another biopsy. The biopsy

returned showing only inflammation. The doctor said " I'm going to

treat you for mild displaysia even though the biopsy doesn't confirm

it because that is what I think you have. " At this point, I decided

to just go with it. He prescribed Aldara cream. If any of you have

ever used Aldara cream, you understand the intense pain and discomfort

it caused me. But I stuck with it in hopes it would stop the original

burn. It didn't.

At this point, I found a vulvar specialist 2 hours South of me. I

immediately made an appointment. This practice had 2 doctors and you

took turns seeing them. I saw the first doctor in October. He

diagnosed me with probable puendal nerve entrapment. I was given 2

medicines and told to sit on a special cushion. Always. So, I did.

After a while (2 months), I felt the medicine wasn't helping, so I

quit taking it. One of the medicines made me so sleepy that I

couldn't function. At my next appointment, I saw the other doctor in

the practice.

This doctor took one look and said " this is lichen sclerosis. " I

asked him if that was possible since it didn't show on the biopsy. He

assured me that it was. His treatment for LS is to take kenalog

(steriod) injections 3 times. He said I could quit taking all of the

other medicine. I got the first kenalog injection that day and was to

come back monthly for the next injections(3 total) . Which I did. In

the meantime, this doctor, the one who diagnosed LS got very sick with

cancer and took medical leave.

I decided to see a local dermatologist because I figured if it was LS

that she would be able to confirm it. She didn't confirm it. She

said that it looked like " red vulvar syndrome " and gave me a cream. I

opted to not use the cream and to continue with the vulvar specialist.

I was only looking for confirmation from her. She did do a patch

test and determined that I was allergic to fragrance. She said that

could be causing the syndrome and that I should avoid all fragrances.

I immediately went out and bought everything fragrance-free.

Make-up, lotion, kitchen soap, hand sanitizer... everything. I

thought I was using a good laundry detergent before (baby ivory) but

it had fragrance in it, so I had to go to something else.

My next visit I saw the original doctor. (the mid-injection was given

by the nurse practitioner). I told him I didn't think the kenalog

injections were helping, but he said " let's do this last injection and

complete the therapy and see what happens " which I did. I was to come

back in one month, but they didn't have any openings (due to the one

doctor being on medical leave) but they said they would call me back

when an appointment came open. This never happened.

After I got the last injection but before my next appointment, the

doctor who was on sick leave passed away. It became impossible to get

an appointment. The office called and told me that they were trying

to find a replacement doctor, but that in the interim it would take up

to six months (and maybe more) to get an appointment.

I set about finding another doctor. I found one in the same city (2

hours South) who is part of a noted major university with a medical

program. I made an appointment and faxed all my records. That

appointment was last month. I was a bit discouraged because the first

thing this doctor said was " let me tell you what we are willing to

do. " He said that he had read my records and that I had been through

the gamut of treatments and that he was willing to perform an exam and

see if he saw anything anyone else missed. I was a bit put-off, but I

agreed. He performed the exam and told me that everything looked

fine. He changed what he had said earlier and said that he was

willing to treat me because he thought he could help. He gave me

neurontin (which I had been given by the vulvar specialist and took

for 2 months before quitting) and told me to take it on an elevated

schedule. I was to take 300mg at a time and up it by 300mg as needed,

but not more than 900mg until I came back to see him in one month.

I did exactly as he said. To a " t " . I increased the medicine and was

finally taking 900mg spaced out through the day.

I had my second appointment this morning.

I arrived at 8:00 which was my appointment time. They did the usual

weight, b/p, etc. The nurse came in and asked me what medications I'm

taking (only the neurontin) and the dosage. Then she asked me how the

neurontin was doing. I told her that the first week or week and a

half that I felt as if it was going to help -- that I was having less

burning. But during the second week, the pain increased so I

increased the medicine as the doctor instructed. The third week the

pain increased more, so I increased the medicine to the 900 mg as he

instructed. I told her that I was burning more now than I was before

I started the neurontin (which is true!!!!). (Actually, this is the

worst burning I've had to date). The nurse left the room.

I sat in there and had the strangest feeling and the thought ran

through my head (literally)that this was not going to go well. I

don't know if it was based on how he acted at the first appointment or

what. Then I told myself to stop the negative thoughts, that it was

going to be fine. Then the doctor walked in.

He sat down and asked me how the medicine was working. I told him

exactly what I had told the nurse. Then he said, with this

condescending look on his face, that he didn't " understand the paradox

in my answer. " That he could NOT understand an increase in burn with

an increase in medication. He said that twice (I guess he was waiting

for me to say something - which I didn't. I mean, what was I going to

say???? I don't understand it either, but HE is the doctor.

Then he said that he had nothing more to offer me. Nothing. He was

totally out of options. I was incredulous! Of course this upset me

greatly. I tried to hold it together (and pretty much succeeded). I

told him that I didn't understand his response because he had said

things before about MRIs and nerve blocks at my first visit. He said

that HE didn't do nerve blocks, but " I will be glad to refer you if

that is what you want. " He didn't say " we've tried all we know to

try, now I'm going to refer you to someone who can do a guided nerve

block " . That would have been preferable. And, he actually said " I

thought you'd had a nerve block " to which I replied " no. " I thought

he read my records. At my first visit with him, he told me about 2

patients with unresponsive pain and he found spinal reasons for it.

He didn't mention this at all today. HE DIDN'T EVEN EXAMINE ME TO SEE

IF THERE WAS ANY CHANGE!!!!!!!

As I tried to hold it together, I told him that I had tried to find

the best doctors to help me... he interrupted me and said " we are the

best " and he went on to say that " on the positive side " I didn't have

a cancer or anything like that which would " shorten my life " . He said

" if we see a patient that has a headache, it is not as concerning as

if we see a patient with brain cancer that has a headache. " I

couldn't believe he was saying this to me.

I got my purse, stood up and told him " thank you for your time " and

fled the office. I mean FLED. I left him sitting there and didn't

even look back. I busted into tears the minute I was out of there. I

didn't even stop walking (running really) until I got almost to the

car. I was crying buckets by then and I cried almost the whole way

home. I'm all give-out now because I cried so much.

I don't know what to do now. I'm quitting the stupid medicine. I

don't know what else to do. I really really don't. I KNOW I am not

out of options, because I have not had an MRI to check to see if

anything is laying on my spine. I haven't had any kind of pelvic

floor therapy or even been considered for it. I never tried taking

diflucan on a weekly basis like I've read about. I am so upset and

feel that I have nowhere to turn. This was the most devastating morning.

I'm sorry to unload on all of ya'll at my 'introduction' post. I'm

heartbroken and devastated and at my wits' end. So, it's nice to meet

ya'll! I hope you don't find all this too overwhelming and kick me out!!!

Leigh Ann

[Guest guest]

Hi Leigh Ann,

You certainly get A+ for effort!!!!!

I wonder if the fact that what you have looks like

" Red Vulvar Syndrome " according to the one doc, means

that there is a whole rainbow of colored vulva

syndromes. Perhaps you should be relieved that it

isn't purple polkacotted syndrome.(Sorry, just being

sarcastic--terrible character defect of mine).

It occurs to me that this latest doc appointment was

the fact that he came to the conclusion that you were

actually just another woman who doesn't like sex or is

playing some kind of game with the medical system. He

certainly was acting cagey it seems. I often suspect

that the egos are so big that they can't even

entertain the notion that they don't have a clue what

is going on let alone admit it to anybody. It is

obvious to them that if all those things medical

science has done to you have failed, there obviously

isn't really anything wrong with you. (I will stop

venting now).

Keep looking and not necessarily in mainstream

medicine. Something is causing your problems. I would

guess it is an immune food reaction (not allergy) and

you are being poisoned by a food your body can't

tolerate. Or maybe a gastrointestinal problem. Crohn's

disease maybe. It happens.

Getting these things diagnosed in my opinion often

doesn't do very much good because much of it is wrong,

doesn't make sense and they can't fix it anyway as

they are wrong and treatments don't work. There are a

least two issues here--the most pressing is pain

control but the next is to try to find out what is

causing it.

I hope you can find some help here. Hang in as they

say.

Arline

--- tootsieroll22 leigh.ann@...> wrote:

> Hello! My name is Leigh Ann. I'm 42 years old and

> live in Alabama.

> If some of you have been on the lichen sclerosis

> page hosted by Dee,

> you have read my story. I feel like I have been

> through the wringer

> and today was the worst.

>

[Guest guest]

Leigh Ann,

It's great to have you!

I wish I had more help for you. I really think it sounds like you

need to see a better vulvar specialist and perhaps consider more

holistic treatment, perhaps a combination of oral and topical meds,

diet changes, physical therapy, etc. For many of us, treatment takes

many puzzle pieces and much trial and error, which I see you have

been going through. Your doctor reminds me of the 5 doctors I saw

before getting diagnosed with lichen planus (similar to lichen

sclerosis but rarer and more difficult to treat) - they all told me

that I needed to just relax, or masturbate more to become comfortable

with my body, or do kegels, blah blah blah. There is help out there

but I cried my own buckets of tears trying to figure it all out and

am still on the journey. I have learned not to count on doctors but

to learn all I can from these groups, then let the doctors know what

I would like to try based on research that I've done, because

honestly, they usually don't have a clue. =) You have ruled out MANY

things that don't work for you, you just have to keep working on what

might (with a doctor who is willing). Also really think you need to

get a diagnosis pinned down; if it's LS, then it's LS. Or you may

have more than one thing, but treatment is going to be difficult if

you don't have your diagnoses figured out. They thought I had

vaginismus...then DIV...finally LP - which caused the inflammation

that looked like DIV and the vaginismus. So LP it is - but it sure

took a long time to get there. Don't give up yet! It's ok to cry and

feel that way...but then pick up and move on with your treatment

plans with a doctor who isn't so ridiculous. Sometimes regular docs

are easier to work with than specialists, too - more willing to be

educated since they are less likely to think they know it all.

Melinda

[Guest guest]

Hi Leigh Ann, Welcome to the group! I wish I could say I am shocked regarding what all you have been through, *sigh*, but unfortunately, your story has a familiar ring to it. Have you looked into getting a pelvic floor evaluation? For some, tight pelvic floor muscles refer pain to the vestibule or bladder. Many of us have to use a combination of things to get well or keep the pain under control. For myself, my main issues are tight pelvic floor muscles and hormones. Be sure to check out all the info on the group homepage...and if you have any questions...just write in and hopefully someone will be able to help you. I wish I had all the answers for you...but please do not give up HOPE! Take Care, Chelle

[Guest guest]

THANKS everyone! It is tough, and I knew ya'll would understand. I

would be thrilled to get a definite diagnosis, but that seems out of

reach. I've tried for a year and a half now.

Here's what I'm thinking: I'm thinking about going back to my

gynecologist (the second doctor I ever say about this) and asking her

if she would be open to helping me out and if she would be open to

alternative treatments. I would mention the diflucan treatment, and

others I've read about. I would ask about biofeedback. I would ask

her about seeing a nutritionist regarding an elimination diet. I

would see if I could get her to work with me to figure this out.

Do any of you have any thoughts on this?

Thanks!

LA

>

> Hello! My name is Leigh Ann. I'm 42 years old and live in Alabama.

> If some of you have been on the lichen sclerosis page hosted by Dee,

> you have read my story. I feel like I have been through the wringer

> and today was the worst.

>

> Here's a short history (ok, I just re-read it and it isn't so

> short!!!): I started having vaginal pain about a year and a half ago.

> At first I thought it was yeast (as I've had that before with no

> itching, only burning) so I treated myself with an OTC medication.

> Twice. Then I went to my doctor who gave me diflucan. Twice. I even

> tried a home remedy of yogurt. Needless to say, that didn't work. My

> doctor (family doctor) said that I may always have to take a diflucan

> now and again throughout menopause to control yeast.

>

> I wanted a second opinion since nothing really helped, so I went to my

> gynecologist. The nurse practitioner there diagnosed bacterial

> vaginosis. Twice. I used the medication she gave me to no avail. At

> that point I got to see the gynecologist. She thought I had lichen

> sclerosis and she did a biopsy. The biopsy came back showing only

> inflammation. The gyn said that even though the biopsy didn't show LS

> that she felt sure that is what I had and she was going to treat me

> for that anyway. She gave me clobetesol. I wanted a better answer,

> because " I'm going to treat you for this even though the test doesn't

> confirm it " was not acceptable for me. I asked her to send me to the

> best and she referred me to a oncologist-gynecologist.

>

> The ON-GYN said it was not LS and to quit using the clobetesol. He

> thought I had mild displaysia and he did another biopsy. The biopsy

> returned showing only inflammation. The doctor said " I'm going to

> treat you for mild displaysia even though the biopsy doesn't confirm

> it because that is what I think you have. " At this point, I decided

> to just go with it. He prescribed Aldara cream. If any of you have

> ever used Aldara cream, you understand the intense pain and discomfort

> it caused me. But I stuck with it in hopes it would stop the original

> burn. It didn't.

>

> At this point, I found a vulvar specialist 2 hours South of me. I

> immediately made an appointment. This practice had 2 doctors and you

> took turns seeing them. I saw the first doctor in October. He

> diagnosed me with probable puendal nerve entrapment. I was given 2

> medicines and told to sit on a special cushion. Always. So, I did.

> After a while (2 months), I felt the medicine wasn't helping, so I

> quit taking it. One of the medicines made me so sleepy that I

> couldn't function. At my next appointment, I saw the other doctor in

> the practice.

>

> This doctor took one look and said " this is lichen sclerosis. " I

> asked him if that was possible since it didn't show on the biopsy. He

> assured me that it was. His treatment for LS is to take kenalog

> (steriod) injections 3 times. He said I could quit taking all of the

> other medicine. I got the first kenalog injection that day and was to

> come back monthly for the next injections(3 total) . Which I did. In

> the meantime, this doctor, the one who diagnosed LS got very sick with

> cancer and took medical leave.

>

> I decided to see a local dermatologist because I figured if it was LS

> that she would be able to confirm it. She didn't confirm it. She

> said that it looked like " red vulvar syndrome " and gave me a cream. I

> opted to not use the cream and to continue with the vulvar specialist.

> I was only looking for confirmation from her. She did do a patch

> test and determined that I was allergic to fragrance. She said that

> could be causing the syndrome and that I should avoid all fragrances.

> I immediately went out and bought everything fragrance-free.

> Make-up, lotion, kitchen soap, hand sanitizer... everything. I

> thought I was using a good laundry detergent before (baby ivory) but

> it had fragrance in it, so I had to go to something else.

>

> My next visit I saw the original doctor. (the mid-injection was given

> by the nurse practitioner). I told him I didn't think the kenalog

> injections were helping, but he said " let's do this last injection and

> complete the therapy and see what happens " which I did. I was to come

> back in one month, but they didn't have any openings (due to the one

> doctor being on medical leave) but they said they would call me back

> when an appointment came open. This never happened.

>

> After I got the last injection but before my next appointment, the

> doctor who was on sick leave passed away. It became impossible to get

> an appointment. The office called and told me that they were trying

> to find a replacement doctor, but that in the interim it would take up

> to six months (and maybe more) to get an appointment.

>

> I set about finding another doctor. I found one in the same city (2

> hours South) who is part of a noted major university with a medical

> program. I made an appointment and faxed all my records. That

> appointment was last month. I was a bit discouraged because the first

> thing this doctor said was " let me tell you what we are willing to

> do. " He said that he had read my records and that I had been through

> the gamut of treatments and that he was willing to perform an exam and

> see if he saw anything anyone else missed. I was a bit put-off, but I

> agreed. He performed the exam and told me that everything looked

> fine. He changed what he had said earlier and said that he was

> willing to treat me because he thought he could help. He gave me

> neurontin (which I had been given by the vulvar specialist and took

> for 2 months before quitting) and told me to take it on an elevated

> schedule. I was to take 300mg at a time and up it by 300mg as needed,

> but not more than 900mg until I came back to see him in one month.

>

> I did exactly as he said. To a " t " . I increased the medicine and was

> finally taking 900mg spaced out through the day.

>

> I had my second appointment this morning.

>

> I arrived at 8:00 which was my appointment time. They did the usual

> weight, b/p, etc. The nurse came in and asked me what medications I'm

> taking (only the neurontin) and the dosage. Then she asked me how the

> neurontin was doing. I told her that the first week or week and a

> half that I felt as if it was going to help -- that I was having less

> burning. But during the second week, the pain increased so I

> increased the medicine as the doctor instructed. The third week the

> pain increased more, so I increased the medicine to the 900 mg as he

> instructed. I told her that I was burning more now than I was before

> I started the neurontin (which is true!!!!). (Actually, this is the

> worst burning I've had to date). The nurse left the room.

>

> I sat in there and had the strangest feeling and the thought ran

> through my head (literally)that this was not going to go well. I

> don't know if it was based on how he acted at the first appointment or

> what. Then I told myself to stop the negative thoughts, that it was

> going to be fine. Then the doctor walked in.

>

> He sat down and asked me how the medicine was working. I told him

> exactly what I had told the nurse. Then he said, with this

> condescending look on his face, that he didn't " understand the paradox

> in my answer. " That he could NOT understand an increase in burn with

> an increase in medication. He said that twice (I guess he was waiting

> for me to say something - which I didn't. I mean, what was I going to

> say???? I don't understand it either, but HE is the doctor.

>

> Then he said that he had nothing more to offer me. Nothing. He was

> totally out of options. I was incredulous! Of course this upset me

> greatly. I tried to hold it together (and pretty much succeeded). I

> told him that I didn't understand his response because he had said

> things before about MRIs and nerve blocks at my first visit. He said

> that HE didn't do nerve blocks, but " I will be glad to refer you if

> that is what you want. " He didn't say " we've tried all we know to

> try, now I'm going to refer you to someone who can do a guided nerve

> block " . That would have been preferable. And, he actually said " I

> thought you'd had a nerve block " to which I replied " no. " I thought

> he read my records. At my first visit with him, he told me about 2

> patients with unresponsive pain and he found spinal reasons for it.

> He didn't mention this at all today. HE DIDN'T EVEN EXAMINE ME TO SEE

> IF THERE WAS ANY CHANGE!!!!!!!

>

> As I tried to hold it together, I told him that I had tried to find

> the best doctors to help me... he interrupted me and said " we are the

> best " and he went on to say that " on the positive side " I didn't have

> a cancer or anything like that which would " shorten my life " . He said

> " if we see a patient that has a headache, it is not as concerning as

> if we see a patient with brain cancer that has a headache. " I

> couldn't believe he was saying this to me.

>

> I got my purse, stood up and told him " thank you for your time " and

> fled the office. I mean FLED. I left him sitting there and didn't

> even look back. I busted into tears the minute I was out of there. I

> didn't even stop walking (running really) until I got almost to the

> car. I was crying buckets by then and I cried almost the whole way

> home. I'm all give-out now because I cried so much.

>

> I don't know what to do now. I'm quitting the stupid medicine. I

> don't know what else to do. I really really don't. I KNOW I am not

> out of options, because I have not had an MRI to check to see if

> anything is laying on my spine. I haven't had any kind of pelvic

> floor therapy or even been considered for it. I never tried taking

> diflucan on a weekly basis like I've read about. I am so upset and

> feel that I have nowhere to turn. This was the most devastating

morning.

>

> I'm sorry to unload on all of ya'll at my 'introduction' post. I'm

> heartbroken and devastated and at my wits' end. So, it's nice to meet

> ya'll! I hope you don't find all this too overwhelming and kick me

out!!!

>

>

>

> Leigh Ann

>