Re: WHY Vulvodynia, Vestibulitis, Lichen Sclerosus.?..my thoughts.

[Guest guest]

Dee, thank you for all the info, again. It was upon your advice that

several months ago I got compounded Estrace cream, Testosterone

(without methyl) cream and switched my oral HRT to Estrace. I am

still using them and I do believe it was helping and then I was having

half assed flare ups and used the tampon trick for a few days.

I could even wear loose knit cotton pants. Today I am in a long

skirt. Maybe I wore pants too many days.. I know it takes months

and months and I am sticking to it.

I think you have been so VERRRRY helpful to all of us and I, for one,

very much appreciate the time you put in especially since you are

cured and would not have to monitor this list serve at all.

Last month I got 1000 (literally) emails and I be 80-90% of them are

this and the New Jersey list serves that I am on. I use up so much

time at work. It is Sat now and I am in here trying to catch up.

Thanks again, Dee, stay with usl

>>> " Dee Troll " 02/23 6:21 PM >>>

Hi and all.

Just my opinion here believe me, but the conclusion that 'I' came to

after having this for ten years and doing all the research I could,

and I'm not kidding when I say sometimes 14 hrs or more a day

*chuckle* and still do even tho I've been cured now for almost two

years, but I came to the conclusion that if we don't have an

infection, whether Viral, bacterial, or fungal, in other words no

diseases were found, (My PH levels were fine as well) and there are

'NO' outside influences such as constant irritation perhaps from

allergies to soaps, clothing, scratching, even food, and even more so

certain medications like steroids or yeast meds or HPV treatments with

acids, in other words anything that would cause even " MORE " trauma to

the tissue, if we've eliminated all those possible causes, (and I sure

did, yes, I even cooked my panties in the microwave) I'd tried so many

things I quit counting, I figure there's just got to be another

explanation.

(sorry for such a long sentence haha)

I came to the conclusion after eliminating all the above possible

causes, that it may just be in the tissue itself so no matter what

goes over it, whether it's urine, blood, oxylates, even semen will

irritate it more.. but not be the 'cause' of it. In other words those

would be secondary and irritate us even much more. Think of a blister

and how even water can burn or irritate it, but again it's " not' the

cause. So if it's in the tissue what do we do?

I've been doing a lot of research on the biological end of all of

this as why our skin seems to rip, split, and tear, where the pain is

in the tissue itself and NOT inside but focused on the labial lips,

vestibule, and clitoral area. For those who have deeper pain I'm

certain most probably that is connected neurally to pain radiating

from other areas so what I'm going to say wouldn't be applicable.

That's important for you to know the difference and what I'm talking

about here.

What I've found and what finally turned everything around for 'me'

after ten years of excruciating pain, and I've been well now for

almost two full years was rebuilding the tissue back up, give it back

it's resiliency and then 'nothing' bothered me. I could eat and do

whatever I wanted to and still today I'm fine and haven't had a flare

up in all that time. Periods don't bother me either by the way and

they were hell before. I'm sincere when I tell you I'm totally back

to normal in all ways. *wink*wink*

My 'own' theory here is that the skin is lacking in receptors in the

vaginal area for Estrogen (Estradiol 17b) and possibly Testosterone as

well.

(for an excellent report on estrogen (estradiol 17b) see Fosbergs

article (very technical tho)

http://www.vulvarpain.icomm.ca/forsberg.html ( Dr Fosberg)

Also see

http://www.medicinehouse.com/guidepages/PRvulvodynia.html Dr. S.

Omoigui

Also see

http://www.vulvarpainfoundation.org/topical_estrogen_treatment.htm

Dr. J. Willems

and many more such as Drs. Metts, Goetch, Paavonen, Meffert (all very

well known in the field) and many more mention using Estrogen cream..

sometimes only one small line here and there, but it seems as though

it's overlooked quite often. But when I connected the thread and dots

it made sense to 'me'. It was my last resort before either suicide or

surgery*sigh* It's one of the few things known to rebuild tissue,and

even to unfuse labial lips which it did for me as well as make the

skin soft and pliable where it could stretch and have 'give' to it,

and not tear or rip.

I used an Estrace cream (a female hormone cream) made with Estradiol

17b, just like our own natural Estradiol 17b (and not Premarin) (by

the way my blood levels were fine so I wasn't lacking in it per se')

and found out it could be used for all ages and NOT just menopause as

typically very little is absorbed using it topically. I used only

small dabs at a time because it also irritated me initially, but

eventually as time went on it didn't. I had used 'just' the Estrace

cream for about 4 months and saw continuous slow but steady

improvement but it was very slow going as I was so bad I could not use

it often. Initially only once every 3-4 days then eventually more by

the 4th & 5th month probably 4-5 times a week. I kept researching

and found out something also about Testosterone.

Many study's show a lack or lessening of Testosterone (another

hormone) receptors in women with Lichen sclerosus a subset of

Vuvlodynia, some records state that up to 15% of all Vulvar Pain may

be LS and even some on this list might have it and not even know it,

not that there's much of a difference as treatments remain the same.

Though it 'sometimes' can be diagnosed with a biopsy yet not always!

One study from PUB med:

Re; Lichen Sclerosus

Conclusion: This study provides evidence for the loss of androgen

(T)

receptors with disease progression in both genital and extragenital

skin affected by lichen sclerosus. These findings support a hormonal

pathogenesis of lichen sclerosus and may be significant in the

treatment of the disease. (J Am Acad Dermatol.)

PMID: 10411409, UI: 99337216

Typically with LS they suggest using a steroid like Clobetasol

(minimally) to contain pain and hormones (testosterone) possibly to

rebuild tissue. I myself could not use a steroid, it was my worst

nightmare, but that is mainly because I had physicians who were so

ignorant that they kept me on them much much too long, but I'd use

soothing emolients, sitz baths, aveeno or salt baths, etc.. or over

the counter creams to soothe me meanwhile as the flares were still

very bad initially.

At this stage (4th month) besides using the Estrace cream I added a

natural Testosterone cream made with soy/yams for the next two months

(continuing with the Estrace cream) by the end of six months or so, I

was completely healed, and totally unfused and have been ever since as

I mentioned for two years now. I looked at it as though the Estrace

was feeding and nourishing and rebuilding that new tissue and the

Testosterone cream was toughening it so to speak.

In conclusion and I really apologize for the length of this, I know

this may not be the answer for 'many' or some may have tried it and it

didn't work, but I wonder to myself if they've tried it long enough.

I know it took me six full months to be restored. If you still have

this damn disease, *sigh* and tried both of these, then this is not

the treatment for you and I'm so so sorry, but I know many others have

been helped as well as myself. So for what it's worth I'm just

passing on what finally helped me and hope and pray it just 'might' be

your key as well. NO one should have to live with this pain and loss

of precious time, money, relationships, mental anguish as well as real

physical pain and I'm just hoping it 'may' help.

Warmest regards, dee~