Hello, I'm new here and so glad to have found this group

[Guest guest]

Hello all, after long searches through the non-cyber world, and

through many searches on the internet, I am very grateful to find

your group.(guess I'm just slow, huh?). Briefly, for over two

years, I have had severe UTI symptoms (often with no bacteria present

in the urine), pelvic pain and spasms and have seen the usual roundof

urologists, gynecologists, physicians, healthplan administrators, and

taken large amounts medications such as cipro; and have gone through

the resulting chronic yeast infections and diets associated with non-

yeast regimes.

Then about a year ago, my vulvar area became inflamed and my doctor

also found 2 small white lesions. I now have diagnoses of vin-1,

(vulvar intraepethial neoplasia), vulvar vestibulitis and possible

interstitial cystitis. What a case! I hardly believe it's me or

what it has done to alter my life. From reading through some of these

posts, I see that I don't have to tell you about the isolation,

relationship worries or resulting times of depression that come with

vulvar disorders Fortunately, the severe UTI symptoms have been

minimal for about 5 months now, which has helped me to stablize

myself and try to put forth more effort into learning about healing.

Unfortunately, I have the day to day inflammation, swelling and so

forth of vestibulitis.

On June 1, I see a gyn/oncologist and will schedule a procedure to

remove the vin-1. Since that is a pre-cancerous condition, I have to

act soon, since I have waited for over a year trying to heal myself

through the usual methods of traditional medicine, stress reductions,

etc. My pressing problem (for now, {{{smile}}}) is that the

gyn/oncologist suggests that I have a vestibulectomy at the same time

that he removes the vin-1 lesions (to remove the vv symptoms, not the

precancerous tissue).

The gyn called several of his patients who have undergone

vestibulectomies and asked them to call me. So far, (it has been

months) no responses. I need more information and haven't been

able to find it other than a few responses from other doctors who

tell me that it's a 50/50 deal—successful half the

time—and someone posted on the obgyn health site that

vestibulectomy is only successful for women who have POC vestibulitis

(point of contact pain caused by intercourse or tampons,--not the

vestibulitis that is burning all the time). I know most of you

probably know all these terms, but in case someone's new to this,

I'm explaining them. I've been to the vulvadynia site and the

University of Michigan site, which are both helpful but don't

mention

much about the after effects of vestibulectomy.

If any of you have information on what's happened to yourself or

others who have undergone a vestibulectomy, will you tell me about it?

Also, Dee, your posts on estrace/testosterone sound very encouraging.

I think the idea that we apply the estradiol topically because our

bodies are not supplying enough systemically to the vulvar area is a

sensible approach.(Did I get that right **smile**? I think I would

like to try using the creams, but I am not sure what to do.

Would you mind explaining—are there two creams that I need to

obtain?

Estrace (which contains the estradiol?) and a testosterone compound

also? Or is the testosterone contained in the estrace compound?

Sorry to be so dense. Also, Dee, during the six month period that led

to your wellness, did you alter or use anything else, such as use of

supplements, medicines, diet, exercise, alternative therapies?

Thanks for hanging in there and reading all this—if you're

like me, sitting at the computer is a painful experience.

Speaking of pain, I take 25 mg elavil and 1 mg lorazepam (at bedtime)

and pyridium and vicodin during flare-ups. The low dosage of elavil

causes some dry mouth and slight weight gain but helps me to live

with the vv pain. I also take some supplements I researched on my own

(which I will be glad to discuss if you want to know).

Last, I want to tell you that my regular doctor calls women with

vv " pioneers and brave people " (I'm not sure I want to be

either one, by the way). Last week she told me that she thinks that

vv, and its accompanying diseases might be due to a larger

picture—that somehow the immune system needs boosting. She has

recommended that I look into complementary medicine for help on that

too. Have any of you ideas on immune system boosters or info that you

have heard?

Thanks again for the long read--I would like to learn all I can and

to be of help to you with any information I have or find.

Blessings,

Dory