Questions/Experience Poll

[Guest guest]

Hullo all! So, I've garnered a lot of information here about different

treatment options and

success rates, but I'm trying to consolidate it all and relate it to what kind

of vulvar issues

were being experienced, to try and make some links between what treatments work

best

for what issues. This will help me understand more about my problems, and talk

to my

doctor more clearly--and I think it will also be a good resource for everyone

else here.

So I'd like to know what form of vulvar pain you were experiencing--whatever

information

you can think of, from specific diagnoses (ls, etc) to descriptions (tearing,

thinning of

tissues, inflammation, itching). Then I'd like to know what treatments you've

tried

(antidepressants, estrace, stopping birth control, surgery, etc.), and how

they've affected

you. And, if you feel like it, which ones you would recommend most.

For myself, I've just been diagnosed as having vulvar vestibulitis. Except

after a yeast

infection (I've had two in the past year), when the pain is increased, my pain

is only on

contact, mostly in the 5-7 o'clock areas. It's a stinging pain. After

repeatedly attempting

intercourse with this pain, I also developed internal tension issues, making

penetration

completely impossible.

Tried regular lidocaine, but the alcohol in it caused worse burning. I got it

compounded in

aloe vera, which didn't cause additional burning, but didn't really help enough.

Went to physical therapy, and this has helped the internal pain IMMENSELY. I'd

say that

problem is already about 80% better.

I tried Elavil for the external pain, but couldn't stand the psychological

effects after a day.

I'm now trying Neurontin with few side effects except a bit of grogginess in the

morning,

but at 900 mg, it doesn't seem to be doing much.

Summary: surface pain on contact, became internal muscle pain, HIGHLY recommend

pt

for internal pain, no recommendations thus far for surface pain.

[Guest guest]

Heck, I'll give it a go. So I'd like to know what form of vulvar pain you were experiencing--whatever information you can think of, from specific diagnoses (ls, etc) to descriptions (tearing, thinning of tissues, inflammation, itching). Vulvar pain for me is pretty minimal. More a persistent burning, itchy feeling. Issue with clitoral irritation however. An almost constant sticking feeling...like something is poking or irritating it. Also a sexual urge for sexual release (talk about annoying). I personally wonder if it isn't because my clitoris is EXTREMELY sensitive, and never like touched directly, more indirect rubbing of the clitoral shaft or legs was what was needed for orgasm. Direct touch was way too much. Now that the clitoral hood is fused over it, does it rub and irritate it more often???Began tearing at the 6 o'clock 3 years ago, and due to my being perimenopausal, I thought it was thining of the vulval tissues. Began tearing during my Brazilian waxes 7 months ago. I go for waxing one time a month, and when we would pull the skin taut so that the hair would come out easier with less tugging, I would rip in the vulva.Anal issues include tearing and bleeding. Burning and ulceration. I, however, have Crohns disease as well, and part of that is due to this.Diagnosed after being found to have body LS, and then realizing the itching, crawly feelings in vaginal area were not yeast, but likely LS. Went for biopsy...Voila...here I am.MAIN ISSUES AT THIS TIME:Dark red spot that runs in the crease between labia minor and majora on the left hand side.Fusing of clitoral hood...and over stimulationEarly stages of labial fusing.Burning, sticky feeling probably 3 days out of 7.NO tearsNO lesionsNO whiteThen I'd like to know what treatments you've tried (antidepressants, estrace, stopping birth control, surgery, etc.), and how they've affected you. And, if you feel like it, which ones you would recommend most.TREATMENTS:For body LS:Kenalog injections *helped for one or two weeks, making spots fade, but they came right back*Clobetastol cream ~ pulse dosing, 2 weeks on / 2 weeks off Protopic ~ using the two weeks off ClobetestolAntihistamine stacking to control 24/7 itch...this has saved my sanity.Aveeno Oatmeal Baths nightlyChemical Free Soaps to bathe withNo fabric softner, instead use vinegar rinse and soap for sensitive skin in clothes.seeing minimal expansion of lesions. When using clobetestol they soften.Protopic keeps them less dang itchy, they are under my bra band.For Vulvar LS: bold equals what I am using nowStarted out with Clobetestol one time a day....Estrace each nightTapered down to Triamcinilone a.m.....Estrace each nightTapered down to Protopic each morning...Estrace each night, and once a week Clobetestol for maintenanceWeekly insertion of 1/2 gram of Estrace as well (I've had total hyster)Emu oil as a topping for Estrogen each night to try and get it into layers deeperEmu oil in the day if feeling dry or sticky as barrier on vulvaA & D ointment or Paladin as barrier cream for rectumAs I have to use so much steroid on skin, I didn't want to continue on vulva if I didn't have to. Protopic is working for me, and by tapering onto it by mixing it with the triamcinalone, I found I did not have the burning others have complained about with the use of this drug.Estrace brings me the sweetest relief. I look forward to the application each night. With it's use the 6 o'clock is going away (the web of scar tissue) and is extremely elastic. Clitoral hood is still very fused, but I do see the line where it should be separated and had not seen that prior to the Estrace/Emu each night.In the next week I should receive my Testoterone in aqua gel. This should make my skin even more elastic, and help put more Estrogen receptors in my vulva, and the hope is to see more unfusing due to this.when I exercise (pilates) I use aquaphor as a barrier on the vulva/rectum to prevent sweatduring sex I use a lot LOT of lube. Finding it less necessary as the web is so elastic though.after sex I rinse with a water bottle (think those pointy ketchup bottles) and then lay with ice for a bit...then apply meds.Due to total hyster I am on a .425 Cenestin HRT.next month I drop to .3 for 6 months then plan to come off and go on what I think she said was vagifem.Things I tried and did NOT like:Olive oil...it stinks. It just does. It also didn't sooth as the emu does. For myself, I've just been diagnosed as having vulvar vestibulitis. Except after a yeast infection (I've had two in the past year), when the pain is increased, my pain is only on contact, mostly in the 5-7 o'clock areas. It's a stinging pain. After repeatedly attempting intercourse with this pain, I also developed internal tension issues, making penetration completely impossible.I don't mean to go all Dr. Ruth on you here...but you're asking...I'm telling! Lots of oral sex. LOTS. Your internal tension issues, if you are so...and pardon my bluntness here...sloppy wet with your own lubrication would help. Rub some lube on him and he may surprise you and him and slide right in. When I say lots of oral sex, I mean I get a good long time of it, and it helps TREMENDOUSLY. Tried regular lidocaine, but the alcohol in it caused worse burning. I got it compounded in aloe vera, which didn't cause additional burning, but didn't really help enough. Went to physical therapy, and this has helped the internal pain IMMENSELY. I'd say that problem is already about 80% better.I guess I am fortunate in this and the fact that I have the libido of a 16 year old at 49. I am glad to read this has helped you so much. I have a hard time imagining NOT being able to have sex, as I tend to um...like it plenty. I tried Elavil for the external pain, but couldn't stand the psychological effects after a day. I'm now trying Neurontin with few side effects except a bit of grogginess in the morning, but at 900 mg, it doesn't seem to be doing much. Summary: surface pain on contact, became internal muscle pain, HIGHLY recommend pt for internal pain, no recommendations thus far for surface pain.I'm not entirely sure what you are looking for, but that was my stab at it.Good luck!