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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

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Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

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Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Steroid ointments/creams

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Steroid ointments/creams

Post  Elc88 on Sun Nov 24, 2013 7:49 pm

I am currently battling away with steroid ointment and Dermol 500 wash to see if that will help with things, but I'm getting increasingly concerned that my genitals feel swollen after I apply them, and I don't feel like they should be.

In particular, I've notices my lady bits feel a lot more pronounced and solid when I apply the Dermol 500, which is a type of antiseptic skin wash for eczema and dermatitis, meant to form a protective barrier to stop whatever is harming you from getting in.

I really don't like the idea of things being constantly swollen in that area, to me it seems like a bad idea, and I feel like it's going to somehow lead me to other skin problems in later life. Anyone tried this out before?

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Post  Elc88 on Sun Nov 24, 2013 7:50 pm

Should add, it means I've not been applying the steroid ointment every day, to give the swelling a chance to go down, which means my pain isn't getting any better either! If it's OK, I'll be more inclined to apply it.

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Re: Steroid ointments/creams

Post  Kathy100 on Mon Nov 25, 2013 2:39 pm

My dr gave me steroid cream to try and after 3 days it made my bits very painful and swollen! Dr said it was a rare allergic reaction to the cream - so I stopped taking it. I haven't tried Dermol 500 though.

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Re: Steroid ointments/creams

Post  Elc88 on Tue Nov 26, 2013 9:31 pm

Do you remember what cream it was?

I was given Betnovate cream, which made me very swollen and painful. I was told it was an allergic reaction, and they allergy tested me for it, but I wasn't allergic to any of the ingredients. I had a spot of dermatitis on my leg, and put a bit on. It helped the dermatitis, but all the normal skin around it went really dry, cracked, painful and blistery. The problem is it's really hard to only apply it to the affected area on that part of the body.

I am now on Eumovate ointment, coupled with Dermol 500. Eumovate has a mild impact, but not as much as betnovate.


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Re: Steroid ointments/creams

Post  Kathy100 on Wed Nov 27, 2013 10:59 am

It was a hydrochoritizone (not sure about spelling) cream - in small tube low strength - I think 1%. I applied on the vulva only a very small amount.

Weirdly enough I've just had a bout of dermatitis on my sides / stomach & the pharmacist gave me the same cream to use & it hasn't irritated me there.

Is the Eumovate helping you?

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Re: Steroid ointments/creams

Post  Elc88 on Sun Dec 08, 2013 8:11 pm

Kathy100 wrote:It was a hydrochoritizone (not sure about spelling) cream - in small tube low strength - I think 1%.  I applied on the vulva only a very small amount.

Weirdly enough I've just had a bout of dermatitis on my sides / stomach & the pharmacist gave me the same cream to use & it hasn't irritated me there.

Is the Eumovate helping you?
Sorry for not responding sooner - I've been very busy, and not had time to log in for a while.

I'm not sure if the eumovate is helping me just now, it's very mild, and apparently will take months to make a difference. I've not managed to get into a good habit of applying it every day, so I haven't notices much of a difference yet.

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Cream that I was prescribed.....

Post  Intrestn1 on Wed Dec 11, 2013 1:48 am

Hello. I have the intense itching and then once I begin to rub or scratch, I get the intense burning...... It almost drives me to tears.... I was prescribed a cream for it.... It helps but I wish it would help cure it and not just pit it at bay.... When I have a flare up that is not that bad or sense one coming I apply this cream BUT if the flare up is very very bad, I have to go and wash my "tutsie" to settle it down and then put some cream on it..... It usually helps but......its just NOT A PERMANENT FIX WHICH DRIVES ME CRAZY!! The cream that my gyno at the time prescribed me is DESOXIMETASONE Cream USP, 0.25%... I have never asked him to up the dosage so it may help more if I did.... (gotta find the time to get back to the gyno). I do not use it intravaginally, just on the inside and outside genitalia..... (My panty line along with the crown area of my vagina (the part where the hair is at the top) is the worse.... ) Anyway, that cream helps until the flare up is soo bad until I have to just hold my breath while I bite my lip as it slowly passes......

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Re: Steroid ointments/creams

Post  EviE°Bee on Thu Dec 12, 2013 10:26 am

I was on the same steroid ointment Kathy.

8 freakin months. The first week it was ehh, a lil better. After that, i felt a little swollen, irritated, it just didn't feel right. The dr swore I had dermatitis on my vag, turns out it was a yeast infection.

Steriods are bad bad for the vag, in my opinion. Too many possibilities of what the problem is and steroids is a strong drug.

Good luck and research.

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Re: Steroid ointments/creams

Post  tinkerbelle2 on Thu Dec 12, 2013 10:39 am

Have any of you girls tried boric acid suppositories ?
http://www.youtube.com/watch%3Fv%3DFdvnEmUzAbE&cd=4&ved=0CD4QtwIwAw&usg=AFQjCNGaQqaIgX6ycj4hMt_a6eaFQg-UwA
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Re: Steroid ointments/creams

Post  EviE°Bee on Fri Dec 13, 2013 3:33 pm

Negative.

I hear Boric Acid stings like a mofo and messes up ur skin.

I was thinking about our normal flora. Its supposed to guard a against other bacterias, our vag guard, if you will. Either we lack normal flora or just don't have any. Different bacteria then thrive and are hard to eliminate.


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Re: Steroid ointments/creams

Post  Kathy100 on Fri Dec 13, 2013 4:00 pm

I think it depends on what's causing your V too. If the cause is muscular like mine - I don't think that creams can help much.

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Re: Steroid ointments/creams

Post  Elc88 on Mon Dec 16, 2013 10:27 pm

Well I definitely have dermatitis, but I don't know if that's the only thing wrong down there!

I've been reading about some alternatives, and they recommend natural coconut or sweet almond oil, Vitamins A, D & E and fish oils, possibly aloe vera extract as well. I don't like the idea of steroids down there because I feel like I'm treating one problem by creating another. But I would like something with results a little more noticeable!

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Re: Steroid ointments/creams

Post  tinkerbelle2 on Tue Dec 17, 2013 9:46 am

Maybe not boric acid then! Not sure if I want to try it
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Re: Steroid ointments/creams

Post  Leslieg on Tue Dec 17, 2013 2:55 pm

Hello!   Boric acid suppositories are usually used for yeast infection.  I had this prescribed for me way back.....5 years ago when all of this started. It sounds far more harsh than it is.

Anyway....I've definitely developed some kind of dermatitis as well.  I had allergy testing that revealed sensitivity to an ingredient in shampoo, hand soaps, and dove sensitive skin soap.  Now I realize this ingredient is pretty much in everything. My dermatologist recommended vanicream soap and shampoo.  The ingredients list for these products seem to contain a lot of sulfates.  I wasn't feeling much better.  Then one day, I had a really bad flare and I couldn't understand why.  Then I remembered adding fabric softener to the laundry because my husband made a comment that the clothes weren't smelling clean. (I had been using only free and clear detergents with extra rinsing.....no fragrance.)  That was the only change I could attribute the increased flare to.  I started to pay attention to the skin on the rest of my body as well.   My arms and belly frequently have red blotches after  shower and tiny hives on my belly and I think by back too but it's hard to see.  I seem itchy a lot.......I thought this was dry skin especially in the winter.  I am fare skinned.  I feel itchy when I wear certain materials.  I guess I just thought all this was normal and it seemed to subside quickly and not bother me too much. I just put moisturizer on to soothe. I guess my vulva had enough.....

I read about a woman who changed to organic and natural everything and felt better.  Her only symptom was provoked pain. She recommended some products that I bought..... Dr Bronner's bar soap and Nellie's laundry soda. I plan to buy some new hand soap too (using dawn dish soap now).......I carry a tiny bottle in my purse and at work.  

Fingers and toes and everything else crossed.........I am feeling better not perfect yet but better for sure.  I get the sting and pinch every now and again but take a deep breath.  I still use lidocaine intermittently.  I have not had a lot of sex recently.......I am scared to tear.  I sometimes tear at 6 o'cock and I fear scar tissue. Hopefully that will be ok too. I struggle to release the fear of pain and the aftermath.  But I bought "slippery stuff" lube that my dr recommended.   Apparently its supposed to be very slippery.  I'm thinking of applying vitamin E to the 6 o'clock spot to help with the scar tissue and hopefully strengthen skin.

To ELC88, I have used pure, fragrance and dye free aloe for a time a while back.  I have always tried to limit the steroid ointments I've been prescribed and lidocaine over the years. They sometimes seemed to make matters worse for me. The aloe seemed to help a lot for a few months but then I began to get what looked like hives on my vulva and a sore near my clitoris.  Sooooooooo itchy. I stopped using the aloe and that reaction went awary. At the time, I thought it was some other disease process (lichen issues) progressing.  I was shocked the aloe took so long to give me a reaction. No regrets, however, because this hew issue prompted a trip to my clinic and the new dr I saw referred me to see the vulvar dermatologist who then recommended allergy testing and who told me I did not have lichen (I was convinced I did) and so began my process of changing products and looking at this with a whole new perspective.

I did not think dermatitis or allergies were an issue at all because 5 years ago I did the recommended change of products to all sensitive skin versions and fragrance free versions and nothing changed.  Ironically enough I am sensitive to the ingredient that is supposed to be mild and is in most products for sensitive and baby skin.  If I continue to improve, I'll write all of the things I've tried in hopes to help someone.  

I am realizing that my skin is sensitive to far more than the one chemical they found in the allergy testing.  Example, I switched to Aveeno oatmeal bar soap.....very few ingredients and had a vulvar flare, bum itching and body skin itching......worse than the soap with the offending chemical.  Go figure.......
Dr. Bronner's soap is my 4th or 5th soap to try.

Hopefully food for thought ladies.  By the way, I really like the Nellie's laundry soda (fingers crossed again).....its only been about a week.  It's pretty cheap (amazon). It smells really clean and you only need a small scoop for a large load so it seems it will last awhile.  
Will see.....  

Best wishes ladies....... xo


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Re: Steroid ointments/creams

Post  Alana3 on Tue Dec 17, 2013 6:44 pm

I didn't read everything just where you're feeling better and I just wanted to say I'm happy for you, hopefully this is a good track for you and you will continue to feel good! Keep us posted Smile

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Re: Steroid ointments/creams

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