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

» Recently Diagnosed.... Help!
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

» Anyone else have burning on the front of thighs?
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
Sat Aug 12, 2017 9:58 am by sj17

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 …

Comments: 4

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). …

Comments: 0

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.

Comments: 2

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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I need advice please.

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I need advice please.

Post  EviE°Bee on Fri Oct 04, 2013 2:06 am

I need some advice, im really stressed and, frankly, paranoid about this. I have a gyno appt in a few days and I need advice on what I should ask for. My gyno isnt very agressive with treatment, whatever type attitude.

I was never prone to yeast infections but i am now. I seem to get one every other month. I use clotrimazole 1% which causes irritation but it seems to help.

How do i differentiate yeast infections from VV?? with VV there is irritation that feels like lemon or salt was sprinkled on my vulva. With yeast it feels more like a sun burn and it seems to spread up the vulva. All in all very bad feelings.

Ive read that a regimen of diflucan/ fluconizole can cause more irritation. I need to know what others have experienced so i can try something more aggressive.

Thanks thanks thanks.

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still there

Post  mushroomvisionlala on Fri Oct 04, 2013 1:07 pm

if your getting yeast infections every month, it means the infection is still there. Believe me, I know this. Its very common for a women to get a yeast infection every month after or before her period, but once my yeast problem was under control, I didnt get yeast infections anymore around that time. I used to think sex CAUSED yeast infections for me, so I spent the majority of my life either avoiding it, Or only doing it when I felt "good" down there. Now I can do it everyday, five times a day, and not have burning and irritation after, for days after. (not that I do it, that much, LOL Smile

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VV, BV, yeast

Post  mushroomvisionlala on Fri Oct 04, 2013 1:09 pm

VV, BV, and yeast are all similar, so its hard to tell

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Re: I need advice please.

Post  EviE°Bee on Fri Oct 04, 2013 5:48 pm

Im leaning more towards yeast because the clotrimazole works, just not good enough.

What do you use to get rid of it?

Whenever they test me, all negative cultures, tissue looks normal.

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Re: I need advice please.

Post  Leslieg on Fri Oct 04, 2013 7:25 pm

Evie cod you be allergic to something? What soaps are you using?

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Re: I need advice please.

Post  Alana3 on Fri Oct 04, 2013 7:29 pm

I mean yeast typically itches smells like crap and has a white clumpy discharge and bv usually has a disgusting discharge do you have any of that and are they actually sending it out to a lab or juat looking and saying yeast?

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Re: I need advice please.

Post  EviE°Bee on Fri Oct 04, 2013 8:58 pm

I had a yeast infection for 8 months, the dr couldnt figure it out. No discharge, no foul smell, no normal yeast symptoms. Dr thought it was dermatitis, It turned out to be a yeast infection.

The current symptoms im having feels like it did during those 8 months, and it makes VV symptoms feel worse.

I use dove sensitive skin bar. No frarance. Its the only soap that doesnt irritate me. Im sensitive to everything.

Im gonna have the dr check on monday but i need to know if nothing shows up on the culture or visually, what should I ask for? I get an appt every 3 months, I wanna make it count :-\

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Re: I need advice please.

Post  Leslieg on Fri Oct 04, 2013 10:08 pm

Keep searching. We can beat this. I asked about allergies because I just had the North American patch series allergy test. They test for chemical irritants. I switched to dove sensitive skin care bar soap 5 years ago after a stubborn yeast infection. Yeast gone but symptoms stayed. My docs said to stop using dial antibacterial because it can disrupt vaginal flora. This made sense to me so i made the switch.
I got the results from my allergy testing yesterday and come to find out I had one significant allergic response (out of 100+). The chemical is cocamidopropyl betaine . It's the 2nd or 3rd ingredient in dove sensitive skin soap and in my shampoo as well. I have mild itchy scalp at times but nothing more. I do however have daily vulvar sx sometimes mild sometimes horrific. I have survived with lidocaine for many years.
I've obviously stopped using the soap and shampoo. The doctor said it can take 6-8 weeks to heal if this is the cause. I'm hoping I will heal. I'll keep you posted. I was astonished that it would take that long to heal. In the paperwork they gave me it stated that it can take 3-6 months if exposure was heavy. I've been using the soap for 5 years. I tried to use minimal soap but that was always hard for me. Maybe that's why my symptoms varied in intensity. The long healing period makes it so difficult to rule out allergies on our own. I realize its difficult to get allergy testing done. I was lucky my doctor referred me and my insurance covered it. I hope my story will help someone. I'll let you know if I feel better in time. For years I thought I had lichen planus so I never pursued much treatment but homeopathy and steroid ointments. my foctor now days i font have ghat. Smile))Love and healing to all the ladies here.....

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Re: I need advice please.

Post  Leslieg on Fri Oct 04, 2013 10:10 pm

iPhone autocorrect.....ugh! Smile)

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Re: I need advice please.

Post  EviE°Bee on Sat Oct 05, 2013 2:00 am

Wow! So what soap do you use to wash yourself now?? I shampoo my hair upside down because i figured it would cause irritation from the perfume alone.

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Re: I need advice please.

Post  Leslieg on Sat Oct 05, 2013 2:19 am

I just bought cetaphil gentle cleanser. It comes in a bar version. This is still all so new.... The new soap is weird but ill try anything at this point. I also wash my hair upside down. It was very difficult to find shampoo without the ingredient. It seems to be in everything. Thankfully many conditioners don't have it. I'm trying to remain positive but trying not to get my hopes up. The doctor said she wasn't sure if this was the answer but it definitely wasn't helping matters. I'm in prayer mode now. Wait and see I guess. I had a mild week for symptoms but suddenly feeling not so good which bursts my bubble for sure. I hope you find answers soon. Never give up. I'll keep you posted. I forgot to mention that the doctor does give a huge list of products that are safe to use.

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Re: I need advice please.

Post  EviE°Bee on Sat Oct 05, 2013 2:50 am

Oh poor baby :-( i understand. Are you on any meds??

I would imagine the soap is probably not too bubbly. What sucks is everything is a factor. Its hard to pin point the irritant. Is your bladder or urethra effected at all?

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Re: I need advice please.

Post  EviE°Bee on Mon Oct 07, 2013 6:30 pm

A little update which freaked me out big time. I have been using clotrimazole for 3 days and 10 mins after insertion i felt little pin pricks all over my body. Ive also been experiencing more irritation with the cream. Im confused as all heck. My gyno appt is today, im going to ask for diflucan 150mg but i want her to examine me first of course.

Im either allergic to the creme or my body is warning me that there is something more serious going on.

Ill update after my appt.

Thanks,
Evie bee

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Re: I need advice please.

Post  EviE°Bee on Mon Oct 07, 2013 7:34 pm

A little update which freaked me out big time. I have been using clotrimazole for 3 days and 10 mins after insertion i felt little pin pricks all over my body. Ive also been experiencing more irritation with the cream. Im confused as all heck. My gyno appt is today, im going to ask for diflucan 150mg but i want her to examine me first of course.

Im either allergic to the creme or my body is warning me that there is something more serious going on.

Ill update after my appt.

Thanks,
Evie bee

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Re: I need advice please.

Post  EviE°Bee on Tue Oct 08, 2013 12:08 am

Was given 4 150mg of diflucan, no exam.

Was told there was nothing else she could do as far as VV was concerned. Referred me to different doc who doesn't have a good track record.

I feel crushed.

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Re: I need advice please.

Post  Leslieg on Tue Oct 08, 2013 2:52 am

I'm sorry. There's nothing more frustrating than a doctors appointment that doesn't offer help. How come she wouldn't examine you? Did she offer insight into the pin prick feeling? Hang in there .....answers will come. Have you used clotrimzole before?
I hope you feel relief from diflucan. I'm wondering if she didn't do exam or culture because the medicine would mask the results. Have you seen a vulgar specialist yet?

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Re: I need advice please.

Post  EviE°Bee on Tue Oct 08, 2013 3:04 am

She said it could be fibromyalgia but she said she was stumped. She said to stop the clotrimazole for 2 days then start again to see if it happens again. She seemed unintereted.

Ive used the cream a couple times before and it never irritated me like this before. Im not gonna use anything right now, im just going to take the diflucan and cross my fingers.

I have to find a gyno that has more experience with VV.

Thanks for responding,
Evie Bee

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Re: I need advice please.

Post  EviE°Bee on Tue Oct 08, 2013 3:05 am

Muah Les!

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Re: I need advice please.

Post  Takver on Wed Oct 09, 2013 8:08 am

I use Oliva soap, which is just saponified olive oil, as basic as you can get. It's a brand sold in the UK. I don't know about brands used abroad. I have terribly sensitive skin and it's the only soap I can tolerate, including washes prescribed by the dermatologist.
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Re: I need advice please.

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