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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


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 …

Comments: 0

New member thankful for this support system in this horrible nightmare

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New member thankful for this support system in this horrible nightmare

Post  cupcake25 on Tue Jul 16, 2013 9:13 pm

Hello everyone. I am so grateful to have a place to tell my story. I apologize for how long this is, but I just need some insight

I'm 25 and was diagnosed with vulvodynia 2 months ago. My issues began last year when I decided to try the Depo Provera birth control shot. Biggest mistake of my life!!!! I believe this was the start of my vagnial issues. I never had a yeast infection/bacterial infection before the depo shot, though if I think about it I have always had instances of painful intercourse, and have never been able to wear tampons comfortably.

So, about 4 months into taking the Depo shot I began a terrible cycle of illnesses. I had the flu for months, and on top of that began having excess vaginal discharge. I visited my gyno at the time (second biggest mistake of my life) who didn't bother to take a culture and simply gave me a gel for BV. To my surprise the gel didn't help. I returned and was given the same antibiotic in pill form, which made the discharge worse. At this point I was not only dealing with discharge but began feeling a faint discomfort, a sort of burning, aching sensation. I switched to my primary doctor at this point, began taking a THIRD round of the SAME
antibiotic, and halfway through received a phone call from the  office informing me that the whole time they were treating the wrong bacteria. I began another round of antibiotics plus Fluconazole (just in case), and still didnt feel better, and began feeling pelvic pain and pressure. After a final round of antibiotics, this time for a UTI  (which I don't believe I ever had), my primary care doctor said she could no longer help and sent me to a specialist. At this point my stomach was a mess from the antibiotics and my vagina was red and raw and burning.  The specialist sent in a culture for everything you could possibly have, and prescribed the vaginal lubricant/prebiotic Luvena, which helped the pain immensely. The results of the culture were not surprising: Candida Albicans. I was so relieved I almost cried. I began a Fluconaole regimen of one pill a day for 7 days. I cannot describe my dismay when this didnt make me feel better. The red raw feeling went away, but I was still having faint aching, itching, and burning. The specialist informed me after two more visits that there was no yeast (by visual diagnosis only) and diagnosed vulvodynia. She prescribed Zoloft, which made me desperately depressed, new birth control which made me extremely sick to my stomach, and lidocaine. Now, about a month later, I've quit all birth control and had my first period after 8 months. A couple days before my period started I felt like I was on fire! I was in so much pain, the burning horrible. I switched to all cotton, organic pads and liners with no relief. Once my period stopped I took a second round of 7 day Fluconazole, but only had relief for one day before the aching, swelling, and burning returned. Unfortunately I have to wait a week to see the specialist again.

I'm so confused and tired. My relationship is strained by the lack of intimacy, and I'm at the end of my rope. Just when I think it's gotten too much to handle, it seems to get worse. I'm way too young to have a sexless relationship. Is there something the doctors are missing? My primary care doctor did inform me that I have a strep b overgrowth, but that they don't worry about that because its supposed to be harmless unless you're pregnant.

Is it yeast? Is it some weird bacteria? What the hell is going on? I feel like I'm trapped in a hideous nightmare.

Last edited by cupcake25 on Tue Jul 16, 2013 9:14 pm; edited 1 time in total (Reason for editing : Typo)

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Re: New member thankful for this support system in this horrible nightmare

Post  Sarah001 on Wed Jul 17, 2013 9:17 pm

We've all been down the UTI/yeast/B.V road so you're not alone, doctors "diagnose" those things because they are commonly found in women but the only way to be sure is ask them to culture a swab and a urine sample so they can see exactly what's happening. Don't use anymore creams or take anymore antibiotics until you know what's there and what's not because they can make matters much worse. If it is yeast they can do a lengthy treament of oral tablets only so that could be ruled out. If you found using a probiotic lube a great help I'd add a supplement orally too if you haven't already and Vitamin D3 is very good for the immune system so that might help too. It might be an idea to go down the hormone testing route if those things don't work, expect barriers if you ask though because lots of ladies get told it can't be done because of how our hormones fluctuate each month but stand your ground if it's something you want done, I'm not sure where you're from but here in the U.K doctors aren't keen to test hormones unless your cycle has become abnormal. I want to clarify that they also don't mean abnormal to you they mean abnormal by the general population standards. If you're from the U.S you have a much better chance of getting the test done without much resistance. The book "When Sex Hurts" is excellent for helping figure out the cause and available on Amazon, I highly recommend it and once you know what is a possibility and what isn't it will give you a list of possible causes and treatments to start working through. It also has more detail about the hormone testing too. Good luck and don't give up, but please don't just slap anything downstairs they give you because it can make things so much worse. Wink 

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Re: New member thankful for this support system in this horrible nightmare

Post  cupcake25 on Fri Jul 19, 2013 6:05 pm

Hi Sarah! Thanks so much for your response. I expect hormones to be my root issue. Hormones messed up by birth control mixed with my immune system being compromised  because of the golden combo of celiac disease + the depo provera shot = bad bad bad. If only someone had told me the depo messes with your immune system!!!! Shame on me for not researching...
Anyhow, considering I never suffered a vaginal infection prior to the birth control fiasco, I'm hoping once it's all out of my system my body will regulate itself. If it does not, however, hormone testing will be a necessity. I have a feeling right now the testing won't be quite accurate because I just quit birth control a couple weeks ago. I also realize once certain infections (like yeast) get a foot in the door it's tough to get rid of them Sad.

I've been taking an oral probiotic for my stomach for a year or so, and it works wonders for tummy troubles. I'm sure it helps down there as well, though my gyno swears it only works if you apply it down there.
I actually began taking a Vitamin D supplement a couple days ago, and maybe it's in my head, but I swear I already feel better...

Best wishes,

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Re: New member thankful for this support system in this horrible nightmare

Post  Elc88 on Sun Jul 21, 2013 7:58 pm

These stories all sound so familiar... Although if you have just had a contraceptive injection, is there a chance you have an STI/STD? It's another intrusion, but it's worth going to your sexual health clinic if your swabs didn't already test for it. Definitely stand your ground and say no more creams and pills until you know what it is. You can use emulsifying ointment on a daily basis as a moisturiser, which can ease your discomfort. It's a fairly neutral waxy ointment, most pharmacists keep it behind the counter, but it's not too expensive.

You are really lucky to only have to wait a week between Gynaecologist appointments - I typically had to wait between 16 weeks to 6 months!


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Re: New member thankful for this support system in this horrible nightmare

Post  cupcake25 on Sun Jul 21, 2013 9:01 pm

Hi Elc88! Thanks for your response.
Yes, I'm finding more and more my experiences are so similar to those of other women, which is heartbreaking. If only I had been more educated when this first happened--
I didn't even know what BV was!

Fortunately I have been tested about 1,000 times for every STD under the sun, and am clean. I have been in a committed relationship for a while as well. I was diagnosed with genital herpes years and years ago, but I never have outbreaks (knock on wood) and don't see any correlation between the issues.

I'll look into the moisturizer you recommended. It's worth a shot! Thankfully I see my doctor soon O_O

Wow, I'm sorry you had to wait so long for appointments. I've become so accustomed to being in the doctors office every week so that sounds like torture! Part of my issue is being impatient, though. I've bounced between doctors-- which did far more harm than good.

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Re: New member thankful for this support system in this horrible nightmare

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