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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

» 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

» 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 …

Comments: 0


New here, looking for some support.

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New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:34 am

Hi everyone. Let me start by saying that reading this forum today has made me feel so much less alone. My overall story is really long, so I'll try to keep it as short as I can. It all started when I was 16 and got my first uti. I believed I was over treated for it, and then started self treating for yeast when I thought that was my problem afterwards. Then started the cycle of vulva redness and burning pain. No doctor I saw could figure out what was wrong with me, and I tried so many things. I don't even remember cultures ever showing anything. When I was 18 or so I saw a gyno who told me to try changing my diet for a while, cutting out sugar, gluten, etc. I did this for about a year, and I can't remember if it help much, but it might have. I was also pretty depressed and isolated at this point. When I was 19 I met my current boyfriend, and at that point my vulva was actually pretty normal, I don't know if it was the diet, or just time, but I hardly had any pain. He could touch me, and we would do all sorts of foreplay just fine. After 6 months we decided to have sex (we were both virgins) and it was wonderful. I only had minimal pain at the beginning, but I think that's normal for your first time. I did end up with a uti, and yeast infection, but those cleared easily. Then those both happened again the next time we had sex. So I decided that condoms might be the culprit, and I got the implant in my arm. I had some infections occasionally while on, but I could clear them with boric acid. I do remember at one point I tried using vitamin c vaginally (I read about it online as a bv cure) and that caused awful burning that lasted for months, but eventually did pass. After three years I did get the implant removed, and was briefly put on the pill. I had a bad reaction to it, so discontinued after less than two months. So now I'm 23, and basically at my wits end. I've had vulva burning, stinging, soreness, itching, and everything bad for about 3 months now. I did have a uti around the beginning of it, but the pain started before that. I've been tested for yeast, bv, stds, you name it. Sometimes it would come back with a little yeast or some clue cells, but the treatments never helped. I also know what it feels like when I have an infection, and it's nothing like this. I haven't been able to have sex because of the pain, which is unprovoked but is almost all the time. I've been seeing a natropath, and she did test me for food allergies while came back that I'm very sensitive to dairy. I've cut out dairy for almost a month now, but vulva pain is very much still present. She may want to also test my hormones, but all these tests are getting expensive. I had normal cycles before bc, but now I only get a period every month and a half or so. I also overall don't feel that great, I'm tired most of the time, I get lower back pain that sometimes feels like a burning pain, headaches, nausea, I'm basically a mess. But I would deal with all of this if I didn't have this awful burning pain, it honestly makes me so depressed, I'm lucky that my boyfriend is supportive. Maybe I just needed to vent, but advise would be much appreciated.

PhoenixFire

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:37 am

I also wanted to note that last year I had an amazing year. My vulva and vagina felt almost totally normal, I was having sex with my boyfriend once or twice a week, and it would have been more often if possible. This problem only started after coming OFF of birth control, so I wonder if it could be hormone related after all. It's so frustrating to not have a clear idea of how to get better

PhoenixFire

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:43 am

One last thing! And this really is the last thing. Has anyone ever had a bad reaction to boric acid suppositories? I used one today because they've worked so well for me in the past without side effects, but not only did it make my pain worse (I'm sure it's because this isn't an infection, and because I've been imflamed for so long) but I've also been feeling really tired, spacey, and just off. I feel like it might be a reaction, and it's honestly a little scary

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Re: New here, looking for some support.

Post  PainBlogger on Sun Nov 20, 2016 10:35 pm

Sorry that you're feeling bad with this horrible condition.

My problems also started with a UTI (and concurrent thrush). You can read here what I've tried: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

I need to update that thread again as I'm still doing well. Duloxetine has been a really big help to me. My average daily pain is now 1/10 and I'm pain-free much of the time. But it took me a while of trying unsuccessful treatments before I found what worked.

Has any doctor mentioned fibromyalgia to you? If you're getting back pain, headaches and tiredness as well as vulval pain then maybe you have a more widespread chronic pain condition. Would you be able to see a pain specialist?

I hope you find something or combination of things that works for you soon.

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 25, 2016 4:51 am

Thank you for the reply! I've actually been looking into fibromyalgia, since I've been getting lower and mid back pain that is like a radiating burning, pain in my pelvic bones, upper back pain, muscles pains that aren't from exercise, fatigue, etc. And of course the ever present vulva burning, I'm laying in bed with an ice pack down there as I type this. Sad
I also had a bit of a scare because I was taking antibiotics for a suspected uti, but a few days into it I woke up with a high fever, headache, lower back pain, dizziness. I went right back to the doctor, but she said she thought it was a virus because they didn't find bacteria in my urine. Luckily after one miserable day my fever was gone, and I felt a lot better. Still not feeling great, but that's been my life lately. Maybe a pain specialist is somewhere to look, but I'm only 23 with limited funds unfortunately.

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Re: New here, looking for some support.

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