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» Post Vestibulectomy
Tue Aug 22, 2017 6:48 pm by JGD13

» Vestibulectomy
Fri Aug 18, 2017 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

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: 1

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

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


21 years old, Self diagnosed, have had for 5+years

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21 years old, Self diagnosed, have had for 5+years

Post  fleshmannequin on Wed Mar 27, 2013 5:58 am

My story is sort of long, but hopefully someone will read this! I really just want to get support from others, and know that I'm not crazy and alone in this suffering!!

I'm 21 years old, and I've had what I think is vulvodynia (and possibly vaginismus) for at least almost 5 years. On some level though, I think I've had vulvodynia my whole life. When I was very small I would often complain of vulvar pain (with no physical cause) and had trouble with bubble baths and riding bikes, etc. Things got worse when I became sexually active nearly 5 years ago. Right before losing my virginity, I started to get horrible stabbing pains in my vaginal opening that would stop me dead in my tracks. I went to a gynecologist and couldn't complete the exam. She was very forceful and uncaring and it was horribly traumatic to me (I think this started my vaginismus). During the next few years, I was treated for several vaginal infections, even though later I now realize it was probably just the symptoms of vulvodynia mimicking bacterial vaginosis and yeast infections. So naturally, none of the medications worked, of course. After months of attempted to have sex, I finally was able to. It was not without pain, though. Only once in my entire sexually active life have I had pain free sex (right after I was able to have intercourse for the first time). I have had a few partners and many sexual encounters since then (due to long term monogamous relationships) and have had severe pain with each partner and each time. The pain varies with each time, sometimes I have to stop sex immediately and I literally cry in pain and have to sit on an ice pack to relieve the intense burning and stabbing pain. Other times, the pain is tolerable, but it is always there no matter what. It feels like my vagina is on fire. It is the most uncomfortable feeling. I have also developed urethral burning within the last year, that comes and goes without warning and leaves me huddled up in tears. I have found relief with a perineal wash bottle that I spray on my vulva, and it seems to help a bit but not for long. I am so depressed that I can not have intercourse, it is so emotionally and physically painful for me. None of my partners have been that caring about it, or tried to do anything about it which frustrates me. I am so hopeless at the thought that I will never be able to enjoy sex, and I will always have this fear in the back of my mind. Not to mention, I hardly have sex as it is due to the pain, and I still have sometimes debilitating pain on a near daily basis. Pants are even becoming uncomfortable, and underwear too. Everything feels scratchy and like it's rubbing me raw. My vagina always looks red and feels tender and hot. I'm at a loss of what to do, doctors can't help me at all. They keep doing cultures and saying everything is negative and they can only recommend sex counseling, which is not covered by insurance so it's out of the question for me. I believe I have vaginismus and vulvodynia together. (Perhaps the vulvodynia caused the vaginismus, due to fear of pain?) and I find myself crying so often due to the fact that I don't feel like a woman. I feel guilty as a partner that my boyfriend is now scared to have sex with me due to my constant pain. I'm so worried sex will one day be completely out of the question for me.. Can anyone give me any words of encouragement, or hope? Or has anyone found any relief, even if its just temporary? I'm at the end of my rope...
thanks guys!

fleshmannequin

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Re: 21 years old, Self diagnosed, have had for 5+years

Post  Alana3 on Wed Mar 27, 2013 11:24 am

Where are you from? This all sounds like me except mine was provoked not unprovoked like yours sounds. Im considered cured now but I had surgery to get that way. My advice is to not go crazy and try a million "cures" at one time but try one thing and if that doesn't Work go onto something else (after several weeks). A vulvodynia specialist is probably your best bet and you can either go on the nva website OR go to google type where your from and vulvodynia specialists and see if any are available nearby. There is hope im proof of that but you won't be considered for surgery until you exhaust a lot of stuff first (a lot of people aren't considered ever) but there is a lot of stuff you can first and try and get your v to feel better or go away Smile you'll be fine it just sucks waiting to get "cured"

Alana3

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Re: 21 years old, Self diagnosed, have had for 5+years

Post  Loulou on Tue Apr 02, 2013 9:45 pm

Hi fleshmannequin

Its awful to hear that you are suffering. This is a horrible condition but don't let it beat you. There is hope - several people have posted in this forum about their successes and their cures have varied (e.g. physical therapy, surgery, elimination diets, antihistamines) so keep looking for your solution.

You say that you think you've had it your whole life - so have you/your docs looked at things you might have been born with like allergies or structural problems (in your vagina or pelvis - is everything where its supposed to be, the right size, with the right level of mobility etc). If you were born with extra or hyper sensitive nerves in your vulva then maybe medication (eg amtryptiline)and desensitisation through use of dilators could help? Last resort for that would be surgery. What i'm trying to say is that there are lots of potential causes, and therefore treatment options, to consider (sounds like your docs are trying to say its all in your head hence the counselling suggestion). Its NOT all in your head! I agree with Alana - find a vulvodynia specialist and don't rule anything out without exploration first.

I would guess that some of your increasing pain may be due to tight muscles thru tensing and guarding against pain (i agree with you that the vvd pain might be causing the vaginismus) so definitely get a physio to check you out for trigger points in your abdomen, bum, thighs and, if you can get to see a women's physio, pelvic floor. Releasing some of that tightness might provide some relief but you still need to get to the cause. And sounds obvious but have you tried some relaxation/meditation techniques to help you with feeling stressed/anxious? I know my pain used to feel worse when i was stressed.

For immediate pain relief you could try cold packs or lidocaine ointment. I found accupuncture helped with my pain in the early days so worth trying if you can.

You're only 21 but don't be intimidated by the docs. Do some research here and on the web, arm yourself with info and push for a vulvodynia specialist. There is definitely a treatment option out there that could help you.

Loulou

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Re: 21 years old, Self diagnosed, have had for 5+years

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