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» Vestibulectomy
Yesterday at 12:39 pm by Hopeitworks

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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 …

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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.

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


It's not vulvodynia

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It's not vulvodynia

Post  mary jane on Thu Nov 28, 2013 1:11 pm

Just got back from the vulva clinic at St mary's hospital where they told me I have neither vulvodynia nor vestibulitis, nor pudendal neuralgia (seeing how I DO NOT HAVE BURNING PAIN)
they don't know what's wrong with me. f..
they're sending me for an MRI and blood tests (again).my biggest problem remains the inflammation...If anyone applies pressure on the vulvar tissue it swells and then I have a lot of pain until it subsides.
I don't know anymore, I am teary ...and my trush does not show up in their tests either.
I have unexplained vibrations in my body as wel...gaahhh
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Re: It's not vulvodynia

Post  zarli on Thu Nov 28, 2013 8:21 pm

'You will be ok ' maybe its better that it might be something else and not V.  
I will be thinking of you. I still don't understand how they can rule out V just because you don't have burning pain ??
I've seen 3 vulva specialist and they have never said that to me and I never have burning pain. Did they do the q tip test on you ?? Is there another vulva clinic or specialist you can go to ? Vulvodynia has many forms but I do know that neuralgia pain and nerve endings buzzing are strong symptoms so its a mystery to me.

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Re: It's not vulvodynia

Post  Alana3 on Thu Nov 28, 2013 8:50 pm

Have you been told abut endometriosis where it is usually found on the inside it can travel and cause inflammation in the hooha. Not saying it is but ivr heard similar complaints with other girls with endo esp the vibrating you mention

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Re: It's not vulvodynia

Post  mary jane on Thu Nov 28, 2013 9:54 pm

hi girls,
I had the Q tip test again, only this time it did not hurt....it usually hurts like a b....however, immediately after the pressure of the Q tip I began feeling "movement" down there and now I have inflammation again...I don't know anymore....but with me, this has been from the start .....If I press on the labia majora, it starts to swell....and I have not been able to find anyone with this exact symptoms....again, my pain was triggered by an infection of the bartholin glands, although it never turned into an abcess, it just ruptured and caused some type of crazy immune response (??) I don;t know...

Alana, the doctor did actually mention endo to me, however I do not see how this can cause my vulva to swell after touching it ....
I am on 50 mg Ami/Elavil at the moment....NSAIDs have quit on me, even naproxen won't touch the swelling down there....

Am considering a rare disorder right now, or a combination of rare disorders

karma, girls, for replying to a fellow sufferer
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Re: It's not vulvodynia

Post  Alana3 on Fri Nov 29, 2013 3:06 am

Because endo can grow outside of ur vag in rare cases like the cervix area dont quote me but ive heard of your problem with other endo girls... of course idk for sure but just repeating their stories. Are you absolutely positive that they were your glands that ruptured? Like dr diagnosed? I'm not trying to start anything but ive heard of similar stuff and it relates to endo (how fun I have it and its absolutely terrible) let us know

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Re: It's not vulvodynia

Post  mary jane on Fri Nov 29, 2013 8:57 pm

hey alana, my doctor did mention wanting to check for endo and spinal problems.

so again, I had small cyst of the bartholin's/ vestibular gland, because it was pretty high up on my labia majora.
I swear I will soon produce a drawing for my doctors.
I took Naproxen (an NSAID) to unclog the gland basically..and it did ....but I think the infection triggered something because that same night I had vibrating pain (I know it sounds stupid, can't describe it with fancy words)...and then upon pressing on the labia majora it started swelling=inflammation=pain.
That is all I know. I was also on Yasmin at the time and I did not take any antibiotics for the infection (stupid of me). Maybe the infection with the medical cocktail triggered something? I feel like a medical mystery. pale 
And then the pain and swelling spread to the other labia majora! Amitriptyline 50 mg is working for the unprovoked pain, but I still have pain if I press on the labia. So I don't know what is wrong, honestly last night I was researching autoimmune illnesses and rare vulvar disorders and none of the photos looked like what I have. I even looked at vulvar chron's !!

now I am tormented by vibrations everywhere. my right foot, buttocks, back, random pains. Herpes?????
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Re: It's not vulvodynia

Post  Alana3 on Fri Nov 29, 2013 11:22 pm

You do not have herpes haha chill out you sound like me its probably a nerve or if you have endometriosis (which I do) it can cause muscle.pain which can sit on nerves which causes the feeling you're describing. Herpes are blisters. It sounds like muscle or nerve but what do I know? I don't want to lead u in a bad direction

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Re: It's not vulvodynia

Post  tinkerbelle2 on Sun Dec 01, 2013 8:59 pm

Sending hugs maryjane! I don't even know if vulvodynia is what I have either. What even is vulvodynia. The whole condition is really vague
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Re: It's not vulvodynia

Post  mary jane on Tue Dec 03, 2013 1:17 pm

@ tinkerbelle.... I remember reading of some women who shared your symptoms on this forum: http://www.pudendalhope.info/forum/index.php?sid=28491809e473dc4574f07472bb16bab6

I'm not saying you have PN, but it is one of the few places where they complain of vaginal burning...

on a different side note, I finally found which category shares my type of pain: LABIAPLASTY PATIENTS.
I shall mention this to my GP. dear me
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Re: It's not vulvodynia

Post  tinkerbelle2 on Tue Dec 03, 2013 3:14 pm

Thanks Mary Jane! I did look into pudendal thingy I just don't get any relief from lying down etc. But will check it out! I hope you manage to find people with your symptoms too!
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Re: It's not vulvodynia

Post  orchid27 on Tue Dec 31, 2013 4:08 pm

This probably isn't a main source and doesn't help you diagnose your swelling response but.. years ago in college I had a serious panic attack. Once I came out of it I had this uncontrollable jerking that started as a vibrating sensation in my lower back and made my legs thrust up and upper back curve down -- seriously freaky. What I am suggesting is that anxiety of pain and not having an answer can manifest physically in some people. Maybe your vibration sensation is a form of that? Doesn't help explain the swelling..

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Re: It's not vulvodynia

Post  mary jane on Tue Dec 31, 2013 5:49 pm

Hi Orchid....
I did have bad anxiety and depression in the first 2 months plus panic attacks, I have calmed down a lot since then....
my buzzing of the nerves I think is a side effect from the amitriptyline...unless I have a tarlov cyst or spinal problems as I have had mysterious sciatica symptoms...I can now differentiate between anxiety and real symptoms as I have calmed down since the background pain dissappeared thanks to the ami at 50 mg...
I suspect my vulval swelling to be some kind of autoimmune reaction to the infection I had...though not lichen sclerosus.

I don't believe the doctors anymore. I think I have overlapping conditions: vestibulitis on the right side from an inflamed bartholin gland, vulval neuropathy (I suspect like all 3 nerves involved: ilioinguinal, genitofemoral, and pudendal) plus some kind of inflammation reaction to something .... they have also found leukocytes in my urine twice !

If I were a doctor, and a good one, I would order 300 mg Lyrica, long term diflucan for the YI, cryoablation of the ilioinguinal and genitofemoral and some pudendal nerve blocks plus a 3T MRI of the stupid bartholin gland.
but I am not, I am at the mercy of the GP system.

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Re: It's not vulvodynia

Post  orchid27 on Tue Dec 31, 2013 7:09 pm

Just be your own advocate! You will find a doctor that is willing to listen and willing to you and believe you enough to try what you think. You definitely have overlapping conditions, and most of us do. Good luck with everything!

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Re: It's not vulvodynia

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