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» VULVODYNIA AND SUICIDE
Yesterday at 11:20 pm by Faezeh

» a video for you guys
Yesterday at 2:53 am by lavrose

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Yesterday at 2:45 am by lavrose

» New and need some help
Fri Feb 23, 2018 1:12 pm by fairlight10

» Acupuncture gave me my life back!
Thu Feb 22, 2018 11:25 pm by Bx11

» Anyone from New Jersey
Thu Feb 22, 2018 10:47 pm by LindafromNJ

» vaginal cream
Thu Feb 22, 2018 10:46 pm by LindafromNJ

» Acupuncture advice please
Thu Feb 22, 2018 2:25 am by ryn207

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

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vaginal cream

Thu Feb 22, 2018 10:46 pm by LindafromNJ

I have been given ABC cream to start using for my condition. This is gabapentin, amitriptyline and baclofen cream. Has anyone tried this. Also has anyone used lidocaine. My doctor told me not to use it. It is so sore at the vaginal opening. Has anyone used it there. Please respond!!

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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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: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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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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