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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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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: 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 …

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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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