Log in

I forgot my password

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 4

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 3

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

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: 4

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, …

Comments: 9

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 …

Comments: 5


It's not vulvodynia

View previous topic View next topic Go down

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
avatar
mary jane

Posts : 321
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

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.

zarli

Posts : 182
Join date : 2013-08-11
Location : Australia

View user profile

Back to top Go down

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

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

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
avatar
mary jane

Posts : 321
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

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

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

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?????
avatar
mary jane

Posts : 321
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

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

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

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
avatar
tinkerbelle2

Posts : 302
Join date : 2013-09-28
Age : 25
Location : Brighton, England, UK.

View user profile

Back to top Go down

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
avatar
mary jane

Posts : 321
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

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!
avatar
tinkerbelle2

Posts : 302
Join date : 2013-09-28
Age : 25
Location : Brighton, England, UK.

View user profile

Back to top Go down

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..

orchid27

Posts : 7
Join date : 2013-12-31

View user profile

Back to top Go down

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.

avatar
mary jane

Posts : 321
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

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!

orchid27

Posts : 7
Join date : 2013-12-31

View user profile

Back to top Go down

Re: It's not vulvodynia

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum