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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 …

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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 …

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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 …

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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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Have we all something in common other than "V" ofcourse???

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Have we all something in common other than "V" ofcourse???

Post  zarli on Tue Oct 08, 2013 11:32 pm

Hello Girls
A friend of mine asked me yesterday if there is anything all of the women who have 'V' might have in common ? I have thought of this at times, I did read initially about 7 years ago that Doctors thought 'V' only occurred in women who had dark hair and fair skin but that theory didn't last long. I'm wondering if we do all have something in common ???
I know I'm sounding crazy but my life living with 'V' and medication at times does make me... well and truly CRAZY.....
HERE IS SOME THINGS ABOUT ME-
I have sciatica, fibromyalgia, high blood pressure, I have fair skin dark hair, always had trouble with fine hair but hair on other parts of body such as chin and neck where it shouldn't be, anxiety, healthy weight range, active.. um I think that's pretty much it. OH AND OF COURSE BLUDDY 'V'.
If any one else has similar????
Oh and I have coloured my hair for years (my husband thinks the chemicals have got into my nervous system) only because I started going grey at 18.

Any way just an idea:) 

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Re: Have we all something in common other than "V" ofcourse???

Post  Delilah1 on Wed Oct 09, 2013 12:26 am

Hello Zarli!

I also have dark hair, fair skin and blue eyes.
I have IBS, migraines, restless leg and had Bells Palsy (paralysis of the facial nerve when I was a teenager)
I sometimes get strange "phantom" feelings that are hard to describe. Sometimes when I am driving a car I feel like there is somebody in the back seat pushing on my back with their feet! NO I'm not crazy:D  haha. I sometimes feel like something poking me in the bottom of my feet.
This all just leads me to believe it is something neurologic and muscular for me.
I have several relatives who have multiple sclerosis.
I also think it's musculoskeletal related because I have a misaligned pelvis, slight scoliosis and leg length discrepancy.
I guess it is a combination of things that create a "perfect storm" for V.
I was also very active before V. Weight lifting, bicycling, power walking. In a healthy weight range.
I was going through a very difficult emotional time in my life when it started also.
I have also colored my hair for years.
I've had ovarian cysts, endometriosis, ectopic pregnancy

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Re: Have we all something in common other than "V" ofcourse???

Post  tinkerbelle2 on Wed Oct 09, 2013 7:24 am

Hi girls,

I have dark hair, brown eyes and fair skin.
Oh, and in my teens I dyed my hair lots, blondes, black and different browns.

I don't have any other health conditions except anxiety,  I do get very overly stressed and obsessive about things. I've also always been very sensitive and emotional,  people can hurt my feelings easily.

The only other things I can think of is that as a baby I had a tiny hole in the heart but it closed up. I was fortunately always very healthy.

Could it be to do with nervousness and pain nerves?  Or maybe people with sensitive skin are more prone to it. But my skin isn't that sensitive,  I am prone to spots though.

Who knows? !

Weird if this turned out to only affect brunettes lol.
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Re: Have we all something in common other than "V" ofcourse???

Post  zarli on Wed Oct 09, 2013 9:53 am

thanks girls I related to both of you!!!

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Re: Have we all something in common other than "V" ofcourse???

Post  tinkerbelle2 on Wed Oct 09, 2013 10:08 am

zarli wrote:thanks girls I related to both of you!!!
Xxxxx I love you 
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Re: Have we all something in common other than "V" ofcourse???

Post  burningturning on Wed Oct 09, 2013 2:48 pm

zarli hi!
Recently I've red a medical study about women with V and it was saying that 60% of women with V have lower back problems.
There're some chiropractors working on this condition and they believe this's a trapped nerve or misaligned pelvic problem.
Of course this study was only a hypothesis, not proved yet. I tried to find the article on the internet but couldn't find it.

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Re: Have we all something in common other than "V" ofcourse???

Post  zarli on Thu Oct 10, 2013 7:30 am

Thank you. I have told every health professional I've ever been to ( and that's lots) that I have a trapped nerve on my left side of back, but they all tell me that if that was the case I wouldn't be able to stand up. I disagree with them and I truly believe we women can handle a lot of pain so there fore we can stand up !! I am now considering going to a neurologist I want to find out more about nerves. I suffer weird feelings on the left side of my body like numbness although its not numb and a feeling like ants are under my skin at times............sooooooooooooo frustrating isn't it!!!!!!!!!

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Re: Have we all something in common other than "V" ofcourse???

Post  burningturning on Thu Oct 10, 2013 8:22 am

zarli, the way you describe the pain on your leg is the same as mine. I have 2 bulged discs on my lombar spine. These discs pressed on the nerve so I had that feeling.

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Re: Have we all something in common other than "V" ofcourse???

Post  Sarah001 on Thu Oct 10, 2013 11:49 am

I think there's a very early thread about trying to find things in common if you search for it, hate to burst the brunette bubble but I'm a redhead so it definitely isn't the colour of our hair! I also have only in the last few months started colouring my hair to cover grey so it's not hair dye either. As there are a number of causes of V we will have things in common with women who have the same cause so it is worth knowing but we're not all going to have things in common except we're all female and all have V! I know my physio has rarely had a case that didn't involve pelvic misalignment so most women with V having low back pain would fit that.
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Re: Have we all something in common other than "V" ofcourse???

Post  EviE°Bee on Sat Oct 12, 2013 7:17 am

I think it may be hormone related. I never had a normal period. I would get it every 7-8 months. My VV started after a bad UTI 5 yrs ago but it wasn't painful enough to seek treatment.
My body regulated itself 1 year ago and I have had a year long flare. Ever since i have been getting my period regularly I HAVE BEEN IN PAIN. its on and off but it gets 10x worse a week before and during my period. I also get yeast infections after every period. Hormones can do so much damage, i wouldnt doubt it.

That or UTI related. Yeast related.

Im fair skinned, black hair, brown eyes, 5'2, kinda thick, plain eater, sensitive to perfumes, prone to Uti's, shave my V (not so much now), dyed my hair since I was 18 (im now 30), had polycystic ovarian syndrome but it corrected itself, uhhh....no kids, quit smoking 5 months ago.

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Re: Have we all something in common other than "V" ofcourse???

Post  EviE°Bee on Sat Oct 12, 2013 7:20 am

I also have low back pain that i acquired from a fall when I was a teen.

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Re: Have we all something in common other than "V" ofcourse???

Post  tinkerbelle2 on Sat Oct 12, 2013 6:52 pm

How old was every body when they first had this? Alot of people seem to have been in their late teens/early twenties. I was 17.
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Re: Have we all something in common other than "V" ofcourse???

Post  EviE°Bee on Sat Oct 12, 2013 9:14 pm

I was 26

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Re: Have we all something in common other than "V" ofcourse???

Post  zarli on Sun Oct 13, 2013 9:39 am

I was 35, I had my four beautiful children in my twenties. I always felt a kind of pressure' down there' during my pregnancies and also during periods from my teens. I was going through the most stressful and emotional time of my life when 'V' reared its ugly head. It started with a kind of tingling feeling on the left side of my vagina and continued to be the most painful thing I have ever felt in my life. Lots of Doctors later I was distraught and felt like not being here any more ( and that's saying something because my children are my life) I drove up to my local hospital at 2am in the morning in shear terror and exhaustion from the pain. I was very fortunate to see a female Doctor from Melbourne doing a relief stint at our local hospital. She had been to a seminar a month prior all about Vulvodynia, her enthusiasm at having her first patient with 'V' and her determination to help me I will never forget. Five days after with the medication at the right dose was my first pain free day in 10 months. Sorry but Im feeling quite emotional about 'V' today..........

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Re: Have we all something in common other than "V" ofcourse???

Post  Alana3 on Sun Oct 13, 2013 10:41 am

I seriously doubt youre going to find a link its like any other disease it just happens

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Re: Have we all something in common other than "V" ofcourse???

Post  tinkerbelle2 on Sun Oct 13, 2013 11:12 am

Zarli, bless you what a tough time! Are you on meds now still and is the pain still bad? I get emotional too, I think I am only at the beginning of an up and down journey with me and my vagina! Lol. :/ x
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Re: Have we all something in common other than "V" ofcourse???

Post  aajoycex on Thu Nov 21, 2013 5:25 pm

Hi ladies i noticied lower back pain was mentioned I personally have suffered with lower back pain for years as long as Ive had 'v'! I was given a survey to fill out by a specialist and there was questions on lower bk pain! It could be a link there! I also believe nerve damage could be a link!

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Re: Have we all something in common other than "V" ofcourse???

Post  mary jane on Thu Nov 21, 2013 6:59 pm

maybe it has something to do with the pudendal nerve or the fact that when you have painful private parts you walk around funny and sit in strange positions, putting pressure on ligaments, etc
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Re: Have we all something in common other than "V" ofcourse???

Post  Fingerscrossed on Fri Nov 22, 2013 3:12 am

I had surgery on my back for kyphosis (I also have scoliosis) when I was 12. I have wondered for a while if it is related to my vulvodynia. I have considered going to a chiropractor, but haven't done it yet. Next month, I'm set to have a vestibulectomy, but if that doesn't work, I'm going to go do chiropractics. Of course, right now I have even bigger concerns. I've had what appears to be a UTI for a week and the antibiotics didn't work. I'm going to the doctor for that tomorrow. I'm so scared that it's going to be IC (Interstitial Cystitis). I scored high on everything for that except for the potassium test back in March.

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Re: Have we all something in common other than "V" ofcourse???

Post  Kathy100 on Fri Nov 22, 2013 3:14 pm

I was told that the muscles in my lower back were weak and that could be causing the v by irritating the nerves, also found out my pelvis was mis-aligned too. Since I've had physio and had my pelvis re-aligned both my back pain and my v pain levels have dropped. So for me, there was definitely a link.

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Re: Have we all something in common other than "V" ofcourse???

Post  Livinginpain on Mon Oct 06, 2014 10:28 pm

Others have commented on low back pain, one of my doctors has mentioned Pudendal Nerve Entrapment. i do have low back pain and diagnosed with neuropathy. I have dark brown hair, brown eyes and olive skin. It's worth a look. Plus another doctor mentioned "fibromyalgia" as a precursor or related some how. I get the crazy pains like my muscles are twisting away from my bones especially in my shin area now my bone is protruding, I remember being in agony when this happens, unable to relax or sleep. Now this is happening again in my arms but testing is negative. I was diagnosed with "chronic pain" not fibromyalgia because I didn't have pain in the trigger points that day.

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Re: Have we all something in common other than "V" ofcourse???

Post  leitheij on Wed Oct 08, 2014 1:28 pm

I have facial pain, severe anxiety and migraines in addition to the vulvar burning. I go to a head pain Neurologist and I have also consulted with a Neurosurgeon. Both the Neurologist and Neurosurgeon both agree that I have an overactive and highly sensitive Central Nervous System and that whatever was the original stimulus that caused the pain has just continued long after it should have. So, if you have another pain condition like migraines, IBS, fibromyalgia, it's not unusual that you would develop a condition like V. I think that we just feel pain more so than somebody who doesn't have a condition like this.

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Re: Have we all something in common other than "V" ofcourse???

Post  mirror on Sat Oct 25, 2014 5:41 am

I have type two diabetes, occasional high blood pressure, depression, anxiety, constant fatigue, and acne around my mouth and jawline. I am also fair-skinned with dark hair and eyes, if that even matters. I was sexually abused and bullied during my childhood. And I've been suffering with this problem as long as I can remember.

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Re: Have we all something in common other than "V" ofcourse???

Post  Mariek on Tue Mar 10, 2015 4:30 pm

I'm almost 59 years old, weight about 165, dark brown hair, blue eyes, no back pain ever, arthritis in both knees and left hip, along with bercitus which I have been going to physical therapy for. I had a vaginal hysterectomy in 2011, left ovaries in, and high colorestol which in my case hereditary, taking meds for that. Never totally died my hair, highlights yes!

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Re: Have we all something in common other than "V" ofcourse???

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