Vulvodynia Support
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» Hope to all my suffering ladies
Have we all something in common other than "V" ofcourse??? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Have we all something in common other than "V" ofcourse??? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Have we all something in common other than "V" ofcourse??? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Have we all something in common other than "V" ofcourse??? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Have we all something in common other than "V" ofcourse??? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Have we all something in common other than "V" ofcourse??? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Have we all something in common other than "V" ofcourse??? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Have we all something in common other than "V" ofcourse??? EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Have we all something in common other than "V" ofcourse??? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


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

+11
Kathy100
Fingerscrossed
mary jane
aajoycex
Alana3
EviE°Bee
Sarah001
burningturning
tinkerbelle2
Delilah1
zarli
15 posters

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

Post  zarli 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:) 

zarli

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Post  Delilah1 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

Delilah1

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Post  tinkerbelle2 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.
tinkerbelle2
tinkerbelle2

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Post  zarli Wed Oct 09, 2013 9:53 am

thanks girls I related to both of you!!!

zarli

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Post  tinkerbelle2 Wed Oct 09, 2013 10:08 am

zarli wrote:thanks girls I related to both of you!!!
Xxxxx I love you 
tinkerbelle2
tinkerbelle2

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Post  burningturning 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.

burningturning

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Post  zarli 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!!!!!!!!!

zarli

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Post  burningturning 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.

burningturning

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Post  Sarah001 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.
Sarah001
Sarah001

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Post  EviE°Bee 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.

Evie bee

EviE°Bee

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

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

EviE°Bee

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Post  tinkerbelle2 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.
tinkerbelle2
tinkerbelle2

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

I was 26

EviE°Bee

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Post  zarli 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..........

zarli

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Post  Alana3 Sun Oct 13, 2013 10:41 am

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

Alana3

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Post  tinkerbelle2 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
tinkerbelle2
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Post  aajoycex 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!

aajoycex

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Post  mary jane 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
mary jane
mary jane

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Post  Fingerscrossed 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.

Fingerscrossed

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Post  Kathy100 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.

Kathy100

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Post  Livinginpain 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.

Livinginpain

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Post  leitheij 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.

leitheij

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Post  mirror 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.

mirror

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Post  Mariek 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!

Mariek

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