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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

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 …

Comments: 9

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: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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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.

Comments: 3

21 years old, Self diagnosed, have had for 5+years

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21 years old, Self diagnosed, have had for 5+years

Post  fleshmannequin on Wed Mar 27, 2013 5:58 am

My story is sort of long, but hopefully someone will read this! I really just want to get support from others, and know that I'm not crazy and alone in this suffering!!

I'm 21 years old, and I've had what I think is vulvodynia (and possibly vaginismus) for at least almost 5 years. On some level though, I think I've had vulvodynia my whole life. When I was very small I would often complain of vulvar pain (with no physical cause) and had trouble with bubble baths and riding bikes, etc. Things got worse when I became sexually active nearly 5 years ago. Right before losing my virginity, I started to get horrible stabbing pains in my vaginal opening that would stop me dead in my tracks. I went to a gynecologist and couldn't complete the exam. She was very forceful and uncaring and it was horribly traumatic to me (I think this started my vaginismus). During the next few years, I was treated for several vaginal infections, even though later I now realize it was probably just the symptoms of vulvodynia mimicking bacterial vaginosis and yeast infections. So naturally, none of the medications worked, of course. After months of attempted to have sex, I finally was able to. It was not without pain, though. Only once in my entire sexually active life have I had pain free sex (right after I was able to have intercourse for the first time). I have had a few partners and many sexual encounters since then (due to long term monogamous relationships) and have had severe pain with each partner and each time. The pain varies with each time, sometimes I have to stop sex immediately and I literally cry in pain and have to sit on an ice pack to relieve the intense burning and stabbing pain. Other times, the pain is tolerable, but it is always there no matter what. It feels like my vagina is on fire. It is the most uncomfortable feeling. I have also developed urethral burning within the last year, that comes and goes without warning and leaves me huddled up in tears. I have found relief with a perineal wash bottle that I spray on my vulva, and it seems to help a bit but not for long. I am so depressed that I can not have intercourse, it is so emotionally and physically painful for me. None of my partners have been that caring about it, or tried to do anything about it which frustrates me. I am so hopeless at the thought that I will never be able to enjoy sex, and I will always have this fear in the back of my mind. Not to mention, I hardly have sex as it is due to the pain, and I still have sometimes debilitating pain on a near daily basis. Pants are even becoming uncomfortable, and underwear too. Everything feels scratchy and like it's rubbing me raw. My vagina always looks red and feels tender and hot. I'm at a loss of what to do, doctors can't help me at all. They keep doing cultures and saying everything is negative and they can only recommend sex counseling, which is not covered by insurance so it's out of the question for me. I believe I have vaginismus and vulvodynia together. (Perhaps the vulvodynia caused the vaginismus, due to fear of pain?) and I find myself crying so often due to the fact that I don't feel like a woman. I feel guilty as a partner that my boyfriend is now scared to have sex with me due to my constant pain. I'm so worried sex will one day be completely out of the question for me.. Can anyone give me any words of encouragement, or hope? Or has anyone found any relief, even if its just temporary? I'm at the end of my rope...
thanks guys!


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Re: 21 years old, Self diagnosed, have had for 5+years

Post  Alana3 on Wed Mar 27, 2013 11:24 am

Where are you from? This all sounds like me except mine was provoked not unprovoked like yours sounds. Im considered cured now but I had surgery to get that way. My advice is to not go crazy and try a million "cures" at one time but try one thing and if that doesn't Work go onto something else (after several weeks). A vulvodynia specialist is probably your best bet and you can either go on the nva website OR go to google type where your from and vulvodynia specialists and see if any are available nearby. There is hope im proof of that but you won't be considered for surgery until you exhaust a lot of stuff first (a lot of people aren't considered ever) but there is a lot of stuff you can first and try and get your v to feel better or go away Smile you'll be fine it just sucks waiting to get "cured"


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Re: 21 years old, Self diagnosed, have had for 5+years

Post  Loulou on Tue Apr 02, 2013 9:45 pm

Hi fleshmannequin

Its awful to hear that you are suffering. This is a horrible condition but don't let it beat you. There is hope - several people have posted in this forum about their successes and their cures have varied (e.g. physical therapy, surgery, elimination diets, antihistamines) so keep looking for your solution.

You say that you think you've had it your whole life - so have you/your docs looked at things you might have been born with like allergies or structural problems (in your vagina or pelvis - is everything where its supposed to be, the right size, with the right level of mobility etc). If you were born with extra or hyper sensitive nerves in your vulva then maybe medication (eg amtryptiline)and desensitisation through use of dilators could help? Last resort for that would be surgery. What i'm trying to say is that there are lots of potential causes, and therefore treatment options, to consider (sounds like your docs are trying to say its all in your head hence the counselling suggestion). Its NOT all in your head! I agree with Alana - find a vulvodynia specialist and don't rule anything out without exploration first.

I would guess that some of your increasing pain may be due to tight muscles thru tensing and guarding against pain (i agree with you that the vvd pain might be causing the vaginismus) so definitely get a physio to check you out for trigger points in your abdomen, bum, thighs and, if you can get to see a women's physio, pelvic floor. Releasing some of that tightness might provide some relief but you still need to get to the cause. And sounds obvious but have you tried some relaxation/meditation techniques to help you with feeling stressed/anxious? I know my pain used to feel worse when i was stressed.

For immediate pain relief you could try cold packs or lidocaine ointment. I found accupuncture helped with my pain in the early days so worth trying if you can.

You're only 21 but don't be intimidated by the docs. Do some research here and on the web, arm yourself with info and push for a vulvodynia specialist. There is definitely a treatment option out there that could help you.


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Re: 21 years old, Self diagnosed, have had for 5+years

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