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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

I'm healed

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I'm healed

Post  HopeandFaith on Sun Jun 30, 2013 2:22 am

I'm healed and like so many I'm still confused, grateful but confused. The one thing I can definitely attribute to my healing is my unwillingness to live with vulvodynia.

Its been 3 and a half years of sheer terror. I've been to every place the other women here have (except surgery), begging to live, begging to die, praying for a cure, a miracle, and answer, then praying to die, then not praying at all.

I wish I could give you specific steps to help you heal but I can't really see I got a true miracle, I'm fine but I don't know how it happened. Maybe just time, as I've read from others. Maybe the chiropractor, the accupuncture, the tapping, meditation, yoga, nortrityline, lidocaine gel 5% topical at night, the episiotomy scar massage and stretching of the vulva, the gluten free diet, the B12 and other vitamins. Just writing this is exhausting. Let me tell you what I think I know.

Its started with chronic yeast infections and a dose of monistat 3 day
I was diagnosed with vulvavestibulitis.
Prescribed biofeedback and nortriptyline 5mg, at night, now up to 10mg (i'm scared to stop taking it)
Estrace cream two a day to vulva
I had pain and burning like sitting in acid on both sides of the vulva
Right side pain subsided in three weeks after starting the above.
Left pain subsided notably but did not go away for another year plus
Never had painful sex, in fact sex distracted the pain until it was over then it would be agony
I never had pain at night, once asleep I was pain free - this is a sign that the pain may not be 'real' meaning there is no infection or misaligned back etc, it may be the nerves in the vulva overreacting to earlier chronic infection and sending pain messages to the brain
What I know is that this can really be caused by so many things, there are so many stories of anguish and some of hope.

I used to cry when I woke up because my prayer at nights would be to not wake up. Its been a lonely heartbreaking, relationship eradicating journey through the depths of despair.

If you can, please hold on, please keep trying, through all the disappointment, which just shreds you to pieces - I know, through all the loss and all the fear.

Since I obviously wasn't going to die I became determined to live and to live without pain and I am here someone living without pain.

Love and hope to you all.


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Re: I'm healed

Post  Sarah001 on Sun Jun 30, 2013 11:38 am

I'm really pleased you are painfree again however I want to make sure other women don't get confused by the part about pain at night, the lack of pain at night can still be musculoskeletal as when you lay down it takes the pressure off the muscles that are tight which in turn relieves any nerves affected by them so other ladies reading this please note no pain at night does not rule out misalignment etc. But congratulations and long may it last for you!

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Re: I'm healed

Post  Kathy100 on Tue Jul 02, 2013 2:41 pm

I'll second Sarahs post. I found that through physio that my pelvis is mis-aligned & my left hip / shoulder are twisting forward plus my lower back was compressed which was causing pressure on the nerves and then causing the pain. When I lie down on my back there is no pain as I'm stretched out but on my sides unless I use a pillow between my knees there is pain.


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Re: I'm healed

Post  Delilah1 on Thu Jul 04, 2013 1:48 am

Thank you for sharing your story! It is so encouraging to hear that you are feeling better. Vulvodynia is such a crazy, horrible thing to live with. It is unbelievable to me that so many women have suffered with this for years and the medical community knows so little. I keep telling myself that I will be pain free one day and feel normal again. I have had days recently when the pain/burning has been minimal and I tell myself that is proof that my body is fighting this and winning. Did you notice that your healing started in this way? Was it a gradual healing? I have noticed that I am not quite as dry as I was when the pain was at its worst and the red spots have disappeared on the left side of my labia minora. I think the burning pain is receding but now I am feeling more of a rawness or soreness in the vestibule. I still have the red lines/spots on the right side but I think the tissue in the whole vulvar area is becoming less red and more pink like I used to be some days. I was told to use Crisco to moisturize the skin. Have you ever tried that? I haven't tried it yet. Afraid to put anything on that could set me back. Do you think the Nortriptyline is what stopped the pain burning for you? Are there any things that you noticed changing along the way that made you think you were getting better slowly?


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Re: I'm healed

Post  tinkerbelle2 on Mon Sep 30, 2013 10:23 am

Congratulations! So happy for you!

This is heartwarming to read & gives me hope that all of our pain and irritation CAN go away. Smile

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me too

Post  mushroomvisionlala on Mon Sep 30, 2013 4:02 pm

Im so traumatized by what Ive been thru, years of hell and despair, living a half life cuz of the chronic pain, and shame, its like I have Post Traumatic Shock Syndrome.
I attribute my healing to God too.
Now I have to do what I promised to him, for healing me. (live a good life) be a Good person, etc) had to revamp my views on sex, etc.
I never want a chastisement like this again, ever.


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Re: I'm healed

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