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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 3

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

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

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 …

Comments: 8

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: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

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 …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


National Vulvodynia Association - share your story

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National Vulvodynia Association - share your story

Post  Sebby (Admin) on Tue Jun 11, 2013 9:00 pm


Please see copy of email and submission details below:

Research shows that 50% of women with vulvodynia do not seek medical care, and of those who do, as few as 2% are diagnosed! Women also still report feelings of isolation, invalidation and stigma, and as few as 25% report feeling comfortable discussing vulvodynia with close friends. To help women and girls with vulvodynia feel less isolated, advocate for themselves and seek appropriate medical care, the NVA would like to hear from those who are willing to share their experiences in our online/printed materials. We want vulvodynia sufferers who read our materials to "see" and understand that they are not alone and that there is hope for them. By sharing just some of your story, you are in a unique position to provide invaluable support and encouragement to other women and girls.



Presently, we'd like to hear from those who have experiences to share in the general categories listed below. Please send your response to any of the questions listed below (of 500 words or less per question) to cshea@nva.org. In your email, please:

(1) Specify how you would like your name to be listed should we have an opportunity to use it in some of our materials; for example, anonymous, first and last name initials only, first name only, full first name and last name initial, etc.

(2) Attach a recent photo of yourself (if you are comfortable with us publishing this along with your story);

(3) State that you give the NVA permission to publish your response(s).



If we are able to include your submission in any of our materials, we will notify you and send you a final draft to review and approve prior to publication.


Thank you for sharing your experience with other women with vulvodynia. Together we can overcome the feelings of isolation that accompany this disorder!


Question Categories:



(1) Managing Symptoms
◦How has educating yourself about vulvodynia helped you to better understand the disorder, obtain effective medical care and treatment and/or advocate for yourself?
◦Has educating yourself (and others close to you) helped you to overcome any initial embarrassment, isolation or stigma that you felt when first diagnosed? If so, how?
◦Besides medical treatment, what techniques do you use in your everyday routine to help control vulvar pain symptoms and the disorder's impact on your overall quality of life and well-being?

(2) Emotional and Interpersonal
◦How do you cope with the negative emotions brought about by vulvodynia?
◦How have you addressed and dealt with any sadness, stress, anger, anxiety and/or other emotions directly related to your vulvodynia?
◦Outside of your intimate relationship, how has vulvodynia affected your relationship with your significant other or spouse, and what have you found to be particularly helpful in coping with this to maintain a healthy and happy relationship?
◦How do you work to maintain an intimate relationship with your significant other or spouse in spite of vulvodynia?
◦ How has vulvodynia affected your relationships with close friends or family members? What have you found to be particularly helpful in coping with this and maintaining these relationships?

(3) Activities of Daily Living
◦How do you manage daily household responsibilities when vulvar pain interferes with your ability to carry these out?
◦How do you handle family responsibilities (spouse, children, etc.) during these times?
◦What techniques do you use to address the challenges vulvodynia brings to your workday (e.g., pain from extended sitting, lack of breaks, etc.)?

(4) Advice to Others
◦What advice would you give to a woman or girl who just began to experience vulvar pain symptoms or was recently diagnosed?
◦What advice would you give long-time vulvodynia sufferers?
◦Have you ever received any advice that you found particularly helpful from someone else?


Contact Us


National Vulvodynia Association


PO Box 4491, Silver Spring, MD 20914-4491

301-949-5114 (phone) | 301-299-3999 (fax) | www.nva.org

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Sebby (Admin)
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