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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

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: 10

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


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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