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» It feels like I’m going to have pain forever
Yesterday at 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Yesterday at 10:01 am by dunkelma

» It feels like I’m going to have pain forever
Yesterday at 8:51 am by dunkelma

» Honey decreased my pain considerably!
Sun Jul 15, 2018 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Sun Jul 15, 2018 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Fri Jul 13, 2018 2:58 pm by Gaby

» Hi girls! New in this forum
Fri Jul 13, 2018 2:31 pm by Gaby

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: 1

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: 9

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 …

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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: 1

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: 5

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


7 year old with vulvodynia

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7 year old with vulvodynia

Post  KHarris on Tue Jul 27, 2010 12:39 am

My 7 year old daughter has had vulvodynia since Feb 2010. I'm looking for othere mothers of children with this condition, as it's hard to find women in my shoes. Thanks for your help and good luck to everyone!
Kimberly

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Re: 7 year old with vulvodynia

Post  Sebby (Admin) on Tue Jul 27, 2010 9:12 pm


Welcome Kimberly,

I do hope you can find other mothers dealing with this.

Even so I hope we who have Vulvodynia can also offer our support and advice to you.

Godbless

Sebby
xxxx
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5 year old vulvodynia

Post  Vickie22 on Sun Feb 26, 2012 8:27 pm

I think my daughter has this too. Have you found any relief or help yet? We have tried several Doctors and finally are going to a pediatric gynecologist tomorrow. It is red, burning pain in the vulva area. Very painful. I think I have linked it to her diet. She can't have fruit, citric acid, tomatoes, or spicy foods like sausage. We have had very few pain free days. Worse at night. Usually once a week it is hard to get her to school because of her pain.
I'm finally sending her own lunches. She can't have candy with citric acid or chocolate I'm now thinking causes a flare. We have learned from trial and error that sodas have phosphoric acid in it if not citric acid. So, we cut them out. Some flares last 1 day and is better by the next morning, but start all over with something else she may have eaten. The worst flares are 4 days and then some relief. She wants to go the Dr. but nobody can help us. We tried all sorts of creams, but they seem to hurt too. So, switched back to nothing but water and vaseline. We have seen a urologist who said maybe IC, but she does not go tot he restroom frequently. The IC diet seemed to work and help, but I just discovered this Vulvodynia and it seems to hit the nail on the head with her. There is a vulvodynia diet with low oxylate foods. So, now I'm trying to figure it out even more. It is so nice to see she is not the only child searching for help. We have had it since she was 2 that I know about, when we tried to get her potty trained as quick as possible, because I thought the burning was the diaper rash or urinary infection. But, the UI results always came back negative.

If anybody can help me please let me know. We have seen a dermatologist who was the first to believe me that diet caused her to flare. The others did not help: Urologist, gasterointerologist, pediatrician (of course), 2 allergist, even consulted an online doctor and soon a pediatric gynecologist.

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Re: 7 year old with vulvodynia

Post  mmorgan on Tue Feb 28, 2012 4:45 pm

I know there was a lady whose twin boys had penial pain and she was a firm believer in the low oxalate diet. Check past posts.
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Reply to child with vulvodynia

Post  Debbie627 on Tue Jul 10, 2012 3:30 am

Do you use a liquid laundry detergent like Tide free and gentle? Most liquids contain an ingredient called propylene glycol, which caused my vulvodynia. This ingredient is also in sodas, ice cream, cake mixes etc. read your labels. I'd be happy to have a personal chat with you or others if you want to explore this topic further. Let me know and I'll post my email address.

Also, most medicines prescribed by doctors to cure this condition also contain propylene glycol...read your labels and avoid all ointments and creams containing this ingredient. You will see the results within 24-48 hours.

Would love to hear how this turns out for you.


Last edited by Debbie627 on Tue Jul 10, 2012 2:45 pm; edited 1 time in total (Reason for editing : Spelling)

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Reply to child with vulvodynia

Post  Debbie627 on Tue Jul 10, 2012 3:35 am

Also be aware of wet wipes. They also contain propylene glycol.

I also found that the pain was worse at night. The reason was because I was applying al of the medicines during the day that were creating a cumulative burning sensation throughout the day. If any of you of you find that your condition is better In the AM and worse at night, then you need to consider propylene glycol as the root cause of the problem.


Last edited by Debbie627 on Tue Jul 10, 2012 2:44 pm; edited 1 time in total (Reason for editing : Spelling)

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Re: 7 year old with vulvodynia

Post  kellybeth on Thu Aug 16, 2012 11:48 pm

hi my daughter is 8 and was diagnosed with vulvodynia around a month ago. it all started when she was 3 years old and was always put down to urine infections. she is currently undergoing pain management at great ormond street hospital. she has been put on 10mg amatriptline,this does not help her one bit just makes her into a zombie :-( she spends nearly every night in pain,its heartbreaking. i wish your little one all the best
kelly xxx
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Re: 7 year old with vulvodynia

Post  LillyK on Sun Sep 02, 2012 5:05 am

I'm so sorry your little one is going through this!! I wanted to second the recommendation for free and clear type detergents. Also, NO baths, ever. Have her take a shower. All white 100% cotton underpants. And lots and lots of water. These things all helped me. Also, if she isn't terrified of it, I highly recommend acupuncture. It helped me be pain-free after just 4 months. You may also want to take her to a chiropractor to see if maybe she is out of alignment somwhere and that could be affecting her. Poor baby. This is hard enough as an adult, and as a mom myself, I know you are hurting for her. I hope you have found some success since your last post.

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Re: 7 year old with vulvodynia

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