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» 7 months since the diagnosis
Thu Aug 16, 2018 9:09 am by Gaby

» Did going off antidepressants cause this?
Wed Aug 15, 2018 2:08 am by ryn207

» Sex after vulvodynia (husband edition)
Mon Aug 13, 2018 12:15 pm by emalita

» burning sensation and small cut? Maybe thrush?
Sun Aug 12, 2018 8:24 pm by emalita

» can v return after vestibulectomy?
Sun Aug 12, 2018 12:01 pm by Alana3

» Cleveland Clinic - Pain Management, Weston, FL
Sat Aug 11, 2018 12:37 pm by Alana3

» Hurting, Burning, Itching, and Worn Out
Fri Aug 10, 2018 7:55 pm by fairlight10

» GREATFULL FOR THIS WEBSITE
Thu Aug 09, 2018 8:37 pm by Nicola Jost

» Can you guys tell me your experiences with diflucan/Fluconazole?
Tue Aug 07, 2018 6:01 am by Guest

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 …

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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 …

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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 …

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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

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


Suicide seems my only option!

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keep this thread going please

Post  sadone on Sun Dec 07, 2014 1:47 pm

I too feel like suicide is my only option. I've had V my whole life. I had an understanding bf who is leaving me now b/c he said he needs vaginal or anal sex.

I feel like a thing.

And I'm not young. I just turned 50. I don't have children.

Failed relationships because of this. I wasn't diagnosed until I was 44.

I think that suicide is my only option now. I have lost all hope. And I'm very lonely now without him.

I have a few friends and some family, but they are busy with their own lives. I think everyone would be happier if I were dead.

I can't live like this anymore.

sadone

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Re: Suicide seems my only option!

Post  Sparkle on Mon Dec 08, 2014 8:01 pm

Please don't do that. I'm sure U have plenty to live for.. I know it's hard to live with this horrible condition but don't let it win! Your freinds and family would be so sad to not have you in thiwr lives anymore. It's hard to see a way out and I can understand at the minute U are fwwling lonely and greiving over your past relationship but please don't think killing yourself is your only option.
Have u got a doctor u are seeing? What methods have your tried to get some relief?. I'm so sorry you are suffering like this...
Its hard dealing with a break up and even harder when u have this horrible condition aswell but please don't do anything to yourself. If yor doctor isn't helping then go see another one. And keep changing until u get one that can help u.
I hope my reply hasn't come to late....
I'm here if u need to talk or somone to off load to, u can PM me or reply on here xx

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...

Post  lavrose on Sat Dec 13, 2014 12:56 am

Listen to me, please don't think like that. I am where you are right now, please. Life is not meant to be easy, life is meant to be hard, we are meant to pass through these things, these chastisements, maybe you need to get in touch with God. Not to be all preachy or anything, you have to think about what monks and nuns went thru, I pray..

Here is a link to video of a beautiful young women who attempted suicide and went to a personal Hell, but spoke with someone (a light being, Jesus) that explained to her that life was not meant to be easy, and her life was not hers to take,  and her children needed her, and by killing herself, she would emotionaly and spiritually scar her children, specifically her son, so much, he would be rendered incapable of functioning in life, it would ruin his life, so please, please, WAIT..wait for a cure. Hold on. We don't know if there is life after Death, we don't even know, we cant understand..if the link doesn't work, just go on youtube and look up suicide nde and hell- Angie Fenimore. Its a powerful video and it helps me.

I had a best friend that killed herself, and it was awful for her family, especially her children, and she was beautiful, so please. You can try some essential oil therapy which helps give respite to the pain (for me anyways)..https://youtu.be/bWjH8hAFYkw


Last edited by lavrose on Sat Dec 13, 2014 1:02 am; edited 1 time in total
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Post  lavrose on Sat Dec 13, 2014 12:57 am

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no suicide

Post  lexiharley on Tue Dec 30, 2014 5:37 am

I was where you are now. I didn't think I could live with the pain..i had no life but the v. It consumed my day with thoughts of how I could manage to live with this. I lived in hell for a few years with this but then got the right doctor who understood this. I went on clonazepam andamytriptyline and in time it started to get better. Sometime it reminds me its still here and I have limited my activity and listen when my body tells me YOU CAN"T DO THIS. Don't give up there is help you need to keep looking and going to doctors till one helps you.

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Re: Suicide seems my only option!

Post  JulesB on Fri Jan 16, 2015 8:18 am

Kate, I know how you feel. But DON'T GIVE up! There is a solution for you out there, you just need to find it. Try Saginil gel (available online from Epitech), try acupuncture. I know, at first I thought - acupuncture, bit whacky - but it worked wonders for me. And is can't do any harm if it doesn't work....... You need a wester acupuncturist, look on the internet for accredited ones. I went for someone who was already medical (a GP) who had trained in acupuncture.

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Re: Suicide seems my only option!

Post  JulesB on Fri Jan 16, 2015 9:18 am

Oh, yes, I forgot - try coconut oil. I apply it several times a day (in fact after every time I got to the loo). I use organic virgin coconut oil from the Groovyfood company - available form Waitrose and Tesco. And take it easy! Build things up slowly. I am lucky that I work mainly from home, so I was able to go around with baggy jiggers on and no knickers. And I just sit all day on the computer (kneeling on my seat). It takes time. For fuller details of what worked for me, see my post "what worked for me".

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Re: Suicide seems my only option!

Post  Mariek on Tue Mar 10, 2015 3:39 pm

Kate1981, please let us know if your are still alive. We are worried about you!

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Re: Suicide seems my only option!

Post  drivenbyambition on Sat Mar 14, 2015 4:53 am

I hope that you are doing well. This condition is debilitating, but your life is worth living for.

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I found a cure... please please try this

Post  sarisbaris on Wed Mar 18, 2015 4:22 am

I'm not joking or giving you false hope. I've been pain free for over a year already. Here is the short story: I had vulvodynia on and off for 15 years.  Got pregnant and it was horrible. Everything below (including acupuncture/TCM herbalist) helped but wasn't a cure.  I found a practitioner of Acupoint Nutritional (or Integrative) Testing who finally pinpointed the cause of my pain and alleviated my pain in a few months. It was a slow progress (a few months) but it was a permanent fix. Basically she just gave me a bunch of pills that were all herbal and natural. I was pregnant at the time. I'm so grateful. (This won't allow me to add a link but just google Dawn Dolan in Cotati, CA) Basically, she uses applied kinesiology to figure out the cause of my the problem and the remedy. Sounds crazy but it worked! She said that if you are not in the northern California area she can help you find a Acupoint practitioner who can help. This is legit.  I'm sorry I didn't post sooner, I've been busy with my baby. That pain was freakin unbelievable. Please give this a shot. Let me know if you have any questions.

According to her, I got a staph infection when I had knee surgery in my teens.  That staph infection eventually stayed with me and found a home in my vagina. Awesome. Sounds a bit strange but her stuff worked so I'm not going to argue. Western medicine is great at times but vulvodynia is beyond them probably because there is a different cause for it in each person.  (That's just my hypothesis) Mine was burning and hot, like a chemical burn. Here are some of my remedies that helped the pain until I found her.

I figured out a green drink that would take away my pain away in 25-30 min without fail, at least for me.  

MIRACLE GREEN DRINK
1 bushel of cilantro
½ cucumber
1 celery
2-3 lemons
1 lime (optional)
Filtered water
1 packet of stevia
*It's really all about the cilantro and the lemons. They are the most powerful ingredients.

Reverse Osmosis Water
I also started (and still do) drink only reverse osmosis water. That also helped a lot and you'll never want to drink anything else. Still to this day if I drink tap water for more than a few days my urethra will be irritated.

Braggs Apple Cider Vinegar Drink
1T in glass of filtered water (helps vaginal burning but I found the green drink worked faster)

Also, don't eat sugar, fried food, anything that is acidic, my vagina is much happier and of course, sex much better. Do some research about the akaline foods in contrast to acidic foods. That helps a lot. (Now that it's been over a year, I eat whatever I want. Sugar and all. Don't worry you'll get there, just let you body heal first)

Shuangliao Houfeng San (to use internally, keep it in your purse and use it during sex... my vagina loves this stuff. Use just a little... it's super strong)
My acupuncturist recommended this to me when the inside of my vagina gets too hot. TCM (Traditional Chinese Medicine) doctors usually recommend this for a sore throat. Use a little bit of organic sesame seed oil (not toasted sesame seed oil or your vagina will smell like Chinese food… I learned that the hard way) and a little little bit of this powder on your finger, insert into your vagina, rub it around and wait a few minutes. Another freakin God-send! When you are doing this for the first time, please use just a little bit of the powder. It’s really really strong.  The first few times, make sure you are next to a hot bath so you can soak if you use too much. The powder smells something awful but who freakin gives a sh-t if your vagina stops burning.  When my vulvodynia subsides enough to have sex (with intercourse) we put a little of this stuff on my partner and it is freakin awesome. You can buy Shuagliao on amazon.

If you have any questions please send me a message. I would love to help you anyway I can.  I'll be praying.

sarisbaris

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sarisbaris--question about staph infection

Post  Toobusy9561 on Thu Jul 09, 2015 11:41 pm

Did you have any other symptoms of staph? I ask because I have folliculitis on my vulva, my scalp and in my nose. My gyno just does a visual for infections and I swear I have some kind of infection going on that is causing a lot of my symptoms. I have to wonder if there is a connection with the folliculitis (usually staph infection but can be yeast) and this my burning/hot vulva. So I found your post to be very interesting!
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Toobusy9561 - It sounds like there's a connection!

Post  sarisbaris on Fri Jul 10, 2015 5:19 pm

I'm so glad you found my post helpful! Along with vulvodynia, I also was prone to bladder infections. But I was able to easily fix those with a drop of melaleuca oil rubbed into the urethra when it got too warm (only use the kind from the company Melaleuca... other brands don't work. Available on Amazon) I also rinsed with cold water after every time I pee. And yes, I had a sensitivity to yeast/wheat/sugar/dairy. Until you get fixed, removing yeast/wheat/sugar/dairy (besides kefir) will help. And try that green drink, it was my saving grace. Or try listening to your own body and see if it can lead you to a green drink recipe of your own.

Please trust your gut! If you think there is a connection, I'm sure there's a connection! That's a hard lesson to learn... to trust yourself and your body. If your current medical doctors aren't helping, then you need to be brave and try practitioners outside your comfort zone. Most doctors (western/eastern/alternative) will not tell you that they don't know or can't help you. I went to 15 western doctors until I realized they don't know sh-t about vulvodynia) which was a very painful, literally painful lesson to learn. Then I tried acupuncture and Chinese herbs. These helped and kept it away for 10 years. But then it came back full force when I was pregnant and all my Chinese doctors didn't help this time. I walked away in tears from one who I thought was my last hope.  My sister basically had to drag me to an alternative doctor (Dawn Dolan in Cotati, CA) and I had to go out of my comfort zone again. Thank the Lord she did because Dawn cured it for good. Doctors won't usually tell you their limitations, unless they're exceptional and mature. If you find these doctors, keep their card, they will probably be able to help you with something at some point. I have found a Chinese herbalist who can cure a cold in 24hrs and my acupuncturist induced my labor when I was 2 weeks late. A lot of doctors are good at something... you just need to find the one that is good at the thing you need.

And don't worry about finding your exact symptoms online. Every body responds to things differently. I would recommend Dawn Dolan (Cotati, CA) and if you're not in the area she can give you the number of someone in your area. Unfortunately the practitioners who do what she does are not well organized. But hopefully she can lead you to the right person.

Again... I'm so sorry you're going through this! Let me know if you have any other questions.

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Re: Suicide seems my only option!

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