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» Worsening vulvodynia, only 21
Today at 5:05 am by katj21

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» Vulvodynia- What's helping me get better
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Worsening vulvodynia, only 21

Mon Jul 06, 2015 5:05 am by katj21

Hello - bit of a long one. I'm 21, from the UK and was first diagnosed with vulvodynia at 18. I had previously had what I think was something like Chronic Fatigue Syndrome (exhaustion, nausea, muscle pain and skin soreness on and off, worsening over my last 3 years of school but doctors never gave me a diagnosis as I wasn't severe enough). I had this and recurring thrush before my vulvodynia …

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Vulvodynia- What's helping me get better

Mon Jun 22, 2015 3:03 am by Ellen1112

Hi guys, i've been battling with vulvodynia the last 9 months, I am 17 ans it's been a hard journey and i've been following this forum all through this, it was a great help, I loved seeing positive posts, so I decided to make one with the things that are helping my symthoms (burning/irritaed uncomfortable vulva, around urethra and clitoris). I had this first when I was 11, I was so young and I …

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How did you find this forum?

Mon Aug 02, 2010 3:36 am by Sebby (Admin)

Please state which search engine, forum or directory you found this forum on...fanx!

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Just diagnosed today: A bit about my case. Information about diagnosis appreciated.

Sat Jul 04, 2015 3:01 am by sweetstarfire

So 15 months ago I went to my gynocologist at the onset of my symptoms.  After a few tests she ended up telling me that I had a bacterial infection and gave me some antibiotics.  Now I have Cystic Fibrosis which is a genetic disease that is treated often with antibiotics so I have resistances to many of them.  She put me on one that whether a placebo effect happened or what I don't know but I …

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Vulvodynia my whole life & Vestibulectomy results

Sun Apr 05, 2015 3:42 pm by nola218

Greetings from upstate NY...

I feel like an expert on the subject of Vulvodynia. So much so, that I have had doctors admit to me that I know more about it than them. I'm sure a lot of you have seen this. So little is know about this in the medical world that it can become very frustrating to find answers.

I'm 30 years old. Ever since I lost my virginity at the age of 17, I have had vaginal …

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Please help

Wed May 20, 2015 8:21 pm by LadyDi44

Hi, my name is Diana. I am SO grateful to have found this website. Thank you in advance to anybody who takes the time to read and/or respond to my post!

I'm a 19 year old girl who began feeling the effects of Vulvar Vestibulitis (VV) a little over a year ago. I had developed what would end up being a chronic yeast infection due to a change in Oral Contraceptive (OC) -- this alteration in hormone …

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Femdophilus

Sun Jun 28, 2015 6:06 am by Gilli

Hi, does anyone know where I can buy Femdophilus in the UK? I really want to try it as it has good reviews, but worried that if I order it from amazon it will not be kept refrigerated before delivery?

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Any advice on with amitrytline?

Mon Oct 06, 2014 8:00 pm by Sparkle

Hello,

Anyone tried this in pill form? What's it's like? What side effects have you had? This is next on the list for doc to percribe me for my vestibular vulvadynia but I'm worried about the side effects.

Also did it work with anyone with provoked pain?

Any advice is much appreciated. X



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Glad I'm not alone anymore

Sun Jun 28, 2015 6:47 am by Gilli

Hello, I've recently been diagnosed with vulvodynia, after 15yrs of misery. I believe my problems started when I was 18 with a yeast infection. Initially I was diagnosed with thrush, and over the years I've used many antifungal treatments but my symptoms never went away, itching, burning and vulval pain. I saw many doctors and had all the tests for STI's, all negative, but have only had a …

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Evening Primrose Oil

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Evening Primrose Oil

Post  Grateful on Wed Jul 04, 2012 1:08 pm

I have been suffering with vulvar pain for eight years - just assumed it was part of menopause and growing older. I was using Vagifem vaginal hormone supplements and my doctor said everything looked fine but I was still experiencing excruciating pain whenever I had intercourse with a lot of burning and pain afterwards. I also experienced vulvar pain when bathing or using bath tissue. I finally turned to the internet and found the term for what I was actually experiencing. It was wonderful to know I wasn't alone and to read other women's advice. After reading some user's comments, I started using Evening Primrose Oil. I rub the oil from 2 500mg softgels on my vulvar area each evening before bed. The difference has been miraculous! Within one week I could tell a difference and within a month I was having intercourse again without pain. I feel like I have gotten my life and my marriage back. I would encourage every woman to at least try evening primrose oil to see if it will make a difference for them.

Grateful

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something else to try....

Post  blessed on Thu Jul 05, 2012 10:30 am

thanks for sharing this.. at this point i am trying anything that worked for others.. i have started primrose oil but have been taking i orally. i guess it makes sense to apply it directly. i am going to try this from today. hopefully i have some good results...my marriage could use a bit of good news.. thanks and God bless..

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Re: Evening Primrose Oil

Post  bluekangeroo on Thu Jul 05, 2012 10:39 pm

This is very interesting, thanks for sharing. What is the theory behind eve primrose oil being helpful?

I have found co-incidentally that during my period my pain eases off, and during my period I take eve primrose oil?! Hmmm maybe I shouldn't stop taking it when my period ends?

I had never considered getting the oil out of the pills and rubbing it on topically though. Can you really do that? And if so, how come nobody sells the oil in topical form? Or do they?

I would love to hear how anyone else gets on with this method if you try it.

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Primrose Oil

Post  Grateful on Fri Jul 06, 2012 10:24 am

I have tried to find Evening Primrose in just the oil form not caplets but haven't been able to find it so far. I just pierce a hole in the tablets and squeeze the oil out - it's a little messy, but well worth the effort. I do wish you could find it bottled as just oil.

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Essential oils are giving me a chance at an actual sex life

Post  lavrose on Fri Jul 06, 2012 12:29 pm

Ok guys. I promised God that if he helped me find a cure for this horrible, life ruining, afflicting, 24/7 misunderstood condition, I would share it with everyone, as I have done TIRELESS research, read every book, scoured the net, and consulted with many doctors. Im 32 years old.
Ive always had a problem with painful sex, and a constant burning vag, but recently I was diagnosed with something far more horrible. Interstitial Cystitus.
Painful Bladder syndrome. Many women with Vulvodynia, many times have interstitial cystitus aswell, and I do frequent UTI's and I control them with a daily probiotic, but this particular bladder infection would not go away. Guys, this condition has literally ruined lives. Women hav e to go on disability for it. Imagine a voracious, raging UTI that never goes away. ever. and there is no cure. Its one thing not to be able to have sex, or sit for too long, or wear anything tight. But to be aware of constant, swollen, urethral frequency and burning, having to go to the bathroom every five minutes, cant sleep thru the night, the pain is compared to Cancer. People have to go on methadone, and antidepressants over it. Anywho, After I wept and begged on my knees for God to cure me, and help me, and even called a prayer line (LOL!!) and cried on my moms shoulder, (she prayed with me for a cure also) I made an appointment with a Urologist in Cleveland, Ohio at the Cleveland clinic. The best in the country. I got diagnosed with Ureaplasma, and Im currently on a strong 30 day course of antibiotics, (augmentin, zithromax, doxicycline) then I will be on long term antibiotics for the duration, until I test negative, which could take over a year.
Many people dont know too much about Ureaplasma, so please, please google it, and try to find a doctor that will hear you ,and test you. There are links to this with V too.
The test is expensive, and many doctors havnt even heard of it, so you have to shop around. because Ureaplasma is linked to IC, (urethritis) it is also linked to infertilty, miscarriage, and premature birth. Maybe shop around for fertility doctors, say your trying to get pregnant, and your concerned about Ureaplasma. Its worth it guys, I feel 100% better now that I am taking the proper treatment. This little bacteria is prolly the the one responsible for a lifetime of pain, and ruined relationships.
The oils. I make suppositories with coconut oil, (frozen, in sport bottle ice cube trays) with various essential oils, and Ive been able to have a sex life and sometimes, pain free sex life, since I started this. The thing is. You have to rotate the oils, I learned this. For a couple of years I was just using tea tree (and douches are horrible by the way, please dont put them in douche, been there, done that) after awhile, it didnt work and I didnt know why. The Boric acid suppositories. Worked for awhile, then didnt work at all. Then Myrrh oil. Which is great by the way. Then lavender and rosemary oils. Also awesome. Then Tyme oil, and oregano oil. Awesomness. Also, grapefruit seed extract is great too. Now Im doing Geranium oil, and its the skin of my vag is very soft and supple, non itchy and completely burn free. It feels strong, and healed...Im totally down for sex atm Smile), but currently single again Sad(..but yea. Start out with a few drops, first few days, then work your way up to where you feel comfortable. I use quite a bit, especially for raging pain or infection, but everyones different.Theyve been working out great for me, but it has been such a long road. Ive read about many women just giving up, but dont please.
Wise women of antiquity have known about essential oils treating women's problems and vaginal infections for many centuries now. I admit, I was scared too and hesitant about putting strange smelly substances up there, but it is so worth it. Some days, I feel almost normal down there. Like when I was young. Also, change of diet, (more fiber, vegetables, green smothies, teas, wheatgrass shots) have made it possible to live a normal life, and be a healthy person again, and maybe a chance at a fulfilling relationship. Also, having constant vaginal infections CAN impact fertility. and I am hoping to get pregnant again. God luck and God Bless. God knows how much I have suffered and I prayed day and night for a cure. To be healed, and cured is the greatest blessing of all, the greatest blessing God can give you. And this is when he makes his presence known. When God heals you, when he has answered your prayer.

lavrose

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period

Post  lavrose on Fri Jul 06, 2012 12:35 pm

and yes, my vaginal pain and symptoms do go away on my period, and sex feels alot better too. Weird. Ive also read about women being able to control their yeast, and bladder symptoms with coconut oil. Typically 3 to 6 TBLSP a day, everyday. I do eat coconut oil, but not that much!! LoL, I saw it made my skin glow, and look great, and I felt better, but it didnt do alot for my V. so....plus it makes your hair oily Sad

lavrose

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Mucho Love

Post  lavrose on Fri Jul 06, 2012 12:38 pm

anyway, much Love guys, Its so hard feeling like your the only person in the world with a Cur-SED Vagina!!! Its rough. And guys think your frigid or something. So not true, but whatev. Theres a reason for everything, and I count my blessings everyday. Love you guys Smile flower I love you

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