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Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

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: 4

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: 3

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


Absolutely desperate! I've been in pain for 30 years - please help!!

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Absolutely desperate! I've been in pain for 30 years - please help!!

Post  Mish on Mon Oct 08, 2012 11:09 am

Hi everyone,
I have always lived with pain and the pain has broken up every relationship I've ever had. I find men very cruel about and even though I was diagnosed in 2008 no-one seems to be able to help. I'm finally absolutely desperate and if anyone here can recommend someone in Melbourne - I don't live in Melbourne but I'll travel anywhere!! I'll do anything!! I have chronic fatigue, thrush issues, chronic tonsilitis, period problems, constant bleeding and I just can't get any answers. Please please if anyone can help, I'm so desperate!! Thank you and thank you so much for having this support group!!!
Mish Sad(

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Re: Absolutely desperate! I've been in pain for 30 years - please help!!

Post  Char29 on Wed Oct 10, 2012 8:06 am

Hey there - I know what you mean!!!
I am in Perth and found Marek Jantos who travels around Australia to help ladies!!! Find his website and check him out.
He is based in Adelaide.
Where do you live?
I have had this for almost 40 years now and only stopped my treatment with Marek due to finances.
I am now changing my diet, using coconut oil (on my nether regions) and it seems to be helping.
Don't lose hope. I was close to doing that the other day and then I found this site and learnt things that I did not know before.
We will all get through this together!!!
Good luck
Charmaine xxx (((hugs)))

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Girl, I know!!

Post  lavrose on Thu Oct 11, 2012 8:58 am

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 ), but currently single again (..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.
The relationship part of this::

Ive lost amazing men,and amazing opportunities at an awesome sex life, mind blowing sex, because of this condition. My daughters father left me, and another guy I really Loved left me aswell, and told his best friend that I was frigid.
Sex hurts. There have been rare times for me in life where it didnt hurt, and Ill remember those times for the rest of my life. I have suffered every horrible experince you can imagine, becuz of this. To having them cheat, to leaving me, to seeing people that I Love suffer, and be frustrated and feel guilty, becuz they want normal awesome sex, with someone healthy, and feel bad about it. Its awful. Not only does this problem, destroy your sexual desire,and affect your hormones, its makes your vagina very dry. Since I started the essential oils, I actually have pain free sex sometimes, and normal vaginal discharge. Also probiotics everyday are a must!!
New oils I am trying. Palmarosa, lemongrass, eucalyptus, and manuka oil. East cape manuka brand. ) Good luck and much Love. I still feel like the only women in the world with this issue, and I feel cursed sexually, and it helps my psyche so much, to know that I am not the only one.

lavrose




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ureaplasma

Post  lavrose on Thu Oct 11, 2012 9:00 am

Please get tested for ureaplasma, or ask your doctor for doxicycline, and or Z pack. Take these things for atleast a month, or two, until you test negative for ureaplasma.

This pretty much cured my years long, vaginal issues.
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Learning

Post  lavrose on Thu Oct 11, 2012 9:07 am

Now that I have a normal vagina, and just began a normal sex life, where I can have sex everyday, and also, not be in pain or aware of my vagina being uncomfortable 24/7, I realize that vulvodynia, is not normal.

Its not normal. Its not normal. Its a thief and a shame. Its a curse. and doctor are ignorant about this, and people dont take this seriously enough at all. Men dont understand. They think you just dont like sex.

Its some kind of undiagnosed vaginal disease or ph imbalance.

Like I said I changed my diet and I encorporate water soluble vitamin E and probiotics in my diet, but what really cured me was STRONG and long term antibiotics, particularly, Doxicycline and azithromycin.

Now that Ive cured whatever it was that I had. The things I was doing for my diet before are really helping me not get yeast infections anymore, which is something I still do get occasionally, but they go away with my oils, or staying away from sugar in a few days, unlike before, when nothing was working, nothing really helped. Cuz I still had that underlying infection, ( prolly the ureaplasma)

I think back now. Im 32 years old.

But Ive lived with this thing for so long. Its a shame. Its so sad.

It ruined my life and my relationships.
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Thank you!!

Post  Mish on Fri Oct 12, 2012 12:10 am

Thank you thank you thank you!!! I know you know my desperation and I promise I will try everything you have suggested!!! Sounds like me so thank you thank you!!!! My prayers for us all! Thank you from the bottom of my heart!

Mish

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Marek jantos??

Post  Mish on Fri Oct 12, 2012 8:09 am

Char29 wrote:Hey there - I know what you mean!!!
I am in Perth and found Marek Jantos who travels around Australia to help ladies!!! Find his website and check him out.
He is based in Adelaide.
Where do you live?
I have had this for almost 40 years now and only stopped my treatment with Marek due to finances.
I am now changing my diet, using coconut oil (on my nether regions) and it seems to be helping.
Don't lose hope. I was close to doing that the other day and then I found this site and learnt things that I did not know before.
We will all get through this together!!!
Good luck
Charmaine xxx (((hugs)))

How can we find marek?? Thanks do much! I'll go to Adelaide! I'll go anywhere!

Mish

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marek jantos

Post  Char29 on Wed Oct 24, 2012 6:10 am


Marek Jantos

Office Address
9th Floor, 118 King William St,
Adelaide, South Australia 5000

Behavioural Medicine Institute
Phone (61+Cool 8221 7070
Fax (61+Cool 8221 7071

Contact mjantos@vulvodynia.com.au

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Greeting for Mish

Post  Acintya on Wed Oct 24, 2012 5:13 pm

First you need to know that you are certainly not alone, there are literally millions of women suffering in a similar way.
But as you are also having frequent tonsil infections and such there is probably a lot you can do to improve your general health.
Taking sugar and bread out of the diet for a start should reduce frequency of infection and adding raw veg will help; grated carrots or veg sticks in humous instead of cereals and bread. Low carbs help many people for many reasons but I believe that eliminating the additives they contain is one of the principle reasons that this helps. Good luck to you x

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Re: Absolutely desperate! I've been in pain for 30 years - please help!!

Post  kalinikta77 on Mon Nov 05, 2012 2:41 am

Dr. Burrows located at Akron City Hospital in Akron, OH. I realize that travelling to the U.S. may not be an option, but she may be able to point you in the right direction in terms of what kind of doctor to look for in your own country. When my gyno gave up on trying to diagnose me, she recommended a sex therapist. Lucky for me, I found one about 20 minutes away from where I live.

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Re: Absolutely desperate! I've been in pain for 30 years - please help!!

Post  Aquarius on Fri Nov 16, 2012 12:43 am

lavrose wrote:
Its not normal. Its not normal. Its a thief and a shame.


Yes.
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New Member - Suffered for 30 years

Post  kazza65 on Sun Mar 24, 2013 6:03 am

This started when I was 17. I'm 48 next month. Was diagnosed around the 15-20 year mark. Never had a relationship. Sex would be impossible. Can't use tampons. Have always suffered alone. Told several people, never had support. Have high stress job. Also dealing with a father who had dementia. Really don't want to be alive. Life has been ruined. Nothing's ever worked (including biofeedback with Marek Jantos). Lonely, isolated and depressed, not on any meds. My psychologist said I should be more assertive. How, when you're told nothing can be done? I live in Qld, Australia.

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Re: Absolutely desperate! I've been in pain for 30 years - please help!!

Post  Alana3 on Sun Mar 24, 2013 11:54 am

Stuff can be done you just have to find it. I was told that too and now im considered cured because I found the right doctor who did the correct treatment for me. Rather then being depressed and focusing all your energy on how life sucks make life good or as good as possible. I understand being helpless but until you've tackled everything there's I would say don't give up.

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Re: Absolutely desperate! I've been in pain for 30 years - please help!!

Post  Jordanlynnea on Mon Apr 29, 2013 5:20 am

Dr. Lamvu. Downtown Orlando, Fl. North Orange Avenue. Amazing doctor.

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So sorry you're suffering!

Post  Guest on Tue Apr 30, 2013 3:55 pm

I'm so sorry to hear that you're suffering so much! I'm a new member. I haven't been diagnosed with vulvodynia yet but I have had what my naturopath and Gyn. called an allergic reaction in (as my DH has dubbed it) my "ladyparts." I just call it my flaming ladyparts! I just tried a new treatment - medihoney - and will let you know if and how it works. My close friend is an RN and spoke to a wound expert who recommended it. I read a review for it on Amazon and a woman who suffered from vulvar vestibulitis (sp?) for 3 1/2 years used it and said she healed in 2 weeks. I figured it was worth a shot.

I'm sending you lots of positive energy and healing (((hugs))),
Loey

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Never Give Up!

Post  Guest on Tue Apr 30, 2013 5:24 pm

I know that chronic pain (and especially from a disease that effects the most intimate part of our life) can try even the strongest person's patience. Please hang in there and feel comfort from all the wonderful people on this forum. I only joined yesterday but have already been touched by the support, caring & unconditional love. Sometimes life seems extremely unfair but eventually you'll find the help you need.

Keeping you in my thoughts and prayers,
Loey

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Re: Absolutely desperate! I've been in pain for 30 years - please help!!

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