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» Just Diagnosed with Vulvadynia
Today at 1:57 am by angelique2016

» Vulvadynia
Yesterday at 7:45 am by mary jane

» Constant pain, I want to die.
Sat Jul 22, 2017 9:41 pm by Meggiemay

» What is Vulvodynia?
Sat Jul 22, 2017 9:21 pm by mary jane

» Will I ever be able to wear jeans?
Wed Jul 19, 2017 11:02 pm by jungleclover

» Looking for a friend IRL; LA/OC
Wed Jul 19, 2017 10:58 pm by jungleclover

» Anyone else get this from yeast infections? (new member)
Wed Jul 19, 2017 10:37 pm by jungleclover

» Owner of vulvodyniSuppoet.com
Wed Jul 19, 2017 10:28 pm by LaurenVV

» anyone from southern california in here?
Tue Jul 18, 2017 2:38 am by crypticcalico

Just Diagnosed with Vulvadynia

Tue Aug 02, 2016 9:11 pm by CherryTree23

Well, I was just diagnosed today, yay...my symptoms are just burning pain in vaginal opening. This all came about after taking Bactrim, Monistat, Clindomycin and Diflucan. This doctor was extremely confident I have Vulvadynia. Also told me my vaginal skin isn't red. Yes, it is, mine isn't typically electric red. He prescribed Ampytripline (sp) said, I have a very mild case, and worse case …

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Vulvadynia

Fri Jul 21, 2017 11:53 pm by Linda Williams

I am 68 years old and a year ago was diagnosed with vestibulitis, then vulvadynia. I have a history of chinchilla bladder infections, have had major bladder repair, hysterectomy, mid 30's, an auto immune disease. I take a daily antibiotic to keep UTI's at bay. My doctor has done the Quip test which was uncomfortable but did not test anything. I use Premarin vaginal cream 2 times a week. These …

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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: 21

Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

Comments: 1

Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

Comments: 2

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12


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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