Log in

I forgot my password

Latest topics
» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 1

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: 0

NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4


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

Go down

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(

Mish

Posts : 10
Join date : 2012-10-08

View user profile

Back to top Go down

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)))

Char29

Posts : 13
Join date : 2012-10-05

View user profile

Back to top Go down

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




avatar
lavrose

Posts : 150
Join date : 2012-04-28

View user profile

Back to top Go down

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.
avatar
lavrose

Posts : 150
Join date : 2012-04-28

View user profile

Back to top Go down

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.
avatar
lavrose

Posts : 150
Join date : 2012-04-28

View user profile

Back to top Go down

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

Posts : 10
Join date : 2012-10-08

View user profile

Back to top Go down

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

Posts : 10
Join date : 2012-10-08

View user profile

Back to top Go down

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

Char29

Posts : 13
Join date : 2012-10-05

View user profile

Back to top Go down

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

Acintya

Posts : 2
Join date : 2012-10-24

View user profile

Back to top Go down

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.

kalinikta77

Posts : 7
Join date : 2012-11-05

View user profile

Back to top Go down

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.
avatar
Aquarius

Posts : 4
Join date : 2012-11-15

View user profile

Back to top Go down

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.

kazza65

Posts : 2
Join date : 2013-03-24
Age : 52

View user profile

Back to top Go down

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.

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

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.

Jordanlynnea

Posts : 11
Join date : 2013-04-28

View user profile

Back to top Go down

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

Guest
Guest


Back to top Go down

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

Guest
Guest


Back to top Go down

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

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum