Vulvodynia Support
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» Hope to all my suffering ladies
Absolutely desperate! I've been in pain for 30 years - please help!! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Absolutely desperate! I've been in pain for 30 years - please help!! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Absolutely desperate! I've been in pain for 30 years - please help!! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Absolutely desperate! I've been in pain for 30 years - please help!! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Absolutely desperate! I've been in pain for 30 years - please help!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Absolutely desperate! I've been in pain for 30 years - please help!! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Absolutely desperate! I've been in pain for 30 years - please help!! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Absolutely desperate! I've been in pain for 30 years - please help!! EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Absolutely desperate! I've been in pain for 30 years - please help!! EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


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

+5
kalinikta77
Acintya
lavrose
Char29
Mish
9 posters

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

Post  Mish 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
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Post  Char29 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

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Absolutely desperate! I've been in pain for 30 years - please help!! Empty Girl, I know!!

Post  lavrose 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




lavrose
lavrose

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Post  lavrose 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.
lavrose
lavrose

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Post  lavrose 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.
lavrose
lavrose

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Post  Mish 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

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Absolutely desperate! I've been in pain for 30 years - please help!! Empty Marek jantos??

Post  Mish 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

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Post  Char29 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

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

Post  Acintya 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

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Join date : 2012-10-24

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Post  kalinikta77 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

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Post  Aquarius Fri Nov 16, 2012 12:43 am

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


Yes.
Aquarius
Aquarius

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Join date : 2012-11-15

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Post  kazza65 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

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Age : 58

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Post  Alana3 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

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Post  Jordanlynnea 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

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Absolutely desperate! I've been in pain for 30 years - please help!! Empty So sorry you're suffering!

Post  Guest 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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Post  Guest 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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