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» What's next?
Tue Apr 24, 2018 4:01 pm by jennyk2

» Pain management - what works for me
Tue Apr 24, 2018 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


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


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


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

Hello from Northern Norway

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Hello from Northern Norway

Post  Antaea on Wed May 11, 2016 6:06 pm

Hi, very glad that I just found this forum. Today my fears became confirmed: The burning, itching everlasting pain in all parts of the vulva and the labia major is indeed generalized vulvodynia.
But let me introduce myself:
I am writing from Northern Norway, only a few hours drive south of the North Cape. Born German, I live there for nearly 30 years, teaching music at the local School for Culture. I am 66 years old and shall retire at the end of this year. I live alone after a marriage with an alcoholic long ago. I have no kids (due to heavy migraines all my life), but a precious cat-family of 5. Antaea is my pagan name, I am eclectic witch and deeply rotfasted in our subarctic nature - or in nature generally. But next year I shall move to the Swedish island of Gotland in the Baltic to live there with my sister for the rest of our lives.
I had an episode of nerve-pain in 2007/2008, when the doctor found out that my estrogen levels were extremely low. After 9 months they were normal and the pain ceased.
In March this year I had a cystitis and was treated with 3 different antibiotics. I got problems and pains in the vulva, but meant, it was due to the cystitis. But it never got away, it only became worse. Now I have it 24/7 and no painkiller, no topical treatment works.Only Tramadol takes the top of the pain at night and gives me a day with little pain the morning after. I observe all the general advices like no soap etc. But I have to admit: Pain will be a part of my life until I die. On Friday i'll start with Gabapentin, and a fortnight later I shall meet my doctor for an evaluation.
I need therapy suggestions and, first of all, input in how to live a good life in spite of the pain. I am open too for alternative therapies.
I also hope to be able to give something back to you. You can find me under my user name on Facebook too.
Whishing you a painless day in your part of the world. Here it is 8 pm.
God kveld (Good evening) from Antaea

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Age : 68
Location : Gotland/Sweden

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Re: Hello from Northern Norway

Post  emalita on Wed May 11, 2016 6:26 pm

Hi Antaea!

Those darn antibiotics are what do a lot of us in unfortunately. My pain was caused by 4 rounds of very unnecessary antibiotics that I had trusted my doctors to prescribe appropriately (I know better now).

I'm absolutely no expert, but I've been around the block more than once trying to relieve my pain the last 2 years. So, I'm happy to share what has and hasn't worked for me so far. Can you provide more details on your pain? You mention it is burning and itching on your entire vulva. Are any areas worse than others (e.g. inner labia, vaginal opening, etc.)? Are there any physical changes to your vulvar appearance (e.g. whitening, scarring, etc.)? Is the pain worse at any particular time (e.g. going to the bathroom, after showering, etc.)? What conditions have been ruled out for you (e.g. yeast, bacterial vaginosis, etc.)? Do you have excessive discharge that makes your pain worse?

Sorry for all the questions, but the more details you can give, the better suggestions we can provide without boring you with some that probably won't be relevant to your pain. Obviously only provide information for what you are comfortable sharing. Nothing is too much information here...we've all heard it before Wink


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Re: Hello from Northern Norway

Post  Antaea on Wed May 11, 2016 8:44 pm

Hi Emalita,
thank you for asking. That's the reason why I am here.
I have no discharge at all. After the menopause I am very dry. The pain is mainly and worst in the vestibulum and the clitoris, but can change to the inner labia. The outer labia feel like sitting on a brush. All other conditions had been ruled out. No vaginitis, no bacteria, vira, no herpes or papilloma-virus. No lichen sclerosus. The vulva looks just fine. I use estrogen-cream (Ovesterin) which is not availalbe in the States, only in Canada. I used hyaloronic acid too, but it made things worse after a time. Just now I rinse with water only every time I am in the bath room and use almond oil. I also use Lidocain topical at night and Tramadol every second day. I shall start with Gabapentin and I am very afraid of the side- effects because I shall travel 2300 km by car on June 15th with the caravan and my cat-family. More about that in a second thread.

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Age : 68
Location : Gotland/Sweden

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Re: Hello from Northern Norway

Post  emalita on Wed May 11, 2016 9:55 pm

Hmm...I'm just going to start rambling off ideas, and I hope some are helpful Very Happy

Since your pain started after taking antibiotics, have you tried supplementing with a good probiotic meant for vaginal health? I use Fem-Dophilus, but I'm not sure if that's available by you.

One of the first things my Naturopath and Functional Medicine Practitioner focused on was improving my gut health because a large part of your immune system is in your gut. They gave me all sorts of supplements, which did nothing, but a diet rich in whole plant foods as well as fermented foods or things like kefir can help. Unfortunately none of that made any difference for me, but it doesn't hurt to give your immune system a good boost with a healthy diet.

My specialist recommends rinsing (not spraying) the vestibule with Gordon’s Boro-Packs after every urination (I believe the brand Domeboro is basically the same thing). It comes in a powder that you mix with water in a squirt bottle. I believe one packet should be good for the whole day. I personally haven't used it yet, but the other patients of his that I spoke to said it was a life saver. It is supposed to reduce inflammation, itching, and irritation. This may be worth looking into.

Now I'm sure you know this already, but I have to add it all just in case. Eliminate all chemicals that are coming into contact with your vulva. This includes: flushable or feminine wipes (they are the devil in wipe form), shampoo (my OBGYN has me washing my hair in the sink - he says it only takes a single drop in the shower to set off a reaction), laundry detergent (I make my own, but my OBGYN recommends All Free & Clear or Cheer Free & Gentle), shaving cream (my OBGYN recommends Vanicream Shaving Cream), super soft or scented toilet paper (lots of chemicals go into making super plush TP), douches, etc.

I hope you find relief soon! Hang in there, this doesn't have to be forever Smile


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Re: Hello from Northern Norway

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