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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

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


Vulval Specialist Appointment

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Vulval Specialist Appointment

Post  Guest on Fri Mar 11, 2011 7:34 pm

Hi all. Had my appointment with my gynacologist last week and vulval specialist this week. Both are convinced this is allergy related as i am so swollen and very itchy. She said that the skin isnt inflamed! Had oral steroids for 5 days which bought the swelling down so much, now just slightly swollen and very itchy! Got strong antihistomines which make me groggy so not sure wether i will keep taking those! Got to go back in 6 weeks, she said about getting me alergy tested. Was a really positive appointment, she didnt seem to think i had vulvodynia but said she sees lots of women with it and they do get better. Very Happy

Was advised to use non purfume, non chemical, loo roll and sanitry towels which i managed to find all in waitrose, think this has helped alot! She also said use nothing but water. (Cant beleive i hadnt thought of this!)

Was reading alot on the internet this afternoon and came accross a website which had casestudies and people that have got better it said about a supplement called oral calcium citrate which stops the urine irritating vulval skin and another website where somebody was cured by using vitaclenz which is for cleansing the body of parasites and candida that can live in the body, so have just ordered both! Laughing Lets see if that helps!

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Re: Vulval Specialist Appointment

Post  Sebby (Admin) on Sat Mar 12, 2011 5:09 pm


Glad you felt positive about your appointment Smile

I have been told to spray the vulvar with water everytime I urinate so it doesnt irritate the skin. I also apply vaseline as a barrier to rubbing. This routine has really helped

Since having this I have only ever washed the vulval area with water only. No sitting in a bath with soap!

I am also cutting out sugar and wheat in order to combat yeast. Other good anti yeast things are Caprylic acid, ginger, coconut, garlic and acidophylis (bio active good bacterias)

Also just drinking lots of water can cut the oxylates in your urine by 80%!


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Re: Vulval Specialist Appointment

Post  Guest on Sat Mar 12, 2011 5:50 pm

Doing the diet thing too! (well trying) Missing coffee the most! Just been to a kids birthday party and had cake too! sooo hard but really going to try it for a couple of weeks and be really good.

Have been rinsing after weeing with luke warm water from a cup will try the spray.

Thanks for all the info Sebby.




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Re: Vulval Specialist Appointment

Post  Guest on Sat Mar 12, 2011 5:52 pm

Am too scared to try anything else down there, even vaseline! The vulval specialist has given me this waxy stuff to mix with water to wash with and im too scared to use that too! Everytime i try anything it blows up like a balloon!

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Re: Vulval Specialist Appointment

Post  Sarah001 on Sat Mar 12, 2011 9:32 pm

I've used vaseline alot during the last year but there are two schools of thought about oily products down there, some doctors believe they protect the skin from rubbing and urine and others say don't use them as they clog the glands and stop normal secretions. It's down to what works for you though. If you have an allergy situation going on I'd probably say don't use anything just in case!
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Re: Vulval Specialist Appointment

Post  Guest on Sun Mar 13, 2011 5:04 pm

Thank you for all the info Very Happy

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Re: Vulval Specialist Appointment

Post  noni on Sun Mar 13, 2011 5:14 pm

Hey Joanne,

Thank you so much for your update!

I have also considered if my problem is allergy related...I think all us ladies need to get allergy tested!!!

Have you ever noticed that some days, for no apparent reason, you puff up down there? Is it hormones or what is it???
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Re: Vulval Specialist Appointment

Post  Guest on Sun Mar 13, 2011 5:27 pm

I only swell up when people give me new creams to try! She thinks i have built up a sencitivity to everything. This all started for me after leaving a tampon in and had really strong antibiotics, she thinks mine could be an allergic reaction to something in the antibiotics or the tampon itself! She also said that all the steroid creams i have been given to try has made it worse! She thinks i only have pain because of the swelling and said it can take time for it all to go down.

I was 90 percent better in January until i tried another steroid cream which blew me up again and still swollen! It is the itching and swelling that is just unbearable! Feels really dry too!

Definitey think allergy testing would be a really good idea.

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Re: Vulval Specialist Appointment

Post  Sarah001 on Mon Mar 14, 2011 8:07 pm

I've been back to see my vulvar specialist today and it was a bit of a wasted journey, she just told me to stick with the Pregabalin for now and see if my GP can up it over the next 3 months before I go back. That was it. I'm sure mine isn't allergy related though as I already take alot of anti-histamines for other allergies which ought to control the problem if that was the case.
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Re: Vulval Specialist Appointment

Post  noni on Mon Mar 14, 2011 10:13 pm

Hey Joanne,

Its interesting you should mention the dryness...I think it could be from all the cream...initially with my Vulvodynia I looked pretty normal down there minus the red, swollen look...but after using hydrocortisone for waaaay too long and waaay too much application my skin looks different.

So Im very suspicious of creams these days. And after reading sarahs post about her bubble bath, im convinced im super paranoid about anything coming into contact with that area. Im glad sarah enjoyed the bubbles, but I almost had a panic attack reading the title!
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Re: Vulval Specialist Appointment

Post  Guest on Tue Mar 15, 2011 7:56 am

Hi Noni.

How long have you been suffering with tihis? Have you been diagnosed with V?

The swelling is the only thing that causes me pain and discomfort, other than some itching. Seen two people that have said its not V. 3 people seem to think that one of the antibiotics i was given through a drip can cause this side effect of swelling of the mouth lips or those lips! The creams have definitely not helped! The skin is not red i am just swollen! Just bizare! Where it was so swollen and gone down a bit im kind of left with a bit of excess skin which is uncomfortable! Dont find speculum examinations painful and had sex before it all blew up again 4 weeks ago from another cream!

What is with these people that keep giving steroid creams to try Evil or Very Mad

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Re: Vulval Specialist Appointment

Post  Sebby (Admin) on Wed Mar 16, 2011 9:44 pm


Hi Joanne your posts are coming up as Guest, which is baffling me as Guests cannot post! I cannot find your old profile under the Administration panel either..very spooky.. have you deleted your membership maybe by mistake after the last post as this can be the only explanation?

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