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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 …

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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 …

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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 …

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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 …

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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

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: 9

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

Comments: 3

Another Limey!

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Another Limey!

Post  *Cat* on Thu Sep 02, 2010 6:26 pm

Hi Guys...so glad to have found a forum like this cos boy am I suffering!! I'm Cat, 29 next week and I'm from Swindon, England. Ok so, I haven't had an official diagnosis of this condition but in my desperation and bafflement from GP's I'm kind of at the pont of guessing the problem. For the last two months, I've been going in the docs complaining of burning, stinging, rawness and irritation...dripping feeling - and it's pretty much constant. My story is this, it came out of NOWHERE! I've gone over so many things in my head of what it could be. It's not a STI because I'm not with anyone and haven't been just before this or during. I'm not allergic to anything (used the same products for years and don't use anything perfumed down there anyway). It's driving me insane and has led me to be in tears most days. I can only think that it's hormone related and somehow, I've managed to upset the balence of the flora and fauna down there. I felt low as in depressed before this started and this has just made me feel a whole lot worse.

I've had a swab and urine samples taken (both clear! Rolling Eyes ) Initially I thought I had cystitus or thrush...but the treatments didn't work. Been on anti-biotics....nowt! Caneston cream.....rubbish and makes burning worse. Went to doc again yesterday...he had a look (Lovely...pass the bag for my head) Was sore in some points but looked at me and said 'Even though the swabs are clear I'm going to treat you for thrush again because thats what it looks like'. So got a pessary thing to try and he's shoved me on anti-depressants. I can bet you a tenner right now, I'll be back in two weeks. I was dying to say....WHATS VULVODYNIA, but why should I? He's the bloody doctor and it's a crime that this isn't more well known.

I can just about put a pair of baggyish jeans on.....but it looks like I can wave the skinnys goodbye.

What a biatch!!


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Re: Another Limey!

Post  Sebby (Admin) on Thu Sep 02, 2010 9:09 pm

Hi Cat..Welcome to the forum!

Firstly I would say you need to be careful about the overuse of thrush creams as they have been linked to making vulvodynia worse as well as long term use of antibiotics. If I do get thrush I take the oral pil.

I pretty much had to diagnose myself and just had that confirmed by the gynea..u will be suprised to learn how many drs have not even heard of Vulvodynia!

At the moment I am using Co-codermol 15mg x 2 tablets when the pain is bad as I am currently wating for a nerve block injection.

Ask to be refered to a Vulva clinic, not just a gynea...you want a consultant who has treated Vulva pain before. Most GPs know little to nothing about this condition.

The girls on here give great advice! They told me to also get refered to a Pain clinic and I did..there I met the first dr who not only knew what Vulvodynia was but had also treated women with the condition!

As for clothes, myself and most of us live in leggings! I thank God they are in fashion! I wont wear jeans at all!

I have also been advised too see a women's physical therapist as there are treatments regarding bio-feedback and pelvic floor exercises that are suppossed to help.

There are a lot of avenues to go down but keep fighting and keep in touch


Sebby (Admin)

Sebby (Admin)

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Re: Another Limey!

Post  jules on Fri Sep 03, 2010 5:29 am

Hi Cat,

Welcome and sorry reading our stories make you sad. That's how i felt when i first surfed the web to research Vulvodynia. I'm with Sebby. I would not use any more creams. I have read studies that show creams can actually make the nerves more sensitive. What you all call Thrush, we call a Yeast infection in the U.S. I was treated for over two months for a yeast infection and i didn't ever have a positive pap smear for yeast. My doctors just didn't know what else to treat me for. When i used at least 9 different creams over a period of time, my symptoms got way worse. I would agree to only use oral medication if you do, in fact, truly have thrush (yeast infection). I had a doc who had been a doc for nearly 30 years. He treated me several months for something i didn't even have. You are going to want to rule out any skin condition. That can be done by having a biopsy of your skin taken and/or by seeing a dermatologist of the Vulva area. Your UK friends can help you navigate the UK system. I am usually lost when i read their stories..ha ha..not really. You should get to a vulvar specialist. also, note: gynocologist do not know how to treat women for pain. a pain clinic or family doctor can do a better job. you want a pain pill w/ opiates...if you plan to take some. i have had much success w/ the medication Neurontin and Lyrica. some of the gals there are on Amitriptyline. we all have different results with different meds. Dont' give up hope. there is a lot you can do. Some of us are doing physically therapy, nerve blocks, botox etc. you have a lot of options. But, you do need to rule out other things as well. keep in touch. you are all sounds asleep and i am getting ready to go to bed in the U.S. Good night! and Good morning to you!


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Re: Another Limey!

Post  Sarah001 on Fri Sep 03, 2010 12:38 pm

Hi Cat and welcome. I'm with Julie and Sebby I'd avoid thrush creams if you can, I found they made my skin much worse. You sound alot like me thinking it might be a UTI or thrush but turning out to be neither, that's exactly how mine started and antibiotics took away a little bit of the UTI type pain but nothing else. It often starts out of nowhere.

The reason GPs don't often use the term vulvodynia is because it's not really a diagnosis as such, the word just means "pain in the vulva". If you're not happy with your GP pop along to your GU clinic and get them to examine you, they will swab for everything and probably send you away with a tube of hydrocortisone cream as a first course of action and if that doesn't work they can refer you to a dermatologist so you don't need to keep wasting time going to the GP who will keep treating for thrush when that isn't the problem (mine did that too). If you want to try hydrocortisone before you go to the GU clinic just buy some from the chemist then you can save time by having already used it. It should work in a week if it's going to.

The GU clinic can also prescribe you pain relief and if that works they can write to your doctor (with your permission) to get those medications put on repeat prescription.

If you want to try pelvic floor retraining (there's a huge link between a high resting tone of the pelvic floor and vulvar pain) it's better to ring some Women's Health Physios privately, there aren't many on the NHS so you'd wait months to see one that way and as you only need to go in once a month it isn't hugely expensive to pay for it yourself (about £35 a month). You need one that uses a biofeedback machine so they can test what your pelvic floor is doing and teach you how to get it working correctly.

If you have sore skin oestrogen treatments have worked for some women so that's another option to help the skin along but definitely do something, you're very new to the problem and the earlier it's treated the better the outcome so draw up a plan of action so you keep trying things.

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Re: Another Limey!

Post  Mouse on Thu Sep 09, 2010 12:59 am

Hi Cat,

I'm also new and have only been on this adventure since I had surgery down there in February.

The gynaecologist who preformed my surgery had no clue what I had or what to do about it! She treated like I was a freak and left me hanging for months while I got more despondent and depressed.

Then I got mad...!!! Have you heard of the saying "And that's when the fight started". I researched and found out what I thought I had and got busy trying to find answers. Anyhoo very long story short I found a specialist in vulval pain in another city, flew there for a day (on my own ahhhh had to wear my big girl pants that day) and was diagnosed immediately. I think I love her, if it was appropriate I would have hugged her... but that would have created another awkward problem Laughing She told me most people she sees have been told they are mad at some point.

So my lovely, as other people have said find a vulval pain specialist. There should be a clinic at any major hospital. They do this thing all the time so don't be embarrassed either. Find a pain clinic also. I have a therapist who helps me make sense of this shizzer and that's really helpful as well. xx. late for work now!


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Re: Another Limey!

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