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Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 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


Trying to figure out the cause

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Trying to figure out the cause

Post  danacahoun4 on Tue Nov 20, 2012 7:38 pm

Well I am pretty sure I have some form of Vuvodynia...but I can't seem to pinpoint how this all started.

2.5 months ago I had a promiscuous night. I had recently gotten out of a four year relationship and forgot how to be single. I went on a date and the guy gives me oral sex. I go home and clean my vagina with Chanel body wash, and i was kind of drunk so I was scrubbing pretty hard. Suddenly I have a severe burning feeling. But due to my drunkeness I kind of ignored it. Later on I end up having sex with a different guy. (OK I have never had a night like this in my life so dont' judge me lol)

5 days later I wake up and feel that same burning feeling like I did when I used the soap. I freaked out thinking it was an STD. Got tested for everything. All negative. I have a burning feeling that comes and goes. And my vagina is usually reddish now.

So, was it the soap? And if so, why would it cause chronic pain for so long. Did the perfume in the soap cause damage to a nerve? The whole thing is so weird.

Things that make it worse for me: The number 1 thing is when I drink alcohol. I didnt have any alcohol for two months but the pain was still there, when i did finally go out and drink it intensified to about a 9/10. Normally on a daily basis its about a 4.

I thought smoking marijuana might help relax me. So i tried that. It also magnified the pain. So im thinking that any sort of toxin in the body just makes it worse.

So was it brought on by sex, or the perfume soap? And if it is the soap, how did it do such permanent damage? I would love love love some advice here.

danacahoun4

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Re: Trying to figure out the cause

Post  Alana3 on Tue Nov 20, 2012 7:47 pm

Not trying to freak you out but most STD's take about 3-6 months and will not show up on labs but may cause you pain before then. Have you got a test since then? (And no I'm not judging or saying this is waht you have by any means!).... I doubt it is but you may want to do a retest- just to be sure.

That being said, wine makes me hurt sometimes too its like a burning pain. Also, some (not all and this includes me) have sex painfree for years and than it comes up randomly like you're describing. So you very well could have VV and soap does aggravate the area most of us try and stay away from soap. That being said, go to a specialist and see what they have to say. But does sex hurt?

Alana3

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Re: Trying to figure out the cause

Post  danacahoun4 on Tue Nov 20, 2012 8:11 pm

Well I got tested for Chlymadia, Gonnahrea, BV, and trichomoniasis about 5 days after the burning began. WHich would give about a ten day window, I read that for those you can get tested pretty much the next day and should be accurate. Doctor thought it was a yeast infection and put me on Diflucan which made it worse. (Although I have never had any discharge---and the results found no yeast)

In 2.5 months I have gone to the doctors five times. They keep telling me everything looks normal and nothing is wrong with me. And said I need to stop thinking I have an STD. Last week I told the doctor I wanted blood tests done, and she said it was not necessary. i insisted and took a blood test anyway and got tested for pretty much everything, herpes, HIV, hepatitis etc. All negative.

So this is why I think I have vulvodynia now. The pain comes and goes. Some days are okay, some days are pretty bad. My legs are sore sometimes and the bottom of my feet burn sometimes also. I have not had sex since but it doesnt really bother me on the inside, its more on the outer area. I just have two symptoms, burning and redness. Whats funny is the doctor told me it looked normal, but its obviously bright red!

danacahoun4

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Re: Trying to figure out the cause

Post  Alana3 on Tue Nov 20, 2012 8:24 pm

Yeah it sounds like it could be vv. There's also another thing related to the itching thighs I forget what its called (I'll look it up and let you know) but its similar to the v. Yeah I went thru that too I kept looking at my stuff and itchy burning and thinking I had an STD thank god I didn't (although at least those are curable and this isn't). I went to a bunch of different doctors before I found one who could diagnose me and now wants to do surgery. I'm not sure about it now- I also have really bad muscle pain and can't sleep comfortably thru the night so I may get that checked out first (I started physical therapy today and omg I feel so much better).

Where do you live? I think you should probably go to a different doctor if they are insisting everything is ok. I got that too it's a pain the butt. I went to about 6 or so doctors before I got a diagnosis. And what's worse is I got a diagnosis but they treated me wrong for it. How wonderful is that!?

Alana3

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Re: Trying to figure out the cause

Post  danacahoun4 on Tue Nov 20, 2012 8:34 pm

I live in southern california. Yah I have been to two different doctors and they are kind of like saying nothing is wrong with me and its all in my head! LOL. Yah, like im just thinking that my vagina is on fire! LOL. i dont think one could imagine such a thing. i will probably go back in a month to redo the std tests just in case but im pretty sure its just a chronic problem. i think something happened the night i used the perfume soap bc that was the first time i felt the burning feeling. i think maybe i did some permanent damage with it somehow. i have never in my life had problems during sex, never any pain at all. I thought it was herpes but the doctor said it that it definitely was not. (no blisters, but i know that burning and sore legs were symptoms so I started to think thats what it was.)

Where do your muscles ache? How long have you had this problem and what triggered it?

Due to the pain in my legs and the burning feet i'm thinking it might be a nerve issue. im going to see a chiropractor sometime at the end of the week. i was almost annoyed that all the std tests were negative bc i was hoping i would find an answer! so i still have no idea!

danacahoun4

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Re: Trying to figure out the cause

Post  Alana3 on Tue Nov 20, 2012 8:54 pm

Burning feet? Diabetes and Fibromyalgia (sp) can both be causes! Get checked out and bad muscles can equate to bad vajayjay my muscles hurt everywhere and the only thing making it feel better is exercise and movement. Try acupuncture too its amazing!!!

I've had my problem for 4 years and god only knows what triggered it I don't know sex just started hurting one day and that was that Sad

Alana3

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Re: Trying to figure out the cause

Post  Ceriane on Wed Nov 21, 2012 1:09 pm

Yeh it could be vulvodynia....or it could just be a contact skin reaction from where you used the Chanel soap....in which case, it should go eventually....

What struck me was when you said that the bottoms of your feet burn as well....I have something called pernicious anaemia, which has caused me problems with my nervous system....before this was treated my vulvodynia was 10000x worse, so I am convinced it is linked (although not a commonly reported symptom of PA). A classic sign of PA is pins and needles or burning in the feet....ask for your B12 levels to be tested (below 200 is a sign you need B12 injections)....please ask for this test as PA is underdiagnosed (not something doctors routinely test for) but if left untreated can be very serious.

Ceriane

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Re: Trying to figure out the cause

Post  danacahoun4 on Thu Nov 22, 2012 5:33 pm

Thank you for your advice. I will go ahead and get that checked out! It sounds like this may be a possibility. My hands also do tingle sometimes. I do feel like this whole thing is related to nerves somehow. I just wish it was more clear cut what caused it. Was it the soap? The sex? I feel like if I knew how it came about maybe I could fix it somehow. Should I try taking B12 vitamins just for now to see if it helps?

danacahoun4

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Re: Trying to figure out the cause

Post  Ceriane on Thu Nov 22, 2012 5:38 pm

If you have pernicious anaemia, it means that your body can't absorb B12....most people get B12 from their diets, even if you're vegetarian you get it from dairy....so unless your diet is really not good...if you are low in B12 there is usually a problem with absorbtion, which means you need vitamin B12 injections....B12 tablets won't do a thing. Tingling in the hands is another classic symptom. Do you have any other symptoms ie low energy, dizziness, soreness around the mouth and tongue, memory problems, brain fog? If you do have it, it can be really serious and needs treatment. It is very treatable with injections though, I'm on them and will never look back!

Ceriane

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Re: Trying to figure out the cause

Post  Kate1981 on Thu Nov 22, 2012 10:03 pm

My mother suffers from this type of aneamia and has been having b12 injections since she was 26. I have just had a blood test done and my red blood cells are very low meaning aneamic. However my b12 is ok but this type of problem doesnt show up in a regular test as b12 makes red blood cells its all very complex. My gp has done nothing knowing my mothers history. Im always very tired and lethargic and im thinking this would make sense why I have v. I do suffer with tingling in my hands and feet and very cold hands and feet with restless legs. What do you all think? I feel like ive become a doctor! They are useless my life is in bits and they do nothing!

Kate1981

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Re: Trying to figure out the cause

Post  Ceriane on Fri Nov 23, 2012 1:20 pm

Kate, I know what it's like....I fought for years trying to get tests and a diagnosis, after years of having increasing symptoms....treated like a hypocondriac by many people. In the end they found that I had pernicious anaemia. I went on the injections, every other day and felt fantastic for the first time in ages, but when they put me on 3 monthly, it was nowhere near enough and I was back at square one, then they stopped my injections completely until my B12 levels had significantly dropped (you need a lot of regular B12 to heal from PA, the PA Society knows that but most GP's don't) in the end, it was like banging my head against a wall trying to get treatment, and when you're as ill as I was, it's hard to fight....so I took things into my own hands and (under guidance from the Pernicious Anaemia Society) I self treat. I buy my own injections, and have them as and when I need them and I've never looked back. Although not a commonly listed symptom, it's amazing how many women I've spoken to with pernicious anaemia also have vulvodynia. I think fybromyalgia is another common cause, but because it's personal, people admit to having PA or fybromyalgia...but they won't tell you they have pain in THAT area and that they can't have sex...because that's a taboo.... I think it's all to do with the nervous system in a lot of cases.

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Re: Trying to figure out the cause

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