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» Vestibulectomy today and no pain
Today at 3:28 pm by Dsrt16

» vestibulectomy success
Yesterday at 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
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» Pain aftee vestibulectimy
Yesterday at 12:03 am by Jgreen81

» Freaking out because I don't think surgery worked HELP!!!!
Yesterday at 12:01 am by Jgreen81

» Vulvodynia help
Wed Nov 15, 2017 1:04 pm by ekaterina1996

» FACEBOOK VULVODYNIA SUPPORT GROUP (SECRET)
Tue Nov 14, 2017 9:53 pm by Dsrt16

» Needing some reassurance
Sun Nov 12, 2017 3:04 pm by Nicmay

» Vulvodynia burning mouth and bladder discomfort
Fri Nov 10, 2017 7:26 pm by Zbrown

Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

Comments: 3

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: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 0

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 4

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 5

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7


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

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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?

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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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