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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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 …

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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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: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

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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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