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» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

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 …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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 …

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Intro on myself and my suffering

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Intro on myself and my suffering

Post  Fairymoon84 on Thu Jul 21, 2011 11:18 pm

[b][i] Hi my name is Erica. Starting March of this year, I noticed sex started to become painful and a burning feeling started. I figured maybe it was because I was dry down there. So I ignored it. Then when we tried again days later, I still had the pain and burning. So since I didn't have insurance I went to the ER. They didnt even do anything and just handed me a script for Flagyl. I took the pills like it said to, horrible pills btw, and nothing. I waited about a few weeks went to another ER. They ended up doing a Pap, but we were there for 5Hrs and they said it was going to be another 3 hrs for the results. So we asked if we could leave, they said yes and gave me a bunch of meds to guess what it could be. Along with another dose of Flagyl. So the next day I went to the same ER to get my results. And on my test results it said I had Trichomonas. Which is an STD. Which also didnt go well with my husband. I looked up the symptoms for Trich and I had none of them, only burning. I have had nothing but this constant burning. So needless to say I took the Flagyl for this "Trich" and still nothing. So I just gave up a little until this month when I went to planned parenthood, recommended by a friend, and payed out of pocket. The doc confirmed that I dont have trich, that I looked fine down there and gave me this 3day supply meds to take for the burning. And told me to avoid soaps down there. I took the first dose of the meds, burning went away, stopped using soaps, and no burning then on the 3rd day, guess what, burning came back. So last week I finally got my insurance through one of my jobs, went and seen a real obgyn, he did a pap and an exam, said he knew what it was, he said I had a fungul infection gave me tarazol 7. Once again I did the meds, burning went away, then on the 4th and 5th day the burning came back. So today I went to the same office and seen a different doctor. He was nice but everytime I tried explaning anything he would talk over me. He mentioned that I could possibly have Vulvodynia. So Monday I go in for more tests. I was wondering if anyone knows of over the counter creams to help sooth down there? Im willing to try home remedies, Im tired of taking and inserting all these meds that docs are just guessing that will help. Thanks for reading. I dont know who else to talk to

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Re: Intro on myself and my suffering

Post  noni on Fri Jul 22, 2011 5:20 am

Hey girl--

Sorry you had to join on here. But well its a pretty ok place to talk and share stuff.

My vulvodynia is a nerve pain. I take the anti-depressant Amitriptyline at 75mg. I noticed the burning, acid-sensation,stinging, irritation lessened at 50mg. Now, at 75mg I can feel almost ''normal'' on some days. Meaning, I dont think about having vulvodynia all the time because I am not in 24/7 pain all the time anymore.

At first, many doctors told me I had a yeast issue. Yes, I did Flagyl...yes I took all the damn tests...std etc etc etc. My life was a living hell everyday, all day until about 2 months ago when the Amitriptyline kicked in at 50mg.

Every womans story is unique and individual to them. We all have commonalities too. What works for one woman may not help another. Theres so much fucken shit out there on the internet about vulvodynia. Theres like outrageous claims that say low oxolate diets help, calcium citarte (oh whatever the fuck its called) helps. Alot of the stuff online is BS. Girl, im telling u....this forum is where you can get the real deal on vulvodynia, trust me.

Some days im so sick of this vulvodynia shit. Im sick of it. I wanna forget about this and move on forever. I want to have a normal relationship with a man, I want to eventually have a child, I want to ride a bicycle on a warm summers night...I hate that vulvodynia robs us of so much. I get so pissed off. Today I have spent most of the night crying. Im mad at so many people and so much shit in my life right now its not even funny. And then, well vulvodynia has to take center stage in my life. Get my dilators, take my meds, try to do vaginal exercises...wtf.

Anyways...sorry for the rant.

Take care girl and hang around here...the ladies are wonderful and the most knowledgable on this V stuff

luv, noni

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Re: Intro on myself and my suffering

Post  Sarah001 on Fri Jul 22, 2011 12:31 pm

Hi and welcome. It's odd you were told you have Trich if you don't, it's actually a parasite type of STI and easy to diagnose if it's a positive result, very peculiar and I can imagine that must have been awful for you with your husband in tow! It's also strange some of the things you've been given have helped in the short term, do you know the names of the things that have helped? With V it's a "diagnosis" of exclusion so it should be the only answer when everything else fails to help at all so perhaps if you can pinpoint exactly which meds have helped it might give you an idea of why?
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low oxalate diet not a bs treatment

Post  Heidi on Sat Jul 23, 2011 2:30 am

Hi and welcome, Erica.
I'm sorry to hear you are suffering. I hope you find the support and help you need here. I also hope you will take as much help and information from the positive people on this board and disregard negativism.

The rest of this post is in regard to noni's offensive and negative comment . . .

I started having vulvar pain when I was 13 or 14. By 19 it was severe. I had severe vulvar pain, burning and itching for another 5 years and went through a lot of barbaric treatments, besides being told it was all in my head, before a doctor diagnosed me with vulvar vestibulitis when I was 24. Another doctor later diagnosed me with vulvodynia. Besides severe vulvar pain and itching, I also had burning mouth, tongue, rectum and eyes. I also was diagnosed with fibromyalgia, intercistial cistitis, irritable bowel syndrome and hypoglycemia. After countless pills, creams, and mistreatment by doctors, I started the low oxalate diet and timed calcium citrate. This is not a bullshit treatment as Noni so rudely called it. This is a proven, effective treatment for women who's vulvar pain is caused by hyperoxaluria or by an inability to eliminate excess oxalate. I felt my first relief in over ten years within about two weeks of starting the diet and calcium citrate. I continued to gradually heal over the next 3-5 years (also added Estrace cream with some good results and guaifenesin for the FM). After 5 years my vulvar pain was about 80% better, but the inching and burning were completely gone. So were all the other burning, itching symptoms in my body as were ALL of my FM symptoms, intestinal symptoms and bladder symptoms. I lived a high quality of life for another 8-10 years at which time I decided to pursue pregnancy (at 39). I am the proud mother of twin boys, aged 2.5. After their birth, I was very overwhelmed and exhausted and I stopped the calcium citrate. I also went on an oxalate free-for-all--it was just too hard to take care of myself as I was taking care of twin infants. I started to have flare-ups again and a lot of my pain came back. Since then I have recommitted to the low oxalate diet and after about 6 months of gradual improvement have achieved a high quality of life with only a little pain, although it's much harder for me to stay on the diet while taking care of my twins and I do have flare-ups now and then. I consider them my wake-up calls. I know that the low oxalate diet has helped me, as has the calcium citrate. I also know that this treatment will not help every woman on this forum. I wish I had an answer for each of you. I wish I knew the key to the last 20% of my pain. I do not. What I do know is that it is never helpful to call someone else's cure a bullshit treatment or any other negative thing. Yes, we need to vent. But we also need to stay positive and honestly say when something helped us or did not help us personally.

Noni, I am sorry you are having such a rough time, but please only speak about your own positive or negative experiences and do not belittle other's experiences or treatments. You may discourage women who could really benefit from the low oxalate diet and calcium citrate from trying it. It was my miracle. It gave me my life back. Most importantly it allowed me to pursue pregnancy and gave me my two beautiful boys. I am sorry you have not found your own miracle yet. I sincerely hope you find it soon.

Good luck to both of you.
Heidi
http://lowoxalatefamily.wordpress.com


Last edited by Heidi on Sat Jul 23, 2011 2:38 am; edited 1 time in total (Reason for editing : forgot a very important word "80% better" also wanted to give noni more encouragement)

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Re: Intro on myself and my suffering

Post  Sebby (Admin) on Sun Jul 24, 2011 5:51 pm


Welcome to the forum Erica

I personally stay away from any medical creams. I do biofeedback pelvic floor work so I do need to use lube. Coconut Oil (needs to be pure, the pure stuff is hard like lard) is good as a lube and I have used it when I have felt dry. It does not irritate me.

I do believe that each women is definitely unique in which treatments suit her and which ones work. I dont believe Noni was offensive she was just expressing the frustration that we all get when we try treatment after treatment to no avail.

but yes Heidi I do believe that what may not work for one person or even a number of people may work for someone else. I try to keep an open mind as well as listen to my own body and mind for what I believe could work and what I could try next.

The main thing is that none of us give up ever!


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I love the rant noni!

Post  grassy on Sun Jul 24, 2011 7:12 pm

I love your rant Noni!!!! because its exactly how i feel! The thing that gets me is, what the heck? dont doctors have anything that helps us all? And why dont the drug companies make creams in a non irritating base. RIGHT? DUH? I'm sick of it too! cindy

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Re: Intro on myself and my suffering

Post  noni on Mon Jul 25, 2011 3:12 pm

@Cindy: Yeah, girl I was having a very difficult day when I wrote that. I was super emotional the whole day (yep it was right before aunt flow) ...but anyways... I try to cope as best as I can with this condition. But some days are very trying on my soul and body.

Sometimes, even when I try to keep busy and not think about vulvodynia, I still get like episodes of depression mixed with some anxiety. I feel like a freak sometimes too... like my body has betrayed me. But, like I said, I take life a day at a time now...I dont really plan ahead as I dont know how I will be doing, say like next week. I cant make promises to people anymore, because this condition has robbed me of my emotional/physical security.

But...anyways...like they say, the show must go on....and so I keep going because really its what I need to do. And I cant give up on my life just yet, im too young and I want to experience love in my life. Real love. And I want to discover new hobbies and talents that due to my condition I am forced to develop. So instead of bike riding I can take up sewing or knitting. Yay Smile

Take care ladies, luv, noni
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Re: Intro on myself and my suffering

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