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» Acupuncture advice please
Yesterday at 6:08 pm by fairlight10

» Please tell me this can get better
Yesterday at 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 …

Comments: 0

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 …

Comments: 4

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 …

Comments: 11


Just want a solution for a good quality of life

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Just want a solution for a good quality of life

Post  mariah2558 on Thu Dec 08, 2016 9:49 am

Hi all,
My name is Mariah, I am 19 years old and I was diagnosed with vulvodynia in November of last year 2015. They finally diagnosed me after I've been dealing with this condition for over 12 years. I can remember as far back to being 5 years old complaining to my parents that my pee pee hurt and it just got worse and worse as I grew older. I wasn't in nearly the pain I am now though. I can remember my later childhood years always being uncomfortable when I was wear tight clothing always getting into a warm bath and having these sharpe, burning and uncomfortable pains down in my vagina. When I would go see my doctors they almost kind of blew it off. Said it was a yeast infection and as the problem progressed as I got older they told me it was just bacterial vagininosis. Just prescribed me with Dyflucan gave me topical ointments, some antibiotics when it was "bacterial vaginiosis" told me to use Monistat creams if it came back down the road and sent me on my way. Sometimes those things worked but only for a couple hours and then I was back in pain but after a day or so it would go away and my vaginal area would just be irritated but it always was so it was nothing new for me. Now then I'm entering into my adult years, I'm in my second year of nursing school, I have 2 jobs, and I work for the hospital here in town I can't bare living like this anymore. Some days I'm okay just my normal irritation but these past 3 months have been so extremely awful for me. I've probably been to the ER 20 times because the pain is so excruciating I can't handle it anymore and need something. At some points I've been in so much pain I didn't sleep for 28 hours because I was up pacing myself back and forth, in and out of the bath tub, bawling because the pain is just so awful. The worst part about everything, even worse than the pain, no one understands what you're going through. No one understands how much pain you're in and how badly it affects you and hurts. They thing you just need to tough it out or get a higher pain tolerance. My gynecologist that diagnosed me but me on the nerve blocking medication called amitriptyline we started at 25mg just once a day until my body got used to it and then stayed on 50mg for a month with little problems then every time I got a flare up she would just up my medication i got up to 200mg of amitriptyline before she switched me over to gabapentin 300mg 3x a day. Then she explained to me how she had only seen a couple patients with this diagnosis and wanted to me to get some relief. So she sent me to see a specialist in Omaha. I feel like this doctor doesn't listen to a thing I'm saying. Everytime I call saying I'm in pain her nurse tells me oh take deep breathes it'll go away use cold compressions or get in the bath. She acts like I hadn't already done that. Like I said been dealing with this problem for 12+ years when I start to get my awful flare ups I almost immediately jump in the bath tub. After weeks of hownding them I was in pain they finally did something beside medication. They gave me lidocaine/steroid injections. That ended up making me feel even worse. I currently go to physical therapy to work on not clinching my nerves so much and loosening up my pelvic floor muscles. My specialist has me on gabapentin 300mg 6x times a day and lidocaine 5% topical ointment to put inside my vagina and on the outside of the vulva and vulvlar opening. I have an appointment to see a urogynecologist and an appointment at the Mayo Clinic in Minnesota. I just need some advice on what to do? Did anything work better for anyone? I have heard about the Botox injections and the surgery did any of those significantly help anyone? I'm desperate for advice and need some help. I can't even work or go to school without having a flare up at least twice a week? I just want to live a normal life of a young adult because right now I don't do anything for myself. I don't do anything for fun because the thought of putting anything on besides very big and baggy sweatpants makes me cringes. I'm desperate for answers. Anything helps, thank you and god bless.

mariah2558

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Re: Just want a solution for a good quality of life

Post  fairlight10 on Thu Dec 08, 2016 11:04 am

I am so sorry you have suffered with this for so long. We all know on this forum what you are going through. Start reading the posts on this forum. They are full of information that may bring you the relief you are searching for. You sound as if you have primary vulvodynia. As you had it when you were so young. Have you any female relation who have suffered similar problems? I am on nortriptyline 20 mgs now. This type of medication is known as antidepressants but in low doses and I emphasis low can give some of us on this forum relief from the symptoms you refer to. Also, you have noticed that urinating causes you problems. Look at the low oxalate diet. Also, some other medications can cause irritation in that area. Omeprazole is one of them.

fairlight10

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Re: Just want a solution for a good quality of life

Post  PainBlogger on Thu Dec 08, 2016 2:50 pm

A quick summary of what has helped me: duloxetine, acupuncture, physiotherapy/PT (including dilators at home), and mindfulness.

http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement#14400 for the fuller version with some lifestyle changes you might want to try if you haven't already. And, as fairlight says, have a good read through this forum. It may well be that a combination of different treatments/lifestyle changes will help. Finding that combination can take a while but is worth the effort of trying things.

It's a horrible condition, but people do get better. I really hope the specialists you're waiting to see can offer new insights.

PainBlogger

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Re: Just want a solution for a good quality of life

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