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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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: 4

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: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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


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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