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» Cleveland Clinic - Pain Management, Weston, FL
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Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 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

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


20 years old with vulvar vestibulitis

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20 years old with vulvar vestibulitis

Post  mrs.optimistic on Thu May 14, 2015 6:29 pm

My name is Jess- this is my story.
I met the love of my life in highschool, sex was amazing and we never had a single problem. At just 17, I fell pregnant with twins. During my third trimester, i had a yeast infection and treated it (or tried to anyway) with monostate one. It was so strong that it felt as if I was being burned by acid from the inside out. I jumped in the shower and tried my hardest to get the medication out, with no success. I laid in bed in agony that night and cried myself to sleep. Since that day things haven't been the same. I had a c-section and waited 6 weeks before having sex with my husband. All I experienced was pain, but didn't think too much of it. I was put on depo and literally bled for 3 months straight, so I changed contraceptives. I had back-to-back yeast/bacterial infections and UTI bladder infections during this time. I was treated with constant antibiotics with no relief. After two years, my doctor told me i was experiencing swelling and discomfort because my birth control was causing an hormonal imbalance. So, I stopped taking the pill to let my body return to its normal state. With no luck I saw a handful of different doctors, that told me everything looked fine and I was just paranoid. Tests were negative for STDs, doctors didn't know what to do with me. My family physician told me my husband was probably too big, and I should practice with dildos to widen my vagina. I was sick and tired of no one knowing what the hell was wrong with me, and belittling my problems because I was young. Last year I got really sick, throwing up for days with intense back pain. I couldn't get out of bed, so I finally went to the E.R. I found out I had ovarian cysts and one of them ruptured, causing fluid build up in my back and abdomen. I saw an obgyn to follow up, and she told me the only way to control cysts is by taking birth control to stop the function of my ovaries. Due to my trouble with the pill in the past, I gave up and forgot about it. A few months ago the swelling really took a toll, becoming worst and worst. I couldnt take the pain and burning anymore, so I did some research and self diagnosed myself with vulvodynia. Now knowing vaginal pain was a condition, I was able to find myself a vulvar specialist who specialized in the treatment of vaginal pain. He recently diagnosed me with vulvar vestibulitis and pelvic floor dysfunction. All in all, I've been battling with vulvodynia for 4 years now. I can't have sex or use tampons (which sucks because without the use of birth control my periods are wicked heavy). My husband is extremely supportive of my condition (thank god) and we are taking things one step at a time. My advice to those of you with vaginal pain.. Seek a specialist. Don't waste years of your life bouncing from doctor to doctor like I did! They made me feel like I was crazy, and what was happening to me wasn't real. Turns out it's very real, health professionals just don't know what to look for. My vulvodynia hasn't gotten better, in fact it had been getting even worst. But, I take comfort in knowing I have a diagnosis now, and im not the only one. You'll feel better when you find out what's wrong. It kills me knowing im so young battling this, i cry constantly. All i can do is keep trying, and hope for the best.

mrs.optimistic

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Re: 20 years old with vulvar vestibulitis

Post  mikan92 on Fri May 15, 2015 12:08 pm

Hi!

Just wanted to say you are not alone in this!
It's really horrible to be going through all these esp at such a young age Sad I'm 23 this year and at first was really really scared about having this for the whole life, not being able to have pain free sex etc. But after reading all the successful stories here I think everyone can get relief, it's just the matter of time in finding the right one Smile I did cry a lot too, but impt thing is not to lose hope! Please believe that there is something for you (at least that's what I'm trying to do now). You can talk to others in this forum they are all really helpful and nice. Some posts have good advice on treatment options too. Don't be scared, even though we are young we can still win this battle! We can't let this ruin our lives we still have so many things to explore and so many things to enjoy in life Very Happy

mikan92

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Re: 20 years old with vulvar vestibulitis

Post  mrs.optimistic on Sat May 16, 2015 8:27 am

Thanks so much, that means a lot to me right now. If you aren't giving up, well I can't either. I'll keep reading and researching. So far I'll be trying coconut oil and a probiotic. Maybe even switching to all natural soaps/washes. Wish me luck!

mrs.optimistic

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Re: 20 years old with vulvar vestibulitis

Post  mikan92 on Sat May 16, 2015 10:05 am

No prob!
Coconut oil is good I'm using that too. Some people ingest 2 spoonful daily and got relief, I've been trying but personally don't think it's working for me Sad
Hope the probiotic works for you! Keep me updated with your progress cause I'm also in search of more things that might work for me Smile

mikan92

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Re: 20 years old with vulvar vestibulitis

Post  Breathe46 on Mon Jun 29, 2015 3:47 pm

Hi Mrs Optimistic,

I am shocked to hear your story because mine is very similar. I have had vulvodynia for the last four years (started at 25 ans im 30 now) and it all started with a yeast infection that I tried to treat with Monistat. Like you, I had intense itching and pain and had to jump in the shower and nearly screamed in pain (worst pain of my life!). I had to go to the ER where they told me I probably had some kind of allergic reaction and gave me anti-yeast pills to treat the infection. Things got better for a few months until I noticed intense itching periodically and also severe pain when I tried to have a pelvic exam to the point where I could not tolerate it. I was diagnosed with vulvar vestibulitis and I went to see a specialist who told me she thought it was all muscle related. I went to pelvic physical therapy for three months which initially hurt a lot but I tthink helped eventually but I had to stop going bc I needed to go to school and didn't have time or a nearby physical therapy place for this (it is somewhat rare). Since then I have had flares that come and go, especially at the end of the day and during periods. It never goes away completely but some days it almost does only to come back Witt a vengeance the next for no foreseeable reason. I currently use lidocaine gel when it hurts a lot, all hypoallergenic products, and cold water after going to the bathroom which numbs the area. I still can't have a pelvic exam (I refuse to) and I also refuse to date bc it causes me to much stress dealing with this problem. I think the Monistat caused everything and I severely regret using it and ruining my life. I think we should all band together and get them to write a warning label on it because NOBODY deserves to have his happen to them.

Mrs Optomistic, I am so glad your husband is supportive of you. If you ever want to talk we should exchange emails because it's always good to have support. I currently hope to be able to try physical therapy again in a year bc I have an intense job right now. Prayers to all of us who are suffering from this dreadful condition.

Breathe46

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Re: 20 years old with vulvar vestibulitis

Post  Emmae394 on Tue Jun 30, 2015 4:13 am

What is this "physio" that everyone is speaking of? I'm new to this forum and am seeking out any options to help manage my PVD!! Currently on 30mg of Nortriptyline, daily use of an estrogen/lidocaine compound cream and self pelvic floor muscle therapy with a therawand. All prescribed and suggested by my doctor who specializes in vestibulodynia. I'm 21 years old and have been dealing with this ever since recovering from chronic uti's for 2 years. Never thought I would have issues like this! My vestibulodynia has developed over the course of a year and a half. Started out with no pain, to slight pain in one small spot, to intense burning in generalized area after sex. This sucks! Trying to stay hopeful though

Emmae394

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Re: 20 years old with vulvar vestibulitis

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