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» I don't know what to do anymore
Yesterday at 5:21 pm by Aquaben

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
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» Finally found a place for me...
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.

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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 …

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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 …

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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


vulvodynia

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vulvodynia

Post  owlcity on Tue Aug 05, 2014 8:44 am

I've bee recently diagnosted with vulvodynia. I had my first UTI and that was probably the trigger for me. I started using estrace topical cream and at first it didn't help at all. After few weeks i actually had one month with no pain or burning. I almost forgot that i have a "problem". The lastfew days the burning is back on and off, maybe not as bad as before. I don't know if i should ask my obgyn to give me a new prescription of estrace mixed with progesteron this time. I am getting close to being menopausal I suppose and my hormomes are pretty low. I can tolerate some burning but I never know what the next hour is going to bring. I am a nurse working in the hopital. I have pretty sick patients to take care of and I can't worry about how I feel. I am worried about taking amitryptyline or gabapentin. I can"t afford to be sleepy for hours at the time or quit my job, I am the only one working in my household. Anybody tried other things that worked? Does anybody know if EMUAID cream ever works? Big advertisement on line for it, hard to tell if it's a scam or it's worth the money.
Thank you all and i hope they come up with a cure. None of us deserve this:(

owlcity

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Re: vulvodynia

Post  sailor_moon on Tue Aug 05, 2014 8:45 pm

Do you have any other symtoms besides the vulvodynia?

Have the doctors done a blood test over a 4 week period, doing a blood test every week to see what your hormones are actually doing?
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Re: vulvodynia

Post  owlcity on Wed Aug 06, 2014 8:50 am

Thanks for answering. No symptoms other then burning/stinging/pain. Mostly burning. My doc siad that vaginal dryness is common when you're 50 and most likely my hormons are low. I never actually had any blood tests. I'm pretty familiar with most nursing area expect obgyn/mother-baby/labor and delivery. Maybe I shoud ask my doctor to run some tests? I do seem to have the "classical" symptoms of vulvodynia. Grrrr! My life was so perfect before, I should've appreciate it more! We never do I guess. I dont expect a cure (wouldn't that be nice), just acceptable level of discomfort. I'm so demoralized right now, all I'm reading is that you may have this conidion for years! OMG! Years? I don't think I can take it for fow months let alone years. Thank you so much again for answering.

owlcity

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Re: vulvodynia

Post  sailor_moon on Wed Aug 06, 2014 9:13 am

I'm only 26 and have had this sh*t for 14 months now. I totally get what you mean about having a wonderful life before Sad it makes me so sad.

I am only just seeing a doctor who knows what he's doing now, after 14 months of dealing with incompetent doctors who just wanted to put me on antidepressants and send me to councilling!

I have a lot of other symptoms accompanying my problem, which may or may not be related.

Many women with vulvodynia have other hormonal issues that the patient doesn't even pick up on until things get REALLY bad. I didn't pick up on my other symptoms at first until they escalated to extremes because I was so wrapped up and focused on my vulva, I was ignorant of all the other symptoms I was expiriencing, even though they all started at the same time (and the doctors were fobbing off my other symptoms as stress...ummm extremely sore breasts are not caused by stress!)

It wouldn't hurt to have blood tests, especially with the way you are saying about your response to hormones. And low hormone levels are suspected already, so it can't hurt! At least you will be ruling it out. It may not give you an answer, but it may!

I work in a pharmacy and one woman has suffered vulvadynia due to lack of estrogen. She uses estrogen cream and is on HRT and it fixed the problem. Another lady was experiencing vulvodynia-like symptoms because she had no testosterone in her body. She gets testosterone shots now and the problem is fixed. Lack of iron can cause vulva issues.....oh the list goes on!

It is up to you to decide what action you want to take, but if you are anything like me, you would do anything to be rid of this horrific condition.

The women on this site are awesome, I have gotten some very valuable information from this site, and the ladies are awesome to chat to for advice.




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Re: vulvodynia

Post  zarli on Wed Aug 06, 2014 9:21 am

Hi maybe you should seek the care of a specialist such as a vulva pain specialist. Don't worry about having it for years everybody is different yours could settle down once you hit a different stage of menopause. On forums they are great but they are just some of the stories of vulvodynia. People who beat it are not necessarily represented on here properly. Stay positive Smile

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Re: vulvodynia

Post  sailor_moon on Wed Aug 06, 2014 9:27 am

I agree with Zarli, try and seek out a specialist that deals with Vulvodynia Smile
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Re: vulvodynia

Post  bearferret on Tue Aug 19, 2014 6:12 pm

Ive been on Amitryptilin for three months and am now pain free, I took it at night before bed so didnt get sleepy during the day. Ive also taken Gabapentin for my back, not that did make me sleeping other times during the day even if I just took it at night. I am pleased with the result of Amitryptilin and would take it again if it flared up again, hoping it doesnt.

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Re: vulvodynia

Post  Alana3 on Tue Aug 19, 2014 6:51 pm

I beat it! But it is true most people who did beat it really don't come back on here.  I had mine about 7 years before I got my fix!  And I def recommend going to a vuvla specialist!

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Re: vulvodynia

Post  kpog on Tue Jan 10, 2017 1:09 am

This post is to sailor_moon. Hoping you are still on this thread. I also have vulvodynia and very sore breasts. Wondering if your issue turned out to be hormonal? What treatments have you tried and did anything work for you?

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Re: vulvodynia

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