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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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: 8

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

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


What has helped your Vulvodynia?

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What has helped your Vulvodynia?

Post  Sebby (Admin) on Sun Dec 20, 2009 8:28 pm

So, what have you found that has reduced your vulval pain? Have you found anything yet which works? If so tell us!

I have found that sleep seems to help! lol actually I often find that when I wake up I dont feel much pain at all especially when I dont wear any knickers, I think this is due to the fact that nothing is touching the vulval area to aggrivate it and as soon as I get up and start walking and getting dressed it creeps up on me.

So along with this theory I only wear soft trousers, leggings and skirts.

I also only wear loose cotton knickers.

So what helps you?

Sebby
xxx
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V-Pain

Post  Micki on Wed Apr 14, 2010 12:58 pm

I just read your post about being in bed and it doesn't hurt until you get up! That's how I feel too!!

Micki

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Re: What has helped your Vulvodynia?

Post  Sebby (Admin) on Thu Apr 15, 2010 6:16 pm

Yep, its funny how sleep cures most things.

Not only is it relaxing but you are not moving about agrivating your conditions!

I do highly recommend not wearing knickers in bed though unless of course its at that time of the month!

Thanks for joining and hope to hear more from you

Sebby
xxx Sleep
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Vulvodynia Pain

Post  Micki on Fri Apr 16, 2010 11:07 am

So far, i haven't found much relieve from V-disorder. Not wearing clothes is a big plus however that being near impossible, not much out there. I tried the tea soaks, but to no avail. I did see my dr. the other day who has been treating me and she prescribed gabapentin 600 x 3 a day, and when i went to the pharmacy it's cost was a staggering $129.00 which I could not afford. I have been taking the gabapentin for several yrs. No result there! Also, a compound amitryptiline that didn't bring any results.Basicly loose pants that don't touch the vulva seem to help for a little while oh with no underwear at all!! Even wearing the most softest underpants don't make any difference either!! Having a support group in place is a huge plus because at least I don't feel as isolated!
I've noticed that when mentioning this problem with a few close females, they look at me like it's all in my head or I fear they think it is a bad girls disease Evil or Very Mad Bye for now!

Micki

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re treatment of Vulvodynia

Post  jules on Sat Apr 17, 2010 1:42 am

Don't give up on relief. I believe it is possible. I'm so sorry to hear you were not able to afford the gabapentin. No health insurance? I am taking 3000 mgs of Gabapentin per day and have been for at least a few months. The gabapentin has relieved the symptoms somewhat (pain reduced quite a bit) but, not completely. Recently, at my request, I was referred by my doc to a pain clinic. I have had two spinal blocks. neither have helped, in my opinion. However my doctor just prescribed Lyrica. Lyrica is in the same family of nerve blockers. I still take 3000 mgs of Gabapentin. I started the Lyrica about a week ago and i have been relatively pain-free the last few days. Now, I don't know if the Lyrica is responsible for the improvement. But, it may be. Months ago, i was at the point where i was in constant pain every day. the pain was horrible, even when i woke up. i'm thinking the sleeping helps because there is no clothing pushing up against the Vulva. I mentioned on this site I bought a foam donut to sit on for work and home. this has helped quite a bit as well. My symptoms have improved over the past few months. I do have several days in a row where i am in pretty bad pain, but, nothing like it was. So..if you have health insurance, i recommend a pain clinic. if not, are you eligible for help? I don't know where you live. cool gel packs can give temporary relief. keep gel packs in the refrigerator. i may get a third nerve block if this lyrica does not work. the doc at the pain clinic shot steroids and anesthetics into two lower nerves. he did not hit the prudenal nerve yet. that nerve goes directly to the vulva. nerve blocks can help some. i'm not giving up until i have almost constant complete relief. btw..i have generalized Vulvodynia (pain all over the vulva)

jules

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nerve pain blockers

Post  Sebby (Admin) on Tue Apr 20, 2010 7:52 pm

Hi guys

Im am very interested to hear about the nerve blockers and anticonvulsants. Its something I have not tried yet and I will pretty much try anything!

Dr is still convinced its my hormones so am on mirogynon combined pill - only been on it 2 months but its not working. Not surprised really.

The whole treatment process is sooooo slow and frustrating in uk nhs. Each apointment is months apart and you are only trying one treatment at a time so after a few failed treatments its a whole year over! Its really frustrating me!! Mad

Anyway thanks for your contributions guys keep it up and good luck with your treatments.

Sebby
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Re: What has helped your Vulvodynia?

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