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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 …

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


so happy to find you guys!!

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so happy to find you guys!!

Post  Nic on Tue Apr 10, 2012 6:37 pm

just wanted to say hey to everyone, cannot explain how happy I am to find this forum. I'm 25 and have had provoked vulvodynia for over 6 years now. The pain began when I became ill and was treated for months with antibiotics for glandular fever. I was first treated for severe thrush but when this went away and the pain remained, I was sent to the GUM clinic several times , everytime being told I was fine. After about 2 years I decided to go private and saw a bupa gp who told me I had a chronic fungal infection and advised me to change my diet. because of this I saw a nutritionist who put me on the anti-candida diet, this helped a little but still sufferring I decided to go back to my gp. I was then referred to a counsellor who after a few sessions was the one who recognised my symptoms and referred me to my local gyno David Nunns who diagnosed me with provoked vulvadynia. Since then I feel like I have tried everything - all the creams anti - depressents, lidocaine, dilators, I saw the physio but on the session i said that I felt it was helping slightly ( to me this was from pain that was making me cry my eyes out to pain i didnt cry as much!) I was told that was all she could do and I was being discharged. The only thing I feel that has helped me the most was acupunture but I just cant afford to carry this on at the moment. When I was referred to my gyno I was so pleased someone believed that I was having pain and that there was even a name for it, after researching I found that he was also involved in a lot research. However (might just be my experience) but I have not been to the hospital for over a year now as I feel like I'm not really listened to and have been asked several times if theres anything Iv seen on the internet (is it not his job to tell me whats available?!)
I feel so up and down with vulvadynia its ridiculous, iv accepted that iv got this condition and have been in a relationship for 7 years with the most supportive boyfriend i could ask for but at the moment I feel like I'm starting on the down again. Everything else in my life is the best its ever been at the moment apart from my vulvadynia which seems to be at its worst. I have a new job as an air hostess and I'm not sure if its that my body is under a lot of stress and tiredness that this is effecting it but I'm worried that me and my boyfriend are going back to not being physical at all because I know its going to be so painful again. I just dont know what to do anymore, I'm so sick of trawling the internet looking for something to take this away. I'm so sorry this has turned out to be quite a long post, got a abit carried away with typing to people that understand, can feel so alone sometimes! but anyways, hi everyone, its not great that we've all got this crappy thing but its fab to have finally found you all!! xxx

Nic

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Re: so happy to find you guys!!

Post  Sarah001 on Tue Apr 10, 2012 7:23 pm

Hi Nic and welcome. I'm really glad you posted that about David Nunns, I was supposed to be referred to him but it went to pain management instead and I've been mulling over whether to push for an appointment but conversations with my physio about what can he offer me that I can't get closer to home and your post have decided it for me and I'm not travelling hours to see someone who doesn't have anything different on offer, I too thought he'd be good because he's involved in research but seems he's maybe just a bit more interested but not better informed. Anyway, I was wondering if you had alot of physio or if you were given the 6 sessions then out that alot of hospitals have now? It seems a very odd point to stop physio if it started to help a bit! Did the physio look at your posture, gait, alignment as well as focus on your pelvic floor? I'm very interested in the physio side of things as that's what I'm currently pursuing but I have a couple of other complicating conditions that are making it very difficult and long winded! Have a good browse and again welcome.
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Re: so happy to find you guys!!

Post  naomi on Tue Apr 10, 2012 9:23 pm

Hello Nic and welcome to the forum!

Ur condition sounds v similar to mine. Provoked vestibulodynia/vulvodynia, all started from yeast infections, anti's.

I've been round the block regards specialists, I think David nunns was my 8th or 9th. He was useless, I saw him twice and I knew that using vibrators to stretch my vagina wasn't the way forward...tried telling him its pure agony, the skin cracks and bleeds. I gave up on him!

Was meant to have vestibulectomy tomorrow but had it cancelled today as I realised (after more painful prodding) that the sore areas were more than he was going to remove with a partial vestibulectomy. Also a part of me still thinks the doctor crandall yeast theory still gives a good fight for the reason I am where I am!

Glad u found us! I think I would have gone loopy by now without the forum and our Facebook group!
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Re: so happy to find you guys!!

Post  Sebby (Admin) on Fri Apr 20, 2012 8:02 am

Welcome to the forum, I hope you find the support and advice you need here. You said that accupuncture helped. Is there no way you can get this on the nhs? Might be worth digging around to find out if there is a legal loophole where they have to fund it if its the only thing that's helping?

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hello

Post  chanel825 on Wed Apr 25, 2012 7:50 am

Sorry you are suffering but please know you are not alone. My vulvodynia was so bad I could not have intercourse and with the nerve block Marcaine helped me alot. I dont know if you would like to ask your doctor about that. What I still have in no pain with intercourse but a lot of discharge and burning that has not gone away. It is very gross and very uncomfortable. God is great hope u get better

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Re: so happy to find you guys!!

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