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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.

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

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


New member - Glad to find this connection

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New member - Glad to find this connection

Post  Laura on Wed Aug 24, 2011 7:41 pm

I discovered this site yesterday and like most people here, feel so reassured that I'm not the only person in the world trying to live around this pain. My symptoms started after I was diagnosed with interstitial cystitis almost 20 years ago. Since then, the I.C. smptoms have abated but i have Vulvodynia flare-ups for no apparent reason lasting from a few days to months. So many comments here have resonated with me. Did I do something to cause this? How do I prevent my life from revolving around this? How do I stay engaged in the world when I just want to curl up, not talk to anyone, and stop hurting? Have seen many doctors, received varying diagnoses. Tried lidocaine ointment, biofeedback, diet changes all with no effect. Exercise helps mentally, but when I need it most it's the last thing I feel like doing. I'm 52, live in Arizona. This group feels like a lifeline.

Laura

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Re: New member - Glad to find this connection

Post  Sarah001 on Thu Aug 25, 2011 11:56 am

Hi Laura and welcome. Hopefully you'll find some interesting threads on here and feel free to discuss anything and everything with us all, we're like one big family on here!
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Re: New member - Glad to find this connection

Post  Zazu on Fri Aug 26, 2011 12:11 pm

Hi Laura and welcome Smile
I hope you find lots of support and advice on here - and that it helps you feel connected. I identify with a lot of the questions you mentioned, too. In terms of what you've tried - it doesn't sound like you've taken the 'drugs' route yet. A lot of women understandably are hesitant to start taking amitriptyline, gabapentin, etc. etc. One thing you might want to talk to your doctor about is a compound cream where they put one of the nerve calming drugs into an ointment or gel. Right now I'm using a 6% gabapentin, 5% lidocaine in diffusimax gel It's a good intermediate option.
Best to you! Be well!
Katie

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Katie + Laura

Post  Aussie on Mon Aug 29, 2011 3:17 am

Could you please tell me the base that is in your cream. Is it compounded with something non irritating like parrafin wax? I want to try this but not yet available in Aus. My doc said he will do up the script if I can find what base others are using. I also am interested in the Ami/Balofcen (sp) gel. Nerve med/muscle relaxant compound.

Laura, you have come to the right place. I suffer with IC too. How did you resolve your symptoms? at the moment I am doing IC diet, oxytrol patch, heaps of water and heat and have ordered cystoprotek and prelief for meals.

Glad to hear this part has subsided for you (remission?! Smile) dealing with both IC and V is tough, very tough!

Claire

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Re: New member - Glad to find this connection

Post  thiemli on Wed Sep 21, 2011 6:39 pm

I am new here too and am looking to see if anyone had success with the neogyn cream? I have seen several docs and all say to stay away from all creams. I have tried them all i feel like. I do think my symptons subside when I use nothing but sometimes unbearable. I am a mother of 4 small children and feel like i can't take care of them when I am in pain. It is terrible. I know it is worse for some of you. Mine (vestibulitis) comes and goes. I actually had it gone for over a year and a half and it returned. I thought the birth of my children is what brought it on and when pregnant or nursing i would get inflamed. AUUUUGGHHH. just looking for something to survive right now. Surgery is not an option with my small children that is my doctors next step.

Please advice if you have used neogyn or found any temporary relieve


thiemli

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Re: New member - Glad to find this connection

Post  Sarah001 on Thu Sep 22, 2011 10:10 am

We've actually got some ladies trying neogyn at the moment but I don't think any of them have reached the end of the recommended trial period yet, I'm sure they'll update us all when they do so keep coming and checking.
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Re: New member - Glad to find this connection

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