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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» 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.

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


Needing Support for Vulvodynia - anyone able to speak I am struggling!

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Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  JS007 on Thu Dec 17, 2015 1:20 pm

Hi, I appreciate I have already posted a couple of things on here and thank you for the responses that I had. I am struggling to come to terms with having this condition - I wake up every morning thinking "this is going to be the day it disappears" or "after I go to the toilet today first thing It will feel normal"...sadly this is not the case. I started having symptons of discomfort back in June this year and only over the last month has the Gyneo suggested it is vulvodynia and put me on a course of Amitryptiline. I am now on 50mg a day (only upped this dosage 2 days ago) but I still have this feeling of "nappy rash" after going to the toilet, it is almost as if my skin becomes sensitive after pushing down for a bowel movement...or urinating, almost like the feeling of soiled underwear that rubs?? does this make any sense to anyone - I feel very alone with understanding this condition. I want the meds to work but don't know how long it should take to work?? I always have symptons EVERYDAY but they do vary dependent on my activities. I can have intercourse with no issues once inside - sorry TMI. I would like to hear how people get through having this before it disappears or gets under control? No one understands what this feels like, and the fact that because I don't have any "physical signs" of tenderness or redness etc. Is this still definitely Vulvodynia? I am worrying that it might be bladder related instead...but I feel everything down below??
I hope to hear from someone who is happy to give me some comfort that I will deal with this and get over it! Smile

JS007

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  WaahwaahUK on Thu Dec 17, 2015 1:42 pm

There are lots of people that have frequented this forum, and now don't, simply because they got better. People do get better. I understand the need for understanding with this condition, as it can make you feel so very alone. I think its important to remember that there are a lot of people who don't come here now because they got better. Healing can take time. Stress I believe can add to any pain. Empower yourself and arm yourself with knowledge and concentrate on being kind to yourself. This forum has helped me look at ways to improve how I feel and though I am by no means better, I do have better days.

WaahwaahUK

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  meelie on Thu Dec 17, 2015 9:53 pm

i don't come so often because i talked my primary into Rx for Trammadol for pain which keeps me comfortable most of the time. God bless this understanding Dr.

meelie

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  sailor_moon on Sat Dec 26, 2015 12:53 am

I am always up for a chat on here, so please feel free to PM me any time! It is so hard to try and vent to someone who has no idea how horrific this condition is. I wish this forum was more active like how it used to be. I would love to hear more about your story and how all this came about. Try and stay strong! xxx
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sailor_moon

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

Post  sarisbaris on Thu Dec 31, 2015 4:15 pm

I am cured. I've been pain free for over 2 years. This didn't happen by accident. It didn't randomly go away. I was in and out of pain for 15 years until I found the right doctor. From what I have read on this site, my cure is rare. If the medicine you are taking isn't helping you, you need to find a doctor/medicine that can. Most doctors (both western and alternative) won't tell you that they don't know what it is. If they don't have a theory why it started and if your symptoms aren't getting better, then you need to find a doctor who can. When I finally found the right doctor (who is an alternative doc who gave me herbs in pill form... oh yeah, while I was 2 months pregnant) it took about 1 month for the pain to be manageable and 2-3 months for the pain to go away completely. It has never returned. Vulvodynia is just a label... it really only means your vagina area hurts. Seriously... that's it. It could be muscle, it could be an infection that they can't detect. It could be lots of things. Most doctors have absolutely no clue which is why this is so so hard for those in pain! We want answers and they don't have them. You need to be brave and listen to what the doctors are not telling you. Please read my post in 'Vulvoydnia Info' forum titled 'Cured from vulvodynia... ' There is hope!

sarisbaris

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Re: Needing Support for Vulvodynia - anyone able to speak I am struggling!

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