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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


If this will help anyone...My triggers

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If this will help anyone...My triggers

Post  Rainy Day on Mon May 06, 2013 9:00 pm

I developed vulvodynia in Feb 2012 after 1) a massive kidney infection 2) Then, I got a bacterial/yeast infection from the antiobiotics, 3) I fell on my pelvis the same month. After a year of this garbage, I finally figured out what my trigger is. It's totally STRESS related. Anytime I have an anxiety attack, or if I get extremely angry, I flare. For some reason, sadness doesn't flare me though. When it first started, I had a flare that lasted 6 straight months- hardly considered a flare since it was constant 24 hrs a day. My symptoms caused me not to be able to wear undies or pants AT ALL. Only skirts. When it started, I had just lost my dad to cancer and mom got diagnosed with cancer shortly after he died. They were 59, so it was all unexpected and happened fast. I was so bad that I even couldn't sit over a few minutes. My legs were the worst symtom. The backs of the legs just burned and burned. My vagina area was very sensitive too, but the legs bothered me more.

I tried Gabapentin for a while...and it worked great until my mom was diagnosed with cancer. I didn't completely understand it was triggered by stress at that point. Upped my Rx of Gaba, and it didn't help...mom was going through surgery, radiation, etc...was still VERY stressed. Changed my Rx to Desapramine 75 mg and 300 mg of Gaba too. Slowly I started to improve, but my biggest improvement was when I took a leave of absense from work for about 4 months. My mom helped me/hubby during those 4 months by holding my daycare spot (paying for it) and paying for Pelvic Floor Therapy (not covered insurance--out of network). Slowly got better. I still have flares, but they are only caused by stress. Am now taking anxiety meds to prevent anxiety. Works pretty good, but my life is still pretty stressful with other stuff.

I have got to the point where I can gradually lower my dosages and still not flare. I am down to 75 mg of Desapramine only. Will try going down a dose in a month.

Other things that help my symptoms:

Yoga

Meditation

Counselling (I went through counselling on my dad's death for about 5 months)

Anxiety Medications

Moisturizer for vagina (Slippery Stuff) when I feel dry (I get dry at the start of a flare)

When I feel like ants are crawling around my vagina or butt--Rub the area with a rag to desensitize, then, ice cubes on area for 1 minute, I rub with a rag for 1 minute, then do ice cubes on area, then hot rag on area. I read this in Amy Stein's pelvic book...and my phsyio recommended it too. It helps a LOT when you feel the ant crawling thing.

When I have the symptom around 'butt' area, that is totally related to a muscle on top of my sit bones. Physio can fix that in about 24 hours by massaging it...then I do the rub with rag, then ice, then hot rag. Also, I do a lot of stretches to help this.

Tens unit- This is helpful with the 'ant crawling' feeling. Not as helpful for the burning feeling.

RIght when I start flaring, stop wearing undies/pants.

I don't put 'anything' down there...besides moisturizer. Everything else makes me worst.

I am still not recovered, but I am much closer to figuring out this beast. I have times where I feel perfect. I think I could wear jeans sometime in the future if I could control my stress.

I hope this helps someone....





Rainy Day

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Ice/Heat

Post  Rainy Day on Mon May 06, 2013 9:02 pm

Realized I wrote that wrong. I use rag for a minute on area. Then, ice cube on area for a minute, then hot rag on area for a minute. This helps desensitize areas for me.

Rainy Day

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Forgot Physical Therapy too!

Post  Rainy Day on Mon May 06, 2013 9:12 pm

Physio was a must for me! I still go once every 3 weeks to maintain my healing. I get sacro-iliac joint dysfunction during a flare, and therapy helps TONS with that. When I first started going, all my muscles were in a state of constant spasm. I would think most people with V would have that problem...since one problem causes many other problems with the pelvic area.

Rainy Day

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Ants crawling

Post  noelle2530 on Mon Jul 14, 2014 1:46 pm

Hi I am new to this site and everything else and I get that feeling like bugs are crawling around down there too... Is this a common symptom?

noelle2530

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Join date : 2014-07-09
Age : 34
Location : MISSOURI

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Re: If this will help anyone...My triggers

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