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Sat May 26, 2018 5:21 pm by Aquaben

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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.

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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

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 …

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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

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


Those With An Autoimmune Disease

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Those With An Autoimmune Disease

Post  BpCookie on Wed May 01, 2013 4:54 pm

Hi peeps, Once again I am searching for the answer to my Lichen Simplex Chronicus. So today I was brain storming, Googling multi health issues that may be related to each other and I came up with one health issue that can cause all my misery and that is an Autoimmune disease. Ive noticed that I have have a high leukocyte count, been losing my hair by the hand fulls, bruising easily, Hypothyroid, Lichen Simplex Chronicus (related to the psoriasis family) and it all points to an Autoimmune disease. Have any of you been diagnosed with an Autoimmune disease? If I could find one answer to all my problems I would do back flips.
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Re: Those With An Autoimmune Disease

Post  Alana3 on Wed May 01, 2013 5:38 pm

Not to sound any alarms, but a lot of what we have goes hand in hand with an autoimmune disease. So you can have one thing and still have the other. I know that IC is considered an autoimmune disease, and lots of people who have IC also have vulvodynia. It also goes hand in hand with IBS (fun shit literally lol), lupus, migraines and TMJ. So you can "cure" or treat one thing and still have the other. I doubt that just one thing is causing your problem, but I guess you never know. I've had hypothyrodism diagnosed (I refused to take any drugs tho, those are crazy potent!), TMJ, migraines, had IC thrown at me (no proof there...yet ugh). My advice is to STOP googling, I know we are all guilty of it. I was convinced I had AIDS because I had frequent yeast infections, was tired all the time, blah blah blah. Truth be told, you're going to give yourself an ulcer thinking you have all these things, when in fact, you probably just have LSC (not just but you get what I mean). Unless you have actually been diagnosed with an autoimmune disease, I would say concentrate on getting the hooha better. And then if something else pops up, then worry about it. But don't borrow trouble! Smile

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Re: Those With An Autoimmune Disease

Post  Sarah001 on Wed May 01, 2013 8:13 pm

They can do blood tests to see if you have autoimmune markers, I'd say to put your mind at rest ask your doctor to perform those along with testing your thyroid etc too then you'll know either way. I've had them done because of my joint problem and it really is one blood test to say yes or no. I'm with Alana on this one and think it's likely you have a few things going on instead of just one that covers all your symptoms, but still it won't hurt to have a simple blood test done to say either way.
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Re: Those With An Autoimmune Disease

Post  BpCookie on Thu May 02, 2013 3:27 pm

Alana and Sarah huns, I guess its just wishful thinking. Im always hoping to find one thing that is causing my multi health issues. My gyno had said something about an autoimmune disease because none of the treaments she tried worked.

Although Google can be a complete nightmare, I have found that it has also helped me on ocassions. The worst thing I ever did was look up VLSC photos. OMG, I freaked out. On a good note, I was having some health problems and the Dr. s couldnt find an answer, so I googled my symptoms, Hashimoto Disease. Which is what I ended up having and looking into that they also found the thyroid issue. I was put on meds and I now feel so much better.

Alana, I found a vlsc specialist but he wants to try his miracle treatments on me. LMAO. uuuggghhh another specialist. I also have an apt with another Dr. to talk about surgery options. Hubby doesnt want me to have any surgeries done until Ive exhausted all treatments. Oh goody, that will be another year of my life wasted.

hugs to both of you

Cookie aka The Burning Bush
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Re: Those With An Autoimmune Disease

Post  Alana3 on Thu May 02, 2013 3:32 pm

At the end of the day its YOUR vagina, not your husbands. Do what you think is good for your body, not what he thinks. If that's the option you're at now- go ahead and do it. But don't say anther year wasted. Usually they won't continue a treatment if you haven't got relief within 6 months anyway. But nothing you try is a waste. But if YOU want surgery do it. Did you call my doctor?

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Re: Those With An Autoimmune Disease

Post  BpCookie on Thu May 02, 2013 8:43 pm

Alana Sweet heart, Haven't gotten around to it.....yet. Ive been having some other pain issues and have been resting in bed, using my Ipad to reply to this board. This morning I got a call from my step mother, she was diagnosed with cancer about 18 months ago and things have gotten worse. So now I am a nervous wreck, crying all the time, having anxiety attacks, I can't sleep and all of this is just making my pain issues worse.

Hopefully when all this mess passes over, I can get back to being myself and will be able to make some phone calls. hugs hun
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Re: Those With An Autoimmune Disease

Post  Alana3 on Thu May 02, 2013 9:16 pm

Be we'll!! I just hate men lol sorry

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Re: Those With An Autoimmune Disease

Post  cupcake25 on Sun Jul 14, 2013 1:53 am

I have celiac disease, which is a digestive autoimmune disease (gluten free diet is the only way to manage it). I often wonder if my body's inability to fight whatever is causing the vulvodynia is related to my celiac. Celiac makes it very difficult to absorb vitamins and nutrients from food, and I still struggle with stomach issues. Perhaps there's another underlying food issue that Ive missed. The only other particularly strange thing that's come up repeatedly in my blood work (which is otherwise spotless) is a lower than normal white blood cell count. Who knows! It's such a tangled mess, so many possibilities.
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Re: Those With An Autoimmune Disease

Post  BpCookie on Sun Jul 14, 2013 6:34 pm

Cup cake hun, Thats very interesting, I have a low white blood cell count as well. Also prescribes a vitamin d boost for my cause mine is always low. I always thought that my vulvadynia was caused by some under lying health issue that the Dr.s havent found yet.

hugs to you
Cookie
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Re: Those With An Autoimmune Disease

Post  cupcake25 on Tue Jul 16, 2013 8:29 pm

Cookie,
I find it very interesting that you have low vitamin d as well! My blood work showed my vitamins were all normal except d, which was on the low side. I haven't started a vitamin d supplement but I've heard it helps.

I'm not as educated on white blood cell count as I'd like to be. I really have no idea what it could mean. My primary doctor doesn't have any answers and referred me to a specialist but I never went. I always assumed it was because of the Depo provera shot, which I believe was the trigger for all of my issues (it does lower the immune system).
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Re: Those With An Autoimmune Disease

Post  cupcake25 on Tue Jul 16, 2013 8:37 pm

Also... like Alana3 said, google can be a baaaad idea lol. I was too convinced I had HIV for a whole miserable month (even though deep down I knew that wasn't possible) because of the muscle pain, weight loss, yeast, fatigue. It's just so frustrating to feel like you're an inch away from discovering the true underlying issue. I've been trying to research with a grain of salt. Easier said than done though.


<3 cupcake
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Re: Those With An Autoimmune Disease

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