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» I don't know what to do anymore
Yesterday at 5:21 pm by Aquaben

» Social Security Disability Benefits
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


Struggling

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Struggling

Post  doublej on Wed Dec 13, 2017 7:36 am

It's been getting to me a lot lately. The emotional pain of vulvodynia. It has made my sex drive plummet and that's affecting my relationship a little bit. On top of that I have a couple of friends that are trying to get pregnant and that just makes me wonder if I will ever be able to have that.

I have been struggling with this disease for about a year and a half now. I have seen four different doctors and tried too many different solutions to count. I've done different creams, pills, dilators, and even a physical therapist. The current doctor I am seeing "specializes" in this type of stuff but she still admits that it's really just trial and error with me. I am getting really worn out. I guess the hardest part about this disease is that nobody really knows why I have it or how to fix it.

I am scared that this is something I am going to have to learn to live with. That I have to accept that biological children may be out of the picture. That I may never be able to experience what sex actually feels like. I really need some encouragement or something to boost my moral.. I'm about ready to give up on trying to fix it cause it is so mentally draining...

doublej

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Age : 19

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Re: Struggling

Post  PainBlogger on Wed Dec 13, 2017 12:26 pm

I can totally understand your frustration and fear that the pain will never go away. I felt like that for a long time. However, I am now in my last few weeks of pregnancy (achieved through natural means). So there is always hope.

Rather than me retype my history, you can read it here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement if you want. Ignore the "four months" in the post title - it's been a lot longer than that now.

The most important thing I can say is don't give up. Try everything. Even consider re-trying things that may not have worked earlier in your struggle. It took me a long time to see progress from physio/physical therapy, exercises and dilators but it worked in the end in combination with medication. It takes so much patience and mental resilience to fight this condition and that is so difficult to maintain. Have you considered trying some psychological therapy to help with the associated anxiety? I don't know how old you are but for myself, being in my late thirties, there was extra pressure to get better quickly so I could TTC and that extra pressure caused extra stress. Which of course didn't help.

I hope you see some progress soon.



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Re: Struggling

Post  doublej on Thu Dec 14, 2017 3:19 am

I’m only 19, so there really isn’t a lot of pressure to have kids and so forth, but it’s still just exhausting. I’ve been with my boyfriend for 2 years now and can’t even have sex with him. I go to the doctor for exams and I burst out in tears from the pain of a qtip touching me.

I guess when I’ve been struggling with this it’s most difficult because I never see any progress. Nothing has made it remotely better, in fact it’s gotten worse than it was to start.

I just would like to be able to have a normal sex life, to start a family of my own, etc.

I’m just tired.

doublej

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Re: Struggling

Post  sarisbaris on Tue Jan 02, 2018 11:13 pm

Don't lose hope! Please read my blog. I battled V for 15 years and I consider myself cured now. And my pain was just like yours. It burned to the touch and actually it burned for no effing reason at all. And no, it didn't take 15 years to cure. It didn't take long, once I found the right advice. I have a husband, a healthy sex life and happy crazy toddler. Be careful what you wish for! Haha!

My blog explains all. And yes, you are correct. The doctors do not understand what's going on and facing that is scary. But don't worry. I healed. You can heal. And I understand your exhaustion. Being in chronic pain is draining, specifically on your adrenals. So we'll need to heal those as well. You're not making up the exhaustion.

Read my blog and let me know if you have questions. I have some topicals that might help the burning that will save your sanity while you kill the virus and heal your organs.
Sarah

http://myvulvodyniacure.blogspot.com/


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Re: Struggling

Post  Mintaherb on Sun Jan 14, 2018 4:29 am

Did you start taking hormonal birth control around the time your pain started, or around 3-6 months before? If so, that could be the cause of your vulvadynia. It might be worth considering coming off it and seeing if things settle down. You can also apply a compounded estradiol/testosterone cream to the vulvar vestibule, which will help to correct the hormone imbalance caused by hormonal contraception.

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Re: Struggling

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