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

» 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


New here, looking for some support.

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New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:34 am

Hi everyone. Let me start by saying that reading this forum today has made me feel so much less alone. My overall story is really long, so I'll try to keep it as short as I can. It all started when I was 16 and got my first uti. I believed I was over treated for it, and then started self treating for yeast when I thought that was my problem afterwards. Then started the cycle of vulva redness and burning pain. No doctor I saw could figure out what was wrong with me, and I tried so many things. I don't even remember cultures ever showing anything. When I was 18 or so I saw a gyno who told me to try changing my diet for a while, cutting out sugar, gluten, etc. I did this for about a year, and I can't remember if it help much, but it might have. I was also pretty depressed and isolated at this point. When I was 19 I met my current boyfriend, and at that point my vulva was actually pretty normal, I don't know if it was the diet, or just time, but I hardly had any pain. He could touch me, and we would do all sorts of foreplay just fine. After 6 months we decided to have sex (we were both virgins) and it was wonderful. I only had minimal pain at the beginning, but I think that's normal for your first time. I did end up with a uti, and yeast infection, but those cleared easily. Then those both happened again the next time we had sex. So I decided that condoms might be the culprit, and I got the implant in my arm. I had some infections occasionally while on, but I could clear them with boric acid. I do remember at one point I tried using vitamin c vaginally (I read about it online as a bv cure) and that caused awful burning that lasted for months, but eventually did pass. After three years I did get the implant removed, and was briefly put on the pill. I had a bad reaction to it, so discontinued after less than two months. So now I'm 23, and basically at my wits end. I've had vulva burning, stinging, soreness, itching, and everything bad for about 3 months now. I did have a uti around the beginning of it, but the pain started before that. I've been tested for yeast, bv, stds, you name it. Sometimes it would come back with a little yeast or some clue cells, but the treatments never helped. I also know what it feels like when I have an infection, and it's nothing like this. I haven't been able to have sex because of the pain, which is unprovoked but is almost all the time. I've been seeing a natropath, and she did test me for food allergies while came back that I'm very sensitive to dairy. I've cut out dairy for almost a month now, but vulva pain is very much still present. She may want to also test my hormones, but all these tests are getting expensive. I had normal cycles before bc, but now I only get a period every month and a half or so. I also overall don't feel that great, I'm tired most of the time, I get lower back pain that sometimes feels like a burning pain, headaches, nausea, I'm basically a mess. But I would deal with all of this if I didn't have this awful burning pain, it honestly makes me so depressed, I'm lucky that my boyfriend is supportive. Maybe I just needed to vent, but advise would be much appreciated.

PhoenixFire

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:37 am

I also wanted to note that last year I had an amazing year. My vulva and vagina felt almost totally normal, I was having sex with my boyfriend once or twice a week, and it would have been more often if possible. This problem only started after coming OFF of birth control, so I wonder if it could be hormone related after all. It's so frustrating to not have a clear idea of how to get better

PhoenixFire

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 18, 2016 1:43 am

One last thing! And this really is the last thing. Has anyone ever had a bad reaction to boric acid suppositories? I used one today because they've worked so well for me in the past without side effects, but not only did it make my pain worse (I'm sure it's because this isn't an infection, and because I've been imflamed for so long) but I've also been feeling really tired, spacey, and just off. I feel like it might be a reaction, and it's honestly a little scary

PhoenixFire

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Re: New here, looking for some support.

Post  PainBlogger on Sun Nov 20, 2016 10:35 pm

Sorry that you're feeling bad with this horrible condition.

My problems also started with a UTI (and concurrent thrush). You can read here what I've tried: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

I need to update that thread again as I'm still doing well. Duloxetine has been a really big help to me. My average daily pain is now 1/10 and I'm pain-free much of the time. But it took me a while of trying unsuccessful treatments before I found what worked.

Has any doctor mentioned fibromyalgia to you? If you're getting back pain, headaches and tiredness as well as vulval pain then maybe you have a more widespread chronic pain condition. Would you be able to see a pain specialist?

I hope you find something or combination of things that works for you soon.

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Re: New here, looking for some support.

Post  PhoenixFire on Fri Nov 25, 2016 4:51 am

Thank you for the reply! I've actually been looking into fibromyalgia, since I've been getting lower and mid back pain that is like a radiating burning, pain in my pelvic bones, upper back pain, muscles pains that aren't from exercise, fatigue, etc. And of course the ever present vulva burning, I'm laying in bed with an ice pack down there as I type this. Sad
I also had a bit of a scare because I was taking antibiotics for a suspected uti, but a few days into it I woke up with a high fever, headache, lower back pain, dizziness. I went right back to the doctor, but she said she thought it was a virus because they didn't find bacteria in my urine. Luckily after one miserable day my fever was gone, and I felt a lot better. Still not feeling great, but that's been my life lately. Maybe a pain specialist is somewhere to look, but I'm only 23 with limited funds unfortunately.

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Re: New here, looking for some support.

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