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» Cleveland Clinic - Pain Management, Weston, FL
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» 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 …

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


Hey everyone I'm new and confused. Does this sound like Vulvodynia?

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Hey everyone I'm new and confused. Does this sound like Vulvodynia?

Post  Bananasmiles on Thu Jun 16, 2016 12:48 am

Hey everyone, so I'll start from the beginning. Im 19 years old, and about a year and a half ago, I had sex for the first time. It felt like it hurt more than it should but I thought it was normal pain since it was my first time. After having it a few times though I realized it was hurting a lot more on only one side. I got kind of worried but it went away when I stopped having it, and didn't really bother me. But it really hurt to be fingered as well, again just on one side. From then on, I would have weeks where that same area would hurt, like when I wore tight clothing, or after having sex, and the area hurts upon touch. But then it would almost just seem to go away, until I did one of those things again. About a week ago, I started getting burning after I got my period, and it was really intense, it put me in a really bad mood, and it felt horrible. I finally went to the DR, who thought it was herpes, but she didn't see any blisters, and all the tests for STDS came back negative, there is no cyst, and no yeast infection. It still hurts down there, especially when I walk, not a lot, just kind of like a dull pain, in just one spot. Its just upon entry of the vagina. Does this sound like it could be vulvodynia? Thank you so much for reading and for your help!

Bananasmiles

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Re: Hey everyone I'm new and confused. Does this sound like Vulvodynia?

Post  emalita on Thu Jun 16, 2016 2:45 am

Hi Bananasmiles,

Your pain sounds like provoked vestibulodynia, which is just a fancy way of saying your vestibule hurts from pressure. Vestibulodynia and vulvodynia describe symptoms, not the cause of the pain. For your situation, you may want to research pelvic floor dysfunction, overactive/damaged nerves, pudendal neuralgia, etc.

Have you been seen by a pelvic floor physical therapist, or have you tried any antidepressants or anticonvulsants for nerve pain (e.g. gabapentine, amitriptyline, etc.)?

What else have you tried to relieve your pain? Do you find that any specific time of the month is worse than others?

emalita

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Thanks for the quick reply!

Post  Bananasmiles on Thu Jun 16, 2016 3:41 am

emalita wrote:Hi Bananasmiles,

Your pain sounds like provoked vestibulodynia, which is just a fancy way of saying your vestibule hurts from pressure. Vestibulodynia and vulvodynia describe symptoms, not the cause of the pain. For your situation, you may want to research pelvic floor dysfunction, overactive/damaged nerves, pudendal neuralgia, etc.

Have you been seen by a pelvic floor physical therapist, or have you tried any antidepressants or anticonvulsants for nerve pain (e.g. gabapentine, amitriptyline, etc.)?

What else have you tried to relieve your pain? Do you find that any specific time of the month is worse than others?

Hey! I haven't researched much into that, but I just looked them up, and I guess really any of them could be a possibility? Im not sure. I haven't seen any specialty doctors, just a general doctor. I do have Generalized Anxiety Disorder, which I don't know if that makes it worse? Also the guy who I lost my virginity to, did not go gentle on me, and so I'm thinking he could possibly have damaged a nerve or something. I haven't asked for antidepressants, but I can give it a try if it helps. The one thing I always find to help is sitting in the jacuzzi, and no it is not worse at any specific time, except maybe when I get my period.
Is there a reason it only hurts on one side? Thanks for the quick reply!!

Bananasmiles

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Re: Hey everyone I'm new and confused. Does this sound like Vulvodynia?

Post  emalita on Thu Jun 16, 2016 1:12 pm

Unfortunately there could be so many different reasons why it only hurts on one side. We all are different, and our bodies react to this horrible condition in such unique ways. The best answer I can give is that there is no good reason, and it's just because your body has decided to hurt on that one side Wink Your pain could definitely have been caused by something your first partner aggravated, or that could have just been your first trigger.

Did you notice any pain prior to your first time having sex (e.g. inserting a tampon or finger)?

Personally, I would suggest trying to see a pelvic floor physical therapist prior to going the prescription route just because I'm not the biggest fan of prescriptions that I have to take for the rest of my life. If you do want to try a prescription first, see if your doctor can prescribe them in a compounded cream that is applied directly to the vulva. This will help cut down on side effects. You will probably need to see an experienced vulvar specialist in order to have the best recommendations and follow up with the prescriptions.

I'm not sure where you're located, but pelvic floor physical therapists are a lot more common in many areas than most women realize. Plus, if nothing else, the therapist could probably recommend a good vulvar specialist to work with.

Keep us updated on how you're doing! sunny

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Re: Hey everyone I'm new and confused. Does this sound like Vulvodynia?

Post  web96 on Sun Jun 26, 2016 4:43 am

Yes I'm sorry to say it does sound like provoked v. I have the same thing, it used to feel like a burning/stabbing pain, which for me was caused by a severe allergic reaction of the glands in that area. I also had discomfort during my period due to the moisture causing chaffing. Things got way better after I pinpointed my sulfate/detergent allergy though, and I've talked to a few other women that have the same allergy/reaction. I still have a bit of nerve pain from years of this, which I'm treating as a separate issue, but it's like 90 percent better. You can read my story in my sig for all the details
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Re: Hey everyone I'm new and confused. Does this sound like Vulvodynia?

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