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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.

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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 …

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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 …

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New member

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New member

Post  Lisa1627 on Sat Mar 18, 2017 7:37 pm

Hi ladies. I am new to the forum. I have had what I think is vulvodynia. I can honestly say that I hate my life and myself right now.  There are days when I think I would rather be dead. This is going to ruin my life. Sorry for the negativity and I imagine no one on here can relate because I haven't read anyone saying theres is caused by hsv. But I thought I would post anything


Last edited by Lisa1627 on Tue Feb 27, 2018 1:42 am; edited 1 time in total (Reason for editing : Too much info)

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I'm sorry you're feeling down

Post  overit14 on Fri Apr 07, 2017 12:01 am

Hello. I wanted to respond to tell you that you are not alone. Although my pain is not related to an STD, it is still very painful and affects my sex life greatly. It also affects how I feel about myself as a woman. So just know that even if you haven't found someone with your exact symptoms, you still have people out here dealing with various degrees of pain for different reasons and in different ways. I hate to hear that you feel like you don't want to live b/c of this. There is always hope. I would suggest to continue looking for support online and def offline as well. I know it's super personal, so the only people I talk to about it with are my mom and one of my friends. Keep researching doctors in your area and see who might be able to help you. Just b/c one or even a few doctors didn't work out doesn't mean there isn't one out there that will. Also, b/c you are feeling so sad, I would look into maybe talking to a professional? Just want you to know someone cares and I'm really sorry you're going through this. I wish I could help and make it all better for you but just know you're not alone. I love you

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Thank you

Post  Lisa1627 on Mon Apr 10, 2017 4:08 pm

Thank you for responding to me. I am feeling a bit better as I am on lyrica now, but I still feel pretty hopeless. I just wanted to say that I do appreciate your kind words.

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Re: New member

Post  mary jane on Tue Apr 25, 2017 12:01 pm

the medication doesn't work like anesthetics to trick your brain or anything, they are supposed to try and reprogram it altogether....you can google neuroplasticity for an example.
How have you been btw?
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Re: New member

Post  Lisa1627 on Tue Apr 25, 2017 12:30 pm

mary jane wrote:the medication doesn't work like anesthetics to trick your brain or anything, they are supposed to try and reprogram it altogether....you can google neuroplasticity for an example.
How have you been btw?

Hi Mary Jane, I am hanging in there trying to live a life as normal as possible. I am freaking out right now because my doctor wants me to get an MRI to rule out anything. I always think the worst and am dreading that maybe its MS related. Nerve pain can be ms related. How are you doing? You are new to the forum? What is your story? Thank you for responding. Its always nice to have people to talk to as only my boyfriend and 1 friend know my situation as its too embarasing to tell people.

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What are your symptons?

Post  rmb on Tue May 09, 2017 8:05 pm

I can definitely say you're not alone in feeling like you would rather be dead. This week for some reason has been the toughest week I've had in a long time since dealing with this (10 years and counting). The latest gyno I seen, her end result was I will most likely never feel relief and that my boyfriend will have to wear a condom...I feel so defeated...and Vulvodynia doesn't affect your sexual partner but my boyfriend complains of a "burning pee hole" after sex with me and even days after sex with me. We haven't had sex in a long time so I don't know if he still feels anything but he hasn't said anything. I just feel at the end of my road, I've been tested for everything and everything comes back normal but I have a constant burning vagina and I can't even have sex with my boyfriend or I will pass it on...I'll be alone forever...I've been having suicidal thoughts for months I just don't want to feel this uncomfortable burning I'm going crazy

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Re: New member

Post  Lisa1627 on Wed May 10, 2017 11:21 am

Hi RMB, thank you for responding to me.

Its funny that you responded because yesterday was also a bad day for me, but lately most days are bad. But don't let you gyno tell you that you will never recover. I know 10 years is a long time and I am feeling hopeless only having this for 6 months. But sometimes all we have is hope! So don't give up.
I also don't think having your boyfriend wear a condom is the worst thing in the world. And it breaks my heart because we love each other so much. He is a beautiful man and has been my only source of comfort thru this whole ordeal. I tell him everyday that he deserves better than me and should go find someone normal. Because I am broken!  I am an attractive 46 year old woman, who doesn't look at all my age, but I feel so bad about myself.  46 is too young to give up on a sex life. I sometimes wish I was older so and over sex so this wouldn't be such a big deal.
So is your pain only when touched or all the time? Mine is burning all the time, touch doesn't bother me. My burning is in my vag and also I get talbone buring and a burning in my butt (feels like a sunburn). Have you tried Lyrica? Its making me gain weight which I hate, but it has helped with the pain.
Last night I sat in the tub with my boyfriends razor staring at my wrist wondering if I could ever really do it.  I know I would need a different razor, but the having those thoughts really scares me. Please write back! Lisa


Last edited by Lisa1627 on Tue Feb 27, 2018 1:45 am; edited 1 time in total (Reason for editing : Tmi)

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Re: New member

Post  rmb on Wed May 10, 2017 7:40 pm

My pain is burning in my vag constant...sometimes it's worse than others for some reason but none the less it is there, rain or shine. I agree my boyfriend wearing a condom isn't the worst thing but I feel like that's a band aid to the problem "just put a condom on and pretend nothing is wrong." I haven't even told my boyfriend about my problem only because I don't know what to tell him..."Hey Babe, I have a constant burn in my vag and the doctors say nothing is wrong with me but sorry it's making your penis burn too." If I knew 100% what was wrong I would tell him and we would figure it out. I know that Vulvodynia makes the most sense for me as every test comes back as normal and trust me I've been tested for every possible thing just the only thing that does not make sense is that it affects my sexual partners. I've had 5 boyfriends and everyone has complained at some point or another. I would rather have Vulvodynia and do all the steps to help beat it then to just not know...that's the part that's killing me is the not knowing...Has your boyfriend ever complained of having a burning or irritated feeling after sex?

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Re: New member

Post  Lisa1627 on Thu May 11, 2017 12:15 pm

I would have to say that you must have something else going on that's not being detected by testing... No my boyfriend has not complained about burning. Have you tried using probiotics for women? Maybe its some kind of BV that tests aren't finding? I wish I knew what to tell you. How long have you been with this boyfriend? Isn't it hard to keep this from him? I am depressed alot from this and there is no way I could keep it from my boyfriend because of how said it makes me. How old are you? Where are you from? You can PM me if you want. I'm just asking questions to get to know you more.

Talk to you soon!
Lisa

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Private Message

Post  rmb on Thu May 11, 2017 3:03 pm

I have PM'd you!

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Re: New member

Post  mary jane on Tue Jun 06, 2017 10:32 am

Lisa1627 wrote:
mary jane wrote:the medication doesn't work like anesthetics to trick your brain or anything, they are supposed to try and reprogram it altogether....you can google neuroplasticity for an example.
How have you been btw?

Hi Mary Jane, I am hanging in there trying to live a life as normal as possible. I am freaking out right now because my doctor wants me to get an MRI to rule out anything. I always think the worst and am dreading that maybe its MS related. Nerve pain can be ms related. How are you doing? You are new to the forum? What is your story? Thank you for responding. Its always nice to have people to talk to as only my boyfriend and 1 friend know my situation as its too embarasing to tell people.

I was never embarrassed to tell others but I could see they feel embarrassed FOR ME if I tried to open the topic ...whatever, fuck them.
It really sounds like you have post herpetic neuralgia ..I don't know why they call it vulvlodynia
I found some info on other forums
https://www.ic-network.com/forum/showthread.php?52591-Genital-Herpes-A-Non-Traditional-Cause-of-Pudendal-Neuralgia
http://www.healthboards.com/boards/trigeminal-neuralgia/462517-genital-post-herpetic-neuralgia.html

I would go back to your doctor and mention this ..I can't believe doctors plaster vulvodynia on so many different types of symptoms and conditions...

Oh, and definitely stick to your medication for the time being... Most likely it is going to go away for you, I'm sure..

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Re: New member

Post  Lisa1627 on Tue Jun 06, 2017 11:47 am

Hi Mary Jane, I am also taking antivirals, but they do nothing for the pain.

I haven't done the MRI because i am too afraid.

I have had this for 8 months now. It doesn't seem to be going away.

Thank you for responding.
Lisa


Last edited by Lisa1627 on Tue Feb 27, 2018 1:39 am; edited 1 time in total (Reason for editing : Too much info)

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Re: New member

Post  mary jane on Tue Jun 06, 2017 12:33 pm

Lisa1627 wrote:Hi Mary Jane, I did mention the post hepetic neuralgia, so I am also taking antivirals, but they do nothing for the pain.

I haven't done the MRI because i am too afraid.

I have had this for 8 months now. It doesn't seem to be going away.

Thank you for responding.
Lisa

Sad I'm sorry to hear ..
I think it will go away with time. IT should
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Re: New member

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