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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

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Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

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Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

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 …

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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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