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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

» Coping with Vulvodynia
Tue Feb 13, 2018 3:55 pm by NaughtyNanny

» Newby not sure where to turn
Tue Feb 13, 2018 2:10 pm by sarisbaris

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

Comments: 2

Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

Comments: 0

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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just diagnosed and scared

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just diagnosed and scared

Post  whiteroses117 on Fri Aug 23, 2013 9:30 pm

Hi everyone,

My name was Kim, I was just recently diagnosed with vulvodynia. I've been also living with IC and IBS, but the vulvodynia is the worst. I have unprovoked V, and it currently hurts so much. I am laying here with ice, and it is helping a bit, but it will just go back to hurting after I have to pee again. This flare came out of nowhere- just went to the bathroom and it burned ever since. Sex is usually painful- I can rarely have sex with my boyfriend without wanting it to stop. I have listed what I'm using for all my disorders down below. I would love to talk to people who are going through this too; I have been very depressed and very scared and I don't know if I'll ever find relief. I would love to hear any success stories.

Thank you all for listening!

-Amitriptyline: 10 mg a night- hasn't helped yet
-Estrace: vaginal cream used 2/3 times a week- just messy and it burns when it comes out
-Neogyn: I started this about two weeks ago and it still burns when I put it on. Says it takes about 6-8 weeks to work, so I'm trying to be patient.
-Aloe pills: Unfortunately, these make me very nauseous. I need to be more regular with them, but I dead taking them.
-IC diet: I try to stick as close to it as I possibly can
-Imodium: I have bad IBS symptoms so I often need to take Imodium.

I hope to hear from you soon <3 -Kim

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Re: just diagnosed and scared

Post  KJ on Sat Aug 24, 2013 3:26 am

Hi Kim,
I know how you feel...it is such a painful and lonely disease. There are a lot of success stories on this site and new treatment ideas. I wish I could share a success story, but unfortunately I'm in your same boat. My doctor just tried a round of botox injections....I am in day 11 and still waiting for relief...I pray it works.
Glad you found us....you aren't alone anymore!

KJ

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Re: just diagnosed and scared

Post  Sarah001 on Sat Aug 24, 2013 1:38 pm

Hi Kim,
I just wanted to say the dose of Ami you're on is very low, what they usually do with that one is increase the dosage by 10mg a week until 50mg and then see if it's helping at all. If it isn't they would then probably give either Gabapentin or Lyrica so it might be worth asking about increasing the dose to begin with. I'd also read "When Sex Hurts" and see if you can establish why the problem has occurred so you know better how to treat it. it's a really good book and covers all the known possible causes which is incredibly helpful when trying to put together a treatment plan. I know for practically everyone on here it seemed to arrive out of nowhere but often there are some other signs and symptoms before the V that can lead you in the right direction. For example alot of the ladies with tight pelvic floors had symptoms such as having to push urine out, constipation, back pain etc or those with hormonal issues have skipped periods or had just started a different birth control pill. It's a good idea to read up either in that book or online about causes and see what you can come up with.

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your not alone

Post  zarli on Sat Aug 24, 2013 2:14 pm

Hi Kim
Your not alone, since joining this forum I have felt so much better, just reading the positive comments is wonderful. There is always hope and new things to try. I agree with every thing Sarah said to you. And thank you Sarah you seem to answer every one with such positive remarks and it really makes a difference, you are appreciated. I am a true believer in that "Nothing ever stays the same", as much as you can be in pain one day you can have relief the next day. Up the amitriptyline Kim under guidance with your Doctor, I went up to 35mg and my pain went over night and that lasted for 4 years. Under Sarah advise Im trying to find the source of the pain now and I will never give up!!

zarli

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Re: just diagnosed and scared

Post  Sarah001 on Sat Aug 24, 2013 9:33 pm

Aww bless you zarli and keep trying to find that cause and eliminate it! I think proactive is the only way with health problems and the more clued up you get about it the better choices you make. Good luck girls! Very Happy 
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Thank you

Post  whiteroses117 on Mon Aug 26, 2013 8:15 pm

Thank you all for responding. I wish you all the best of luck. It means a lot to me to talk to people who are in my shoes. I'm going back to the doctor in a few weeks; hopefully he will up my dosage of Amitriptyline. Neogyn has been been burning, so I don't know if I should continue with it.

I am having a very bad flare for the last couple of days. I don't know if it's an actual flare or a yeast infection, just because it is so bad. I'm swollen, red, itchy, and it burns like crazy. I can't even wipe without it hurting. My urine has been burning it as well. Is this a flare? How long do flares last? I'm so new to all of this.

Again, thank you all for responding. I am very scared, and your responses really do help.

<3 Kim

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go to doctor

Post  zarli on Mon Aug 26, 2013 9:10 pm

Kim you need to see your doctor NOW not in a few weeks, your ami needs to go up now so it can help get rid of your symptoms and control the pain. When pain is controlled your symptoms will be relieved I believe. Try to not think bad things don't be scared there is help you just need to get to the doctors

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also...

Post  zarli on Mon Aug 26, 2013 10:25 pm

also you should try BEPANTHEN ointment it is a nappy rash cream you will find it in your supermarket in the baby aisle it acts like a barrier and it is soothing, it will help stop your wee from stinging, and while your there try Johnsons baby soap in the baby aisle, its the only soap I can use. I hope this helps you.

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zarli

Post  whiteroses117 on Mon Aug 26, 2013 10:52 pm

I called and I'm going in next week. I'm hoping he ups the dosage. Have you ever confused a flare with a yeast infection? I can't even have pants on (or anything touching the area) today. Thank god I have off today!

Also, thank you for the soap tip!! I use Aveeno soap- doesn't burn me. I'll try Johnson's though- may be even better!

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good news

Post  zarli on Tue Aug 27, 2013 11:10 am

Glad you got into your doctor tell him you have researched medication and 35 mg is what works be assertive with dr I always find it helps even though I get intimidated being assertive but its worth it!! I have had lots of flare ups and yes I used to get them checked for yeast infection which always proved negative!! Please let me know how you get on and don't forget to try the cream if you haven't already kindest regards Zarli

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Re: just diagnosed and scared

Post  Sebby (Admin) on Thu Aug 29, 2013 4:05 pm

Welcome to the forum, as you can see you are definitely not alone. We are all in or all have been where you are now. I am on lyrica and had to research that myself and ask for it! I am also doing pelvic floor training (trying a new routine)
Don't give up, things can and will improve. It's about finding the right treatment for you x
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how are you going?

Post  zarli on Tue Sep 10, 2013 8:59 am

Hi Kim just wondering how you are going? Hope you have had some relief.

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Re: just diagnosed and scared

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