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» What's next?
Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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: 4

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: 3

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

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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!!

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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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