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Yesterday at 4:01 pm by jennyk2

» Pain management - what works for me
Yesterday at 3:41 pm by Jo44

» Share your Vulvodynia Story and become a member of the Global Anthology!
Mon Apr 23, 2018 10:44 pm by smyerskelley

» If it helps anyone else
Mon Apr 23, 2018 6:36 pm by VH7797

» Cured, cyst in foot
Mon Apr 23, 2018 4:06 pm by Guest

» HELP!! Topical cream?
Sun Apr 22, 2018 5:44 pm by emalita

» The pain CAN get better - What's worked for me
Sun Apr 22, 2018 5:32 pm by emalita

» Custom made leggings?
Sun Apr 22, 2018 4:52 am by CatJones

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

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


New to all of this

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New to all of this

Post  annaCA on Mon May 16, 2011 1:39 am

Hi all,

I have read this board for a bit. My story is so similar to a lot of you. My burning pain started about 9 months ago. I went to various doctors (Urgent care, GYN, dermatologist) and they all looked at me as if I was crazy since they did not see anything abnormal. I swore that I had an STD even though I have never had sex because I have only ever heard of pain down there because of an STD. I had a biopsy which was quite painful and only thing it said was a mild inflammation. I finally found a Pelvic Pain Specialist who diagnosis me almost immediately with V and I think I found a doctor who actually understands what I am going though (who would of thought it would be a male). I am so thankful for the nva.org site for helping me find a specialist who finally diagnosis me with something. He put me on estrogen cream which helped a bit and now trying an estrogen/testosterone compound. I think this cream made the burning worst again, but I have another appointment this month. The burning pain is bad, but the emotional impact of this is far worst. I am happier when around friends, but when I am alone, the pain increases with sadness.

I am looking for a bit of support and I have to say just being able to read posts of this forum has been a lifesaver. I thank all of you for having the courage to share your stories.

Anna

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Re: New to all of this

Post  noni on Mon May 16, 2011 3:58 am

Hey Anna,

Im so glad you found this forum. Its a blessing for us V ladies.

My experience is quite similiar to yours. I had in the first months of my Vulvodynia just the most disturbing burning and acid like pain in my vulvar area. I went to regular docs, once even an emergency room, dermatologists...again alot of them made me feel like I was crazy and several implied that I may be a basket case. Finally, a specialist told me that I have neuropathic pain of the vulva. Basically, some sort of nerve irritation which manifested itself as burning, searing, acid like, stinging PAIN.

I am currently on Amitriptyline. Although I am not 100 % ...I am better these days. Still, have to limit myself at times...no bike riding or trousers. Oh well.

I have looked into physio for the pelvic floor muscles...just need to find the time to book an appointment. Quite difficult as I work full-time and barely have time to go for groceries. Neutral

There are alot of very knowledgeable ladies on here. I have gained alot from reading their stories and posts. We are the experts.

Never would I have thought a condition like this to exist. But life throws curve balls at you sometimes. Its a matter of coping and self-management for me with my vulvodynia. I am not looking for a cure or easy fixes. Its going to be a long road, but I have come so far when I look back at the pain I was in a couple of months ago.

Anna, if you are on meds make sure to give them time to work and build up in your system. Also, you need to find out what dosage gives you pain relief. The Amitriptyline gave me results at 50mg. So as you can imagine, it wasnt an overnight thing. It took a good couple of months.

So, yeah, this is a journey for us ladies. In so many respects....emotionally, mentally, physically, and spiritually we are being tested to the max.

Anywhoo....welcome.

You are in good company here ! sunny





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Re: New to all of this

Post  Sarah001 on Mon May 16, 2011 11:20 am

Hi Anna and welcome, has your pelvic pain specialist looked at the pelvic floor muscles? They can be the cause of this or at least a massive contributor.
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Re: New to all of this

Post  Sebby (Admin) on Mon May 16, 2011 8:42 pm


Hi Anna and welcome to the forum!

Glad you found a dr who cares..thats a brilliant start. I havent tried hormone creams. Was put on various birth control pills which did nothing and just made me dry so that didnt help

I am on Pregabalin (anticonvulsant) 300mg and also trying biofeedback pelvic floor therapy (currently having to take a break from the biofeedback till I recieve the new sensor) I found good pain relief with both approaches but had a flare up last week and think its either due to the sensor being mental or that fact that I started eating more sugar products again or both who knows!

Deff look into the pelvic floor thing, discuss it with your dr and see what he says

Yes I find the time I am alone I feel the worst..get very anxious and desparing...but we are here for you and understand what you are going through


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Thanks for the replies

Post  annaCA on Wed May 18, 2011 1:22 am

Hi all,

Thanks so much for all the replies! I haven't talked to my doctor yet about pelvic floor exercises, but I know that is on his list of things to try with me. His theory is you need to find the right combination of medication/PT/natural remedies/diet to help you heal. He says that the same thing does not work for each patient which is quite annoying, but seems to be true with what I read. Hopefully, my appt. next week we will find something to at least start to reduce the pain (I am mainly concerned about getting through finals first Smile ).

Again thanks for the replies. I'm glad I have a place to come and discuss as I feel my friends and family don't quite understand it.

Hugs,

Anna

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Re: New to all of this

Post  Mouse on Wed May 18, 2011 7:00 am

Hi Anna and welcome!

I'm glad you have found a Dr who at least knows what vulvodynia is - the diagnosis really just means pain in your girl bits but it's better than being treated like a fool. We've all been there!

I have burning pain (generalised unprovoked V.) I also had an increase in pain with moods/stress etc. I've come to understand that lifestyle choices have a huge impact. SO diet modification is big in my world. I went sugar free!!! It's hard to imagine life with sugar in it now. It made a significant difference to my pain every day. I also meditate, try to control stress, have pelvic floor physio, limit coffee (that also made it worse) and alcohol. And I have a therapist to blurt out all my crap to. I try for feel good stuff, it doesn't always work but I want to be in control.

Good luck in your search for answers, we are all to offer support and encouragement xx.

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Re: New to all of this

Post  Zazu on Wed May 18, 2011 6:30 pm

Hi Anna,
I thought it would be reassuring for you to know that the most recent research coming out of the US supports starting with hormonal treatments for V and then progressing to other meds like ami or gaba (in addition, as your thoughtful dr. mentions, to lifestyle/PT). This research comes out of the 'When Sex Hurts' book by Dr. Goldstein et al. Do you know if you have generalized vulvodynia or provoked vestibulodynia? Usually hormonal treatments are for provoked v., but no harm trying it for either! When I go back to my gynae I'm going to ask if I can try it too!
Best,
Katie

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Re: New to all of this

Post  annaCA on Fri May 20, 2011 12:05 am

I have generalized V so it hurts all the time in random places all over. I have been reading a few other posts and was wondering if you could tell me what a flare-up is?

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Re: New to all of this

Post  Zazu on Fri May 20, 2011 4:49 pm

A flare up for me is when the pain gets really bad. I have provoked V and, potentially, generalized too. What I mean is, penetration feels like burning/searing ripping at the opening but I also have days, usually when I try to wear jeans, when there is just irritation everywhere with some stabbing pain or weird crawling feelings thrown in just for fun. When that happens to me, I call it a flare up. I think it's generalized because it's not at the vestibule only, and it can happen when there's no provoking (i.e. when I wake up and I'm only wearing a t-shirt).
Some ladies seem to have the irritation & pain all the time, so it's like a constant flare up. For others the flare up is just when the pain goes from 2 to 8. It's all individual I guess.
How about you?

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Re: New to all of this

Post  itchyandscratchy on Tue May 24, 2011 7:42 pm

Zazu wrote:A flare up for me is when the pain gets really bad. I have provoked V and, potentially, generalized too. What I mean is, penetration feels like burning/searing ripping at the opening but I also have days, usually when I try to wear jeans, when there is just irritation everywhere with some stabbing pain or weird crawling feelings thrown in just for fun. When that happens to me, I call it a flare up. I think it's generalized because it's not at the vestibule only, and it can happen when there's no provoking (i.e. when I wake up and I'm only wearing a t-shirt).

I have this exactly, sometimes if I can manage to avoid wearing any tight fitting clothes for a few days I start feeling better then optimistically try jeans and then get what you describe above, tingly crawling feelings...
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Re: New to all of this

Post  Sebby (Admin) on Thu May 26, 2011 7:59 pm


A flare up is when the pain gets really bad and intense

For instance I can have moderate or low pain days and then wham! serious pain that makes me wana just cry and retire to bed...

The only thing I can say to myself during these days (having flare up day today) is that it will pass and ease up..

Keep positive..I know it can be so difficult but try and remember you can vent on here!


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Re: New to all of this

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