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» What's next?
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


Vestibulitiis surgery

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Vestibulitiis surgery

Post  Coco23 on Wed May 03, 2017 12:31 pm

Hey girls.

I am 23 years old and I've been suffering from Vesti from the age of 19(the first time I have tried to have sex).
As long as I remember I never fingered myself and never used tampons due to pain and general fear.

A month and a half ago, on 16.3, I had a vestibulitis surgery after 4 years of suffering.
I went to my doctor twice after the surgery..last time was 4 days ago and he told me I can have sex now and that it looks great.

So I tried.

I still have pain in the vulvar area, a bit less but similar type of pain of what I had before.
In addition, the Veginismus is now worse than what I had before. Probably because I expected it to be painless and it didnt happen.

I am really sad and hopeless.
I dont know what to do anymore...
I thought I should do a second surgery with another doctor- but I read somewhere that it might take time to heal completely.

I am now 1.5 months after my surgery.. touching my vulvar area really carefully with my fingers and it is painful.. do u think its an unsuccessful surgery and I should redo one or is it just a matter of time?

* The surgery was done on the bottom area of the vulvar only since that was my problem.


Thank you very much for your time... hope to hear from you soon

Coco23

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Healing...

Post  Gill on Sat May 06, 2017 7:35 pm

Hi Coco,

I don't know whether you should have further surgery, but I can tell you what my surgeon told me!

I didn't have my follow-up with my surgeon until 3 months post-surgery, and she said the pain I get might still decrease further. I did have massive improvement in the area that was removed, but still significant pain in surrounding areas, which she said could be because of the way the skin in the vestibule heals, which can take longer than other places.

I am seriously considering further surgery, but will wait a few more months before going for it.

Gill

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Re: Vestibulitiis surgery

Post  Coco23 on Sat May 06, 2017 11:17 pm

Hey Gill thanks for the reply.
In my case its not only the surrending area but also when I try a finger inside of the vagina..it is painful jist like the surrending area and a similar pain to what I had before. Maybe worse. My doctor told me it looks good that I can already have sex..and I tries few times but it only gets worse and burning after everytime.

Do you also have pain if you insert a finger or just outside of it?

Coco23

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Re: Vestibulitiis surgery

Post  Gill on Sun May 07, 2017 12:06 am

Hey there, I'm not sure what you mean when you say the surrounding area as opposed to inside. To me it feels like pain on the inside; vestibule means hallway, like entrance, and that's what it's like. It used to feel like I was trying to push a flaming hot poker in there. Now (3+ months after surgery), its more like a heated needle poking in the specific places that still hurt. I have never had external pain, like on the labia, etc, like some ppl get. My drs held up a mirror and showed me what they were poking to see if it hurt. If your doctor didn't show you what the different bits were they were taking out, that wasn't very helpful for you.

When I manage to get anything through the entrance and inside, the bit that's properly inside doesn't hurt, but the entrance still hurts.

It still hasn't been very long since your surgery, so you should probably give it a couple of months more at least, and try to get a mirror down there to work out what's happening. I am planning to wait at least 6 months after surgery before deciding whether it's worked or not. People say it takes a year to fully heal.

You mentioned that you now have vaginismus; you'll know you need to treat that as well. I suggest you find a good psychosexual counsellor and/or Physio/biofeedback to help with that if you haven't already.

Gill

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Re: Vestibulitiis surgery

Post  flick001 on Mon May 22, 2017 10:19 am

Hi guys,

I was wondering from your posts you mention the possibility of having a further surgery - what exactly is this? the same sort of thing as the first vestibulectomy?

I have just had the surgery and up to week 4 recovery. I feel like the pain is a lot better but not fully gone - i can't tell much though obviously as its only been 3 weeks. But just wondering if you know what further surgery could be an option if the nerve pain doesn't fully resolve?

Thanks

flick001

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Re: Vestibulitiis surgery

Post  Gill on Mon May 22, 2017 4:18 pm

Hi, when I wrote about further surgery, it's because my dr only removed the tissue between 9 and 3 on the clock face. The other half of the circle that wasn't touched, and that's where my remaining pain is, so I'm exploring whether taking more out will improve things further. A couple of people on the Facebook group 'Vestibulectomy Surgery and Vestibulodynia Support Group' mention having a partial vestibulectomy followed by a total. My surgeon didn't want to remove the top because she said there are really bad things that can happen, like fistulas. It might be worth asking ppl who've already had both what they know about it.

Gill

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Re: Vestibulitiis surgery

Post  sj17 on Tue Jul 04, 2017 10:55 pm

Hi Gill,

Who did you have your surgery with if you don't mind me asking?

sj17

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Re: Vestibulitiis surgery

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