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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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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


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 …

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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.

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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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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


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: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

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

New and Feeling Down...

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New and Feeling Down...

Post  orchid27 on Wed Jan 01, 2014 12:20 am

I have suffered with pain for over 7 years. I married an amazing man 3 months ago who has been with me since before the pain started. I have provoked vestibulitis and underwent a vestibulectomy last week. The recovery is smoother than I expected, but what I didn't expect is the emotional toll. I am afraid my surgery will fail, I'm afraid I will will have to have another surgery if this one doesn't work. I am most affected by the ups and downs of the recovery; one day I feel great, the next day I feel like total crap. Lying in bed all day alone for a week is taking it's toll. I made a blog to try to help other women know what to expect who end up having the surgery, but sometimes I could really use some extra encouragement. My blog is at privatepainsupport. wordpress. com if you want to know about the surgery and recovery. Words of wisdom and encouragement would be such a help. I just want to smile again.


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Re: New and Feeling Down...

Post  Leslieg on Thu Jan 02, 2014 9:48 pm

Hi Orchid,
I hope you are feeling better today. I feel like the emotional toll of this might be worse than the physical pain for a lot of us. You are not alone in your emotional ups and downs. I struggle with this as well even after 5 years. My coping skills seem to be depleted. However, when my downs get severe I am forced to dig really deep within and somehow rally again. This is not easy, but we all have reserve somewhere. Allow yourself some time to feel bad about it.....you have every right. Then do something that you enjoy. I have different issues than you so I cannot offer specific advice. I just wanted to write and wish you well. I hope and pray for you that the surgery is the answer.

It's frustrating that so many of the websites re: V state that there is no cure. I would love to have the time, ambition and power to change that. Whenever I read that in a piece of literature I just want to flip off my computer :-0! It just isn't true and none of us should give up in finding our own cure. So many success stories I've read have happened 'by accident or by chance'. I hope/wish the medical field would pay attention to this.

You are an incredibly strong woman and will get through this. Try to stay positive and do whatever you need to feel happy and warm inside. You are healing. The smile is still there!


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Re: New and Feeling Down...

Post  Fingerscrossed on Fri Jan 10, 2014 10:14 pm

I had a vestibulectomy on Dec 17 for provoked vestibulitis, so I understand how you're feeling. You might even be feeling great now! I'm slightly past the three week mark and have been feeling wonderful. I was very tired of lying down all the time too because I wanted to move around and leave home. Unfortunately, I live right on a hill, so I can't really walk anywhere. If I go up the hill, I have to walk down and visa versa. I would also not recommend taking stairs for a while, even at the three week mark. I did my second checkup yesterday with my doctor and he said I shouldn't be doing that yet, after I told him I walked up three flights to get to the office because I wanted to get some exercise. He said that everything looked good and that I need to keep taking sitz baths, which I hate doing because it feels weird.

I have also been feeling those same concerns about the surgery not working. I've been told there is a 20% chance that the surgery won't work. When I was lying in the hospital bed by myself before the surgery, I started crying because I was afraid it was all going to be for naught and I felt so lonely. I know that if it doesn't work, I'm going to cry a lot and my husband probably will too because we want to be a normal sex crazed couple. Botox is super expensive and typically isn't covered by insurance. Even if it doesn't work, there are other options. I've thought about doing chiropractics because I've had back surgery and thought that perhaps I had a pinched nerve.

I hope you're feeling better!


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Re: New and Feeling Down...

Post  orchid27 on Tue Feb 04, 2014 8:59 pm

Thank you ladies! I just wanted to update and say I am doing better. I had a q tip test at my 4 week appointment with no pain! I am working with the dilators now with poor success and am having some struggle with physical therapy. Just trying to remind myself that it is a journey. I get so lonely being home all day by myself. I wish there was a face to face support group! Emailing back and forth with others has been extremely helpful though mentally. All your stories are so similar to mine, it is comforting knowing I am not the only one dealing with this.


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Re: New and Feeling Down...

Post  Alana3 on Tue Feb 04, 2014 9:06 pm

Yeah I had a vestibulectomy last year trust me what youre feeling is all normal!!!!


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Re: New and Feeling Down...

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