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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

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 …

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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

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: 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


So thankful to have found this!

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So thankful to have found this!

Post  Ellie on Wed Dec 08, 2010 7:10 am

Hello! I am glad to have found this and I will be posting my story later, but reading through the other stories was quite refreshing and I am glad to have this opportunity to discuss with others about this within the forum. I have been suffering from this for almost 2 years now and only myself and my boyfriend know. It is really hard and upsetting when you have no one to talk to or understand what you are going through. Especially doctors! I just recently went to a different doctor (she actually did one of the pap smears I got out of the many within the last year) and she actually sat and listened and I searched the internet and found Vulvodynia about a month prior. I told her about it and after the exam she determined that I indeed had it.

She told me to get Tea tree oil ( I believe that is what it was called) and to call her in a month. If it is still bad she is going to send me down to a specialist in Saint Paul, Minnesota. ( I live in Saint Cloud, MN). So wish me good luck and I do with all of you! I am happy to meet you all! Very Happy
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Re: So thankful to have found this!

Post  Sarah001 on Wed Dec 08, 2010 2:33 pm

Hi Ellie and welcome to the forum. Just a quick word of caution though, tea tree oil can be a real skin irritant so be careful with it!
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Re: So thankful to have found this!

Post  Ellie on Wed Dec 08, 2010 5:32 pm

Thanks Sarah, and actually what does the oil actually help? My doctor didn't really further explain it, she just told me to check it out =O
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Re: So thankful to have found this!

Post  Sarah001 on Wed Dec 08, 2010 8:34 pm

Tea Tree oil is supposed to be anti-fungal and anti-bacterial so it will only help if you have a yeast or bacterial infection but to be diagnosed with vulvodynia those things should be ruled out first with swabs so as far as being a vulvodynia treatment it isn't going to help. It is however very irritating to the skin and I don't think I'd put it on my lady bits! Have you had infections ruled out? If not you can be tested for everything at a GU clinic, they're not just for STIs these days and they will be able to tell you if you have a yeast or bacterial infection.
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Re: So thankful to have found this!

Post  Ellie on Thu Dec 09, 2010 1:36 am

That's interesting about that oil then. I have been tested for yeast, bacterial and urine infections at least once a week when I first was getting symptoms about a year and half ago. More recently I have been getting tested but it has been coming back fine with no infection, but I still feel irritated. She did do a swab and would know in about a week, but it will prob come back negative like it has lately. That is strange though, when she had my test results right there describing what I just told you.
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Re: So thankful to have found this!

Post  Sarah001 on Thu Dec 09, 2010 2:27 pm

It's typical behaviour from the medical profession unfortunately, they don't know what it is so they tell you to use things for yeast etc. A nurse at our practice told me to use Canesten cream which was a terrible idea because it burnt really badly and as I ddn't have a yeast infection was just making things worse. This is why us ladies have to research as much as we can and know our stuff when we see people so we don't get sent on wild goose chases.

Do you have other symptoms? Urinary symptoms or any other conditions?
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Re: So thankful to have found this!

Post  Sebby (Admin) on Thu Dec 09, 2010 7:46 pm


Hi Ellie and welcome..I do second Sarah's words of caution with the tea tree oil..I am actually quite allergic to it! I cannot use it anywhere..used it on my face once and was itchy and stinging! I would not recommend it at all for the vulval area!

I have not found creams to be soothing and find its best for me to use nothing down there! I only rinse the vulval area with water and use no soap or creams at all.

I would also recommmend not wearing knickers when you can as it prevents them from rubbing and its good to get some air to the area!

I would recommend asking to see a vulva specialist..ask your dr to refer you to a vulval clinic as well as a pain clinic to look at controlling the pain

Good luck and keep posting

Sebby xxx
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Re: So thankful to have found this!

Post  Ellie on Sat Dec 11, 2010 7:52 am

I appreciate your warnings about it! I have found also that creams haven't really helped much down there and have been more bothersome. Sad The only meds I use from time to time now is Boric Acid that was prescribed by my Urologist. I have taken it after sex to help prevent any further pain ( itching, soreness, causing an infection). Lately it has been sharp pain around the entrance and just hurting in general on and off. I might take your advice about no underwear though because I have noticed it to be a bother at times >.<

Oh and my doctor said if I'm still hurting (which we all know I will be) at the end of this month she will refer me to a vulval specialist. I am very excited to actually see someone that might point me in the right direction. Smile
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Re: So thankful to have found this!

Post  jules on Sat Dec 11, 2010 6:16 pm

Ellie,

Welcome. I live in Minnesota. I would love to talk w/ you about the docs here (St. Paul) and meds. I sent you a private message w/ my e-mail address. Just look at messages. Let me know if you can't get in. I have seen doctors in St. Paul.

Jules

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Looking for MN docor

Post  cosette51 on Sat Apr 09, 2011 7:28 pm

Hi!

Your post intrigued me. I've been suffering for 15 years jumping from specialist to specialist with no success, with each doctor managing to make things worse. I am in dire need of finding an amazing specialist. I live in St. Paul MN. Do you have someone you can recommend.

I'm a 30 year old who is now at the point of afraid of dating because it causes too much anxiety due to past relationships. I'm willing to try anything. I've done 15 different creams and oils, acupuncture, nerve pain medications that have made my whole mind numb, allergy testing... I need someone who is willing to be more aggressive who won't just stick me on anti-anxiety meds for 2 years telling me each month that we should wait another month to see if it starts to help. I want a family and children and my symptoms are so bad that sex is not a possibility in my life.

ANY HELP would be appreciated!!!!!

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Re: So thankful to have found this!

Post  noni on Sun Apr 10, 2011 12:11 am

Hey Cosette

I havent seen Ellie post here in a while....maybe if Sebby could give you her e-mail you would have better luck getting through to her.

Good luck

noni
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Re: So thankful to have found this!

Post  Sebby (Admin) on Mon Apr 11, 2011 7:18 pm


Hi there

In case Ellie has opted out of recieving emails when posts are replied to I have emailed her myself to let her know

I can't give out any members email addresses without their permisson

I will let you know if I get a reply

I will also contact Jules as she is on our Facebook group and she has also seen drs in St Pauls


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Re: So thankful to have found this!

Post  jules on Tue Apr 12, 2011 1:24 am

cosette51

hello, Sebby got a hold of me via facebook. i live in St. Paul and of course, have done EVERYTHING you have. there is one doctor at the University of MN. Women's health clinic who has experience in treating women w/ V. Her name is Dr. Jane Van Dis. It took me two months to get in w/ her. She was OK. I recently saw a doctor named Dr. Feldman at the U of M sexual health center. I did need a referral. I liked her a lot better than Dr. Van dis. I go to MAPS pain clinic in Midway. I have had the most luck there. I am on a few diff. meds that help w/. the pain. I also will be going back to a physical therapist at Sister Kinney in Bandana Sq. I'm going to send you my e-mail in your box so we can talk further. I'd love to chat.

jules

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Re: So thankful to have found this!

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