Vulvar Vestibulitis Support Network

the chronicle of broken Vaginas, what we've done to try and fix them, and how we plan to save the World

Ladies and VVS speak out! February 9, 2008

This is from NVA.org email that I received today:

****************

 

Dear NVA Friend,

 

Producers at The Oprah Winfrey Show are working on a possible upcoming show on vulvodynia.

 

If you are a single woman in your 20s or 30s who is worried that you may not be able to get married or have children in the future because of your vulvodynia and/or a non-Caucasian women of any age who is willing to be on the show, as soon as possible, send an email to chris@nva.org with the following information:

 

          Name

          Age

          Ethnicity

          Summary of your history with vulvodynia, i.e., When were you diagnosed?  How many doctors did you visit before receiving a correct diagnosis?  Have any treatments helped you?  Is your vulvodynia better, worse or the same?

          How has vulvodynia affected your ability to pursue a career and/or engage in social activities?  How has vulvodynia affected your sex life, marriage or relationships? 

          Contact information – phone number and email address

          Current photo (attachment)

          Statement that you give NVA permission to forward your contact information to producers at The Oprah Winfrey Show. 

 

Please try to limit your summary to 1-2 paragraphs. 

 

Thanks very much,

 

Chris

 

—-

 

Christin Veasley

Associate Executive Director

National Vulvodynia Association

PO Box 4491

Silver Spring, MD  20914

401-398-0830

chris@nva.org

 

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February Support Group A Gigantic Success! February 8, 2008

Filed under: NVVO Events,Support Group — Katie E @ 4:46 am

PORTLAND SUPPORT GROUP!

Second Meeting at In Other Words!!!!!!! ! Feb 6, 2008!!!!

 

OH MY GOODNESS! That was so awesome!

So, I took notes, but there were so many new people! So I just mostly wrote down the topics that we discussed.

The new women at this meeting were Alegra, Debby. Nedra, Kristen, and Kim. I think I’m leaving someone out too. Debby’s girlfriend Lisa was there too, she was so wonderful and supportive and cool!  And Melanie came back! Yay!!!!! And Me (Katie S.), Julie, and Katie E. A naturopath, Marlene, came who has a patient who she thinks has VVS, and she wanted to know more.

 Holy cats!

Here are my notes:

*Doctors

*What is the name of the male version of this condition?

*Introductions So many new people!!!!!!

*Foods:   -low oxalate diet, -anti-inflammatory diet, -low sugar, no processed foods, -aggravation from coffee, alcohol, vinegar, soy sauce

*Stress as an aggravator

*Fish oil and superfood helps Nedra a lot. Can get it online.

* Meds! Who is on what? And what have we tried?-let’s get a list of all of the drugs that we have all tried for this and compare notes!

*Surgeries

*Hormonal components (the pill? hormone replacement? other treatments involving hormones? how do these all relate?)

*Problem solving!

*Pads vs. tampons (which is the lesser of evils?)

*Chemicals! Yes or no? Chlorine? Body products? Soaps? Toilet paper?

*Endometriosis? Scaring in uterus and period accumulation on uterus walls. Also painful.

*What are our medical options?

*POWER IN NUMBERS!

*Doctors – who is good in Portland? Who knows about VVS?

*Partner meetings? Maybe one every few months? Where we can invite our partners.

*Melanie is awesome! She described the way to get what you need from the medical establishment… be the crazy lady on the phone! We can get what we want and need it we just demand for just treatment! And to have our questions answered!

This meeting was super empowering! There were so many of us in the room! We are all so strong! Our culmination of experiences and power is GIGANTIC!!!! !!!

 

February Support Group Meetings February 3, 2008

Filed under: NVVO Events,Support Group,Uncategorized — Katie E @ 1:24 am

It’s time for our February Support Group Meetings! Come check us out in Portland Hillsboro!

See our Calendar of Events for dates and times. See you there!

 

First Official Support Group Meeting A Success! January 3, 2008

Filed under: NVVO Events,Support Group — Katie E @ 3:18 pm

The first meeting of the… well, I’m not sure the name of it now… is it The Vagina Girls? Not sure. Anyhow, it was awesome!!!!! !!!!!!!!! !!!!!

Two new women came. It was wonderful. Julie and me got there early, and talked a bit about stuff and what the group would be like and wondered if anyone would come. And just as we started to discuss an article for Bitch Magazine… In came Kim.

She was really nice and cool and had learned about the group through the In Other Words newsletter. It was great to talk to her about her life and experiences. She had lots of questions, and since Julie and I have lots of combined experiences I think we helped her a bit. She’s thinking about seeing a doctor for the first time for this specific purpose, to see if there’s anything she can do about it. I hope we didn’t scare her with our stories. Especially me, I’m kind of forward about not having been helped by anything. But she seemed ok, and I hope she comes to the next meeting.

So the meeting format we had set up went to hell. But we just talked about our lives and experiences and stuff. And it was wonderful. There were 4 of us all together, so it seemed most appropriate to just talk. It was more personal. And, since it’s all about our vaginas (aka “Private Parts”) then everything that we say about our pain is personal, really. So it went really well. It’s so amazing to meet people who have the condition.

Melanie came in next. She’d found our website and emailed us a month or so ago. I am so forgetful of names, and didn’t realize it until later on, after talking to her a bit. She’s had problems off and on for quite a while. And a recent flare up. She just moved to town and has an appointment with Dr. LeClair soon. She is really nice and has some great ideas about how to deal with the disorder. She is so excited about the group! It’s so wonderful to talk to people who are also excited about this! It’ll be great to talk to her more too. She is excited about the International Women’s Day tabling, and other stuff like that. She seems really proactive and I am glad to have her on our team.

YAY!!!!!!! Next month is going to be so good! I put one of our fliers up with our meeting time on the bookstores bulletin board, and a few pamphlets on their resource shelf with the meeting time written on them. I left one of my zines with them to see if they want to carry it. And it always takes time for things to build up. I think next month there will be more people.

I came up with a new term for myself right before the meeting. I am a Vagina Nerd. For real!!! I get such a kick out of helping people and talking about my vagina with people who know what I’m talking about. Hooray!!!!!! !

Oh I am so excited! I am having trouble calming down after that meeting.

We will continue to have our Portland meetings on the first Wednesday of every month. The next meeting with be February 6 at 7 p.m. at In Other Words Bookstore.

Love, Katie S.

 

An Article on VVS Surgery November 13, 2007

 Note: This is the best article I’ve seen so far regarding this surgery, which I personally have had twice. I found it on careplace.com, where NVVO has recently formed an online group. Come join if you’d like!

– Julie

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What is Vestibulectomy?

Skinning vestibulectomy with perineoplasty and vaginal advancement is still a gold standard for women with vulvar vestibulitis.

This is a procedure, which removes the tender areas of the skin within the vestibule (the area between the lower vagina and just within the vulva). The amount of tissue removed is variable and depends on your symptoms and the surgeon in charge of your care. Sometimes only isolated areas of skin are removed from the lower part of the vestibule and in other women with extensive symptoms, larger areas of the vestibule can be removed up to the front of the vagina near the urethra, where you pass urine. Other procedures are less commonly performed and these include removal of the labial skin and the skin near the back passage. The procedures are usually carried out in hospital under general anaesthetic and take around 10-40 minutes, depending on the surgeon. Dissolvable stitches are usually used to cover the defects where the tender areas of skin were removed. After the operation you might be sent home either the same day or a day or so later. Obviously you need time to recover from this and this is variable — anything from 6-12 weeks. Your doctor may advise use of other treatments following surgery and this might include the use of creams (steroid creams, emollients), the use of vaginal dilators (to prevent scar tissue reforming) and a review by a pain management team or possibly a psychosexual counsellor.

 

NVVO at Siren Nation November 6, 2007

Filed under: NVVO Events — Katie E @ 3:44 am

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We tabled at Siren Nation on Sunday at the Kennedy School Community MarketPlace and had a blast! It was so much fun! We met a lot of cool people, and it was fun to finally get out there. We shared a table with the lovely ladies of Planned Parenthood. It was also a blast to say VAGINA all day long, and to watch people look at our sign and see the look on their face. “That’s a vagina, where do I look? Vagina, vagina . . . ” Like when guys are confronted with a bodacious set of fabulously displayed boobs, but they don’t want to make it obvious that they’re looking. But it was fabulous! We made lots of contacts and met lots of wonderful women! We were unfortunately without the great and wonderful Reverand Sarah who was battling chicken pox on the home front. Get ready to see more of the NVVO out and about in Portland!

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