From NVA – TV Show Looking for Interviewees! November 19, 2009

Producers at a national television show are looking to interview married women who’ve been diagnosed with vulvodynia in the last six months. They’d also like to hear from single or married women who experience chronic painful sex but haven’t been diagnosed. If you fit these criteria and are willing to share your story on national television, as soon as possible, please send an e-mail to chris@nva.org with the following information:

- Name

 - Age

- Are you married or single?

- If you’re married or in a relationship, is your partner willing to be interviewed? – What symptoms do you experience? When did they start?

- If applicable, what condition have you been diagnosed with? When did you receive a diagnosis? How many health care providers did you visit before being diagnosed?

- Have any treatments helped you? Is your vulvodynia better or worse? – How does vulvodynia or painful sex affect your life?

- How has the condition affected your sex life, marriage or relationships?

- Daytime phone number and e-mail address

- Current photo (please attach)

- Statement that you give NVA permission to forward your story and contact information to the show’s producers. Please try to limit your summary to 1-2 paragraphs.

Share Your Story with NVA! October 24, 2009

Are You Interested in Sharing Your Story? Drs. Andrew Goldstein, Caroline Pukall and Irwin Goldstein, along with medical journalist Debra Gordon, are writing a book for women who experience painful sex. If you are interested in being interviewed, please send an e-mail to Ms. Gordon (debra@debragordon.com) and answer the following questions. Your name will be kept confidential. Briefly describe your personal experience. – When did your pain begin? – What symptoms did you have? How does your pain feel now? – When did you seek help? – How many doctors did you visit? What did they tell you? – How were you finally diagnosed? How has the pain affected your relationship with your partner(s)? What treatments have you tried and how well have they worked? What advice would you give to other women who are experiencing painful sex?

Vulvodynia on 20/20 !! August 6, 2009

ABC’s 20/20 Features Segment on Sexual Pain, Vulvodynia Friday, August 7, 10pm ET Be sure to tune into 20/20 Friday night at 10pm ET, when Dr. Timothy Johnson, ABC News’ Chief Medical Editor, will discuss the diagnosis and treatment of sexual pain and vulvodynia with Andrew Goldstein, MD, and Amy Stein, MPT. Dr. Goldstein directs the Center for Vulvovaginal Disorders in Washington, DC, and New York City. Ms. Stein, a New York-based physical therapist, specializes in the treatment of pelvic and urogynecological pain disorders. The segment will also feature the stories of two women with sexual pain, as well as an interview with Christin Veasley, NVA’s associate executive director, and her husband Melvin. To check your local listings, visit: http://www.tvguide. com/Listings/ default.aspx.

New Course from NVA June 21, 2009

The NVA has a new online course about VVS! Pretty cool!

http://learnpatient.nva.org/

Everything You Need to Know about Vulvodynia covers topics suchas coping with chronic pain, relationships, work, and more!

And it’s FREE!

Pregnancy and VVS May 22, 2009

For a long time growing up I knew I wanted to have a family. And then sometime in college I wasn’t so sure. Then I got VVS. Now I really wasn’t sure. Then my VVS went away. Are you frickin kidding me? I had no idea.

I read this article on OBGYN.net:

Does pregnancy worsen vulvodynia either during pregnancy or after delivery? There are no studies on this subject. In an issue of the NVA News, Dr. Marinoff states that about 1/3 of his patients improve, 1/3 get worse and 1/3 stay about the same. The growing fetus definitely places more pressure on the pudendal nerve and thus may worsen vulvodynia of the pudendal neuralgia sub-type. There is also more pressure on the bladder and urethra, which may aggravate urinary symptoms. However, there is an increase in circulating steroid hormones during pregnancy, including estrogen and cortisol. This may cause some cases of inflammatory vestibulitis to improve. ⁽³⁴⁾

Dr. Marinoff notes that some women have their first onset of vulvodynia during or after a pregnancy. In that case, he believes that the vulvodynia is most likely to recur with subsequent pregnancies. ⁽³⁴⁾

The Delivery and Post-partum Period:
In some cases improvement is permanent; in others the woman returns to her previous level of pain and function within about 6 months after the delivery. Unfortunately, there is no good way to predict who will improve with pregnancy and who will not or who will become worse.

So really, if I get pregnant, I have pretty much a 50/50 shot of my VVS coming back. I wrestled with this for a long time, and still do to an extent. I had a period where I had absolutely decided that I would not get pregnant. If we wanted kids that badly we could adopt. But my husband is not that keen on adoption, and I have always really wanted to be pregnant and experience that part of the life cycle. Even when I didn’t want to have kids, I still wanted to be pregnant.

So after much deliberation, my husband and I have decided to start trying. We’ve talked about it as much as we can, but you can’t plan for something like that. We’re aware of the risks and will cross that bridge if it appears. (This is all hinging on the fact that we can actually get pregnant and are not infertile.) I guess for a long time I thought I should be “safe” about it. Do the easy thing. But I’ve done that all my life. Save for 2 years of painful sex, my life has been mundane. Some people join the peace corps, others get addicted, I am going to try and have a baby with the possible consequence of having a broken vagina.

I’ll keep you posted, for now there’s nothing.

~Katie E

Wise Words and Hard Lessons May 5, 2009

We hear it a lot, but it always helps to hear it as much as possible. It doesn’t matter what you look like! You are you, your genetics are totally unique (unless you are a twin), and that is ok!

Greg Everett, owner of Catalyst Athletics, has this to say about appearance:

“A convenient and unavoidable by-product of fitness is improved appearance. Interestingly enough, the inverse is not true. That is, if we train specifically for improved appearance, we may achieve it (although rarely is this the case); however, if we train for fitness, not only do we improve appearance, but we also improve our ability to function well in both daily tasks and our chosen recreation.”

Train for you. Train for health, train for fitness, train for your goals. The rest will fall into place. This is a hard lesson to learn, and something I have struggled with myself. But when you really start to understand it, the liberation is fantabulous.

[photo by AmUniverse]

That Time of the Month March 23, 2009

You’re bloated and crampy and feeling a little off. It must be that time of the month!

So I get on the scale and I look down and – OMG I JUST GAINED FIVE POUNDS!?!?! What did I eat, where did I go wrong? Did I not exercise enough?

You’ve very likely experienced this scenario before. And although you shouldn’t be paying attention to the scale anyway (we’ll leave that for another discussion) you probably are. It’s become very second nature to really hone in on that magic number the scale gives you. And for the purposes of your monthly cycle, the scale is wrong. Well . . . not wrong, but it doesn’t tell the whole truth.

Rochelle and I have been trying this ourselves for the past 6 months or so, and you can play at home. About three days before your period starts your body is in full baby-making gear, so it’s storing fat every which way. Hence, the gaining of the +/-5 pounds. And then two or three days into your cycle, once it is clear that there will be no babies, your body magically lets it all go and you return to normal. This may vary from woman to woman. You may find you have a huge jump or none at all. But if you are paying attention to the magic number, it’s good to look at why it might be doing what it’s doing. Also, It’s important to remember this for one big reason. PMS. You are already emotional to some degree, so it does not help to see that scale jump when you’ve been working really hard.

You may or may not notice differences in your vaginal pain during your cycle. I’d be interested to hear if anyone has every noticed a difference.

But now you can just breath, relax, and be happy in the knowledge that it’s just your body doing it’s job!

Thunder Thighs March 15, 2009

I have
THUNDER THIGHS
and that’s a compliment
because they are strong
and toned
and muscular
and though the are unwelcome
in the petite section
they are cheered on in marathons.
Fifty years from now
I’ll bounce a grandchild on my thunder thighs
and then I’ll go out for a run.

(the second of the two Nike ads I saved from a while ago)

Rain March 2, 2009

We had a great meeting today at Pied Cow. But it’s been rainy and unpleasant, and everyone’s getting anxious for spring. I thought this advice from my friend might be good timing. Especially if you’re not feeling happy about your vagina.

From my friend Rochelle ~

Looking out my window and seeing the grey ceiling is discouraging.  Being a California girl I miss the blue skies of winter and the high clouds on a cloudy day.  The Pacific NorthWest offers a perma-ceiling, with very little cloud break, which could lead to feelings of hopelessness, lethargy, lack of motivation, or just feelings of being sad.

We have the power to combat these feelings, and we must for our winters are long in the Portland area.  The first is to set goals surrounding your activity.  Don’t just work out to be thin, there must be a specific reason, a tangible, achievable goal.  I like to set mini-goals because the feeling of success never is tiring.

Second, find some down time, a prayer and meditation room, a coffee ritual, a time to sit and read or stare out at the perma-ceiling and count all of the things you are thankful for because it does rain so much here.

Third, women need to spend time with friends talking and sharing.  We are wired to have deep sensitive conversations, and not deep funny conversations.  Call up a friend, suggest putting on layers of clothing and go for a refreshing hike, or walk in the rain or snow, or the blistering East wind.

Aside from these  fun ideas it is important to take some natural remedies to combat depression, striking it down before it strikes you down.
1)    no refined food products
2)    limit alcohol intake
3)    take cold showers (or finish your shower with a cold rinse)
4)    take vitamin D3 supplements
5)    take emergen-C (low sugar version)
6)    get enough omegas (fish oil)

As the long winter stretches on there will be more writings on depression.

March Meeting This Sunday February 28, 2009

Hey Portlanders! We’ll be at the Pied Cow on SE Belmont at 2pm on Sunday. Come play with us!

See you there!