Earlier this month I wrote that we were overwhelmed by the interest in participating in an online discussion on sexual relationships — a conversation that will help to update the relationships chapter in “Our Bodies, Ourselves.” I just wanted to let folks know that participants will be notified this weekend, and the conversation will start next week.

We received hundreds of emails and learned a great deal from everyone’s submissions — including that there is a need for a forum for this kind of conversation. We’ll keep thinking about how we might be able to make that happen. Meanwhile, please keep an eye on this space for future announcements concerning stories wanted for the 2011 edition. Thanks!

Wow.

Last week we asked for your help in updating the sexual relationships section in the next edition of “Our Bodies, Ourselves” (Simon & Schuster, 2011). We had no idea what response we would receive to an invitation to join an online discussion that touches on many personal issues.

Would people be interested? Would they be willing to share?

The short answer is an overwhelming “Yes.”

The response has been amazing — we’ve received hundreds of submissions, so many that we’re going to move the deadline up to Wednesday, Feb. 3.

But! We will need input on other chapters in the coming months. We probably won’t be able to do another online discussion, but we’ll ask for specific stories and anecdotes to help personalize and add insight to the topics covered throughout the book.

We’ve flagged some of the relationship submissions for this purpose. So many of you were incredibly forthcoming about other aspects of your lives — as mothers, as survivors of sexual and domestic abuse, as feminists taking on sexism — and we may get in touch with you for permission to include your perspective in another section.

The editorial team working on the 2011 edition has been so moved by the generosity and support of OBOS readers. A big thank you from all of us to all of you!

Feel free to re-post this call on blogs, listservs and newsletters. If you have any questions, you can contact me directly or leave a comment below.

Our Bodies Ourselves is seeking up to two dozen women to participate in an online discussion on sexual relationships.

Stories and comments may be used anonymously in the next edition of “Our Bodies, Ourselves,” which will be published in 2011 by Simon & Schuster.

We are seeking the experience and wisdom of heterosexual, lesbian, bisexual and queer women. Perspectives from single women are encouraged, and you may define relationship as it applies to you, from monogamy to multiple partners. We are committed to including women of color, women with disabilities, trans women and women of many ages and backgrounds.

In the words of the brilliant anthology “Yes Means Yes,” how can we consistently engage in more positive experiences? What issues deserve more attention? And how do we address social inequities and violence against women? These are some of the guiding questions that will help us to update the relationships section in “Our Bodies, Ourselves.”

The conversation will start Sunday, Feb. 14 (yes, Valentine’s Day) and stay open through Friday, March 12.

Participants will be invited to answer relevant questions (see sample below) and build on the responses of other participants. We’ll use a private Google site to post questions and responses.

Personal stories and reflections are welcomed, along with updated research and media resources. While we intend to use some of the stories and experiences in the book, names will not be published.

We hope the open process* will spark robust discussion. We expect new questions to arise that challenge us to re-work this section even more.

If you would like to participate in this conversation, please e-mail OBOS editorial team member Wendy Sanford: wsanford@bwhbc.org

In your email, please tell us about yourself and what you would bring to the conversation. We need to hear from you by Feb. 5 and will let you know soon thereafter about participation. Thanks for considering this!

*We have thought a great deal about privacy. If you want to share a story or information, but do not want to participate in the private Google site discussion, please indicate that in your email. We may send you questions that you can answer on your own.

* * * * * *
Sample Questions
Participants can suggest other questions

How do you define — and express — intimacy?

What are you looking for in a relationship? What kind of relationship do you seek at this time in your life — monogamous, non-monogamous, long-term, short-term, one partner or more than one? How is this related to being a woman or to your gender or sexual identity in the society(ies) and culture(s) to which you belong?

What do you enjoy most about being sexual?

What are your experiences in a relationship that spans differences such as class, race, age, physical or mental ability, chronic illness, other?

How does it affect your relationships when you are with someone whom the world gives more or less power than you have — because of race, income, gender or disability?

What role has love played or not played in your relationships?

Describe a time when you realized that despite the romantic images you may have grown up with, a relationship you intended to stay in over time was going to be work.

What are some obstacles that can get in the way of our relationships? What images or stereotypes in popular culture add to the difficulties?

What helps? What books or other resources do you trust to speak honestly about relationships?

What is it like to be in a relationship with a man/with a woman when you don’t like some or all of your own body?

How have specific acts of sexual violence against you, or general societal/cultural acceptance of violence against women or LGBT people, affected your intimate sexual relationships?

If you have been in intimate sexual relationships with both women and men, are there special dynamics and challenges that you have noticed in each?

If you have experience with online dating networks, what would you want someone to know who was just starting to explore that venue? What are the safety issues?

We interrupt this blog to bring you an urgent message: Our Bodies Ourselves needs your help.

This is not your ordinary holiday fundraising campaign. We need to raise $50,000 by Dec. 31 to maintain staffing and continue our program work at current levels.

Here’s the deal. OBOS has a big name but a tiny budget. Book sales account for only 6 percent of our budget (yes: 6 percent!). We’re a nonprofit that depends on donors and grants to make up the other lean 94 percent. And this year has been hard.

If you’re a regular Our Bodies Our Blog reader, you know we do our best to evaluate the latest medical research and studies (and provide tips so you can, too), explain ongoing political negotiations over women’s health and women’s bodies, and keep you informed on everything from the new, improved female condom to the benefits and harms of osteoporosis medications. And we provide a venue for guest writers to share their organization’s work and personal stories.

What you might not know is that OBOS is a tiny organization with a full-time staff of only six (and a few part-timers like us) that works in partnership with other organizations to create change around the world. Here’s what we’ve been up to lately:

- We are in the midst of writing the 9th edition of “Our Bodies, Ourselves,” scheduled for publication in the fall of 2011.

- We work with women’s groups around the world who translate and adapt “Our Bodies, Ourselves.” The book is currently in 24 languages! 24!

- A group we work with in Japan coined new, positive words for female reproductive organs because there weren’t any. These words are now in the Japanese dictionary.

- Another group in Nepal worked to get women’s reproductive rights included in the country’s new constitution. We influenced a constitution!

- We’re creating a 15-minute documentary to send to law makers in Massachusetts to promote the creation of a board of registration in midwifery.

- We’re working to promote the health care reform public option and to ensure that abortion is covered as a medical procedure.

- OBOS staff, especially its tireless co-founder Judy Norsigian, speaks to dozens of groups every year and testifies at political hearings on issues such as the safety of breast implants, problems with direct-to-consumer advertising of prescription drugs, the well-documented efforts of midwifery care and more.

- We provide an unbiased, independent, feminist perspective that is all to often missing from healthcare debates.

- We created the Women’s Health Heroes awards in 2009, inducting 20 women nominated by readers like you. And we’re gearing up to honor more heroes in 2010.

Our Bodies Ourselves has always been there when you needed us most. And now we need you.

We can continue this work with your support. If we can get 1,000 people to make donations of $50 each, we’ll reach our goal faster than you can say, “Women rock!”

So please make a donation today (it’s tax deductible!). Share this news with your friends and networks. And enjoy the warm fuzzies you get from knowing you did a good thing — and from knowing that OBOS will be there to answer your health questions and to be an advocate for you and your family.

Thank you for your support!

- Rachel & Christine

A recent Time magazine story looks at the decade-long search for a drug to cure women with low sexual desire — a so-called female Viagra. A German pharmaceutical company thinks it’s on the right track with flibanserin, a drug originally developed as an antidepressant (it didn’t work for its intended purpose). Filbanserin is undergoing clinical trials to treat hypoactive sexual desire disorder (HSDD).

Our own Judy Norsigian is quoted in Time, expressing caution:

Certainly, there may be women who will do better after taking flibanserin, says Judy Norsigian, executive director of the women’s health advocacy Our Bodies Ourselves, based in Cambridge, Mass. But she thinks the diagnosis of HSDD unnecessarily medicalizes women’s sexual lives. Attempting to treat low libido with a pill ignores the fact that many women’s level of desire is deeply affected by everyday life stress and interpersonal relationships. Add to that a cultural milieu that at once promotes shame and ignorance about women’s sexuality while wildly inflating their expectations for sex.

In many cases, says Norsigian, the proper solution to a lack of sexual desire would involve a number of non-drug approaches, such as therapy, mind-body techniques and getting partners involved in the solution. “That could be equally successful while at the same time not exposing women to the [potential] long-term adverse effects of drugs,” says Norsigian, who suggests testing drugs like flibanserin against drug-free therapies. “Moreover, the non-medication approaches often address root causes for lack of libido and thus reflect a prevention approach that is usually much wiser.”

During a recent event hosted by the Vanderbilt University School of Nursing’s Midwifery Program, Norsigian raised similar questions about whether women are receiving the best and safest treatments. She also discussed examples of how mixed, inaccurate or incomplete media coverage can make it difficult for women to navigate their health options and to understand the risks involved with some procedures. The Reporter, Vanderbilt Medical Center’s weekly newspaper, covered Norsigian’s talk.

OBOS co-founder and executive director Judy Norsigian has been in Nashville, TN, for the weekend, and this morning she was a guest on  Liberadio(!), Mary Mancini and Freddie O’Connell’s local political radio show.

Topics covered include the history of the organization and the need for its work (including the landmark book and newer initiatives), the PRIM&R conference Judy attended while in town, Senator Kennedy, health care reform, media portrayals of health reform proposals, the Stupak amendment, abortion, age discrimination, social justice and diversity, among others.

The show is archived online at http://tinyurl.com/yhadu9s (you may need to download RealPlayer to listen). Judy’s segment starts at about 1:32 of the 2-hour episode. No transcript is available, but you can get some quick text notes on the segment via Liberadio(!)’s Twitter updates from this morning.

Thanks to Liberadio(!), and to everyone who came out to the OBOS house party last night!

In our second self-referential moment of the week, I wanted to point to several posts by OBOS blogger Rachel Walden that are featured in this month’s MedLib’s Round, a monthly blog carnival that highlights some of the best writing on medical librarianship.

From the carnival intro:

A 2008 study by the Center for Medicine in the Public Interest found that searching for health information online can be dangerous, with search engine results pages dominated by websites that appeared legitimate but had zero medical authority [1]. Our hope is that this edition of MedLib’s Round — themed Finding credible health information online— will offer ideas and advice to help people use the Web more effectively to search and find credible health information.

This post, “Tips for Savvy Medical Web Surfing” – A Critique, from Rachel’s own site, Women’s Health News, reviews  a CNN article on how to conduct online medical searches.

Can You Trust That Health Website?, published here, explains how to evaluate the reliability of health information websites. In Understanding Medical Research, also published at OBOB, Rachel offers tips on how to make sense of complex (and sometimes contradictory) studies and what it all means for your health.

Visit Highlight Health for more great selections from this month’s carnival, and congrats to Rachel!

We’ve heard from several readers who caught a glimpse of “Our Bodies, Ourselves” on a recent episode of “Gossip Girl.” (No, not that episode.)

We tried to embed the scene, but permissions just won’t let it happen. Fortunately Television Without Pity has the full (really full) re-cap, including the dialogue referencing OBOS.  New York magazine was as surprised as we were to find OBOS included …

Interested in learning more about Our Bodies Ourselves and the beginning of a worldwide movement for women’s health? Judy Norsigian, OBOS co-founder and executive director, is going to be on WBAI radio (99.5 FM in New York) this Thursday (Nov. 5) from 10 to 11a.m. EST. You can stream the interview at www.wbai.org.

Norsigian’s appearance is part of a special two-hour edition of the Joy of Resistance, WBAI’s multicultural feminist radio show. Expect her to weigh in on health care reform, the state of maternity care and many other urgent issues.

Joy of Resistance will offer copies of “Our Bodies, Ourselves” signed by Norsigian as a fundraiser premium, along with two award-winning documentary DVD’s: “Absolutely Safe” by Carol Leyva, which examines the safety of breast implants, and “Killing Us Softly: Advertising’s Image of Women-3” by Jean Kilbourne, a look at the pressures on today’s women to conform to commercial standards of beauty.

WBAI is part of the Pacifica Radio Network, which includes five radio stations (the other four are in Berkeley, Los Angeles, Houston, and Washington, D.C.) and more than 50 affiliate stations.

A new, freely available, open-access journal that launched this month reflects a position Our Bodies Ourselves has long held: Healthcare is better, and people are healthier and more empowered, when individuals are informed and can actively participate in their own care.

The Journal of Participatory Medicine, launched at last week’s Connected Health Symposium in Boston, will publish online peer-reviewed articles that “explore the extent to which shared decision-making in health care, and deep patient engagement, affect outcomes.” The inaugural issue includes articles from all stakeholders, including patients, healthcare providers, payers, and others.

The journal’s significance is underscored by the fact that current or former editors of three of the most prominent medical journals – JAMA, BMJ, and the Annals of Family Medicine – also contributed to the first issue. As Amy Romano at Science & Sensibility points out, even the journal’s peer review process is participatory and values the input of all stakeholders, especially patients themselves.

The journal is being published by the relatively new Society for Participatory Medicine. The organization also has a blog, e-patients.net, which focuses on and includes stories from patients becoming informed, connecting with other patients, finding support, and exploring potential treatments for their healthcare concerns.

The existence of this organization and its publications reflect a growing trend toward patient involvement in health care that has been inspired and enabled by the internet. The Pew Internet and American Life Project released a report earlier this year indicating that 61 percent of American adults look online for health information, and that “six in ten e-patients … say their most recent search had an impact, mostly minor, on their own health or the way they care for someone else.”

More than half said information they found online lead them to ask their physician new questions or to get a second opinion on their care.

The internet is also enabling access to personal health records and new ways of collecting and sharing health data. The Society and the Journal will promote efforts to encourage these developments while protecting patient confidentiality.

As one physician wrote of the e-patient phenomenon in 2008:

Patients want information, ideally tailored to their needs. They want to discuss this with their physicians without being shooed away, and would appreciate getting pointers. They even want access to their test results and medical records. Although many physicians feel threatened by all this, engaging the patient as a partner in her own care can be quite gratifying, improves patient satisfaction, and may even lead to better outcomes.

As an organization that has long held that women can become their own health experts and that women, as informed health consumers, are catalysts for social change, we agree.

The matter of how much personal information to share with patients comes up frequently for practitioners, and there are times when it can be most helpful. But it is a difficult decision.

In an essay online at WBUR public radio, Our Bodies Ourselves board member Anne Brewster, an internist who works at Massachusetts General Hospital, discusses her decision to disclose something about herself to a 30-year-old patient diagnosed with multiple sclerosis, an autoimmune disease of the central nervous system. When Brewster calls to give her the news, she shares that she has the same disease:

In revealing personal information, physician to patient, I had crossed a line. I did so intentionally, in an effort to bring compassion to our exchange, but still today, I cannot shake the slightly uneasy feeling that I have somehow breached medical etiquette.

When we enter medical school and don our white coats for the first time, the division between doctor and patient begins – “us” and “them.” We start our education by dissecting a human corpse, and in so doing, learn early on to separate the body from the person. We master the parts — the Ischial Tuberosity, the Latissimus Dorsi, the Sternocleidomastoid, the Flexor Digitorum Longus. We think about lymphatic drainage, muscle insertions, arterial supply, and nerve innervation. We divide the body into sections: distal and proximal, dorsal and ventral, lateral and medial.

We go on to study disease processes — so many that our heads spin. Eventually, we begin to take care of patients and are encouraged to remember the person behind the disease. We are instructed to make eye contact, to sit on the edge of the bed when we speak to a hospitalized patient, and to use touch when appropriate, by holding a hand or squeezing a shoulder. Empathy is cultivated, but at the same time, explicitly and implicitly, we are taught to keep an emotional distance. Sharing personal information is taboo.

Part of this is for survival. None of us could bear to feel all of the pain, the fear, the loss that we encounter daily in medical practice. If we allowed ourselves to realize that we are vulnerable to all of the diseases we treat, all the time, we could not function. And part of this is about being a good doctor. Emotions can cloud judgment, and the preservation of professional boundaries is essential to quality care.

But true objectivity is a myth.

Continue reading this excellent essay.

The latest newsletter from Women and Their Bodies (WTB), an Israeli-Palestinian initiative that is adapting “Our Bodies, Ourselves” into Hebrew and Arabic (see our previous post), includes this update:

We continue to undergo the massive and vital task of creating local and culturally adapted Hebrew and Arabic editions of ‘Our Bodies, Ourselves’ (OBOS). Women and Their Bodies is fortunate to have generous an unbelievable network of over 300 devoted women volunteers giving of their time and their skills towards the writing, editing, research, etc. of the book.

We are women from a wide spectrum of Israeli society, including religious, progressive and secular women of the Muslim, Christian and Jewish communities around the country. We come from a wide range of backgrounds and specializations: psychologists, facilitators of women’s groups, gynecologists, midwives, sexologists, gender and social studies researchers and more. We are all activists, each in our own way, promoting women’s equality, justice and human rights.

After 4 years of hard work, out of the 32, 20 Hebrew chapters are complete and 12 in various stages of preparation. 10 Arabic chapters are complete and 22 in various stages of preparation. The book in Hebrew shall be published in June 2010. Initially we intended to publish the Arabic edition a year after that. Instead, we have decided to publish the Arabic in three parts. The first part, including 10 chapters shall also be published in June 2010. We feel that it is essential to get this information out in the first part due to the general lack of accessibility to information of this kind within the Palestinian community.

WTB’s online information and action center, http://wtb.org.il/, is scheduled to go live this month. It too, will feature information in both Hebrew and Arabic.

Want to help support this project? WTB is raising support for the book by offering “social stock” in their organization. Your investment of $150 includes a copy of the Hebrew edition of “Our Bodies Ourselves” and printed acknowledgement of your investment in the the book. Secure online donations can be made here. Tax deductible donations can be made by check, payable to: The New Israel Fund. On the memo line, please write “for Women and Their Bodies” and the NIF identification number, 5459. Mail checks to NIF / P.O.Box 91588 / Washington, D.C. 20090-1588

Plus: Check out other OBOS projects underway in China, India and Nigeria, among other places.

As an Our Bodies, Our Blog reader, you know that the specific interests of women and health are intricately connected to broader issues of social change. For just this reason, OBOS has been a proud, longtime member of Community Works, a cooperative fundraising effort involving more than 30 Massachussetts social justice organizations.

Community Works is currently offering a special incentive that I wanted to share with our Massachusetts friends. You might be able to directly support OBOS’s work without even making a donation yourself.

Community Works receives donations largely through the convenience of payroll deductions at 52 private, public and nonprofit employers in the greater Boston area, representing more than120,000 employees. Such payroll deduction contributions to Community Works help to support the work of member organizations such as OBOS.

Any member group that enlists a new workplace that will offer Community Works as one of its employee charitable giving options will receive half of the proceeds of the first year’s campaign. So if you help OBOS enlist a new employer, you will help raise valuable funds for OBOS in the coming year.

The set-up is simple: Visit the Community Works website to see where campaigns are already underway. Then contact your friends in workplaces that don’t already offer Community Works as a charitable option. If you know anyone who can help bring Community Works to their workplace, please email me: judy (at) bwhbc (dot) org

If we are successful in securing the workplace you suggest, OBOS co-founders (myself included) will send inscribed copies of any of OBOS’s books to the person or institution of your choice.

This is a wonderful opportunity for those of you who value what OBOS does to provide concrete support to both our organization and the other social change groups that are part of Community Works. Whether working to address environmental justice, sexual assault, youth and community violence or health care access, each Community Works member operates within a framework of equality, justice and peace.

Remember, it takes a village and more to sustain the work of public interest organizations like ours. Take a look at the current employer partner list and let us know who’s missing. Your help with this effort is much appreciated!

Judy Norsigian is executive director of Our Bodies Ourselves.

Last year, in an article published at Our Bodies Ourselves, freelance writer and registered nurse Jen Dozer wrote about the emotional effects of pregnancy after infertility or loss. She later spoke with Our Bodies Our Blog about her own experience with infertility and the anxiety and distrust she felt toward her own body when she did become pregnant.

After Dozer’s article was published, she asked readers of her blog, Mrs. Spock, to share their own stories about infertility and pregnancy loss. Nine of those stories are now published at Our Bodies Ourselves.

With unflinching honesty, the writers describe what it’s like to undergo test after test; to commit to infertilty drugs only to see hopes rise and fall with each cycle; or to conceive after infertility, with no clear understanding of why the pregnancy suddenly happened — and whether it will last.

Kathleen O’Grady sums up the anguish that comes with realizing a pregnancy cannot be willed by love and desire alone: ”Pregnancy was not supposed to happen like this — with the cold medical hands of specialists leading me through an intricate web of possible bodily malfunctions.  But through a spontaneous moment of grace, a sacred orgasmic moment when one plus one makes three.”

In another story, the writer walks readers through her discovery, at her 20-week scan, that her son no longer has a heartbeat; his sister still does.  ”I began to think about the flu I had come down with last week and the antibiotics I had taken for the resulting sinus and ear infection, the accidental diet Sprite I had, the Tylenol I had taken to help with the misery of the flu symptoms. I thought of all the things that I thought I had done wrong and asked Ajay, “Did I do this? Is this my fault? [...] How is this happening?”

Read their stories here. Personal experiences of loss and doubt are rarely included in books about pregnancy. But they are essential. As Dozer writes at her own site:

I’ve often thought that birth, to us in the infertility trenches, is more denouement than climax, because we do all our laboring on the front end. All of our blood, sweat, and tears, all of our anticipation, all of our hard work, is spent on conceiving our children, or navigating the adoption process. And just like a labor, no two experiences are alike. I liked the idea of sharing our stories of infertility and loss, and pulling back the veil on the many paths to parenthood- or to childfree living as the case may be. [...]

It is only by sharing our stories that the ten percent of us that have “tubeless” or “unicornate” or “incompetent cervix” or “anovulatory” stamped on our foreheads look more like the daughters, sisters, friends, and neighbors we are, than the kooky Octomom looking for a reality show deal the fertile world thinks we are.

It is with heavy heart that so many of us receive the news of Sen. Ted Kennedy’s death. Although I have been anticipating this moment for weeks now, the reality is still such a shock.

I know that for so many women’s health activists, Kennedy’s passing will only strengthen our resolve to continue his valiant fight for meaningful health care reform. I have started writing letters to several more liberal Republicans, beseeching them to honor his memory by breaking ranks with the Republican Party and its current efforts to eliminate the public health insurance option from any bill coming out of Congress.

As a tribute to this tireless advocate for the millions who had no political power, each of us can think of one gesture we can carry out in the coming weeks.

In 2002, I testified before the Senate HELP Committee on the topic of somatic cell nuclear transfer (which involves creating cloned human embryos to serve as a source of embryonic stem cells for scientific research; it poses health risks for women who provide eggs for such research). Kennedy, who was co-chairing that particular HELP Committee hearing, was ever so gracious, even though I knew he did not agree with the position of Our Bodies Ourselves at that time.

And when my late husband, Irving Kenneth Zola, died in 1994, shortly after he was appointed to the National Council on Disability, Kennedy’s remarks at a special memorial service for Irv in Washington, D.C., brought tears to everyone’s eyes. His compassion, tenacity and commitment to the needs of all remain an inspiration to me both personally and professionally.

We will miss you terribly, Ted, and we will all fight even harder for the causes you championed for more decades than some of us have even been alive.

Judy Norsigian is executive director of Our Bodies Ourselves.