The Perfect Vagina?

Back in 2008, Lisa Rogers and Heather Leach noticed an uptick in vaginal rejuvenation surgeries. Why were women interested in cosmetic surgery on their vaginas? Seeking to understand, they made a documentary entitled "The Perfect Vagina," documenting all sorts of interactions women had with their genitals to either "beautify" or fix them in some way. We recently rediscovered the documentary, and we encourage you to take a look at the trailer here. The scene in the trailer features Jamie McCartney's "Great Wall of Vagina" sculpture, which features plaster casts of vulvas of all kinds of women. McCartney made it so women could see how different and beautiful they all are, and how much they don't need surgery to feel that way. We agree with him :)



More Than Skin-Deep: The Science of Itching


Many of our patients suffer from itching which is often neuropathic in nature and not dermatologic. This is an excellent article in today's New York Times which discusses new research into what is happening on a cellular and neuropathic level in order to find more effective and targeted therapies. So if you have itching in your pelvic region or any other part of your body, don't let your doctor dismiss or minimize your concerns. It's important to find the etiology of your itching so that it can be effectively treated with the right medication.




Male Pelvic Pain in The New York Times


Thank you so much to Denise Grady for her insightful article, "Men With Pelvic Pain Find A Path to Treatment Blocked by a Gynecology Board," on male pelvic pain in The New York Times yesterday. If it's possible, male pelvic pain gets even less attention than female pelvic pain, not to mention that OB-GYNs have gone back and forth on whether they're allowed to treat men with pelvic pain. Given that information, it was great to see an article highlighting it nationally. As this article describes, so many men have trouble finding a doctor to treat them. We're glad to know that some have found what they need though, and hope that with the right changes with the ABOG, more will be able to be treated for pelvic pain in the future.


Nancy in ICA Update!

We are so pleased to share that Nancy has been interviewed for the most recent issue of ICA Update, the publication of the Interstitial Cystitis Association for current IC issues, treatment and lifestyle. Take a look below at the interview, by Mark Toner. Thank you so much to Mark and ICA Update for including us!




The Doctors and Interstitial Cystitis


National TV is finally taking pelvic pain seriously in the recent segment on the The Doctors' program on Interstitial Cystitis/Painful Bladder Syndrome (http://www.thedoctorstv.com/videolib/init/9903). Anyone who suffers from PBS can refer to this informative piece when seeking help form a healthcare professional. Kudos to The Doctors!


Explaining Painful Sex with Food



Thankfully, international efforts are being made to educate women and healthcare professionals about vulvovaginal pain. The recently established Women 4Real on the UK is creatively addressing the lack of awareness about pelvic pain through many efforts including the video:

“Painful Sex vs. ‘Normal’ Sex: The Differences Explained With Food”


From their press release:

A new short film highlights a burning issue and offers a red-hot response to a viral video phenomenon that’s had 9 million views.


Sabine Tyrvainen, a health psychologist and Executive Director of Women4Real says: “Women4Real is an innovative new health and communications consultancy with a focus on women’s issues. Vulvodynia is often misdiagnosed and misunderstood and can have a detrimental effect on women’s self-esteem, quality of life and relationships. We want to bring about a shift in cultural attitudes and expectations around sexuality and to open up new perspectives and conversations on what’s real for women in terms of their sexual experience.”


Writer, broadcaster and PR consultant Sally Turner, who is Creative Director of Women4Real says: “We loved the concept of juxtaposing sexual health with porn and pleasure and using humour to engage a wider audience with a serious issue. Not all sexual pain is the ‘delicious’ Fifty Shades kind and we wanted to make a film that raises awareness of sexual pain in a different context. We want to help support women with vulvodynia, who are finding sex painful, to make a positive journey from ‘Ouch!’ to ‘Ooooh’.”


For an FAQ about this project please visit www.women4real.com, where you can also view the film. Women4Real is improving patient care for women with vulvodynia by developing an expert network, a CPD programme for GPs and health professionals, a mindfulness-based self-care course for women, new research and treatment options and further arts and media projects.


Guest Post: Six Tips for Dealing with Bacteria Vaginosis


By Anonymous

I have been sexually active for over eight years. I have also been dealing with pain during sex for eight years. It's come and gone, been unbearable and been tolerable. It changes with the seasons, the days and even my mood.

It took me years of doctor visits, confusion and tears through penetration to finally figure out what could be causing all of my problems. I was and continue to be a sufferer of chronic bacteria vaginosis--an imbalance in my pH that ultimately leads to infections and discomfort. CDC.gov names Bacteria Vaginosis (or BV) as the most common vaginal infection in women. However, it still goes largely unknown despite its popularity. It can present many similar yeast infection symptoms or show no signs at all. It can only be diagnosed by a doctor and requires prescription medicine to knock it out. However, symptoms, when present, can include painful sex accompanied by a burning feeling, itching, vaginal discharge, or a fishy smell.

Most women will get BV at least once in their lifetime. While many of us have bodies that can beat it without us ever knowing, there are some of us like myself and few other women I know, who live with it all the time. In my years of experience, I have learned a few ways to deal with it and make it better. It's important to note that I am not a doctor, I just know what works for me. Be sure to consult your own before making any major changes.

1. Switch over to hypoallergenic laundry detergent. The fancy stuff that smells good contains all sorts of perfumes and dyes that can irritate your skin and your vagina, which can in turn effect your pH.

2. Manage your stress. Stress wreaks havoc on the body. It can cause your hair to fall out, can make you gain or lose weight and can effect the way your vagina is running. Start implementing some stress management techniques into your daily routine to keep your pH in check.

3. Get rid of dairy and grain based carbs. It's crazy, I know, but I did a Paleo for six months and never felt better. Everything functioned perfectly and then immediately fell out of whack when I went back to eating bread and cheese. (Once again, I can not stress enough, consult your doctor before making any major changes in your life, such as the Paleo diet.)

4. Talk to your doctor about getting boric acid pills if you've used Clindamycin one too many times and are looking for a different solution. Boric acid can be compounded into a pill that you then use as a weekly vaginal suppository. It can help keep your pH at a normal level on a regular basis, but can get pretty costly.

5. Wash your sex toys regularly. If you're like me, you're not going to forego a little visit to Adameve.com just because you have pain during sex. But with that said, you need to make sure you're cleaning them and storing them properly after every use. Start here with how you can wash toys based on their material.

6. Use condoms with new partners. New partners can be a big cause of BV acting up because it can take your vagina sometime to acclimate to a new partner. Using condoms can mitigate that issue, just be sure to use the standard kind of condoms that don't have the fancy lube or ridges.

Bacteria Vaginosis can be depressing and can ruin your sex life if you let it. Talk to your doctor about some of the reasons it could be plaguing you and then see if any of these tips help out.


National Vulvodynia Association Expands Treatment Registry


The National Vulvodynia Association (NVA) has expanded its treatment registry in order to advance the care of women suffering from pelvic pain. The NVA is an organization that recognizes the lack of effective treatment for women suffering from vulvar and sexual pain and is dedicated to helping advance the understanding and treatment protocols for this under-served population. Please contact 
http://www.nva.org/treatmentregistry.html for information and to register.


What Not to Say at the Bedside


A cancer patient writes about what friends and family should and should not say to a person living with cancer. But we feel that much of what the writers says pertains to pelvic pain patients and could serve as a helpful guide to women and men suffering from pelvic pain in how to instruct others about appropriate ways to help them. Check out the article here, in The New York Times. What do you think? 


Testimonial: Alliance for Pelvic Pain, by Alexandra H.


Thank you so much to Alexandra H. for submitting her testimonial of her experience from the Alliance for Pelvic Pain retreat. We are so genuinely touched by her words, and we hope you will be, too! If you have any questions about future Alliance for Pelvic retreats (and there will be more!), please feel free to reach out to us via healingpainfulsex@gmail.com , or on our Facebook or Twitter pages.


Fighters and Healers: One Patient’s thoughts on the Alliance for Pelvic Pain Conference

by Alexandra H.

My first impression when I attended the gathering the night before the Alliance for Pelvic Pain conference is that all of the women (and their partners) looked so normal. They were beautifully dressed as they sipped wine and got to know each other and the healers who led the conference. And yet each of these women, like me, was in either intermittent or constant pain, probably had trouble sitting for long periods, had most likely been humiliated by uncaring or ignorant doctors, and yet had made the journey to Bethlehem, Pennsylvania, in search of education, healing, and camaraderie.

As I got to know these women, my admiration grew. Many women with pelvic pain problems have kept them secret. Other women had lost jobs, marriages, relationships with their relatives. Some had suffered pain and depression so deep that they would stay in bed for days. And yet every single one of them cared enough about her own life to get out of bed and travel—from as far away as the UK—to this gathering.

And then, of course, bright and early on Saturday morning, (7:00, ouch!) the day started with yoga, and by 8:30, the conference began. We were urged to take green markers out of our generously stocked gift-bags and write “It’s All Connected” at the top of our notes. And indeed, it was.

Each presentation was excellent, and complemented the other. Sometimes similar information was repeated, but it was not repetitive, both because the information was presented at a relatively high, but understandable level, and because each speaker had a slightly different take on how to understand the pelvis and what different kinds of layers affect it. As Dr. Robert Echenberg said, “These are complex overlapping problems with a need for complex overlapping treatments.” He detailed a number of these conditions that, including interstitial cystitis, chronic pudendal nerve neuralgia, pelvic pain, IBS, endometriosis, PGAD, etc. and gave explanations of each of them. He also helped us to understand the differences between chronic and acute pain and the difficulties faced in treating both the visceral and somatic triggers of neuropathic and inflammatory chronic pain, because, as he said, with chronic pain, “pain is the disease.” It was clearly frustrating to him that so little attention has been paid to an issue that he said affected approximately 20 percent of all women As he intoned, “There really is an entire woman around the uterus of the patient. It was helpful to learn that he, obviously a doctor of long experience, said that he only started discovering the issue of pelvic pain about twelve years ago.

Next, Dr. Deborah Coady started in with a very healing statement, “It’s all good news—I think we’re making a shift.” She explained her technique for obtaining a complete diagnosis for women with chronic pelvic pain issues, which involved looking at the body layer by layer, from the surface (skin, vestibule, labia), to the nerves, to the muscle and connective tissues, to the orthopedic layer, organs, and bodywide systems. She explained (something new to me) that some nerves connect and communicate in the spine, creating shared pain messages that go to the brain.

Physical therapist Amy Stein further explained the connections of the muscular-skeletal systems on pelvic pain, including IBS and urinary problems. She, too, emphasized looking at the whole body and the importance of such things as hip alignment and flexibility, and the idea that physical therapy can help to re-educate your body into more helpful patterns of movement.

Next, Licensed Professional Counselor Alexandra Milspaw spoke of the pain processing signals in the body. She explained the mind-body connection. For instance, she said that how traumatic events are initially perceived (such as the difference between breaking your arm while playing basketball vs. being beaten) can affect the way the pain is perceived in the long term. She explained about different nerve functions and bout how mindfulness can help to combat the fight-flight-freeze response that adds to the muscle tightness that many of us experience. One thing I learned that I found particularly helpful was the difference between dissociation and mindfulness. I was confused because both involve a separation between the ego self and the watching self—but in mindfulness, instead of your mind carrying you away from where you are because it is too painful, you are instead directing your attention toward inhabiting your body and the present moment more deeply and fully.

Next, therapist Nancy Fish spoke. In her gentle and tough way, she validated just how hard it is to live with chronic pain—and even suggested that it is normal for sufferers to consider suicide as an escape (although if they are serious about it, they need help quickly). She detailed how very sad chronic pain makes people, and decreases their ability to work and socialize, and make them feel like “damaged goods.” She emphasized that we are NOT crazy. And she said that we deserved respectful and dignified treatment, particularly from the medical community. She gave practical coping suggestions such as getting outside of ourselves; taking one day at a time; not projecting too far into the future; educating ourselves; bringing information to the doctor; asking doctors for long term treatment plans and goals, and treating ourselves when we feel at our worst—guilt free! (excellent advice!)

In the afternoon, we had wonderful workshops. Amy Stein helped to give us different exercises that we can use to open up and strengthen our bodies. She was very comfortable with speaking about bowel and bladder functions, which was somehow very consoling. I liked the exercises, too and it felt great to move after a morning of sitting.

Later, Alexandra Milspaw spoke again, and helped me to increase my knowledge of neuroscience greatly (I had never heard of the neuromatrix). I also learned something ELSE about mindfulness meditation that I didn’t fully understand. And that is the step of accepting but then REDIRECTING the feelings to something that is also present but not being attended to; i.e.; moving attention from a part of the body that hurts to one that doesn’t  She gave helpful suggestions such as how to eat mindfully and how to walk mindfully. In fact, I was so taken with her suggestions that afterwards, I just walked outside and savored the beauty of the historical area of Bethlehem on a gorgeous spring day, looking at flowers and ancient gravestones and Moravian stars and the feeling of breath and movement and life in my body. I walked about seven miles and realized I had missed Dustienne Miller’s yoga class. That was disappointing, because I knew of her excellent reputation and she seemed so sweet, but it was a magical walk and Alexandra’s ideas really inspired me.

On Sunday, there was qi gong and yoga, which I sadly missed, and more talks. Dr. Echenberg explained interstitial cystitis, IBS, and later, PGAD in greater detail. He showed excellent charts of the connections between different ailments and also a chart about the pain/feedback loop that I found particularly helpful. Dr. Coady told us that there were things that we could do to heal ourselves without doctors (or at least between doctor visits). These included getting off our butts and exercising, “Our bodies were made to move;” nutrition (she pointed out foods such as alcohol which were neurotoxins and the importance of getting vitamins in fresh, whole foods—except for Vitamins D and B12); the role of medicines; both in terms of their side effects and the benefits that some can provide in “downregulating” the nervous system. Overall, her focus (medically speaking), included, 1. focusing on each pain generator individually; 2. But thinking big, and outside the box; 3. Creating treatment plans for flare-ups  (before they start); and 4. Being willing to reevaluate residual or persistent pain to see if it is occurring in a different layer. She also emphasized, as did the other practitioners, that—in concert with the conference’s theme of “It’s All Connected,” --attacking chronic pain is a multimodal process that requires a team of practitioners, including therapists, physical therapists, different kinds of doctors, etc., to treat.

Next, Amy Stein spoke and further explained the more orthopedic aspects of pelvic pain, such as how, the deep muscles of the pelvis all connect to the tailbone, and how pelvic floor physical therapy corrects the neurogenic triggers of pelvic pain. One thing she taught was that people shouldn’t be going to the bathroom all the time “just in case.” And that they should be able to sit through the movie Titanic. I have to disagree with that, however. Lawrence of Arabia, maybe. But Titanic is the wettest movie ever! Still, I liked her analogy.

Alexandra Milspaw then spoke and asked, “How do you take care of yourself daily, weekly, monthly?” She urged us to take care of our spiritual side, our creative side, our social side, to use guided imagery and “bodywhispering,” to break routines (like brushing your teeth with a different hand than you usually use), by touch, yoga, diet, and by loving ourselves.

Nancy Fish spoke frankly and gently of how we needed to take care of ourselves and to be unapologetic for who we are as people with chronic pain. “If you have anxiety, it’s not ‘catastrophizing,’” she said. “And there are no ‘baby steps.’ Each step forward is monumental.” She urged us to delve deep into our inner resources to live the best possible emotional, sexual and spiritual life.

In the afternoon, we had more workshops. Nancy’s was on grieving. As I listened to other women speak, telling stories of loss and courage, I felt so deeply sad that I could only lie there on the floor with my eyes closed, half wanting to run out of the room, and half knowing I needed to be there and hear what they had to say. Alexandra gave a workshop about how to feel intimate with your partner without being actively sexual. We did exercises where we held arms with a fellow patient/fighter and closed our eyes, trying to get our breath in sync with each other. It was fun, and I did feel attuned to my partner when I tried it. I was especially touched because one woman had brought her husband—and I knew it was her second husband because her first had deserted her when she got sick (we had been sharing stories at lunchtime). He had been looking into her face the whole time and said, tenderly, “I was just looking at her and seeing how beautiful her face was, how smooth it is, and has no wrinkles.” She had been through many things, but she certainly had love on her side. Amy Stein did exercises with a massage stick and rubber balls. Afterwards, I immediately walked out of the room and bought her book AND an exercise stick and ball. That was really fun.

At the end, we had one final session, and got to ask questions. And then, it was over. I was elated and excited all the way home. I felt honored to be among these women who got up every day in pain and still made lives for themselves. I was also honored to be among these hard-working, curious, intelligent, forward thinking, compassionate healers. I have so many takeaways (or pearls, as Dr. Echenberg would say) that I am still writing them down in my journal. I am using different aspects of what each person said. I am considering what I put in my mouth and whether it will help me or not, I am doing exercises from Amy Stein’s book AND I bought a big Human Anatomy coloring book to help myself understand more about the interrelationship of different systems of the human body. I am reading more about the psychological effects of chronic pain and feeling a greater sense of advocacy on all of our behalfs. I really appreciate how accessible and sensitive each of the healers was, and how willing they were to talk to participants in the interstitial spaces of the meetings. I watched Dr. Coady’s face as she listened to a woman explaining her problem, saw her total concentration, her brow furrowed, as if the rest of the room had disappeared, and felt touched. I loved how Dr. Echenberg seemed so indignant at how few of his colleagues cared about his subject. And also that he had his male students get up in the stirrups so they knew how we ladies feel! It was very helpful to understand that we were were learning information that many medical students are not getting today, both in terms of chronic pain and in terms of thinking deeply about the structural issues of the pelvis. I was actually surprised at what medical students DON’T learn. It helped me to understand why some of my own practitioners have been so helpless at times.

I can’t remember who said it, but one of the healers said that the pelvis is really the core of the body, more than the abdomen. This helped me to tie together strands of psychological and physical ways of thinking about my body and myself. I realized that having chronic pain has been a very powerful journey that is unfortunate and harmful in many ways, but in other ways, has made me feel that to reach full humanity, a person must integrate the pelvis, as well as every other part of her physical being, into her mind with love and acceptance. I left the conference feeling much more of that sense of integration, and with a sense of connectedness to everyone else there. I have much more I could say about this, but I just wanted to say how deeply meaningful the whole experience was for me and how grateful I am for you to have provided it.

--Alexandra H.

P.S.: If there is one change I would suggest for next time it would be to get someone good to videotape the conference on YouTube. I have seen many excellent medical lectures on YouTube (such as the Stanford Mini Medical School series) and this would have been a fantastic opportunity to get the word out).

Huge Success: Alliance for Pelvic Pain Retreat



On April 27 and 28, 2013, the Alliance for Pelvic Pain held its first international retreat for pelvic pain patients in Bethlehem, PA. Eighty women and men from England, Canada and all over the U.S. attended this ground-breaking event and for many participants this was a life-saving and life-changing experience. For most of the attendees, this was their first opportunity to meet and speak with others about their medical conditions without shame and embarrassment. Women and men who felt so lonely and isolated before the retreat, now have a huge network of support and no longer have to cope with their physical and emotional pain alone.


The five medical and mental healthcare practitioners who founded the Alliance for Pelvic Pain (for information about the Alliance, go to allianceforpelvicpain.com) worked for more than a year to coordinate the conference. Their mission was to expand knowledge and care for the underserved population of female patients with chronic pelvic pain. One of the main goals of the retreat was to create an atmosphere where patients could feel safe to be their authentic selves. The Alliance members feel the retreat was a resounding success! Patients learned comprehensive medical information about the diagnosis and treatment of their conditions, psychological consequences and coping skills, and that they now have a huge support system to help them navigate their journey of healing.

The Alliance hopes to hold another retreat in the future -- please check the website for updates.

We also want to thank the sponsors of the retreat and the brave, courageous, and determined men and women who attended the retreat and made the weekend such a memorable and meaningful event.




















The Alliance for Pelvic Pain, Above, Left to Right: Deborah Coady, MD, FACOG; Amy Stein, MPT, BCIA-PMDB, BCB-PMD; Nancy Fish, MSW, MPH; Alexandra Milspaw, M.Ed; Robert Echenberg, MD, FACOG

Health Professionals Gather for National Educational Retreat




Check out the press release from Deborah and Nancy's venture, the Alliance for Pelvic Pain retreat, happening this weekend!




FOR IMMEDIATE RELEASE           


CONTACT: Alexandra Milspaw

April 22, 2013                      


instituteforwomeninpain@gmail.com

www.allianceforpelvicpain.com


HEALTH PROFESSIONALS GATHER FOR NATIONAL EDUCATIONAL RETREAT


Bethlehem, PA – On April 27-28, 2013 leading health practitioners from New York, NY and Bethlehem, PA will arrive at Historic Hotel Bethlehem to host the first educational retreat for female chronic pain patients in the country.  Robert J. Echenberg, M.D. & Alexandra T. Milspaw, M.Ed., LPC, Deborah Coady, M.D., Amy Stein, M.P.T., and Nancy Fish, MSW formed the Alliance for Pelvic Pain and organized this weekend’s retreat, “Connecting the Dots of Your Experience,” which will offer educational seminars, interactive workshops, one-on-one attention and treatments by local health care practitioners, and more! Patients from 18 different states as well as Canada, and the United Kingdom will attend.


BETHLEHEM, PENNSYLVANIA

WHO: Patients, Health Practitioners from Bethlehem, PA & New York, NY

WHAT: Educational Retreat for Female Patients with Chronic Pelvic Pain

WHEN: April 27-28, 2013

WHERE: Hotel Bethlehem, 437 Main Street, Bethlehem, PA 18018


This retreat is created for female chronic pelvic pain patients with complex symptoms involving one or more of the following: Interstitial Cystitis (IC), Irritable Bowel Syndrome (IBS), Pelvic Floor Dysfunction, Vulvodynia, Vestibulitis, Lichen Sclerosis, Pudendal Neuralgia, Endometriosis, and other pelvic, genital, and sexual pain disorders.


Heading the organization of this retreat, Alexandra T. Milspaw, M.Ed., LPC states, “Our mission is to expand knowledge and care to the underserved population of female patients with chronic pelvic pain. We seek to create an atmosphere where patients can feel safe to be their authentic selves. We listen. We care. We believe. This will be a weekend filled with compassion for the self, and forgiveness for others who do not understand the plight of chronic pelvic pain.”


Dr. Echenberg remarks, “My passion for integrated care in women’s health continues with the creation of this multidisciplinary regional approach to the clinical care, education, and research associated with pain in women. We hope that our retreat will contribute to ‘connecting the dots’ for individuals and the community at large.”


Those interested in receiving information about the next scheduled retreat please contact Alexandra at info@allianceforpelvicpain.com. Visit www.allianceforpelvicpain.com.


###

The Gender Gap in Pain



The article in the March 17th edition of the New York Times entitled, The Gender Gap in Pain, by Laurie Edwards, discusses how women's pain issues are so often attributed to emotional and not physical causes. She writes, "An estimated 25 percent of Americans experience chronic pain, and a disproportionate number of them are women. A review published in the Journal of Pain in 2009 found that women faced a substantially greater risk of developing pain conditions. They are twice as likely to have multiple sclerosis, two to three times more likely to develop rheumatoid arthritis and four times more likely to have chronic fatigue syndrome than men. As a whole, auto-immune diseases, which often include debilitating pain, strike women three times more frequently than men."  She also adds that  "In 2011, the Institute of Medicine published a report on the public health impact of chronic pain called "Relieving Pain in America." It found that not only did women appear to suffer more from pain, but that women's reports of pain were more likely to be dismissed."  We also see that so many of our patients who suffer from the above-mentioned illnesses also experience vulvovaginal pain.

If your health care practitioner dismisses your pain as psychologically-rooted, please cite this article to demonstrate the ignorance and bias demonstrated by the medical community. It is so easy to fall into the trap of self-doubt and self-blame when others are telling you that YOU are the cause of your pain. That is not the case. Your pain is real and when you receive a proper diagnosis and treatment, most pain levels can be decreased. Although you have to summon every fiber of your being to cope with the pain, use that same strength to deal with the medical system. It's not fair and it places a burden on you. But there are still mental health and medical practitioners who do believe your pain is real and will support you. So please don't give up!

Tips on Sexual Side Effects of Cancer Treatments


As we discuss in our book and many of our blogs, many people and especially health care professionals are squeamish about discussing sexual pain.  In an enlightening piece by Suleika Jaouad, Life, Interrupted: Crazy, Unsexy Cancer Tips in the February 14th edition of the New York Times, she so eloquently describes cancer patients' struggle with sexual side effects of cancer treatment. Ms. Jaouad has leukemia and she and so many others are frustrated by the lack of concern and information about this very real problem. Ms. Jaouad writes:

     "After my diagnosis at age 22 with leukemia, the second piece of news I
     learned was that I would likely be infertile as a result of chemotherapy. It was
     a one-two punch that was my first indication that issues of cancer and
     sexual health are inextricably tied. But to my surprise, sex is not at the
     center of the conversation in the oncology unit — far from it. No one has ever
     broached the topic of sex and cancer during my diagnosis and treatment. Not
     doctors, not nurses. On the rare occasions I initiated the conversation myself,
     talking about sex and cancer felt like a shameful secret. I felt embarrassed
     about the changes taking place in my body after chemotherapy treatment
     began — changes that for me included hot flashes, infertility and early
     menopause. Today, at age 24, when my peers are dating, marrying and having
     children of their own, my cancer treatments are causing internal and external
     changes in my body that leave me feeling confused, vulnerable, frustrated —
     and verifiably unsexy." 

She also points out that most oncologists are so concerned with saving patients' lives, that sexual problems are not even on the spectrum of discussion. She was lucky and found some organizations that do provide information including  the American Association of Sexuality Educators, Counselors and Therapists; the Society for Sex Therapy and Research; and the Association of Oncology Social Workers, all professional organizations that can help connect cancer patients to professionals trained in working with sexual health issues and the emotional and physical concerns related to a cancer diagnosis.

And the great news is that some of the top oncologists and sexual medicine experts in North America have banded together to form THE SCIENTIFIC NETWORK ON FEMALE SEXUAL HEALTH AND CANCER. Our mission is to accelerate research in the field of sexual problems after cancer (which has been sadly lacking), educate medical professionals, establish guidelines for care, and advocate for increased recognition and informed policy on this huge problem. With the major advances in treating and curing cancer now, there are 7 million of us women who may need this information and care!

Also please read tips from Dr. Sharon Bober, another member of the NETWORK, in this helpful article.

No matter what your diagnosis is, including cancer, auto-immune diseases such as lupus and connective tissue disease, multiple sclerosis, chronic fatigue syndrome and many others, sexual problems can be a prominent and disabling issue. And sexual difficulties are exacerbated by the "shame factor" and lack of information about the topic.  Thank you Ms. Jaouad for so bravely and articulately addressing this issue that affects millions of women. We urge all women with cancer or other life-altering medical conditions to NOT DISMISS or MINIMIZE your sexual concerns -- this will lead to increased anxiety, depression, intimacy issues with partners and potential partners, and a distorted self image.  No matter what challenge you are facing, sexuality and feeling sexy and sensual are vital to your emotional and physical  health. The good news is that although cancer treatments and other medical conditions can cause sexual challenges, there are effective medical treatments to ease or treat the problem. And even the act of openly addressing this issue is a first step in treating and healing the sexual aspects of medical conditions. It is unfortunate that you need to expend so much effort and energy in self-advocacy and education when you are already exhausted from dealing with so many medical and emotional aspects of your condition. But the medical community is light years behind in taking an integrative approach to health care and it becomes all of our jobs to enlighten and educate. 

 

Rereading Tuesdays with Morrie


We are always seeking inspirational sources to help our readers remain on their courageous path to seek and follow treatments for their life-altering emotional and physical pain. We recently re-read an inspirational book by Mitch Albom, Tuesdays with Morrie. Mitch Albom, a student at Brandeis University shared a very close relationship with his professor, Morrie Schwartz. Mitch lost contact with Morrie for 16 years and when he heard that his professor was dying from the terminal illness, amyotrophic lateral sclerosis (ALS), he decided to renew their student/mentor relationship.

When Morrie was diagnosed with ALS, he made the decision that he would not become bitter but was going to cherish every moment of his life even with increasing physical deterioration and pain. While teaching at Brandeis, he always tried to impart to his students the deeper meaning of life, something Mitch lost in his career and personal pursuits. Instead of Mitch helping Morrie during their Tuesday sessions, Morrie helped Mitch and millions of other people when Morrie appeared on Ted Koppel's Nightline show 3 times. 

We would like to share with you some of the inspirational and life-changing words of this incredible man and we urge you to read this book. During one of their last sessions with each other before Morrie's death where he could barely lift a finger and was in severe pain, Morrie shared with Mitch, "Remember what I said about finding a meaningful life? I wrote it down, but now I can recite it. Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning."

You may question why we are asking you to add more to your already difficult and overwhelming plate. We know that sometimes getting through a day is challenging enough. But even when you are in terrible emotional or physical pain, if you can try to incorporate some of this philosophy in your life, your pain may become more bearable. Making your life more meaningful can truly help you manage your pain while you are pursuing an integrative health approach to improve your condition.


HOPE: Health Organization for Pudendal Education


Recently our book has received some wonderful exposure in Australia via the Australian news program 7.30, and because of it we've been told by HOPE, the Health Organization for Pudendal Education, that our book has been especially helpful to members of their pudendal neuralgia community. Thank you so much to HOPE for letting us know. For others interested in this community, please visit the link above for information, personal stories (like Catherine's here), and much more. Thank you for your support, HOPE!



A Broken Body Isn't a Broken Person


Pilot Janine Shepherd started out as a cross-country skier headed for the Olympics, until a truck accident left her as a possible paraplegic. Hopes dashed, she became depressed until with complete willpower, she taught herself to walk again. 

Shepherd tells her amazing story in this TED talk, in which she advocates "A Broken Body Isn't a Broken Person." This is an ideal close to our hearts, as we always want women to know that their pain does not define them and that they are certainly greater and stronger than it. Like Shepherd says, your pain is not your identity, and we hope you will always know that. Just ask Janine!



That Loving Feeling Takes a Lot of Work by Jane Brody


Thank you Jane Brody for your piece today on how to keep "that loving feeling" in long-term relationships. We continuously stress that non-sexual touches are essential in all relationships. Ms. Brody's article in The New York Times affirms this notion.  "A pat on the back, a squeeze of the hand, a hug, an arm around the shoulder -- the science of touch suggests that it can save a so-so marriage," Dr. Lyubomirsky (whom Ms. Brody quotes) writes. "Introducing more (nonsexual) touching and affection on a daily basis will go a long way in rekindling warmth and tenderness." We wholeheartedly agree and urge all those who can and cannot have typical sexual relations make sure that nonsexual touching becomes an integral part of your relationships.  Merely touching can maintain intimacy in a relationship. We hope you all enjoy Jane Brody's article as much as we did.





January is National Cervical Health Awareness Month


January is National Cervical Health Awareness Month! We encourage all women to increase their awareness and vigilance about all health concerns affecting their genital and reproductive areas. With proper education and preventive measures, women can maintain good health in their cervical region. For more information about this important health awareness campaign, go to  http://www.nccc-online.org/index.php/january.

Healing Painful Sex in Australia!

Faithful readers, Healing Painful Sex has made the national Australian news! Thanks to sex therapist and writer Bettina Arndt, the issue of women's pelvic pain is now visible on the ABC 7.30 news program as well as The Sydney Morning Herald. Ms. Arndt was kind enough to mention our book in the process and is even shown reading it on national television (below). We are so glad women's pelvic health is finally beginning to get the attention it deserves, and thank you again to Bettina Arndt for her faith in our book. We appreciate it, and we hope you continue to spread the word to help women get the treatment they need and deserve!



Taking Stock and Looking Forward


Evaluating the end of the year and anticipating a new year is often a challenging time for most people. Rarely do people fulfill all their New Year's resolutions and accomplish all the things they had set out to do at the beginning of the year. Many people end the year disappointed in themselves and embark on a mission creating an overzealous list of items they would like to complete or conquer. Some of you may be disappointed that you are not further along in your recovery process and may even feel despondent that you may never get better. We would like to ask you to reframe the way you look at your New Year's resolutions and self-assessments and ask you NOT to look at each year as a whole. We ask you to look at your life as a series of moments and to take each day or even every hour at a time. There may be hours when you are in more pain than you would like to be or a treatment or medication that you tried did not work as well as you would have liked. Or there may have been a medical professional you saw who did not live up to your expectations. Of course we recognize how difficult these disappointments can be and don't ask you to revel in these challenges. But we do ask you to recognize the moments in your life that give you pleasure such as an unexpectedly touching card from your child, or an exercise that you couldn't do two months before, or a new friend you met in a support group, or even the moment you made a difference in someone else's life by merely sincerely asking how he or she was truly feeling. We don't believe in the term "baby steps" -- these don't exist. All steps in life are monumental and NONE should be minimized or belittled. We also ask you to believe that your health can and will improve. For many people, recovery moves at a snail's pace and that can be discouraging. But any improvement should be celebrated and every year new treatment options become available to help ease your pain.

We also ask you to recognize that you can do a tremendous amount to help in your own recovery. Mindfulness and meditation can truly help you manage your pain and actually help rewire your improperly wired central nervous system. Whether you do yoga, Tai chi, or practice meditation on a regular basis, you are helping in healing yourself!

As you end 2012 and enter 2013, please make these New Year's resolutions -- practice mindfulness, reach out to help someone else, treasure moments in your life, and whenever you can, REMAIN HOPEFUL!  And remember, you are never alone -- there are so many people out there to support you.

Less Sleep Might Mean More Pain


In a New York Times article yesterday, "Losing Sleep Reduces Your Pain Tolerance," author Anahad O'Connor reported that losing sleep can reduce pain tolerance by an average of 25 percent. This has direct implications for chronic pain sufferers, so it's important to get as much sleep as you can each night. According to O'Connor, "losing sleep may disrupt the body's pain signaling system, heightening sensitivity to painful stimuli." In our book, we talk extensively about the importance of getting enough sleep because, clearly, it can help you ease your pain in more ways than one! 


A Message of Condolence and Hope


We are so saddened to hear about the suicide of a brave woman, Gretchen Molannen, who suffered from Persistent Genital Arousal Disorder (PGAD) for 16 years. Ms. Molannen searched for relief from her debilitating condition for years and found none. We understand her decision to end her agony but of course feel horrified that someone should have suffered so horrendously without any hope of relief from her pain. As most women who have this often too misunderstood condition, Ms. Molannen suffered at the hands of insensitive and ignorant medical professionals hearing comments that mocked or minimized her level of pain. We pray that Ms. Molannen's death will begin to awaken the women's health community of the need for more research and education about the treatment of PGAD and other sexual pain conditions. We treat many women with this condition and feel very hopeful that they can gain relief and have a much improved quality of life. We extend our deepest sympathies to the family and friends of Gretchen Molannen. However, we also want to inform women who are suffering from similar conditions that there are many treatment options to ease their pain and ask you to please remain hopeful. We know we are asking you to summon super-human courage and strength to find effective treatment for your often unbearable pain. But there are treatment options out there and it is worth the fight. And we are here to support you!


Effects of an Insensitive Medical System


In a November 27, 2012 post on The Frisky, Lauren Passell writes about her harrowing experience with a painful medical condition in "I Have: Vaginal Cysts." She writes about her apprehension of approaching a doctor due to her embarrassment and fear that she would find out she had a serious medical condition. Her cysts were extremely painful and once she did finally seek medical attention, she was treated with insensitivity and ignorance. Unfortunately Ms. Passell's story is not unique -- so many of our patients have been inappropriately treated by the medical profession exacerbating their shame and fear about a medical condition in a very private part of their body. Once Ms. Passell started sharing her experiences with friends, she found out other women had the same condition, gained useful information, and felt she could be more open about her condition. She no longer felt ashamed. We have found that when women start sharing their "embarrassing" conditions with others, they feel less alone and can cope more effectively with their feelings. We also encourage all women to advocate for themselves -- you deserve to be treated with sensitivity, humanity, and dignity -- if you do not receive this treatment, it is time to look for another doctor. We understand how much strength and resiliency it takes to both deal with a frightening medical condition and demand proper treatment, but you are worth it! 

Getting Through the Holidays



So many of our patients/clients who have chronic pelvic pain have a difficult time  navigating the daily challenges of life. So when you add the Holiday Season to the mix (which really begins around Thanksgiving), levels of stress, anxiety, and depression can increase significantly and exacerbate pain levels. We know it is impossible to completely escape the holiday frenzy no matter which religion you practice, but there are things you can do to reduce the pressure that you may be feeling. Here are some tips to help you get through the end of the year:

- Don't assume that everyone else is having a jolly old time. Most people find this time of the year incredibly difficult. So don't look at appearances -- almost everyone you know would frequently like to escape the holiday "joy."

- Try to set realistic expectations for yourself. If you can't entertain due to your pelvic pain or can't spend a great deal of time at other entertaining venues due to your pain and difficulty sitting, be gentle with yourself and go to festivities for shorter periods of time. Or if you can't attend some occasions, then that is fine also.

- Don't assume every one is partnered off around Christmas and New Year's. Many people are not in a relationship and find the holidays a particularly rough time. Again, realize that many people are not in relationships and many do not have a dazzling New Year's celebration. Staying home and watching a movie with a friend can be a very good way to spend New Year's. There is not a right or wrong way to celebrate a holiday -- everyone does something different.  

- For those women with Painful Bladder Syndrome, the holidays can present challenges because of food restrictions. We realize that your food limitations without the holidays are difficult enough, but adding so many food-oriented events can make life even harder. We are not asking you to be particularly grateful at this time of year. And if you can't attend certain family or work functions because it is too difficult, cut yourself some slack.

We know that chronic pelvic pain can make this time of year exceptionally hard. But we urge you to be more gentle with yourself and to take the time to be kinder to yourself. And also explain to those closest to you if you are having a harder time. You don't need to dwell on your difficulties with others, but you can remind them that this time of year presents issues that other people without pain might not confront. Also, you are allowed to indulge in temporary pity parties but then make sure you spend time with someone or doing something that gives you pleasure. And we promise you that you will get through this year and are hopeful that improved health and decreased pain are in your future.

A Tale of Lichen Sclerosus


In the "It Happened to Me" section of xoJane on November 6, Frances Marley wrote poignantly about the harrowing experiences she had with both the diagnosis and treatment of her dermatological condition called Lichen Sclerosus. Lichen Sclerosus is an auto-immune skin condition that can be easily misdiagnosed. Unfortunately, Ms. Marley suffered with her Lichen Sclerosus far too long before receiving the correct diagnosis and proper treatment. If diagnosed early enough, this skin condition can usually be kept in remission through the use or topical ointments (including corticosteroid ointments). If anyone experiences the symptoms included in Ms. Marley's article, you should probably ask your gynecologist or dermatologist to do a skin biopsy and ask that the individual reading the pathology report be a dermopathologist.  Sometimes a regular pathologist can miss the diagnosis and make an incorrect interpretation (this condition is covered in our book in chapter 6). We applaud Ms. Marley for writing about such a personal story and sharing such important information with other women who may be suffering from the same condition. We always urge women to advocate for themselves and never accept a diagnosis or treatment plan that doesn't feel right.

Pelvic Exams (On Yourself??)


Jamie Kath Harrison, who wrote an interesting piece in xoJane titled "It Happened to Me: I Teach Pelvic Exams to Med Students (On Myself)," has a side job as a "standardized patient," where she serves as a model for medical students practicing medical exams including pelvic and breast exams. Her main career is a librarian and a few times a years she helps teach medical students how to do a proper exams. She initially was embarrassed to admit she had this side career and now takes pride in the fact that she is doing a necessary service for medical students who have little or no experience in giving a woman a full exam. She writes that sometimes this is the first time a medical student has seen breasts or a vagina. Basically she begain disassociating herself from her body in order to do these exams, something many of our patients must do to get through so many pelvic exams. But now she takes pride in her educational service and we agree that she should be proud of her courageous actions. She looks at these body parts as one would look at an elbow or leg, as many or our patients do. Unfortunately, many medical students do not receive nearly the degree of sexual education that is needed and consequently so many women suffer from their ignorance when they become full-fledged doctors. We applaud Ms. Harrison for her unusual but needed medical student exam modeling and hope more women have the guts to emulate her actions. 

PGAD: Not a Joke!


On
October 7, 2012, the Huffington Post ran an article titled, "100 Orgasms A Day Not A Joke According to Women Suffering from Rare Disorder," discussing Persistent Genital Arousal Disorder (PGAD). The article focuses on the physically and emotionally debilitating effects of this all too common medical condition. The article features two women who suffer from PGAD and how it has detrimentally affected their lives. PGAD is physical (not psychologically-rooted) disorder which causes a women to feel as if they are in a frequent unprovoked state of arousal.

Some people may think this is a pleasurable condition. On the contrary, PGAD, can be one of the most distressing vulvogaginal disorders. There are many causes and various treatments. However, more research into the causes and treatment of PGAD is still needed. We admire the two women featured in the article for their bravery in publicly disclosing their conditions. Many women feel too ashamed to discuss PGAD with even their family members and friends. So, these women took a very bold and selfless step in disclosing their conditions in order to help educate both women and the medical community about a very serious and life-altering condition.

Our book stresses how key it is to share your sexual pain condition with others in order to reduce your sense of isolation. However, discussing conditions that affect your genitals takes tremendous courage. Both these women understand that they are not responsible for causing their PGAD and hope that their disclosure will help others understand that PGAD should be viewed as a medical condition in the same way people view diabetes and asthma. There should be no shame associated with PGAD because it is a medical problem that affects a women's anatomy. Our genital region is like any other part of our anatomy and should be treated as such. Unfortunately, there are far too many medical professionals and lay-people who view the vulva and vagina areas as shameful and should be kept private. We commend both the Huffington Post and these two women who are trying to reduce the stigma associated with PGAD.


Our Definition of "Sex-Positive"


The term sex-positive was comprehensively and articulately addressed by Alyssa Royse in her recent blog post "Are WE Sex Positive?" in The Buzz, the Good Vibrations Online Magazine. Sex-positive is defined differently by many sex educators and counselors. Royse states that she doesn't particularly like the term sex-positive but quotes Charlie Glickman as saying it should be the relevant measure of a sexual act or practice where there is consent, pleasure, and well-being by those affected and involved by the sexual activity. She also discusses that the term sex-positive is not always so positive when it is defined as sexual progressiveness and is then exclusionary. For example, sexual progressiveness can be a judgemental term when polygamy is viewed as progressive and monogamy is considered backwards.

We understand why Royse feels so ambivalent about this term. Many sex educators and counselors refer to our book as being sex-positive and we are flattered by this description. When we wrote Healing Painful Sex, our main mission was to help women suffering from sexual pain understand their medical conditions, reduce their sense of isolation, learn how to obtain proper medical and psychological treatment, understand that they are suffering from a medical condition that has debilitating emotional consequences, redefine their sense of sexuality, and give women hope when so many feel despondent after suffering from frightening and devastating painful sexual conditions. So many women who suffer from sexual pain conditions feel desexualized and their sense of sexuality has been damaged and diminished. How can a woman feel sexually-positive when an act that is supposed to provide pleasure is only associated with pain? That was one of the hardest challenges we faced when writing our book -- how do we help women feel sexy and sensual when so many feel like "damaged goods" or "freaks of nature"? These are terms that so many of our patients use to describe themselves. We feel that we successfully accomplished this in our book by helping women reframe the term sexuality. Feeling good about yourself sexually is a mindset, not the ability to have hot and steamy sex in multiple positions or enter into polygamous relationships. If these are your choices, that is fine. We never judge any one's sexual preferences or practices. However, our main concern is that women understand that their sense of sexuality and sensuality is how they view themselves. Even if you have vulvovaginal pain and cannot have sexual intercourse (until you heal), you can be a vibrant, sensual, and sexual woman.  Sexuality is defined by so many elements of your personality -- intelligence, sense of humor, and personal style -- not by your genital anatomy. Yes, we do consider our book to be sex-positive and ask women to undertake the super-human task of not letting their sexual pain define their sexuality.

We agree with Royse that the term sex-positive can have many negative connotations.  However, we hope that all women, whether they have sexual pain or are pain-free, can broaden their definition of sexuality -- being sexual has nothing to do with your anatomy.  We know one patient who had a double mastectomy (with reconstruction), a hysterectomy, and suffers from vulvovaginal pain and still feels sexy and the feeling is reciprocated by her partner. That is what we mean by sex-positive. Don't let anyone, including yourself, define your sense of sexuality by the sum of your parts. Every women can feel sexual or sex-positive as long as you broaden your definition of the term sex.

Deborah and Nancy in The Huffington Post and The New York Times!



Deb and Nancy have been popping up all over the media recently! Take a look here at two of their latest publications:

Vagina: A Biography's Lession: Women Don't Have to Settle for Less on The Huffington Post
Deb and Nancy write about what women can learn from Naomi Wolf's new book

Naomi Wolf Sparks Another Debate (On Sex, Of Course) by Lauren Spalding in The New York Times
Deb is quoted in this article about Naomi Wolf's new book, "Vagina: A Biography."

Take a look and tell us what you think!



Dr. Jane Greer: Doctor on Call


We would like to thank Dr. Jane Greer for having us as guests on September 11 radio program, "Doctor on Call" on Healthylife.Net. The interview will be up soon, so please have a listen when you can! Dr. Greer asked us targeted and directed questions about the medical and psychological aspects of sexual pain with compassion. We embrace interviewers who grasp the complexity of sexual pain and direct the interview so we can discuss key and important topics. Thank you Dr. Greer for taking the time to learn about sexual pain and all its complexities. And we also thank Dr. Greer for helping to further our mission in helping women and health care professionals understand that sexual pain is not a mysterious condition and can be treated effectively when properly understood and treated with an integrative approach.


Why Do Women Bear the Burden of Birth Control?


A recent article in The Guardian, "Contraception is no stroll in the park and men should share the stress", discusses problems with the implantable contraception, Implanon, which was "lost" in womens' arms at the site of implantation but is undetectible through current diagnostic devices. Implantable contraceptive devices are now being made that can be imaged with diagnostic machines. But the article addresses the larger issue of why women bear the onus of being responsible for birth control. When both women and men find condoms an undesirable form of birth control, it falls on the women to find an effective method of birth control. And many women don't like the idea of using hormone-altering pill, which often seems like the most burdensome form of contraception. As with many issues that affect women, the medical community  seems to lag in their sensitivity and knowledge when it comes to progressing past the 20th century of medical practices. Why do women have to educate their doctors about sexual pain issues and why do women have urge the medical community to investigate and research contraceptive devices for men? It is women who are on the forefront of advocating for proper and effective medical interventions for their medical concerns. As healthcare professionals, we must all continue to advocate for womens' health issues. Hopefully soon the medical community will move forward into the 21st century of medical knowledge.


Dr. Coady in Elle Magazine!

We'd like to congratulate Dr. Coady on being featured in the article "Sex Machine" by Miranda Purves in the September 2012 issue of Elle magazine! The article is about Naomi Wolf, famed feminist and author, whom Dr. Coady treated for pelvic pain. See the article below! Dr. Coady is on the second page.


The Scary Truth of Vaginal Rejuvenation


According to
this article on ABCnews.com, Melanie Berliet, a 30-year-old-writer, posed as a vaginal rejuvenation patient to get an inside scoop for a story she was writing about the growing field. She ended up getting "an education in how doctors can tighten flabby tissue in a vaginoplasty, cut back the inner and outer lips of the labia and sometimes open the clitoral hood." Not only that, but one of the doctors basically told Berliet her boyfriend would propose after seeing her rejuvenated vagina. While this form of surgery has existed for ages, only recently has it taken leaps to cosmetic proportions, visually enhancing the genitalia to match the sights presented in pornography, among other deceiving visuals.

Why is that so many women feel so inadequate that they will put themselves  through a potentially dangerous surgery that can easily result in permanent sexual pain?  What message is society giving women that they feel they have to mutilate their bodies to be attractive to sexual partners or to feel more sensual?  What is an ideal vulva or vagina and who establishes the standard of the perfect vulva and vagina?

We urge women to find less invasive and drastic ways of enhancing their sex life and feeling more sexual.  There are millions of women who suffer from sexual pain as a result of medical conditions that are not within their control. Sexual pain can make your life a living hell!  Please don't risk developing a severe chronic pain condition for a surgery that will most likely not make you feel more sensual but can result in mutilation and pain. There is no such thing as a perfect vulva or vagina and there are so many other ways to feel better about yourself sexually.  Many women in Africa are fighting vehemently to avoid forced genital mutilation. So why are women willing to put themselves through potential mutilation for sexual enhancement? This is distorted thinking and we think that surgeons who are doing this type of unnecessary surgery should rethink their practices.

Healing Painful Sex, Megan Andelloux, and Jessica O'Reilly


Although all top sex educators and sexologists have different ways of presenting their needed information and varied perspectives, one thing we have noticed is that all of us have the same mission -- helping women and their partners become more comfortable in their "sexual skin."  Both nationally known experts in the field, Megan Andelloux and Jessica O'Reilly are busy almost every week of the year speaking at colleges or other important venues helping people who want more satisfaction out of their sex lives.

Our orientation is to help women who are in sexual pain find a way to feel sexy and sensual and to find a way 'to achieve intimacy through "out of the box" thinking.' Megan Andelloux and Jessica O'Reilly do not work from a "point of pain." However, the wonderful thing is that we all have the same goal and all are learning from each others' various areas of expertise. We may have different orientations and we are grateful for that. Because if we all educated in the same way, life would get very boring. We are grateful to learn from such noted experts and they in turn can learn about sexual pain from us. Basically, what we have learned throughout the process of writing our book and speaking with so many experts, is that mutual respect and collaboration is the key to helping people learn and feel comfortable with their sexuality. We strongly recommend that you visit Megan Andelloux (above left) and Jessica O'Reilly (above right) online!


Todd Akin: Toxic to All


After his comments about rape and pregnancy, Republican Senate candidate Todd Akin
is under intense pressure to drop out of the race. Republicans feared the turmoil over his remarks could cost them a crucial seat and damage their hopes of winning control of the Senate. Congressman Akin vowed to fight on despite the reactions to his extraordinarily inane and offensive comments that women's bodies can prevent pregnancies in cases of "legitimate" rape. His comments and views are misogynistic, ignorant, and frightening. It is such a sad comment about this country's political state of affairs that such a powerful figure who serves on the Science Committee of the House of Representatives would have the audacity to make such a hateful public comment regarding women and, just as sad, have so little scientific medical knowledge about the female reproductive system.  Does he even read, or talk to any medical doctors about his “Science”? Are there no requirements in knowledge or intelligence for assigning someone to the “Science” Committee, which has the power to make regulations that affect everyone's health, and that of our environment? Are there no advisers to these men who can have such power over women’s bodies? Our children know more about female reproduction than Mr. Akin does. But since the Republicans plan big cuts to education, we should worry, because more of us in this nation may become as ignorant of scientific facts as he is.

He did apologize when he realized his political career is in such jeopardy. However, once a comment like this is made, it is impossible to retract such an offensive statement.

Congressman Akin should pull out of the Senatorial race and should not be allowed to retain his seat in Congress. His comments are hopefully not reflective of most politicians. However, based on the general ignorance about reproductive health and sexual pain among most medical professionals, we must all be in an uproar and work vehemently to educate even the most educated individuals about female sexual issues.  We are horrified about the neglect of medical treatment for women suffering from sexual pain. And we are horrified in this day and age that a political figure like Todd Akin could hold views that are so hateful toward women.


Sexological Bodyworks with Ellen Heed


Our conversation with Ellen Heed was quite educational and enlightening. Ms. Heed is trained in a form of therapy called sexological bodyworks. She has been educating students and clients about how to attain radiant health worldwide for over 10 years. Using keen perceptual skills to accurately assess the needs of her clients, Ellen connects the dots and facilitates outcomes for health issues ranging from chronic pain, sexual pain, emotional stagnation and nutritional imbalances.

Ellen
has pioneered new techniques for scar tissues remediation for women and is a leading anatomy educator who trains yoga teachers, Sexological Bodyworkers, and other somatic professionals in this country and abroad. She is currently pursuing her PhD in Somatic Psychology and has a thriving practice in Los Angeles. In California, sexological bodyworkers are certified to do hands on manual therapy to soften scar tissue that can cause serious pain issues. Ellen uses a very light touch and there is no pain involved during or after her therapy treatment. She reports that she is very successful in treating a variety of sexual pain conditions through her innovative methods. There are sexological bodyworkers on the East Coast, but they are not certified to do hands on treatment.

We are learning so much when speaking with creative practitioners like Ellen Heed. We are all working toward the same goal -- alleviating sexual and pelvic pain. But thankfully  there are many paths to choose from so if you find that one is not helpful, than there are many other interventions you can try to ease your pain. That is why women should be so hopeful. There are so many talented out-of-the-box healthcare professionals that may provide a treatment modality that can help you! Check out her website, Ellenheed.com.

Hats Off to Dr. Justine Shuey!


Last week we had the privilege of speaking with the renowned sex educator Dr. Justine Shuey. Dr. Shuey is nationally known, speaking at colleges all over the country as well as teaching medical students about sexuality and giving effective pelvic exams with sensitivity. She related to us that she is astounded at how little sex education is given to medical students and how unprepared so many are to treat women with any sexual concerns, especially those with sexual pain. We discussed how we are still living in the Victorian Era when it comes to teaching about sexuality and how this reflects the general discomfort our society has about discussing sexuality. If there is still a lack of comfort and interest in teaching sexuality to those individuals on the front line of treating women with sexual concerns and pain, all of us involved in sexual education and therapy still have a tremendous amount of work to do. We are so grateful to pioneers like Dr. Shuey for forging ahead in uncharted territory and for taking on the daunting task of educating those individuals who can make a real difference in how women are treated for sexual concerns. Please visit Dr. Shuey on her website so you can see her astounding work and help in the effort in providing effective sexual education.


Thank You, Jane Brody!: Healing Painful Sex in The New York Times!


We would like to thank Jane Brody from the bottom of our hearts for taking the brave step in enlightening the public about the all too hidden/taboo topic of sexual pain in her New York Times article "Persistence is Key to Treating Sexual Pain." When we wrote the book, we had a mission -- we wanted to empower women who feel so trapped, embarrassed, and ashamed by a form of pain that very few medical professionals want to discuss or treat. We also wanted to educate medical professionals who are far too uninformed about this often debilitating form of pain. Our goal was to help eradicate the shame factor and help both women and healthcare professionals understand that sexual pain should be treated like any other medical pain condition and to take the blame off of women. Of course emotional factors can play a role in contributing to sexual pain. But in our extensive experience in treating women with sexual pain, we have learned that the etiology of most sexual pain conditions is medical and the psychological and emotional issues are often a consequence of suffering from a horrendous form of pain that affects every aspect of a woman's life.


It has been exhilarating to receive such interest and various reactions to the article. Many people are grateful that this topic is finally being covered by such a reputable columnist and an internationally read publication. And others have expressed frustration that the article didn't cover the entire spectrum of sexual pain conditions. And some readers feel that we downplayed the psychological, societal, and environmental factors contributing to sexual pain. We appreciate every comment we have received and recognize the validity of every individual's concern. Our book provides a comprehensive discussion of the complex medical and psychological factors involved with sexual pain. As with any article, Ms. Brody's column can only cover one aspect of any topic. We are avid fans of her column and deeply appreciate how she tackles controversial topics.  

When we began our venture of writing our book, our sincere wish was that we could help the millions of women suffering from a form of pain that very few people wanted to talk about. We are indebted to Seal Press for so bravely supporting our efforts. We are grateful that we are on the path of accomplishing this mission and recognize that there are so many others who are joining us in this vital effort. Treating the medical and psychological aspects of sexual pain requires a multi-disciplinary and integrative approach. And based on the multitude of comments reactions we have received, people seem to recognize the complexity of treating sexual pain.

Our ultimate mission is to give both women and healthcare professionals inspiration and hope that sexual pain can be treated and women can and should obtain help. We believe in the resiliency of the human spirit and feel so fortunate to help so many courageous and brave women. And we welcome every one who chooses to join this monumental effort.

Illustration by Yvette Fedorova for The New York Times

Reuters: Genital Pain Not Uncommon in Women


While we of course know that genital pain is common in women, the health issue usually doesn't get nearly enough attention in the media. This article in Reuters, however, is one of the ones we found, albeit from last year, about the rate of incidence. Take a look here and see if it corresponds with what you know. Knowledge is power!


Sex After Recovery


Many women assume after they have recovered from sexual pain conditions or their pain conditions have improved significantly, that resuming a sex life involving sexual penetration should come naturally. We encourage women who have been given the ok by their physicians to resume their sex lives. However, we also advise women and their partners to be patient with themselves and with each other.

Imagine getting into a car after having a serious accident -- wouldn't you be petrified or extremely anxious about getting behind the wheel again? It's the same for women who have been traumatized by sexual pain. The first few times you have "typical" sex with your partner will probably be anxiety-provoking and just down-right scary. This is a totally normal and predictable reaction. But as with any situation that provokes fear and apprehension, the more exposure you have to the event, the less fearful it becomes. The first time you have intercourse after a prolonged period of sexual pain, you should expect that it might not be very gratifying. But the more positive experiences you have, the more pleasurable it will become. There is no typical time frame for how long it will take you to become comfortable with resuming a life with sexual intercourse. It is different for everyone and there is no such thing as normal.

Here are some tips that might help you return to your desired sex life after your doctor gives you the thumbs-up:
  • Before intercourse, discuss your anxieties and fears with your partner
  • Have realistic expectations about your first few encounters -- don't try to achieve orgasm but just get used to resuming sexual penetration
  • Use ONLY NATURAL lubricants that we discuss in our book 
  • Try to create as comfortable an environment as possible where you will feel most relaxed
  • Don't push yourself to have intercourse too frequently to make up for lost time -- that is putting too much pressure on yourself and will probably lead to disappointment
  • Give yourself permission to feel whatever you feel and don't judge those feelings (if you feel like laughing due to tension, go ahead and laugh or if you feel like crying, that is ok also because it can be a very emotionally draining experience)
  • Be hopeful that your sex life will be fulfilling and try to gain a new perspective on sexual satisfaction -- achieving intimacy rather then orgasm initially is a great start.

 

Dr. Coady featured on EmpowHER!


Many thanks to Marcia G. Yerman for featuring Dr. Coady in her article, "Hormones, Menopause, and Vaginal Atrophy: A Beginner's Primer," on EmpowHER! Surprisingly, there is still a lot the average woman doesn't know about menopause, but Yerman enlightens her audience with this piece. You can find Dr. Coady on page five.


Our Mothers' Sexuality and its Effect on Daughters


One of the most wonderful  and unexpected results of writing our book is the connections we have made with other medical and mental healthcare practitioners in the field of sexual treatment. This week we had the opportunity to speak with psychoanalyst/author, JoyceMcFadden. Ms. McFadden has written several books including Your Daughter's Bedroom: Insights for Raising Confident Women. We highly recommend checking our her website joycemcfadden.com where you can obtain more information about her books and her philosophy about sexuality and its connection to the mother/daughter relationship.


In her practice and her books, Ms. McFadden focuses on the influence mothers have over their daughters' view on sexuality and how important it is for mothers to discuss sexual matters with their daughters and feel comfortable with their own sexuality. She asserts that after having children, so many women repress the erotic side of themselves in front of their daughters and what a negative effect this can have on their daughters' own perceptions of their sexuality and sensuality. In August of 2005, she launched the Women's Realities Study, a research project that aimed to take the pulse of modern women by asking open-ended questions about relationships, motherhood, and mental health. One of the most interesting results of this study was how eager daughters are to learn about their mothers' sexual views and personal sexual experiences. Many mothers feel it is inappropriate to discuss personal sexual matters with their daughters as if they have had no sexual past before becoming mothers.


We feel as educators about sexuality, that one of the main goals of all healthcare practitioners is to urge mothers to be more open about discussing sexuality and become more comfortable in their own skins. Our mothers serve as role models in all areas of our life including demonstrating a healthy and comfortable view of sex and erotic matters. Joyce McFadden shares some wonderful insights about this matter in her books and website. We share the same goals and mission -- to help empower women to feel comfortable discussing their sexuality and eradicate the shame factor when seeking help or advice about any sexual matter. Thankfully there are so many sexual health educators like Joyce McFadden who are trying to eliminate society's Victorian view on sex. If women become more comfortable with their own sexuality, then when problems or challenges do arise, they can seek medical and emotional assistance without the all too common shame factor.  We are grateful that we have enlightened colleagues like Ms. McFadden.

 

You Can Meet a Partner If You Have Sexual Pain


This week we had a very hopeful and inspiring interview with Jane, founder of the website: myvaginismusstory.com. Jane reported that she suffered from vaginismus (a term we don't use in our book) which caused her considerable pain during sexual intercourse. She obtained good medical and psychological help and thankfully is now pain free. We are not writing about her medical journey, but we think our readers should read about her emotional journey in finding a caring and supportive partner while suffering from sexual pain. As most women who suffer from vulvovaginal pain, Jane doubted her ability to find a partner who would be willing to sustain a relationship with someone who couldn't engage in traditional sexual intercourse. But she was told by others that if someone truly cares about her as a person, then she will be able to enter into a meaningful relationship. She was skeptical at first but finally did meet a wonderful, caring, and supportive partner while she was undergoing treatment. It was so refreshing to speak with Jane because she reinforces the message we convey in our book that single women should not stop dating even if they can't have intercourse. It was such an uplifting experience to hear Jane's true and inspirational life story and hopeful message to all women who have vulvovaginal pain. We thank Jane for sharing her intimate story and hope that she can give hope to other women who are in similar circumstances.

Healing Painful Sex on the Radio!


On July 22, we were interviewed by Maureen McGrath on her radio program The Sunday Night Sex Show on Vancouver's CKNW radio station. Since the book was released in November of 2011, we have had the exciting opportunity of being interviewed by various media outlets. We of course are trying to get the word out about our book to empower women who suffer from sexual pain. And thankfully, all of the individuals interviewing us have been warm, intelligent, engaging and informed. No two interviews are ever the same and with each interview we learn more about women's concerns. While trying to educate others about sexual pain, we are in turn gaining so much valuable information that enhances our practices and overall understanding of sexual pain. So we thank Maureen McGrath and other program hosts for helping us educate others about the often misunderstood area of sexual pain. But we also thank Maureen for broadening our knowledge base.

You can listen to our interview with Maureen McGrath on the Sunday Night Sex Show here, under July 22!


Trending in Sexuality: Karezza


The recent on article on karezza - having sex without orgasm being the ultimate goal - by Emma Gray in The Huffington Post was very enlightening. There are couples who don't suffer from sexual pain who are choosing to follow the idealogy of karezza -- achieving intimacy during sexual relations rather than orgasm. These couples say that karezza has strengthened their relationships. Couples who use this philosophy are finding that their sex lives have never been better. And many men are the ones saying that their sex lives have improved by using karezza.

Many may find this sexual practice unusual. We, however, commend any sex therapist or couple who have chosen this path. We support anyone who still feels that orgasm should be the ultimate goal in their sex lives. However, we also support anyone who chooses to think out of the box and can find multiple ways outside of orgasm to achieve sexual pleasure. Basically, there is no norm when it comes to sexuality -- whatever works for you is great. And for our patients who suffer from sexual pain, we endorse the use of karezza -- you can achieve sexual pleasure and intimacy without orgasm. We state this in our book and in our practices but now we have an actual name for this enlightening sexual philosophy. Thank you for this liberating article!!


Living with Painful Intercourse: A Persephone Magazine Series


We commend Michelle Miller of Persephone Magazine on her revealing her very intimate experience with sexual pain.

Miller understands how vital it is for women to share their experiences with others because living in isolation with such a debilitating condition is not an option and very destructive.

We are grateful that she found a competent physician who was able to give her a correct diagnosis. Unfortunately, many of our patients have not had such positive experiences with obtaining a correct diagnosis and effective treatment.

We applaud all women who have the courage to discuss such a difficult topic and we all need to connect with each to provide support and broaden our knowledge of the etiology and treatment of sexual pain.


Should Sex Come Naturally?


In a recent article in Psychology Today by Pamela Madsen, the author comments on how it is bogus that sexual pleasure should come naturally and that women should reach out for help from sex therapists or educators to learn how to maximize their sexual pleasure. We are in total agreement with this author's position. Yes, it would be wonderful if everyone's sexual encounters were like those we see in the boy meets girl love stories we see in movies. But that is not the real world. As the author says, we all feel comfortable in obtaining help in learning how to eat and exercise properly, so why shouldn't we seek in learning how to gain the most pleasure from our sexual experiences?

We think all women could benefit from education on maximizing sexual satisfaction. But our patients in particular who suffer from sexual pain and really have to think out of the box on how to gain any pleasure from sex, truly need to seek help in finding creative ways to find some pleasure through various sexual techniques. So much of the joy has been taken away from our patients because even the basic missionary position can induce excruciating pain. We agree with the author that sex does not come naturally for many people just as proper exercise techniques and eating habits need to be learned. So don't let anyone make you feel depraved or damaged for seeking sexual help whether you have a sexual pain condition or not. We all could use help in learning how to gain pleasure from our bodies. You are not being narcissistic or perverted for learning creative ways to gain the most gratification from your sex life. We applaud anyone who says "I deserve the most out of every aspect of my life."  That is called healthy ego gratification and go for it!

What Causes Low Libido?



An interesting article, "More Women Look Over the Counter for a Libido Fix" by Abby Ellin, in the Science and Health section of the New York Times addresses the hidden problem of low libido in women -- or an aspect of female sexual dysfunction.  We would have to say that the majority of our sexual and vulvovaginal patients do suffer from low libido. How can you not when an act that is supposed to produce pleasure only produces pain!

However, there are many reasons that women suffer from low libido including side effects of medications, depression, anxiety, and an over-programmed stressful life. We think this article is very enlightening for women because if you are dealing with a low libido and it is troublesome for you, then you need to know you are not alone. It is also important to remember that there is no norm for libido levels -- every person is different and every person has different levels of sexual desire. It only becomes a problem when you and your partner are dissatisfied with your sexual functioning and desire. It is vital that all women, those with and without sexual pain issues, know that they can at various times in their life experience dissatisfaction with their sex lives and libido.

The fact that the pharmaceutical industry is now offering products for women and not just men creates a double-edged sword. Some of these products may work and some may not. And we would not recommend trying any of these products without first consulting your physician. There can be side effects with even over-the-counter products and these products might be contraindicated with other medications you might be taking.

We commend the the New York Times in bringing an issue out of the closet and normalizing a topic that seems taboo in the general population. But it is important to remember that there are many factors affecting a woman's libido. And especially with our patients, it is completely normal that their libidos are diminished. The good news is that many things can be done to increase women's libido and that women should not feel defective if they don't have a strong sex drive. You should never feel embarrassed or ashamed if your sex drive is less than desired. You are not abnormal or psychologically impaired. Almost everyone at some point in their lives have varied levels of libido. So if you are or aren't suffering from sexual pain, discuss your libido issues with your physician or therapist. It is a topic like PMS or menopause -- it happens to us all.


Thank God for Naomi Wolf!


As women and feminists, we are indebted to Naomi Wolf for so aggressively taking on the hard issues. Naomi so effectively takes on key feminist issues and recognizes the general public's backwardness and discomfort with using common words such as vagina and vulva -- basic anatomical parts. Read this article, "Vagina: Say it Out Loud" from The Guardian, and you may cringe as we do about how there are far too many intelligent people living in the Victorian Era when it comes to using the correct verbiage to discuss our genitalia. It seem absurd that Naomi Wolf should even have to write an article about this topic. Unfortunately, we still have to continue to vigorously enlighten even the brightest individuals that we ALL need to be comfortable with speaking about our vaginas and vulvas. No wonder women who suffer sexual pain are so uncomfortable seeking help for their medical conditions -- women know that far too many healthcare professionals are reluctant to discuss problems in the sexual/genital area. We are grateful to Naomi Wolf for all that she has done to help in getting our book published and applaud her for continuous efforts in helping to bring the world into the 21st century.  Naomi, we and so many women are indebted to you!!! We hope you continue to have the strength and support for your vital work.