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PCOS Advocacy “I WOULD RATHER BE ALIVE with PCOS THAN DEAD WITHOUT IT” PCOS Adoption Story

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PCOS Advocacy “I WOULD RATHER BE ALIVE with PCOS THAN DEAD WITHOUT IT” PCOS Adoption Story PCOSJAN - MAR 2018 | VOLUME 3 | ISSUEChallenge 1 WHAT NO ONE TELLS YOU ABOUT INFERTILITY HISTORIC YEAR FOR PCOS Advocacy “I WOULD RATHER BE ALIVE WITH PCOS THAN DEAD WITHOUT IT” PCOS Adoption Story HOW TO TALK TO YOUR PARTNER ABOUT PCOS CHALLENGE JAN - MAR 2018 VOLUME 3 ISSUE 1 1 PCOS-RELATED MENTAL HEALTH ISSUES CONTENTS 3 Letter from the Executive Director 4 8 I Would Rather Be Alive with PCOS 4 Than Dead without It By Audrey Holsclaw How to Talk to Your Significant Other About 8 PCOS-Related Mental Health Issues By Gretchen Kubacky, PsyD 12 18 Multiple Disorders in One Body 12 By Felice Gersh, MD Heart Disease and PCOS 18 By Catherine Koutroumpis, RN, CWOCN PCOS and Breastfeeding Featuring 22 Lisa Marasco, MA, IBLCC By Renetta DuBose 22 26 25 PCOS Diva/PCOS Challenge Confidence Grant Historic Year for PCOS Advocacy: 26 U.S. Senate Passes PCOS Resolution Understanding the Scope of PCOS from the 30 Patient Support Nonprofit Perspective By Sasha Ottey, MHA, MT (ASCP) 34 PCOS Challenge 2017 Highlights 48 Thank You to Our 2017 Supporters 34 The Things No One Tells You About Infertility 58 58 By Jennifer "Jay" Palumbo My PCOS Adoption Story 60 By Dina Stonberg 60 Remembering a Pioneer: 64 PCOS Dietitian Monika Woolsey By Gretchen Kubacky, PsyD 64 An Integrative Approach to Wellness and 66 Fertility in Women with PCOS By Maureen Kelly, MD 70 Mark Perloe, MD Receives Ricardo Azziz/ 70 PCOS Challenge Advocacy Leadership Award 71 The Three Worst Diets for PCOS 71 Featuring Julie Duffy Dillon, MS, RD, NCC, LDN, CEDRD EDITORIAL CREDITS LETTER FROM THE EXECUTIVE DIRECTOR Editor-in-Chief n 2017, PCOS Challenge: Sasha Ottey, MHA The National Polycystic I Ovary Syndrome Associ- Graphic Design ation worked with our ad- Olena Lykova; William R. Patterson visors, advocates, partners and members on Capitol Photographs Hill to put polycystic ovary Life Sciences Institute; William R. Patterson syndrome on the national agenda in the U.S. Con- Writers gress in an efort to recog- Danielle DeUrso; Renetta DuBose; nize the seriousness of the Amy Nguyen syndrome and ofcially designate September as PCOS Awareness Month. Members of Editors Congress introduced two historic resolutions - H.Res.495, and S.Res.336 which passed in the U.S. Senate on December 21, Vicky T. Davis; Kali Mincy, MS; Engrid Roy, MA; 2017. This year, we will continue to provide a platform for you to reach out to your legislators about the need for PCOS to be Contributors treated as a public health priority. Felice Gersh, MD; Maureen Kelly, MD Gretchen Kubacky, PsyD; Dina Stoneberg; PCOS Challenge partners with some of the world's leading Catherine Koutroumpis, RN; researchers and healthcare providers in the field to provide Audrey Holsclaw; Sasha Ottey, MHA; education to those affected by PCOS and healthcare provid- Jennifer Palumbo ers. Be sure to sign up to our mailing list for notifications about 2018 PCOS awareness and advocacy events, includ- Sponsorship/Advertising Inquiries ing the PCOS Awareness Weekend, PCOS Advocacy Day, and Call (404) 855-7244 or visit other upcoming 2018 events. PCOSChallenge.org/pcos-contact In 2018, international PCOS advancements include the first PCOS study in Sub-Saharan Africa that will commence Disclaimer thanks to a collaboration between Prof. Richard Adanu at The contents of PCOS Challenge magazine the University of Ghana and Dr. Ricardo Azziz at the State are for informational purposes only. The con- University of New York. PCOS Challenge was also invited to tents are not intended to be a substitute for India for international PCOS educational activities this Feb- professional medical advice, diagnosis or ruary, and the International Guidelines on PCOS updates treatment. Always seek the advice of your will be released mid-2018. We advocate for a patient-cen- physician or other qualified healthcare provid- er with any questions you may have regarding tered approach to PCOS research and care, one where our a medical condition. voices are included and respected as patients work togeth- er with researchers, healthcare providers and legislators for No part of this publication may be reproduced a better future and a cure for PCOS. or utilized in any form or by any means, elec- In good health, tronically or mechanically, without written per- mission from the publisher. Sasha Ottey Executive Director © Copyright 2018 PCOS Challenge, Inc. PCOS Challenge: All rights reserved. The National Polycystic Ovary Syndrome Association PCOS CHALLENGE JAN - MAR 2018 VOLUME 3 ISSUE 1 3 Mental and Emotional Wellness I would rather be alive with PCOS than dead without it – Audrey Holsclaw here was always something wrong with me. My par- ents, without Tmedical degrees and with their own hang ups, named it being fat. In their minds, being fat had nothing to do with whether or not my ovaries were functioning properly. In high school, I nursed the bleakness of what I wrongly thought was teenage angst with food, drugs, and alco- hol. I was on my period more often than not and in crippling pain, and my goal in life became numb- ness. With the poor coping mechanisms of substance abuse and eating disor- ders, I kept a 4.0 GPA and graduated near the top of my class. By college, my world could only exist as black and white. I was either drunk, high, and numb or not. Food filled the hole through the middle of me, but it didn’t make my pe- riod stop and it certainly didn’t manage the anger, anxiety, and depression 4 PCOS CHALLENGE JAN - MAR 2018 VOLUME 3 ISSUE 1 that were my everyday uncomfortable. Canna- orders Anonymous, the authors Geneen Roth bis, carbohydrates, and liquor made being alive, and Thich Naht Hanh, and a skill set that made if one could even call it that, tolerable. But it re- being angry, sad, or even exuberantly happy ally wasn’t more than just trying to breathe. The manageable. She also recommended I get on eating disorder morphed into a committee in my antidepressants because brain chemistry being brain that judged everything I did on an unrea- out of whack seemed obvious to her. We worked sonable scale with goals that could never be met adamantly on my learning to be comfortable with and progress that could never be seen. It made being uncomfortable, and with the help of those the mood swings more violent, the anxiety be- skills, self-care, and new brain chemistry, I got came rage, and, like a white girl during autumn okay with being a human, being married to a fel- at Starbucks, I lost my ability to “even.” low human, and became the best version of me And here, on the other side of 2008, af- When I met my husband, long before Taylor Swift’s song “Blank Space,” he called me “a ter completing the PCOS Challenge tele- nightmare dressed like a daydream.” I was out vision show, after having two kids, after of my mind. I was at the gym with a personal building a better marriage with my hus- trainer three hours a day, six days a week and band, after working with numerous doc- putting on two pounds a week. I would fill my tors and therapist, and after Crossfit, I car with Taco Bell and cry while I ate in the park- like being alive. I’m impressed with what ing lot. We fought constantly, and my husband my body has accomplished. I’m proud of knew something was terribly wrong with me, but overcoming substance abuse and using every doctor simply said, “Well, if you lost a lit- my experiences of miscarriage, depres- tle weight...” The emotional abuse I directed at my husband very nearly ended our marriage. He sion, anxiety, and PCOS to help others. was afraid to tell me something was really, really I would rather be alive with PCOS than wrong with me. dead without it. We had been married a year when I stopped going to the doctor. Then, my period lasted 121 days, and my husband’s hemophobia-induced was born in nausea prevented any intimacy, so I went back Audrey Holsclaw Grand Rapids, MI, in 1983. She received a to the doctor. My gynecologist said I had PCOS bachelor of arts in English from West Vir- along with metabolic disorder. Being crazy had ginia University in 2006. In 2007, she mar- a name, but it offered no path to navigate to- ried Aaron Holsclaw. After working in the IT wards health. I was sent packing with birth con- industry after graduation, she gave Aaron trol and a generalized, “You’ll never have kids.” two children, Delilah, who is three years We were devastated. Our dreamy white picket old, and Margot, who recently celebrated fence morphed into an insurmountable, barbed her first birthday. She currently resides in wire-topped wall. Suicide seemed preferable to Canonsburg, PA, where she is an attentive the failure of divorce and being a morbidly obese wife, patient mother and a sarcastic friend. hermit with no family or friends to speak of, but my husband and I started looking for help out- side of ourselves. We found PCOS Challenge. View the Care For Your Mind Post to read We were no longer alone. Dr. Gretchen’s notes and advice for Audrey and others facing similar challenges. I found a sliver of light in a terrible darkness by way of a therapist introducing me to Eating Dis- PCOS CHALLENGE JAN - MAR 2018 VOLUME 3 ISSUE 1 5 6 PCOS CHALLENGE JAN - MAR 2018 VOLUME 3 ISSUE 1 cAll to action Your st ry Matters The PCOS 10-for-10 We are seeking 100 people to share their PCOS story at ZubiaLive to help spread awareness.
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