OBGYN.net: The Universe of Women's Health

Getting Pregnant When Syndrome O

Is Getting In Your Way

Part II

Ronald F. Feinberg M.D., Ph.D., OBGYN.net Editorial Advisor and Lesa Childers., OBGYN.net Editorial Advisor

Washington, D.C. (AP), September, 2051. U.S. Surgeon General Michaela Smith announced today that a major health and reproductive problem afflicting millions of women for over a century has effectively been eradicated. Known by various names — Stein-Leventhal disease, polycystic ovary syndrome, and Syndrome O — this scourge had become the #1 cause of female infertility and other gynecologic problems earlier in this century. "Towards the end of the 20th Century it was recognized that fertility and metabolic function were closely intertwined," noted Dr. Smith, "And that eradication of Syndrome O necessitated a full scale assault on the environmental insults of that era — dietary habits, processed foods, sedentary modes of transportation, and electronic communications and conveniences."

The Surgeon General noted that when she started medical school in September, 2001, the curriculum was only partially geared towards teaching about metabolism and disease. "I think American society really started attending to its health at the beginning of this Century, as events in the world prompted much more introspection and motivation," said Dr. Smith. "Out of necessity, democratic societies very quickly adopted lifestyle habits of earlier times that were viewed as quaint and out-of-date. For example, millions of people started walking or bicycling to work, school, and stores to save precious oil and natural gas. Countless others created community fruit and vegetable gardens, even in metropolitan areas, as ways to assure that food sources were fresh and plentiful. We garnered renewed respect for our natural resources, and family activities were more focused on living and learning from the land. It was an amazing transformation to witness, but it probably saved countless millions from premature death and disease."

Syndrome O has emerged as a major women's health and fertility issue. From a historical perspective, as described in Part I, the roots of Syndrome O date back to the rare polycystic ovarian disorder first described by Drs. Stein and Leventhal in 19351,2. In 2001, Syndrome O — defined as the triad of Ovulation disruption, Ovarian confusion, and Overnourishment — has become a leading scourge of reproductive health for millions of women in the U.S. and around the world. In Part I we described the link between Syndrome O and the insulin overproduction health problems caused by Syndrome X. Based on this knowledge about insulin, we also summarized medical strategies for overcoming ovulation disruption and ovarian confusion.

Syndrome O, believed to affect 5 to 10 million women, impacts directly upon reproductive function, body image, and current and future health.

Calming the Insulin Storm. . . For Your Fertility's Sake

Insulin is an incredible hormone. It keeps us alive by continuously and efficiently shuttling sugar fuel into every cell within our bodies. But too much insulin is harmful, particularly to women. Excessive insulin, or hyperinsulinemia, causes women’s bodies to convert excess sugar fuel into fat and, in short order, a vicious cycle of ever-increasing insulin production commences. Hyperinsulinemia is the body's way, or more specifically the pancreas' way, of compensating for a deep-seated systemic process known as insulin resistance.

Insulin resistance is caused by a dysfunction or uncoupling of one or more enzymes responsible for insulin's action within cells. One reasonable theory for the widespread initiation of insulin resistance in our society suggests that chemically-modified lipids found in many foods, (i.e. partially hydrogenated oils known as trans fats), make their way into the lipid bilayers of cell membranes. When these foreign lipids perturb the outer cell membrane, insulin can't bind to its cell membrane receptor effectively3,4. This is analogous to an airplane trying to land on a crooked runway. The result is ineffective insulin action for shuttling glucose fuel into cells, and a compensatory hyperinsulinemia. Many other studies have demonstrated defects of insulin-induced enzyme cascades and glucose transport in tissues from women with ovulation disruption and ovarian confusion5,6. The search for a genetic basis for Syndrome O has yielded information about regions of genes that some affected women may have in common, but a specific gene defect per se has not been found7. Worldwide and diverse ethnic representation, along with apparently normal fertility in parents and grandparents of Syndrome O women, argues against a specific gene abnormality.

In a woman’s reproductive system, the insulin family of hormones is absolutely required for many organ functions that are uniquely female — the nourishing and maturing of eggs, the preparation of the womb for conception, and the maintenance of a healthy pregnancy. With Syndrome O, improper levels of insulin hormones exert a harmful effect on the female system — the ovaries become confused, egg release (ovulation) is disrupted, and fertility and pregnancy are hampered. Thousands of scientific articles have been written about the normal and not-so-normal impact of insulin and related hormones — insulin-like growth factors — in female reproductive processes8.

Part I of this article described some of the insulin-lowering medications which have been used to combat hyperinsulinemia for women with ovulation disruption and ovarian confusion. These medications allow the ovaries to adjust to a more normal insulin environment, with reductions in androgen production and improved chances for follicular development and ovulation. We believe these medications provide a short-term metabolic jumpstart, but are skeptical about their longer-term ability to "cure" Syndrome O. Consequently, it is imperative that all women affected by Syndrome O consider making a personal and long-term commitment to lifestyle strategies designed to overcome hyperinsulinemia. Such strategies have proven highly effective in minimizing the risk of developing type II diabetes9, an insulin resistance epidemic currently affecting 20 million American women and men.

Get Real... And Get Strategic!

"I feel overwhelmed, and I need to be pointed in the right direction,” is the universal battle cry of Syndrome O women. Whether justified or not, we all feel overwhelmed at different times and many of us become inefficient, depressed, and withdrawn when faced with too many tasks and responsibilities. Women with Syndrome O have additional tough challenges of lifestyle, health, and fertility to think about. We believe: “If it is important to you, you will accomplish it," and here are the first few steps to consider:

1) Don’t panic. Help for Syndrome O comes through education, determination, meditation, and a strong internal desire for self-improvement and enhanced well being.

2) Start thinking. Imagine the unhealthy, insulin-spiking daily junk calories that will not be missed, better quality insulin-moderating foods that can be eaten without guilt, and important insulin-busting opportunities for activity and exercise.

3) Begin living. Dr. Feinberg first presented the concept of the Syndrome O Survival (SOS) StrategiesTM to his PCOSupport group in Delaware, followed by a plenary presentation to the international PCOS Association annual conference in Philadelphia in June, 2001. We believe that the SOS Strategies provide a blueprint for a lifelong fighting chance to improve fertility and health.

The SOS Strategies invoke 3 very important principles — Organization, Optimization, and Offering. Like the legs of a strong and stable 3-legged stool, we believe that each of these three Strategies are equally important to women with Syndrome O, leading to enhanced healthfulness and happiness in their lives. This 3-pronged strategic approach is balanced, and encourages equal devotion to each Strategy.

Within The SOS Strategy of Organization, it is recommended to:

1) Organize Your Goals and Desires. What do you want to achieve in life? What are your strengths? What are your talents? How do you envision yourself and your family in one year? In five years? In ten years? Is your career or profession a priority? How does time for family and friends fit in? Is having a child or more children a strong desire? Are good health and quality of life important?

2) Organize Your Schedule and Time. Evaluate every hour of your 168 hour week. How many hours at work? How many hours with family? How many hours at rest? How many hours at chores? How many hours outside the house? Could you organize your time in such a manner that there is sufficient time to devote to the other Syndrome O Survival Strategies?

3) Organize Your Approach to Health Evaluation and Treatment. Make lists of the Syndrome O symptoms that bother you the most. Seek help from the right health care providers. Read and learn everything you can. Come to initial consultations armed with questions. Be prepared to arrange your life schedule to accommodate treatments.

The SOS Strategy of Optimization provides an uplifting, positive opportunity to focus on insulin-busting techniques:

1) Optimize Your Life Activities. Be pro-active towards the life goals you identified in The Strategy of Organization. Are you happy at work? Can you optimize your attitude and activities to bring more joy to the job? Are you content at home with yourself and your loved ones? Can you optimize your home life to bring greater joy to yourself and your family? Can you optimize your relationships with other friends and family?

2) Optimize Your Nutrition. Make lists of the foods you like and dislike, and create personalized lists of the foods that are Syndrome O healthy. Plan ahead to eat healthful and balanced higher protein, lower carbohydrate meals on a regular basis. Set a reasonable initial goal for weight loss, such as the “anyone can lose 5%” plan. Follow the “calories in = calories out” rule. Water is your friend, but only when sugar-free. Ask family and friends to respect your Optimized Diet goals, and ask them to help you with your new optimism and determination.

3) Optimize Your Fitness. With an organized and prioritized 168 hour per week schedule, you should be able to identify 5 hours devoted only to physical activity. Make lists of the physical activities you enjoy — walking, bicycling, swimming, dancing, gardening — and do any of the activities on the list for at least 5 hours/week. That will burn one full day's worth of food calories, shifting the “calories in = calories out” equation in your favor.

The SOS stool will surely topple if attention is not paid to The SOS Strategy of Offering:

1) Offer Your Attention to Loved Ones and to Yourself. Do you spend enough quality time with family or friends? Could this time be spent in a more physically active way? Could quality time be spent in a more nutritionally healthful way? Do you spend enough time attending to yourself? By offering more attention to your own self-improvement, it will become natural to offer compassion to important people in your life.

2) Offer Your Time Outside the Home. There is a whole community filled with important needs outside of your home. Could you offer any special service? Are you active in your house of worship? Is there a particular charity for which you could volunteer? Does your local school need tutors? Does the local school board need committee members? Is there an upcoming political campaign that interests you?

3) Offer Your Assistance to Others with Syndrome O. A crucial aspect to successful SOS Strategies is to teach others about the personal approaches that have been helpful to you. No one woman will follow the same path to success with the SOS Strategies.

Networks of Support — Steps to Awareness

Thousands of women are already working hard to improve their physical and emotional wellbeing, with the knowledge that their fertility, pregnancy, and health depend upon it. There is no doubt that many Syndrome O symptoms can negatively affect self-esteem and body image, particularly when loved ones are confused and are trying to help. As such, it has become clear to those of us in the Syndrome O / PCOS movement that specific Steps to Awareness are vital for Syndrome O women and their loved ones.

Many women find that sharing their experiences with others facing similar challenges is the best way to stay motivated and on track to success. This development of relationships with others comes in many different forms, and the level of involvement depends greatly on the comfort zone of each individual. The pace of acquiring Syndrome O awareness is unique to each woman, but for those who find appropriate networks of support, we have witnessed amazing patterns of increased consciousness and personal empowerment.

Within this framework it has been our experience that each woman experiences five steps to Syndrome O awareness:

Step One -- Individual Sadness and Frustration: This typically begins before a woman is diagnosed or treated for Syndrome O. She realizes that her body is not functioning properly and she experiences many emotions tied to infertility and diminished self-esteem. She does not understand what is happening to her and is seeking answers.

Step Two – Group Sadness and Support: At this juncture, a woman finds there are others with Syndrome O who are dealing with similar frustrations. She feels motivated to share her feelings and to both offer and receive comfort from others "in the same boat".

Step Three – Group Enlightenment: Through education and sharing, the woman and her support group begin to find answers to their Syndrome O challenges. There is a feeling of encouragement and a desire to share this enlightenment with others. The Polycystic Ovarian Syndrome Association (PCOSA), now boasting thousands of members, was formed in exactly this manner. Since 1997 the PCOSA has developed a support group network with chapters meeting across America and internationally (www.pcosupport.org). The PCOSA works closely with OBGYN.net, a very informative and comprehensive physician-reviewed women's health informational Website.

Step Four – Individual Motivation: After gaining the knowledge that she can make a difference in her own health, along with the positive support of others, the woman is now motivated to make changes, utilizing the SOS Strategies. Neither she nor her doctor has all the answers, but she is ready to try!

Step Five – Discipline for Change: With continued support and with personal motivation, the woman explores her lifestyle options, finds what works for her, and develops the discipline to permanently implement the new practices into her life. She knows that each day is an opportunity to make the right decisions for improved health!

Acknowledge the ongoing Syndrome O challenges in your life. With self-improvement and compassionate medical care underway, women with Syndrome O should revel in every small victory they achieve. Through empowerment with the SOS Strategies, health and attitude will improve, weight will drop, energy levels will increase, and the ovaries and reproductive system will be given a break from the bombardment of excess insulin hormones. Dr. Feinberg witnesses this transformation everyday in his clinical practice; Lesa Childers promotes this philosophy in her support groups. We find that when the SOS strategies are implemented, fertility treatments are more efficient, and pregnancies turn out healthier. To this end, we thank the American Infertility Association for the opportunity to share this information and philosophy.

About The Authors

Dr. Feinberg is a Board-certified reproductive endocrinologist, and the IVF Medical Director for Reproductive Associates of Delaware, located in Newark, DE on the campus of Christiana Care Health System. He is an Associate Professor (adjunct) at Yale University School of Medicine in the Department of Obstetrics and Gynecology. He was the Conference Medical Chair for the 2001 PCOSA Conference, and Chairs the PCOS Pavilion of obgyn.net. Dr. Feinberg is currently writing a book entitled "Giving Your Fertility A Fighting Chance When Syndrome O Challenges You", to be published and released by Penguin Putnam in 2003.

Ms. Childers is CEO of PCOStrategies, Inc., a non-profit 501c corporation committed to Education, Motivation, and Stimulation for women with Syndrome O and 'polycystic' ovaries.  She is a recognized national leader in the PCOS advocacy and support movement, serving as the Mid-Atlantic United States and International Chapter Development Coordinator for the PCOS Association. She has been responsible for initiating 14 PCOSupport Chapters in 7 states, and was a contributor to Dr. Sam Thatcher's best-selling book about PCOS10. She was recently appointed by the AIA to assist with PCOS Division Development. Ms Childers works as the Regional Coordinator of Child and Family Case Management for the Smoky Mountain Center, a mental health agency serving the area west of Asheville, NC.

References

1. Speert, H (1980), Obstetrics and Gynecology in America: A History. Baltimore: Waverly Press, 1980.

2. Stein IF and Leventhal ML (1935). Amenorrhea associated with bilateral polycystic ovaries. Am. J. Obstet. Gynecol. 29: 181-91.

3. Mann GV (1994). Metabolic consequences of dietary trans fatty acids. Lancet 343:1268-71.

4. Lovejoy JC (1999). Dietary fatty acids and insulin resistance. Curr Atheroscler Rep 1: 215-20.

5. Dunaif A, Xia J, Book CB, Schenker E, Tang Z (1995). Excessive insulin receptor serine phosphorylation in cultured fibroblasts and in skeletal muscle. A potential mechanism for insulin resistance in the polycystic ovary syndrome. J Clin Invest 96: 801-10.

6. Dunaif A, Wu X, Lee A, Diamanti-Kandarakis E (2001). Defects in insulin receptor signaling in vivo in the polycystic ovary syndrome (PCOS). Am J Physiol Endocrinol Metab 28: E392-9.

7. Venkatesan AM, Dunaif A, Corbould A (2001). Insulin resistance in polycystic ovary syndrome: progress and paradoxes. Recent Prog Horm Res 56: 295-308.

8. Yen SSC, Jaffe RB, Barbieri RL (1999). Reproductive Endocrinology: Physiology, Pathophysiology, and Clinical Management. Philadelphia: WB Saunders Company, 4th Edition.

9. Hu FB, Manson JE, Stampfer MJ, Colditz G, Liu S, Solomon CG, Willett WC (2001). Diet, lifestyle, and the risk of type 2 diabetes mellitus in women. N Engl J Med 13: 790-7.

10. Thatcher SS (2000). PCOS: The Hidden Epidemic. Indianapolis: Perspectives Press.

Getting Pregnant When Syndrome O Is Getting In Your Way, Part I