Sasha is a wonderful woman. I met Sasha Ottey a few years ago, when I was at the very beginning of my journey into the world of PCOS, and of the women who live and deal with the symptoms of the syndrome every day.
Since then she has taught me really a lot: working for passion, intense dedication, full commitment, longing for helping and making something concrete to support women all around the world.
She is my greatest source of inspiration, she made me strong and brave enough to found this blog. Actually, I will always thank her for being at my side in this adventure of mine.
In this interview, Sasha is going to speak passionately about her history and her future plans. Most of all, she is going to give us a short review of the careful work she is carrying on in order to support not only American women, but all the women all around the world.
I think her words will help all the readers as past experiences, sufferings, and dissatisfaction may be (and should be) the starting point and the fuel to make a change and get stronger.
LF-PCOS: Sasha, thanks a lot for your readiness to answer the questions of the LotusflowerPCOS Nutrition Center. Your words will be very useful to the women all around the world. How did you first ‘meet’ the Polycystic Ovary Syndrome? What were the first signals of the Syndrome? How did it become part of your life?
S: I was first diagnosed with polycystic ovary syndrome by a gynecologist after I had stopped having my menstrual cycle. I was extremely concerned because I knew I was not pregnant. The gynecologist took my history, did blood tests and diagnosed me with PCOS. I was in my late 20s. Looking back at my life, I had been experiencing PCOS symptoms since adolescence. Most notable symptoms were weight gain and hair loss. I saw dermatologists and other doctors but did not mention symptoms that I didn’t think relevant to my visit. For example, when I went to see a dermatologist for hair loss, I didn’t mention my weight gain or menstrual cycle. Those doctors did not ask me about my menstrual cycle, so it took well over 10 years since the onset of my first symptoms to get diagnosed.
LF-PCOS: Can you tell us about the diagnostic procedure? How did you get the PCOS diagnosis? How long did it take?
S: I got diagnosed right away when I presented to my doctor with an absent menstrual cycle. It was easier for the doctor to recognize that I may have PCOS because of my body size. She did blood tests to test my insulin and other hormones and a transvaginal ultrasound that showed polycystic ovaries. Before, when I was on oral contraceptive pills, my menstrual cycles seemed regular, so my other symptoms such as hair loss, acne and weight gain were overlooked and a PCOS diagnosis was not considered.
LF-PCOS: What was wrong with your diagnostic procedure? What made it difficult?
S: Once I got diagnosed with PCOS, I felt relieved that there was a name for what I was experiencing. The problem was that after the diagnosis, there was no real support or much information from my physicians and other healthcare team about how to manage and live healthier. Also, I had experienced symptoms for over a decade without a diagnosis because I went to different doctors for different symptoms, making it difficult for a diagnosis if none of my doctors spoke to each other or had the full picture. This is why it is so important for each doctor to get a full history from every patient.
LF-PCOS: What does living with PCOS mean? What problems does a woman with PCOS have to face in her everyday routine?
S: Over the years, my view on what it means to live with PCOS has evolved and expanded. Because PCOS is a syndrome instead of a disease, each woman may experience a different combination of symptoms. Some cases of PCOS be milder or more severe than others. Even though PCOS may be frustrating and difficult to manage, one positive thing for those of us with the syndrome is that we become more aware of our bodies and health conscious. Most women with PCOS are very much in tune with and knowledgeable about their bodies. We become aware of how our bodies respond to various foods or forms of exercise. For many, PCOS is a daily battle with not only the physical symptoms such as excessive hair growth or acne, irregular menstrual cycles and infertility, but also the emotional and mental aspects such as depression and anxiety. Managing PCOS requires an individualized and integrative approach that includes caring for physical, emotional and mental health. At the core of living well with PCOS is ensuring that you eat well and move well, feeding your body with what it needs and protecting it from things that will cause harm including the wrong foods, toxic substances and lack of exercise.
LF-PCOS: Confusion and dismay, PCOS Challenge was born from there: the National Polycystic Ovary Syndrome Association supports a lot of American women and makes them aware of PCOS. What is the PCOS Challenge? How is it helping the women with PCOS?
S: PCOS Challenge: The National Polycystic Ovary Syndrome Association was born from my own dissatisfaction with the lack of care, information and support that I received after being diagnosed with PCOS. After doing research and realizing that there are millions of women, girls and families who are impacted by PCOS and were also searching for support and answers, I was moved to do something to empower others to gain the tools they needed to combat PCOS. We created an online support platform at PCOSChallenge.com, the PCOS Challenge radio show and the PCOS Challenge television show, and later the PCOS Challenge magazine to provide a source of information credible and support. Some of our most exciting programs are our PCOS Awareness Symposia, Bolt for PCOS 5K and PCOS Awareness Weekend event. It is such a great feeling to gain knowledge about PCOS and how to better manage the syndrome as well as meeting other people who understand what you are going through. These events are life-changing.
LF-PCOS: What about the future: what is PCOS Challenge planning for 2018?
S: Advocacy, awareness, education and more advocacy! Most people may not be aware of the history or the politics of PCOS. Polycystic ovary syndrome is the most common endocrine (hormone) disorder in women. It affects greater than 10% of women worldwide and in some parts of the world, almost one-quarter of women and girls have PCOS. PCOS is an epidemic. It is an urgent public health concern that is not only the leading cause of female infertility, but also leading to some of the greatest burdens on health and quality of life such as diabetes, cardiovascular disease risk factors and psychosocial disorders. So why is there such little knowledge and support for PCOS? Why has it rapidly become such a global problem? It comes down to research – the type of research and the quantity and quality of research. PCOS, the most common hormone disorder in women, receives less than 0.1% of the research funding from the National Institutes of Health. PCOS has historically been treated as a reproductive disorder and not much else, even though research shows its connection to metabolic dysfunction, cardiovascular dysfunction, psychosocial disorders, cancer, eating disorders, skin disorders, liver disorders and more. PCOS has evolved from being a gynecologic and reproductive disorder to a multi-organ system disorder. However, very little research is being funded to study the other comorbidities of PCOS. It is now known that there is a connection between infertility and overall physical health. Much of our advocacy work is for increased funding for PCOS research, and increased research into connection between PCOS and its comorbidities. We also advocate for research funding for young researchers who often don’t get funded and choose a different research or career path due to lack of opportunities. This is stifling advancement and putting women with PCOS and our future at even greater risk. Therefore, much of our programs for 2018 and beyond will be focused on advocacy and awareness activities.
LF-PCOS: Your personal experience has helped a lot of women and will help many more, they know and take care of themselves, thanks to your advice. What would you like to tell women about their future?
S: Most of what you will hear about PCOS is about the challenges because of the limited knowledge about PCOS and treatment options. It is my job to acquire as much information as I can about the entire scope of PCOS. There are even good things that stem from PCOS. I have personally become a stronger, more compassionate, knowledgeable and empathetic person. I have met thousands of people who have been impacted by PCOS. Many struggled for decades, and many successfully manage their condition by changing their lifestyle and finding the treatment formula that works best for them. Others have found peace and improved mental health in accepting things about how PCOS affects their bodies. The most frustrating thing is that there is no one diet, exercise program, supplement or medicine that will work the same for everyone with PCOS. My constant observation is that women with PCOS are creative, strong and resilient. Most of all, it is important to know that even though we may have to fight harder for what we want and need, despite these healthcare and quality of life hurdles, women with PCOS are naturally strong. It is in our genes – we are tougher than PCOS!