Ottey, now 38, quit her job as a microbiologist and founded PCOS Challenge: the National Polycystic Ovary Syndrome Association, which has grown to 50,000 members.
The non-profit organization, based in Atlanta, where Ottey lives, is working to get PCOS out of oblivion.
And if the popular culture is an indicator, the disorder is on the lookout: millions of viewers have been struck by Kate’s struggles with PCOS-related obesity and infertility on the NBC show & # 39; This is Us & # 39 ;.
Nevertheless, this enigmatic reproductive and metabolic syndrome remains underexposed, underfunded and under-diagnosed. Even the name is problematic, because experts now realize that some women with the syndrome have no cysts in the ovaries and that some with cysts do not have the syndrome.
“I want a precise name, I do not like the name, but changing the name is controversial,” said Katherine Sherif, a PCOS specialist at Thomas Jefferson University in Philadelphia. “One reason to keep the name is that doctors and women finally become more aware of what it is.”
PCOS Challenge and its allies have helped. Last month, for example, the organization convinced people at a number of monuments around the world – including Calgary Tower, Perth Concert Hall and Niagara Falls – to light them up in green-blue, the PCOS consciousness color.
Patients who have become PCOS patients wear teat bracelets to increase the awareness of their condition.
Ottey and about 25 “cysters” gathered at the foot of the Philadelphia Electric Company building on September 1, while the crown lights shifted “World PCOS Day” intermittently.
After speeches, a group with an ambitious banner stated: “Make public polycystic ovarian syndrome public health priority.”
“Too long,” Ottey said, “PCOS has been a silent epidemic.”
What exactly is the cause of PCOS remains unclear. It is a set of endocrine and metabolic defects, probably caused by one or more genetic deficiencies. Although severity varies, women with PCOS have excessive male hormones, particularly testosterone, and rarely ovulation – which may or may not cause immature eggs to form cysts.
Symptoms may include irregular menstruation, obesity, hair growth in the male pattern or hair loss and acne.
The complexity PCOS was not appreciated when it was first described in 1935 by two American gynecologists, who found it rare.
To address complexity and improve diagnosis and treatment, the PCOS experts from around the world have drawn up the first international clinical guidelines in July.
Diagnosis requires two of the three crucial criteria: increased male sex hormones, menstrual periods that are irregular or rare and at least 12 follicular cysts on one or both ovaries.
The guideline includes complications, including sleep apnea, eating disorders, depression and endometrial cancer. It also reflects the ongoing debate about the pillars of management.
Contraceptive pills containing estrogen and progestogen are the first-line treatment because they suppress testosterone and regulate periods. But many experts advocate adding or replacing metformin, a diabetes drug that reduces insulin resistance, the aspect of PCOS that predisposes women to obesity, diabetes, hypertension and heart disease.
“Several times a week, women tell me their OB-GYN said:” Take the contraceptive pill and come back if you want to get pregnant, “said Sherif.” But my go-to- medicine is metformin, because I hope to treat the underlying problem. If you are less insulin resistant, make less testosterone. ”
Dokras said she and Richard Legro, a reproductive endocrinologist at Penn State College of Medicine, are about to start a government-funded study “to see if contraception or metformin is the best.”
A newer research area concerns the anti-Mullerian hormone, a substance made by cells in the ovaries of the ovaries, which is increased in most women with PCOS.
In May, French scientists published a study – carried out with mice – which suggests that high AMH levels during pregnancy may reprogram the fetus and cause PCOS in adulthood.
The researchers turned PCOS symptoms into maturing mice using cetrorelix, a medicine for fertility. The findings, they wrote, provide “a new potential therapeutic way to treat the condition during adulthood.”
Meanwhile, the lawyers lobby for research funding, just like the toll of PCOS. “Rheumatoid arthritis, multiple sclerosis and lupus combined”, says their change.org petition.
Denine Kirby learned to manage her PCOS with changes in lifestyle, one small change at a time.
Kirby was thin for much of her life.
“But when I turned 30, I noticed that my body was changing,” she said. “I started to arrive, although I did not change my diet, I developed acne, I have never had acne as a teenager.”
She was diagnosed with PCOS at the age of 38. By that time she weighed more than 200 pounds and had hypertension, diabetes and anxiety. “My testosterone was at the same level as a man, I had her on my upper lip and chin, and people started calling me” Mr. & # 39; “she said.
Now, at 48, the West Philadelphia resident is a slender and serene spinning and yoga instructor, a Temple University exercise specialist who works with older people to prevent falls, and a vegan who swears by quinoa and millet.
Her self-transformation started with a lunch-aerobics class. “I would just do what I could do,” she said. “I could not sustain a whole class.”
She started making long walks. A stationary bike added. Has followed a strength training class. She also gradually changed her diet and changed not only what she ate, but also how she felt and thought about it.
“I really had to train my mind and say to myself: I will not die and I will not faint when I’m hungry,” she said. “I would become grumpy and get people out, I really meditated and examined my feelings about food.”
Two years ago she got a lot of weight again and was sitting in the doctor’s office and boo-hayed. & # 39; Then she did her best again. This year, for the first time since her diagnosis, tests showed that her blood glucose is healthy, not the diabetes border.
“Most people do not understand that it is a process,” she said. “They want success at night – you really have to be disciplined, but at the same time I’m telling women to stop slapping yourself, maybe the goal, if you normally have two soft drinks a day, If you slip, you say: & # 39; Tomorrow is another day. & # 39; ”
Latasha Shepherd at home, with photos from her marriage four years ago. She and her husband recently had a bariatric operation.
When her mother suggested bariatric surgery years ago, Latasha shuddered Shepherd-Brown from the idea that she needed something she saw as a draconian weight loss method.
“I thought,” No, I’m young and I can do it myself, “said the resident from Philadelphia.
Diets and exercise are the cornerstones of controlling PCOS-related obesity. But as Shepherd-Brown discovered, the insulin resistance that causes obesity causes a vicious metabolic circle. Pounds pile up quickly and mercilessly and do not come off despite caloric restriction and willpower.
So last month, the 33-year-old preschool teacher had a part of her stomach removed during a stomach operation. She lost nine pounds in the first week after the operation (although she also had to go to the emergency room for some dehydration).
Many considerations and a lot of research led to her decision. Weight loss surgery is known to prevent or even treat diabetes by normalizing blood sugar levels.
Dropping kilos can also relieve menstrual irregularities and pain, which they have all plagued since puberty.
“Diabetes is running in my family,” she said. “I’m really going to try to ward off this.”
Ronn Brown, her four-year-old husband, was no longer supportive. He also opted for an operation to treat his own serious obesity.
Together they have preoperative evaluations and & nutritional preparation & #39.
The couple also considered their wish to have a child in the coming years. On the one hand, experts do not recommend bariatric surgery to treat infertility because the risks and benefits are unclear and Shepherd-Brown does not know if she has problems getting pregnant. On the other hand, the stories of friends are reassuring.
“I have seen that many women with PCOS have success with diabetes and fertility after surgery,” she said.
Hannah Tabeling, 17, and her mother, Ashley Levinson, have increased the awareness of PCOS while coping with her health challenges
Puberty can be stressful and children can be cruel.
It is therefore not surprising that Hannah Tabeling went through a torment as a 14-year-old 14-year-old with severe acne, hair growth on her chest and stomach problems.
“I’ve seen a lot of bullying during high school,” she said. “My fear became worse, to the point where I would cry every other day.”
This is the surprising part: in a period of a few years, amidst an odyssey of doctors, medicines and changes in lifestyle to manage her PCOS, Tabeling found her way – and her voice.
She had the benefit of support from her mother, Ashley Levinson, a long-term PCOS victim and lawyer.
But Tabeling – now a 17-year-old, straight-A student with a red belt in kung fu – also had courage. Last year she testified before Congress to insist on a resolution recognizing the seriousness of the disorder.
“Today I am still afraid to get all the weight back, that I can grow more hair in strange places, that my acne can come back,” she told the lawmakers. “When I get older, I may never be able to have children, so I want a future where there is … a drug specific to PCOS, I want more doctors to know what PCOS is and how to diagnose it.”
Being pronounced is not easy, but Tabeling recommends it.
“Women and teenagers should not feel like they have to hide,” she said. “That was my problem, I’m afraid to talk to people, but recently I came to a point where I realized I can not do that, I need a voice.”