Irregular periods, excess body hair, weight gain, dark patches, anxiety, infertility and body image issues make women feel less feminine. “PCOS can be overwhelming.“
Shruti Singhvi, a 21-year-old girl, remembers how she used to wake up at 2 a.m. every night only to cry for no reason at all. From taking birth control pills for two years and rigorous diets and an eating disorder, Polycystic Ovarian Syndrome (PCOS) had robbed her of more than just her fertility. “I remember that day, I took all my medicines and threw them away because I couldn’t do it anymore. Having PCOS is horrifying and traumatizing.”
Poly Cystic Ovarian Syndrome is a hormonal condition in which the ovaries produce abnormal levels of androgens (male sex hormones). There is a formation of multiple small cysts in the ovaries; while some women do have them, some don’t. The most common symptoms comprise irregular periods, excess body hair, weight gain, acne, infertility, and dark patches on the skin. It can also lead to co-morbidities such as hypertension and type 2 diabetes. It is said to impact mental and emotional well-being also. With excessive hair growth, acne, and obesity, body image issues are common in such women.
“I have been a happy and social kid. I gained around 10 kg in just six months with these medicines. I had dark patches on my neck, and whenever I used to go out to doctors, even when it was not for me, they still used to comment on my body. I was so conscious of my body that I hardly used to go out. Only to make things worse, I had an eating disorder,” Singhvi added.
According to The PCOS club of India, one in five women suffer from PCOS. Its prevalence has varied from 3.7 percent to 22.5 percent across Indian studies. Another study done in AIIMS, Patna, shows the impact of polycystic ovarian syndrome on the ‘quality of life of women in correlation to age, basal metabolic index, education, and marriage’. As per the research, around 64.3 percent of the women suffering from PCOS had no child and around 16 percent of the patients had high Body Mass Index (> 30). A study at York University shows that the women interviewed felt’ freakish, ‘abnormal,’ and not a ‘proper woman.’ Excess hair growth, irregular, absent, or disrupted periods, and infertility made them feel less feminine. Although there is a lack of research done on the mental health issues of PCOS patients, some studies show that such women experience elevated levels of anxiety and depression.
Anushree Mahajan, a certified PCOS coach, remembers how terrible she felt when the doctor told her that she might face problems in conceiving. She was prescribed birth control at the tender age of 15. After a 10year struggle, she gave up the treatment and began her journey to heal herself. She believes that the most frustrating part is that they have to look for information themselves as doctors don’t educate them enough. “I was angry because I wasn’t told what I should have been.”
“Not having a period, extreme hair loss or excessive hair growth and problems in conceiving make one feel less of a woman. PCOS is overwhelming,” she added.
Beauty standards make it worse for PCOS patients
PCOS has passed the test of time, but its prevalence has increased. Back in time, women and doctors hardly knew about it. As many women battle this problem, there has been a lack of verified information. This has worsened the situation as many girls try different harmful diets and medicines without proper consultation.
Rachna Agarwal, a nutritionist, explained that weight loss is difficult for PCOS patients due to the slow metabolic rate. Usually, a fad diet shows quick results but later leads to malnutrition and more weight gain. “If your weight loss diet leaves you tired, low on energy, leads to cramps or hair loss, and has no inch loss, one should immediately discontinue the diet. A calorie deficit is not the answer for these patients.” She added that it is essential to respect the genetic build of one’s body and never compare it with others.
Anushree Mahajan also did the same. “Doctors say that you need to lose weight, so we go to extremes. I did harmful things such as intermittent fasting and the keto diet, which worsened my PCOS.” She used to feel fatigued and had developed an unhealthy relationship with food.
She believes that doctors are seen as authoritative figures, and when they take all of this casually, many patients also do. She also feels that doctors are not equipped to treat lifestyle diseases, which adds to the problem as PCOS is primarily a lifestyle issue. The noticeable weight gain and the unkindness of society lead to low self-esteem and body image issues. “PCOS is in our face, and it just cannot be ignored.”
Society has defined the way one has to look, and if someone does not conform to it, they are subject to unsolicited advice and casual humour on their body.
Shruti Singhvi was sitting in the hospital aisle, tensed and crying over her grandfather’s condition when a middle-aged lady came up to her to tell her to take lemon water every morning. She said to her that this would help her reduce weight. “People are so scared about its physical symptoms, and the first thing they think is what if they become infertile. Nobody wondered about my mental health, not even doctors. People are just unkind to you in so many ways, making it even hard.”
After trying different diets for two years, her metabolism crashed. When she went off medicines, she went on a food binge which worsened her PCOS. “PCOS gave me trauma,” she said.
Genetics and poor lifestyle are said to be the common causes. However, the disease comes with an unclear cause. Its detection is based on a group of bloodtests and ultrasound rather than a single test.
PCOS symptoms are different for every woman, and hence this detection method might lead to delayed diagnosis or misdiagnosis.
Paati P., another PCOS patient, recalls that she never had irregular cycles until her acne flared up to the extent that she had to go to a doctor only to find out that she had PCOS. Despite having irregular cycles, Urvashi Mittal, a student, has not been diagnosed with PCOS as she does not have any cysts or disturbed hormonal levels. “I am frustrated as doctors tell me to take hormonal pills, but I do not have all the symptoms of PCOS,” she said. The complexity of the syndrome makes it difficult to be detected in some cases.
Dr. Sandhi Jain, a gynaecologist, explained that PCOS is a metabolic disorder in which hormonal imbalances occur. She said that this is a syndrome and thus it has multiple impacts on the body. Irregular cycles, obesity, high blood pressure, infertility, dark skin patches, and acne are how PCOS manifests itself. She also added that PCOS could occur in lean and obese bodies. “PCOS is diverse and complex, and it does not come with a definite cause, and every one showcases different symptoms,” she said.
The treatment generally comprises birth control or hormonal pills and basic lifestyle and dietary changes. Dr. Jain said that the treatment needs to be individualized, so she prescribes the treatment according to the age and condition of the patient. If the patient is an adolescent, she prescribes basic lifestyle changes and low dose hormonal pills whereas if the patient complains of infertility, then she focuses on regularizing their cycle, after which she gives them ovulation induction drugs.
Lack of information confuses experts
Many doctors see it as a metabolic disorder, while some look at it as a lifestyle issue. Dr. Navneeth Selvan, a PCOS researcher, a scientist at the Indian Council of Medical Research (ICMR) and the founder of Threos healthcare, believes that PCOS goes beyond just metabolism and thus is a lifestyle disorder. He explained that one of the most important components is gut health which is usually ignored. “The main problem in the treatment is that many young girls are put on these hormonal pills because the doctors are not aware or are not ready to accept the new treatments. On the other hand, patients do not give it any importance till it starts hampering their quality of life,” he said.
He suggested that birth control and hormone pills should be a last resort for the doctors as they have many side effects. He further explained how these pills work. The Hypothalamus, a part of the brain, releases the gonadotropin-releasing hormone, which goes to the pituitary gland. The gland then releases Luteinizing hormone (LH) and Follicular Stimulating hormone ( FSH), which are important for the menstrual cycle. During periods the level of these hormones increases and decreases in a rhythmic pattern. Every 15th day of the month, the LH spikes, pushing the egg out of the ovum. This is called ovulation. But in the case of PCOS, there is no spike in LH, and thus, there is no ovulation and no periods. The hormonal pills provide artificial LH and FSH to the body so that a favorable level of the hormone level is achieved for ovulation. These pills impede gut health which in turn impacts the overall well-being of a person. On the other hand, birth control pills stop ovulation and provide synthetic hormones, which then leads to artificial bleeding. These pills come with long-term problems like hair loss, weight gain, and excessive mood swings.
Ronita Alexander, a 43-year-old woman, was about to get married when the doctor told her that she would never be able to conceive. She was devastated. “I didn’t want the mark of being an infertile woman on my head.” After changing the doctor, the new treatment worked for her. However, she could not conceive a second child after having complications in her first pregnancy because of PCOS. Even today, she has to take her medicines 21 days a month. As a side effect, she gains about 2kg every month. Since she is a working woman, it isn’t easy to maintain a proper lifestyle every day. Juggling between hypertension and diabetes, she is still trying to battle PCOS.
Lifestyle and dietary changes can help control the problem as PCOS cannot be cured. Rachna Agarwal, thenutritionist, said that a high fiber diet with lots of salads and vegetables with low refined sugars or carbohydrates is the best solution. “Metabolic rate of womensuffering from PCOS usually is low so a long term plan with a well-planned diet and exercise will eventually show positive results.”
Dr. Selvan also suggested that holistic treatment is needed. He believes that people should be made aware of PCOS symptoms and the doctors about the new treatments. Highlighting another big issue, he said there is a lack of research on PCOS in India. He even added that it would take years for PCOS to become a national plan for the government.
“It is not just government, but the support from the individual institution would also help conduct studies and collect data,” he said.
With limited authentic information on PCOS, there is a lot of confusion among people and doctors. Bad experiences with the doctors have added to the problem. Shruti Singhvi was just 15-years-old when she was prescribed birth control by the best gynaecologist in Pune. She was very frustrated with pills and doctors after her long-drawn treatment. When she got a fungal infection, she was ready for it to worsen rather than see a doctor, as they would have given her medication.
Another woman with PCOS, Shruti Rao, said, “I was 23 when I went to that gynaecologist who asked me my symptoms and said it’s likely to be PCOS. When I told her the hormones were contributing to my weight gain, she dismissed me and said, ‘Just lose weight, for now, we can worry about this when you’ll have kids.’”
Gowthami Girish, a freelancer, narrated a similar story. “I have consulted five gynaecologists, and each one was way worse than the other.” ‘Come when you want to have a child until then, be on birth control’, ‘lose weight; otherwise, you cannot get pregnant, were some statements she heard from most of the doctors she went to.
Tanisha Kanan, a 22-year-old girl, said that when she visited a doctor, she was asked questions about her sex life in her mom’s presence. “I found it quite disrespectful when she wouldn’t take no for an answer and asked me questions about early pregnancy even when I told her that there is no such chance. I had to switch doctors as I couldn’t take it anymore. It was embarrassing and annoying at the same time.”
Paying the cost of having PCOS
The problem does not limit itself to its symptoms, but it takes a toll on the finances. A PCOS patient’s average spending per month is around Rs 5,000 or more on tests and treatment. The average cost of birth control varies from Rs 300 to 500. Other medications for hair growth, acne, shampoos, soaps, health supplements, and psychotherapy are additional expenses. Visits to gynaecologists and beauty treatments add to the cost of treatment. Fertility treatments are exorbitantly priced, with a single IVF cycle costing Rs 2.5 lakh on average. ShrutiSinghvi is afraid that once she starts earning, she won’t be able to afford the lifestyle and treatment she is getting now without her parents’ support.
Radha Sharma, a mother of a 22-year-old PCOS patient, feels the economic burden of the disorder every month. She remembers that the dietician had told her daughter to drink almond milk and use stevia drops instead of sugar. “I tried my best to provide that lifestyle to her, but eventually, I couldn’t. Her medication itself crosses Rs 4,000 every month. Apart from that, the doctor’s fees and tests add to the expense. These products are expensive, and it becomes difficult to manage the finances at times.”
Contrary to that, some people do not face such financial issues. Ishanka Agarwal, a businesswoman, said, “I belong to a relatively comfortable financial bracket; buying medication has been fairly easy and not too burdensome on the pocket. But I believe it will be tough for those in lower-income brackets. Any hormonal treatment that one takes for treating PCOS is expensive.” She added that the treatment is lengthy, and PCOS also brings a lot of underlying disorders. “Insulin resistance, weight gain, hair loss, thyroid problems, infertility are also expensive to treat,” she added.
The country’s insurance system focuses on hospitalization, and hence PCOS does not make it to the list. Navneet Sharma, an insurance agent, said, “The problem is that there are so many people in the country. If the policies start covering outpatient department treatment (OPD), people might take unfair advantage of it to save money.”
Dr. Navneeth Selvan suggested that government should provide schemes and subsidies to make it easy for PCOS patients.
The stigma continues
The issue of PCOS is still a hush-hush one in many places in the country. The fact that it is related to menstruation and infertility is one reason for it. Menstruation still comes along with a social stigma. Shruti Singhvi has been blogging about PCOS to spread awareness about it. She said that she receives many messages from girls who have been told not to tell anyone that they suffer from PCOS. The process of its detection also involves physical examination, which again becomes a problem in the country with male gynaecologists. The lack of proper information exists because it is not discussed much.
Many women have successfully managed PCOS and have turned to Instagram to create awareness about it. The PCOS Club Of India, slayingpcos, coachnush are some of the popular pages. Other than that, Dr. Tanya, popularly known as dr.cuterus and Dr. Anjali Kumar, known as maître woman, are some doctors working closely to bust the myths and create awareness about PCOS. September 1 is celebrated as PCOS Day to promote awareness and help people struggling with it.
Srishti Pragat is an activist and founder of Sky Social NGO, which works to spread awareness about menstruation. She questions that although many women are creating awareness about the issue on social media but what about the ones who do not have access to it. She threw light on the absence of information about PCOS in the marginalised community. “I remember we went to a village in Madhya Pradesh and some women there were getting delayed period, and they were least bothered about it.” She remembers them saying, ‘Hum aapas mein hi baat kar lete hain’ when she asked them about what they did about the delayed cycle. None of them went to a doctor to get treated. “No one talks about reproductive health and menstruation in the rural areas, let alone PCOS,” she added.
The Indian Women’s Health Report 2021 surveyed 1,000 working women aged between 25 and 55. It was found that 67 percent of women considered talking about health issues a taboo in society, and PCOS, breast cancer, and endometriosis were taboo subjects.
PCOS is still unknown to many men. Richa Sharma, a teacher, shared her experience that her 26-year-old brother had no idea about what it meant when she was diagnosed. “My report was in his hand, and he was trying to make sense of what was written. The look on his face told that it was all French to him.” She remembers his face with confusion lingering over it when he had heard the word for the first time.
Lack of awareness about it is one of the reasons that add to the worsening of the problem. Paati P., a gender consultant, believes that women’s health issues are not given priority. She said that there is a lack of awareness about PCOS among people because it never gets talked about. “Women are still seen as baby-making machines by many. The moment their fertility comes under question, their marriage prospects decrease. PCOS is seen as a fertility issue, and that is exactly where the problem starts.”
She continued that PCOS patients also have to face criticism for not conforming to the stereotypical beauty standards set by society. Recalling her personal experience, she said that she heard a lot of remarks from people because of her heavy lower body. “Some told me to lose weight while some remarked that my body lured men’s attention.”
She suggested that the solution to this problem lies in spreading awareness about the issue. “The society has a deeply engraved notion of how a person is supposed to be. This notion needs to be challenged, and half of the problem will be sorted.”