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PCOS Awareness Month: Don’t blindly follow influencers; Fight stigma with the right information, say experts

New Delhi: Polycystic ovarian syndrome or PCOS is a common hormonal disorder in women of reproductive age. Women with this disorder may have prolonged or irregular periods and may have high levels of male hormones (androgens). A condition that affects almost one in five women in India (according to a report by Metropolis Healthcare), the ovaries can develop multiple follicles and fail to release eggs regularly. Even women’s periods should not work clockwise, with PCOS experiencing fewer than nine periods in a year, with an interval of more than 35 days between periods and unusually heavy periods. Additionally, women also experience:

– Infertility (due to irregular or no ovulation)
– Excessive hair growth on the face, chest or back (hirsutism)
– weight gain
– hair loss from the scalp
– oily skin or acne

The above factors can have a debilitating effect on the psychological and emotional health of women, and especially young girls, who face a lot of stigma because PCOS is commonly associated with obesity. While obesity can exacerbate PCOS symptoms, there are no conclusive studies that suggest that these two conditions are caused by each other. It’s this weighty stigma that keeps women from seeing a doctor because many people have been shamed for being overweight. The medical community and others need to be sensitive to this stigma as there have been many reports of obese women suffering from PCOS due to other unrelated factors like stress etc. due to late periods.

The exact cause of PCOS is still unknown as it is classified as a metabolic disorder that can result in high blood pressure, heart disease and infertility. Factors that may play a role if patients are not treated include:

– extra insulin
– low-grade inflammation
– hereditary reasons
– excess androgens
– Beyond Clinical: Vulva Owners and PCOS Experience

It would be highly unfair to classify this disorder as a quintessential period problem as it is widespread and not limited to a few days in a month. A lifestyle disorder, the condition has no cure, and requires lifelong management of symptoms.

With the advent of the Internet, when information is readily available with a few clicks, there is a lot of misinformation related to PCOS and its associated conditions. New-age influencers or people lacking any medical knowledge are regularly propagating myths and many of those claims are unverified and can be potentially harmful. There is also a lot of literature to be found on the Internet in regional languages ​​and although this may provide a sense of community and equality for patients, the information should always be clinically confirmed.

The mental stress of having this hormonal imbalance is immense as it comes with a lot of stigma and fears. With excessive body hair being a symptom, societal pressure to ‘look perfect’ reinforces the idea of ​​women being ‘hairless’ except for a long-luscious mane on their heads, and affects the confidence of those who have lost their face. increased growth.

It also has psychological aspects that lead to mood swings and depression due to stigma in the society. From an early age, women are taught not to talk about menstruation or any sexual problem. Being barred, it is even more difficult for them to receive proper care and to have open dialogue not only with families and friends, but also with doctors.

The doctor-patient ratio is also very poor in our country, so overworked doctors can misdiagnose PCOS if not diagnosed properly. When PCOD, a metabolic disorder, is left untreated, it can lead to PCOS with external symptoms such as problems with conception. The burden of pregnancy is a huge social burden and social norms have forced infertile women into social shifts. Infertility being a factor associated with PCOS is often used to keep quiet or cut them off from mainline conversations, adding to their depression and anxiety.

There is also great shame and guilt attached to it. Whether one goes to a beauty parlor where they pass a comment on masculine hair, people passing the comment off as a joke can be painful for patients. ‘Your beard is growing again’, a common remark makes a patient feel inferior and so they prefer to go alone as if no one knows.

Some patients say that COVID-19 is a big relief because they can wear masks and no one will know. When shared with friends and colleagues, they initially try to be sympathetic but eventually find it distressing and upsetting.

For most patients, it can go back and forth, sometimes when symptoms are under control while symptoms suddenly increase. It goes on a spectrum, every woman suffers from this disorder in the form of sagging and waxing. It doesn’t make anyone’s experience any less painful.

Today’s life is very unpredictable, with constant hustle and bustle, stress causes an increase in symptoms. Stress is a major concern of patients in everyday life. Due to stress and increasing symptoms, sometimes individuals do not even have the strength to see a doctor. It has mental, physical, reproductive and emotional effects on each individual.

Some people also experience hair loss, leading to bald spots on the scalp, even if they go away from the lifestyle recommended by doctors for a few days. And, let us accept that staying fit can be very expensive.

Also read: Planning For Pregnancy After 30? A quick checklist to guide you on your parenting journey

Socioeconomic factors of treatment cost during PCOS such as dermatological support, maintaining a healthy lifestyle, including diet and mental health support should also be taken into account as many women cannot allocate a lot of resources for PCOS mitigation Huh. Associated skin and hair treatments to control bleeding during periods lasting up to 10 days, and many pads can be expensive and demanding.

People often experience craving for food such as sweets. As the person grows the stress automatically increases and all the factors play an important role. Looking in the mirror can be a scary thing in itself. It can also lead to eating disorders.

Body shaming is a common practice in our country, even if there is some improvement, but when someone makes a comment it can be very difficult for the patient to cope. In the dating aspects, it becomes so difficult with the shame that it comes out and the pranks, ‘Should I tell him I have PCOS?’, ‘Will they leave me?’, ‘Should he let me know?’ The hair will look disgusting’ The fear of abandonment kicks in. Creates even more loneliness. Even sex is hard because no one knows whether menstruation is not caused by PCOS or it is because someone is pregnant. Imagine the pressure on young girls to fear for their lives for a basic affair like sex and dating.

The most debilitating aspect is that no one knows whether to expect recovery even after doctors’ recommendations, it is like waking up every day and hoping in an empty void.

Patients expressed that by having an emotional ecosystem with supportive doctors, parents, co-workers, and family, people who care about the disorder without actually being judged. If someone has PCOS, they can live normally only if they have supportive people and strong emotional support.

Acceptance is a difficult journey, but it also brings out the true essence of who it really is, whatever it may be

Getting Help: Asking the Right Questions

Getting help is challenging and getting a diagnosis is difficult, so it’s important for women to take care of their reproductive health by getting regular checkups and taking necessary supplements. Prevention is better than cure and this saying holds true for all conditions. One needs to keep an eye on one’s weight and dietary habits.

PCOS management is a lifelong commitment and consists of active and passive phases. While symptomatic management is always advised, health practitioners must be relied upon. Patients experience painful periods, PMS, and abnormal hair growth. It can be a very difficult and lonely journey. Despite having enough information, sometimes people try to promote their own treatment or product to lure patients into a pool of misinformation, especially on social media and random search engines.

To manage PCOS, there is a need to adopt a holistic, 360-degree approach to assessing the disorder, psychological support and social support, including workplaces. Lifestyle management is also needed where exercise is important, dietary supplementation is important which is not the same as starvation, but taking adequate nutrition as the body needs to reduce androgen or testosterone hormones present in men and improve hormonal control to increase insulin it occurs. Stress management is also important because high levels of cortisol, a stress hormone, can cause impairment in everyday life. Even supplements like Omega 3 fatty acids, Vitamin D etc help and should be taken regularly.

Patients also need trust-building with communities and the doctor over time so they can openly manage and discuss them.

Beyond Binaries, Queer Community, and PCOS:

In the queer community, for those who do not identify as women, the treatment itself can be a matter of great shame. For many women, trans men, and others in the LGBTQ community battling PCOS, it can have a painstaking effect on their daily lives. The way out of this is for the medical community to address the anxiety and talk about treatment options.

For those who do not identify as women, it is time for the medical community to step up and learn about their struggles, with an open dialogue understanding and empathy for their pain points.

All this to say, it is important to create safe spaces and step up as a community of doctors, colleagues and patients with the right information and equipping them with the right tools. It has been an incredibly difficult journey, and it is a time for all of us to acknowledge and help patients support them even through the worst of the struggles they face each day.

(Dr Poonguzhali Liston is MS OB/GYN, ART and Advanced Diploma in RM)

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