PCOS Awareness Month: Don`t blindly follow influencers; fight stigma with right information, say experts

New Delhi: Polycystic Ovarian Syndrome or PCOS is a common hormonal disorder amongst women of reproductive age. Women suffering from this disorder may have prolonged or irregular menstrual periods and have excess male hormone (androgen) levels. A condition that affects nearly one in five women in India (as per a report by Metropolis Healthcare), the ovaries may develop many follicles and fail to regularly release eggs. Even as women's periods aren't supposed to work clockwise, in PCOS one experiences fewer than nine periods a year with a gap of more than 35 days between periods and abnormally heavy periods. Additionally, women also experience:

- Infertility (due to irregular or no ovulation)
- Excessive hair growth (hirsutism) on the face, chest or back
- Weight gain
- Hair loss from the head
- 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 stigmas as PCOS is generally connected with obesity. While obesity can exacerbate the symptoms of PCOS, there is no conclusive study that points out these two conditions are caused by each other. It is this very weight stigma that defers women from seeing a doctor as many have reportedly been shamed for being overweight. The medical community and others need to be sensitized to this stigma as there have been numerous reports of obese women being misdiagnosed as suffering from PCOS due to their periods getting late due to other unrelated factors like stress etc.

The clear cause of PCOS still remains unknown as it is categorized as a metabolic disorder that can further result in hypertension, heart diseases, and infertility if the patients if not treated factors that might play a role are:

- Excess Insulin
- Low-grade inflammation
- Hereditary causes
- Excess androgen
- Beyond Clinical: The experience of vulva owners and PCOS

Classifying this disorder as a quintessential period problem would be extremely unfair because it is pervasive and is not restricted to a few days in a month. A lifestyle disorder, there is no cure to this condition, and requires lifelong management of the symptoms.

Post the advent of the internet when information is readily available with a few clicks, there is immense misinformation when it pertains to PCOS and its allied conditions. New-age influencers or people lacking any medical knowledge are propagating myths on a regular basis and many of those claims are unverified and can potentially be harmful. A lot of literature in regional languages is also found on the internet and while it may provide a sense of community and commonality for the patients, the information should always be medically corroborated.

The mental strain of having this hormonal imbalance is humongous as it comes with a lot of stigma and apprehensions. With excessive body hair being a symptom, the societal pressure to 'look perfect' reinforces the idea of women being 'hairless' except for long-luscious mane on their scalps, and impacts the self-confidence of those who have increased facial growth.

It also has psychological aspects causing mood swings and depression due to the stigma in society. From a young age, women are taught not to talk about menstruation or any sexual problems. Being taboo, it is even more difficult for them to receive the proper care and have open conversations not just with families and friends, but with doctors as well.

The doctor-patient ratio is also very poor in our country, hence overworked doctors can cause misdiagnosis of PCOS if not checked properly. When PCOD, a metabolic disorder is not given attention to, can lead to PCOS with outward symptoms like having problems in conceiving. The burden of gestation is a huge societal burden and the societal norms have forced infertile women into social pariahs. Infertility being an aspect associated with PCOS is often used to silence or push them away from mainline conversations adding to their depression and anxiety.

There is huge shame and guilt attached to it as well. Whether one goes to a beauty parlour where they pass comments on a manly hair, people passing comments as a joke itself can be traumatising for patients. 'Your beard is growing again', a common remark makes a patient feel inferior and hence they prefer to go alone such that no one finds out.

Some patients say that COVID-19 has been a big relief because they can wear masks and no one will find out. When shared with friends and colleagues, they initially try to empathize but eventually they find it troublesome and annoying.

For most patients, it can go back and forth, when sometimes symptoms will be in control whereas suddenly the symptoms aggravate. It goes on a spectrum, every female suffering through this disorder in a waning and waxing form. It does not make anyone`s experience lesser painful.

Life today is very unpredictable, with the constant hustle and bustle, stress causes aggravation in symptoms. Stress is a major concern of patients in everyday life. Due to stress and aggravating symptoms, sometimes individuals don`t even have the strength to see a doctor. It takes a mental, physical, reproductive, and emotional toll on every person.

Some people also experience hair loss causing patches of baldness across the head, even if they waver off from the lifestyle recommended by doctors for a few days even. And, let us acknowledge that staying fit can be very expensive.

The socioeconomic factors of treatment costs like dermatological assistance, maintaining a healthy lifestyle, taking dietary additions, and mental health help during PCOS should also be taken into consideration as many women can not afford to allocate a lot of resources to PCOS mitigation. The allied skin and hair treatments, and tons of pads to control the bleeding during periods that may last for 10 days as well themselves can be expensive and demanding.

People often experience cravings for food like sweets. As one grows stress itself increases with all the factors playing a vital role. Looking at the mirror itself can be a horror. This may lead to eating disorders as well.

Body shaming is common in our country, even though there is some improvement, it can be very difficult for a patient to cope when someone passes remarks. In aspects of dating, it becomes very tricky with shame protruding and pricking, `Whether I should tell him I have PCOS?`, `Will they leave me?`, `Will he find it disgusting seeing my hair` fear of abandonment kicks in causing even more loneliness. Even sex is daunting because one never knows whether menstruation has not occurred due to PCOS or is it because one is pregnant. Imagine the pressure on young girls being scared for their life for a basic connection like sex and dating.

The most debilitating aspect is that one never knows whether there is hope to get cured even after recommendations by doctors, it is like waking up each day and hoping into an empty vacuum.

Patients expressed that having an emotional eco-system with supportive doctors, parents, colleagues, and family, people who with no judgment genuinely care irrespective of the disorder. If anyone has PCOS, they can only live normally if they have supportive people around and strong emotional support.

Acceptance is a difficult journey, but it also brings out the true essence of what one really is irrespective of the

Taking help: Asking the right questions

Taking help is challenging and getting a diagnosis is difficult, hence it is important for women to focus on their reproductive health by getting regular checkups and taking necessary supplements. Prevention is better than cure and this maxim holds true for all conditions. One needs to watch their weight and dietary habits.

PCOS management is a lifelong commitment and there are active and passive phases. While symptomatic management is always advised, one must rely on health practitioners. Patients experience painful periods, PMS, and abnormal hair growth. It can be a very daunting and lonely journey. Even though there is adequate information, sometimes people try to plug in their own remedies or product boost landing the patients in a pool of misinformation, especially on social media and random search engines.

To manage PCOS, a holistic, 360-degree approach needs to be taken to assessing the disorder, psychological support, and societal support including in workplaces. There also needs to be lifestyle management where exercise is important, dietary supplementation is important which does not equate to starvation but taking enough nutrition as the body requires an improvement in hormonal control to decrease androgen or testosterone hormones present in men and increase insulin. Stress management is also vital as high levels of cortisol, a stress hormone can cause impairment in everyday life. Even, supplements like omega 3 fatty acids, vitamin D, etc aid and should be taken regularly.

Patients also need trust-building with communities and the doctor over a period of time such that they can manage and discuss openly.

Beyond Binaries, Queer community, and PCOS:

In the queer community, for those who don`t identify as women the treatment itself can bring in a lot of shame. For many ciswomen, trans men, and others in the LGBTQ community grappling with PCOS, it can have a painstaking impact on their daily life. The way out of this is for the medical community to treat the concern, and talk about treatment options.

For those who don't identify as females, it is time for the medical community to step up and be open to learning about their struggle, with an open dialogue understanding and empathising with their pain points.

To say it all, it is important to create safe places and step up as a community of doctors, colleagues, and patients with the right information and equip them with the right tools. It is an incredibly hard journey, and it is time for all of us to acknowledge and help patients to support them even on the bad days of each day`s struggle.

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