Misdiagnosis & Stigma: Indian Women Share Their Experiences With PCOS & Endometriosis

It is strange how even though the two conditions massively impact the wellbeing of innumerable Indian women, they are hardly ever discussed via early education.
It is strange how even though the two conditions massively impact the wellbeing of innumerable Indian women, they are hardly ever discussed via early education. Saumyaa Jain for PhableCare

In the last few years there has been an increased awareness around the issues surrounding women's health. As women themselves have found refuge in online communities involving others who are also diagnosed with two conditions that majorly affect the female population — PCOS (Polycystic Ovarian Syndrome) and Endometriosis. These groups have vocalised the tumultuous experience of dealing with these conditions within the Indian healthcare system, all while facing the societal stigma associated with them. 

PCOS is typed as a lifestyle disease that is experienced by about one in 10 women, leading to irregular and painful periods, acne, fatigue, infertility and more. Similarly, Endometriosis affects the everyday life of women caused due to unnatural tissue growth around the uterus; leading to abdominal and pelvic pain, painful intercourse and infertility. As per Endometriosis Society of India, about 25 million women in the country suffer from endometriosis and this number is increasing every year. 

It is strange how even though the two conditions massively impact the well-being of innumerable Indian women, they are hardly ever discussed via early education. The majority of women are also misdiagnosed or under-diagnosed; left to struggle with years of pain and hormonal issues. The system also largely disregards the pain and the two conditions are only seen as major concerns if women are struggling to conceive. To get an insight into these experiences, we spoke to Indian women about the struggles of dealing with conditions and the required changes within the Indian healthcare system. 

A 25-year-old woman who was diagnosed with both the conditions in 2019 and 2023 respectively, explains her own dismay with the way the treatment is prescribed. “As a doctor myself, I understand that a definitive diagnosis for endometriosis is hard to ascertain but I found the three private practice gynaecologists very dismissive about the pains associated with the conditions, the adverse effects of OCP’s (Oral Contraceptive Pills) especially on mental health. I would’ve also appreciated an open and honest conversation on the impact of my diagnosis on my fertility.”

Rattankun Thongbun

Online conversations have also brought to light the misuse of contraceptive pills/birth control pills by gynaecologists. While the ability of the tiny pill to avoid pregnancy is undeniable, the long list of side effects are often overlooked, especially when prescribed to treat PCOS or Endometriosis. Healthcare providers are only recently taking accountability and offering alternate modes of dealing with the conditions. As these contraceptives have led to a number of additional problems including anxiety, loss of libido and in some cases causing blood clots in other parts of the body. 

“I definitely think the OCP’s I was prescribed affect my mental health drastically, in that sense it has seeped into my personal relationships. I also don’t feel comfortable talking about my condition as any women’s health condition is stigmatised/dismissed.”

Women in urban cities still struggle to speak about their experiences due to society’s discomfort with female anatomy. “PCOS disproportionately affects (South) Asian women and I would encourage open conversation in families.” The struggle is often worse for women in rural areas who are not only misdiagnosed but lack the right infrastructure to aid their condition. 

Shriya, age 24, who was diagnosed with PCOS in the beginning of 2021 explains, “Any doctor you go to tells you that this is a lifestyle disease and cannot be cured. They tell you to take medication preferably only before pregnancy. However most cases could be resolved through particular exercise routines, a diet, and other changes which the doctors do not inform you about. The right guidance is not received which results in just frustration about the disorder. If women are made aware of what might cause this disorder in the future or in general more about reproductive health and how to take care of your body in these years, I think a lot can be changed in our medical system!”

This frustration is consistent across all diagnosed women as the mistreatment impacts their relationship with their own bodies. Shriya further discusses this alienation.

“In my teenage years I hardly had any knowledge about PCOS as no one ever dared talk much about it. If we would’ve been made aware of what it is, possible symptoms or how it can be avoided, I think it would’ve helped a great deal. The mood swings, the hormonal imbalance, food disorders caused due to PCOS are very real. A lot of the time we don’t know how to deal with situations, especially when you’re in a formal environment and are expected to act in a certain way, it’s not easy to manage emotions and work life.”

Allo Health

A 46 year old woman who was diagnosed with endometriosis only six years ago advocates for a deeper understanding of how the female body functions and how our lifestyle choices can impact how we manage the condition. “There has to be more information and conversations around endometriosis that includes diet and non-invasive treatments, amongst women, partners, and especially gynaecologists. The insane pain affects mental health not to say how it affects productivity and day to day stuff”.

One can notice how almost all women diagnosed with Endometriosis and PCOS feel unseen. Shriya insists on a major change in our attitude towards these conditions so that the next generation of young girls do not feel alienated. “Families, doctors and schools should talk about it and society's general attitude towards these topics needs to change. We need to understand that there is no one cause or one type of mistake which leads to these disorders. It is very important for us to analyse the impact of our fast lives, which are full to the brim with stress. Otherwise young girls who have just started their periods also might go through these conditions.”

The valid concern regarding our fast paced lifestyles is an important conversation to be had for the betterment of the society at large. However there is a direct correlation between our modern stress induced lifestyles and the two conditions. The corporate sector is built for a 24-hour body clock that disregards the second reproductive clock of women, that goes through a variety of changes every month. Due to this opposing nature, women’s bodies carry the major brunt of health conditions which have greatly risen in recent decades. 

Hence changes are required not only in our healthcare and education systems but also in the way our society functions. With a more empathetic outlook towards these conditions and the various physical and mental impacts on the wellbeing of women, we can begin to erase the challenges that come with PCOS and endometriosis. These honest conversations are necessary to provide a forum for women to discuss their experiences and it is only from there that we can analyse our biases and further erase stigma.

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