I had thought long and hard whether to write this. In fact, this was a post I had been contemplating from my active blogging days more than a decade ago and finally got to write it now. This is to share my experience living with Polycystic ovary syndrome/ Disease (PCOS/PCOD) which is a common endocrine disorder affecting women of reproductive age. It is characterized by hormonal imbalances, irregular periods, and the formation of multiple cysts in the ovaries. It is a precursor for other serious conditions including obesity, type 2 diabetes, cardiovascular disease and endometrial cancer and its prevalence has been on the rise in recent years.
My journey with this disorder began during my early teenage years. My mother had a transferable job, and during my teenage years, she was working outside the district, coming home only on Sundays. During one of her visits, she sat me down and explained about the menstrual cycle and gave me instructions on what needs to be done which according to her I might experience soon. The very next month I got my first period and managed it exactly as I was instructed. I also informed mom about it, and she was glad that she educated me just in time. But one thing she missed telling me and I was not aware of was that this bleeding would stop after a couple of days. Then one day I fainted and was rushed to hospital. A blood test showed extremely low HB count and that was when everyone around me realized I was bleeding heavily for 4 months straight! And that was just the first instance of the turmoil I had to endure in the coming years. Doctors were also new to this symptom at that time, and I was put on multiple experimental medications just to stop the bleeding.
In a society where anything related to menstruation was considered taboo and impure, all the difficulties had to be hushed and endured silently. I remember the struggle I had in school during PT classes which I had no strength to attend but I could not take an exception as I was not comfortable talking to my teachers about it. Moreover, it was difficult to explain to others what I was going through, when I did not fully understand it myself. Then there was this excruciating pain that kept me awake all night and made me miss classes (even exams). After countless appointments and tests that spanned over 2-3 years, I was finally diagnosed with PCOD when I was 15 years old. The internet was not as prevalent then and so I had to turn to medical dictionaries to understand what it meant. Knowing what I was dealing with gave me a sense of relief, but it was also daunting to learn about the complexities of the condition.
Adulthood Challenges and Finding Support
The irregularity of my menstrual cycles made it difficult to plan my life, whether it was pursuing career goals or making social commitments. That was the time I had discovered travel as a passion, but it was difficult as I was unsure of when the heavy bleeding or pain would strike again. The unpredictability was frustrating, and I could not help but feel like I was missing so much if not for this situation. It was like putting my life on hold with no end in sight. (Though I have to say I have managed a lot of travels still with the condition)
The Internet gave me more insights into my condition but also amplified my fears, apprehensions, and uncertainties. That time I also realized I am not the only one in this space unlike what I had thought initially. I have close friends/relatives in the medical field and still it took me a decade even to talk to them about my experiences and that was a big relief. Slowly I told some of my travel mates so that they were aware of my difficulties during our trips. Sharing my stories and experiences provided a sense of belonging and acceptance and reminded me that I was not alone in this battle.
Symptoms of PCOS:
PCOS presents a range of symptoms that impact various aspects of a woman's health. Irregular menstrual cycles, often accompanied by missed periods or heavy bleeding, are a common hallmark. Many women also grapple with weight gain and obesity due to insulin resistance, which may lead to an increased risk of type 2 diabetes. Conversely, excess weight can exacerbate insulin resistance and other PCOS symptoms. Polycystic ovaries, detected through ultrasound, are characteristic, but not all women experience this feature. Excess androgen levels contribute to symptoms such as hirsutism and acne. Mood disorders, skin issues, and sleep disturbances can further complicate the PCOS experience. Women with PCOS are at a higher risk for cardiovascular issues due to factors like obesity, insulin resistance, and metabolic syndrome. Irregular periods can lead to changes in the uterine lining, increasing the risk of endometrial hyperplasia (excessive thickening of the uterine lining) and possibly endometrial cancer.
It is important to recognize that while these symptoms are prevalent, not all individuals with PCOS will experience all of these issues. The diagnosis of PCOS is typically based on a combination of symptoms, physical examination, and diagnostic tests such as blood hormone levels and ultrasound. Treatment and management of PCOS can vary depending on individual circumstances and goals. Lifestyle changes, such as adopting a healthy diet and engaging in regular exercise, often play a central role. Medications may also be prescribed to address specific symptoms, such as regulating menstrual cycles or managing insulin resistance. If you suspect you have PCOS or are experiencing related symptoms, it's recommended to consult a healthcare professional for proper diagnosis and guidance.
Managing PCOD and Acceptance
To manage my PCOD, I relied on a combination of medical interventions and lifestyle changes. Birth control pills helped regulate my menstrual cycles and reduce the heavy bleeding to some extent. But I also realized that lifestyle modifications played a crucial role. Regular exercise became a part of my routine, and I focused on maintaining a balanced diet to improve my overall health. While these changes did not cure my condition, they helped in managing the symptoms and reducing some of the emotional burden I carried. I also realized any change in my routine, food habits or even my mental state also adversely affected the condition and I tried to keep up with my routine whenever I deviated.
Living with PCOD has taught me the importance of self-love and acceptance. The societal notion of "good" is often intertwined with perfectionism and the pursuit of flawlessness can paralyze us. There were times when I blamed myself for not being "normal" or 'perfect' like others, but over the years I have come to understand that PCOD is not my fault, and it does not define my worth as a person. It has been a challenging journey, but I have also grown stronger through this experience. I try to be kinder to myself and acknowledge that my journey may be different from others, but it is still meaningful and beautiful in its own way.
While PCOD continues to be a part of my life, I refuse to let it hold me back. Through the years, I have learned to navigate the difficulties, finding strength in my struggles, and discovering ways to manage this condition. If you are going through a similar experience, know that you are not alone, and together, we can support and uplift one another on this unique path we walk.
# PCOS Awareness for a Healthier Tomorrow