Life with PCOS: a personal essay

This article was originally published in the Women’s Republic.

Note: This is not an educational piece.

I have been hesitant to write about this topic for months because of some unresolved emotional issues. I have been struggling with Polycystic Ovarian Syndrome (PCOS) for two years now, and this year, I started treatment. Finding the right doctor and taking multiple medications have been deeply exhausting. Since September is Polycystic Ovary Syndrome Awareness Month, I thought it was the right time to share my journey with PCOS.

It has not been easy. Nobody talks about the emotional and physical toll of PCOS. I was unaware of PCOS and did not know that irregular periods could lead to a lot of problems such as infertility and diabetes. The mental exhaustion of worrying about your test results and wondering whether or not you are consuming the right amount of food. I struggled with my physical appearance and despised my body every day.

The first consultation and the year ahead…

In March 2018, I realized that I had not gotten my period for three months. It seemed completely normal to me, but I was slightly worried. I waited another month to see if any changes happened, but nothing happened. I desperately wanted to see a specialist but I consulted with a general physician about my irregular periods. After some tests, she confirmed that I had PCOS, but it was minor, so I did not have to worry about it. She prescribed birth control pills to regulate my period. The next thing that she told me to follow was a healthy diet and to exercise regularly.

I followed this up with my family and their immediate response was to not take the birth control pills and follow the latter advice. Why should I take birth controls pills if exercising and following a healthy diet can help regulate my period?

Decisions, decisions, decisions

What deeply troubles me now, as I had no autonomy over my own body. My family entirely made the decision for me not to take birth control pills, and I had no say in it. Thinking about it now, I cannot remember getting a chance to speak up about what I wanted. They always made the final decision.

Throughout struggling with PCOS, I lost count of the number of times I told my family that my periods have not been regular. My concerns were dismissed. Whenever I brought up that topic, I was told that it was probably because of the weather and that my diet had changed. I do not know who or how that assumption started but it was simply ludicrous. Surely, the weather could not have anything to do with the multiple cysts in my ovaries.

I am not writing this essay to say that my family was terrible for dismissing me, but I would be lying to myself. Their immediate dismissal felt like they were not concerned about my health and only focused on maintaining some control over me. I had every right to speak out but every time I did, I was not taken seriously. I never felt like my concerns were heard.

Mental exhaustion and insecurities

Last year, I went through a lot of mental exhaustion. I had a massive panic attack, gained a lot of weight, had a lot of acne which made me very insecure about how I looked and on top of all of that, my periods were still not regular. I did not know what to do. Also, I was hesitant to share my problems with my family due to them dismissing my concerns earlier.

Two years later and I am still struggling with the same issues. When I came back home, my family were not as concerned and reassured that they had the same trouble too. The journey to find the right doctor was not easy. I had to meet with two other doctors before I met someone that listened to my concerns.

Finding the right doctor

The first doctor I met dismissed me and told me to eat fruits and vegetables which have specific colours, like red and green. She made no effort to explain what was happening to me. I was not happy with my consultation because I did not feel like she was listening to my concerns. I felt like I was being treated like a child. Her solution was for me to follow a healthy diet and exercise. Frustrated and angry, I decided to meet another doctor who would help me.

The second doctor was helpful and he confirmed that I had PCOS. He explained further that I was already on the pre-diabetic stage which meant that I had to change my diet and exercise regularly. It was the first time someone had taken their time and explained what was happening to me.

It is perfectly fine to get a second opinion on a previous consultation. I met a third doctor who I was really happy with. From the initial consultation, she listened to every concern I had and explained what was happening to me. She never told me that I should not have to worry about anything but made it clear that I needed to make some changes to my lifestyle. She put me on birth control pills, explaining to me that a lot of people have a misinterpretation of it. During the consultation, she confirmed that I had PCOS and the cysts had grown in size over the last two years.

Changing the past and the struggle of maintaining good health

I thought about what would have happened if I had taken birth control pills two years ago. Would I still be in this situation? I can happily say that even though it has taken this long for me to get on a proper treatment plan, I am slowly recovering. Although there is a lot for me to change on my end, especially when it comes to my mental and physical health.

This is not a matter of not caring about my physical health. I am constantly worried about what I consume every day. This year has been particularly hard, and taking 4–5 medications per day took a toll on my mental and physical health. I was not following my usual daily routine, and I did not think I was improving at all. I did not follow a proper diet plan and I was beating myself up for things that I could change immediately.

However, I know I am on the road to recovery and there is a lot for me to do on my end. The journey has not been easy. Especially in dealing with a family that constantly ignored my concerns and told me that it is not a big deal. Being dismissed by a doctor that told me that everything would be fine once I got married. There were so many times I wanted to tell my family that I was not happy with the way I have been treated during my diagnosis.

Learning to let the trauma go

The unresolved emotional traumas are things that I should let go. I think holding onto the anger and resentment towards my family will make it difficult for me to heal and get better. I do not know how long I would have to go through this treatment. It is tiring. After I started taking birth control pills, I have been having a lot of depressive episodes. I am fine now but there have been days where I have been physically unable to do anything.

The resolution to this would be, I finally understood that I did not have to listen to my family’s advice or decisions about my own body. I felt so relieved. This was what I should have done years ago. I should have spoken up about what I thought was right for my body. I did not have to take my family’s advice and listen to their misunderstandings of birth control pills. Now, I have the power to take back control of my own body. Since the last doctor, I have made every decision about my treatment entirely on my own. I do not feel pressured to share the test results with my family, only sharing them if I want to.

You are not alone

I know there are a lot of women who are going through the same thing as I am. It is not your fault that people don’t take you seriously and have a lot of misconceptions about the proper treatment. I am here to tell you that you do not need to listen to anybody else but yourself. Living with PCOS is a struggle for everybody. I understand how that feels and you are not alone.

People may not listen to you. Your doctors might dismiss your concerns and tell you not to worry. If you think that something is wrong, keep trying and finding a doctor that listens to you.

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