Life With PCOS: Stories by Maldivian Women
Note: This is neither a scientific study nor an educational piece. Please note that this piece is a collection of stories shared by Maldivian women who are diagnosed with PCOS. This article aims to raise awareness of PCOS, while also highlighting how the healthcare system treats women. If you have any of the symptoms, please consult with your doctor.
I am a woman with Polycystic Ovarian Syndrome (PCOS). I was left undiagnosed, given the wrong treatment, gaslighted, shamed for my body, and not a single doctor gave me medication to treat it. Though I feel vulnerable and slightly uncomfortable talking about my health, I know that I am not the only woman who has felt these emotions and gone through this experience.
September is PCOS Awareness Month and last year, I wrote a very personal piece on how it took me almost two years to start proper treatment. The process and journey were hard; I had to deal with insecurities, my lack of autonomy, and the battle of finding a doctor who would listen to me instead of telling me that there is nothing wrong. It was exhausting and frustrating to hop from one doctor to another until someone finally listened to my concerns and validated my experiences. It’s even more disappointing knowing that women have to undergo these difficulties while also facing the mental, physical and emotional aspects of the PCOS journey alone. Sure, there are friends, partners and family members to help you through the journey, but the initial step towards recovery is hard.
This month I took the initiative to interview a few Maldivian women from a community called CystersMV, a safe space created for women who are going through PCOS to show that they are not alone in the process. It’s important for me to share other women’s experiences, as everyone has their own story. This article features a collection of stories that exhibit the stress and anxieties of dealing with a syndrome that is unrecognized by many medical professionals and if mistreated, can lead to many dangerous outcomes. The identities of the women are not revealed in the piece to ensure their safety as they shared very personal stories about living with PCOS.
Birth control pills, medical misogyny, and the failure of the healthcare system
“When I consulted a Maldivian gynaecologist, she didn’t even bother to check my blood work and at the first consultation itself she asked me to start birth control pills and to lose weight.”
When these women shared their stories with me, one recurring factor was that doctors would not listen to their concerns about their irregular menstrual cycles. These women shared the same concerns about medical professionals dismissing their feelings and not properly explaining the syndrome to them, sometimes only advising them that they need to lose weight. However, some doctors explained what the symptoms were and what kind of dangers that it can have on a woman’s body and future. Upon confirming the diagnosis, doctors would recommend birth control pills — a solution that was given to me by my gynaecologist to regulate my periods but ended up in disastrous bouts of migraines and an increase of depressive episodes — sometimes without any further tests. Another woman mentioned that she was only put on birth control pills because of her irregular periods and facial acne.
Many of the women that talked about their experience with birth control mentioned the difficulties and side effects that they had during the time they took the pill, from severe mood swings to being unable to remember conversations. Birth control pills were often given as the immediate solution to “fix” PCOS without having to go through other measures of treatment. One woman had a dangerous experience after taking birth control for two months, she shared, “At the age of 20, my gynaecologist back then gave me birth control and metformin together, and back then since I didn’t have much knowledge and awareness regarding PCOS, with discussion to the family I took birth control for 2 months. But with heavy menses, it made me bleed more and doctors were not sure of what made me bleed to the point I was asked to get a blood transfusion. I was called off the meds and have never been prescribed birth control since then.”
However, for one woman, birth control has helped her regulate her period. One woman shared, “They [family] believed that the best way to go about with PCOS was by a healthy diet and exercise. I agree with this to some extent because I’ve seen people get better. But for me, the pill was what worked best when it came to regulating my periods and other issues.”
Some medical professionals seek to prescribe birth control pills to their patients as soon as they reveal that they have irregular periods. Medical misogyny is one of the biggest reasons why doctors don’t take women’s pain seriously. Even if the person is showing the symptoms physically such as excessive hair, weight, gain, alopecia, thinning hair, and oily skin, their concerns are simply dismissed. The worst consequence that women go through, if untreated, is that the condition worsens to the point it becomes life-threatening.
This is not to say that all medical professionals work this way, and some consult their patients to help them understand the symptoms and encourage them without making them feel bad about themselves. Words of encouragement, empathy and even the simplest acknowledgement that these women have been heard were enough for them. Because that is all every woman is asking when they share their health concerns. It’s a difficult journey, emotionally and physically but if the doctor’s only solution is to fat shame, prescribe birth control pills and change your diet, it can take a toll on women. All because the healthcare system neglects women’s pain.
Unsolicited comments leading to insecurities
“I have received a lot of hurtful comments from friends and family throughout this journey regarding my facial hair and weight. I have let go of stressing about comments others pass on to me but still it gets me sometimes. The most mentally and emotionally draining thing is the thought I may not be able to have my own children. This gets to me on a daily basis. Sometimes I isolate myself and cry it out or I keep myself busy to distract myself.”
“Most of them weren’t aware of what it [PCOS] was but that didn’t stop them from commenting on my acne, hair loss and weight.”
“Growing up in a household where all the women were blamed for their own PCOS (which eventually all turned into diabetes), resulting in severe fat-shaming, even as a child. I was put on my first diet when I was barely 9. My body was constantly criticized. Nowadays, seeing pictures of myself when I was a child, I realize how warped my view of myself is. I was all skin and bones but I was just going through the natural changes of puberty. Today as an actual fat person the fatphobia and fat bias I had faced has made me a person that never takes pictures (unless in certain angles), never dresses up for fun (but for coverage or to be invisible). Since I am someone who struggles to have a healthy relationship with food, I almost never go out if I am the largest person in the group.
During their treatment for PCOS, as some of these women struggled, they gained weight and lost a lot of hair which made them insecure about their bodies and received unsolicited comments from friends and family members. One woman says, “I was bullied for gaining weight and was very uncomfortable in my own skin for a long time. People commented on my facial hair, and it took a lot of time to accept that part of myself. I think the most difficult thing would have been mood swings. Now it’s infertility.”
I understand the emotional toll PCOS is taking from these women as so can many women receive disrespectful comments from family members and significant others. It’s disheartening to read their stories because there is always a woman out there who can relate to them. I cannot emphasize the number of times my family members have made comments about my hair, told me to exercise and eat a healthy diet so that this condition of mine would get better. Regarding the birth control pill, I was not part of that decision. Simply said, my body was in the hands of my parents who were more than happy to decide for me because they thought that it was the right thing to do.
The cultural and religious factors behind birth control pills
“Whenever someone hears the word “birth control pills” they always assume it’s related to sex only. I used to be embarrassed to go to the clinic to get it because they used to ask me questions like my age and whether I was married. But in more recent years, I haven’t gotten such questions. I think a lot of people don’t know what it’s used for and assume it’s just a form of birth control only. Religion plays a role in it too, especially if you’re not married because then they think we’re having premarital sex and judge us for it.”
In the Maldives, taking birth control pills is looked down upon because of cultural and religious reasons. The assumption is that when a single woman takes the pill, it means that they are sexually active. Pre-marital sex is forbidden since Islam is the state religion in the Maldives. During consultations, doctors would ask whether we are married instead of asking if we’re sexually active. Because of the lack of information on sex education and PCOS, most people are unaware that birth control pills can — in some cases — help regulate periods. When I asked about whether taking birth control is dishonouring, some answered “yes”; mostly because it is expected of women to conceive as many children as possible. They continued by mentioning that the burden of taking contraception falls into women’s hands and so many women are forced to take it against their will.
Outside of the religious and cultural factors, there are other reasons why some women are afraid to take birth control pills. According to one woman, a lot of women are scared to take it because they might gain weight. She continued, “being fat is seen as the worst. Women would rather suffer through PCOS and the risks associated with it.” Others believe that it’s more of a cultural factor that influences the shame towards women who take birth control pills.
The challenges of finding the right treatment
While there are many downsides to this syndrome, a lot of these women have pushed through the comments and hurdles to slowly start treatment and find a healthy balanced diet. With regular exercise, a healthy balanced diet, medical therapy, and even alternative methods such as finding a variety of remedies and adjusting to it depending on whether it works past one month. But these women have also highlighted that even with a diet, it is very hard on them and are still on the path of trying to find remedies and methods that work for them. Others have relied on their instincts and strength to help them get through the treatment, keeping in mind that there is no one way to treat PCOS. Many of these women highlight the burden of the challenges while finding a good remedy for their PCOS symptoms, and it is a difficult journey.
Finding the right community for support
“It’s scary being diagnosed, especially if it’s something even the medical community cannot understand. But know that you know your body the best. If you feel like there’s something not right, and you’re not being taken seriously, fight for it. Advocate for yourself. There’s an entire community of Cysters willing to help and guide. You don’t need to feel alone.”
“CystersMV community has been an emotional and a much needed mental support group for me. Knowing that there are others struggling and desperately seeking answers, diet plans, trying to lose weight and understanding the cause made me hopeful. By talking and sharing the struggle and getting to know the recommended doctors that actually help Cysters like us made me identify which doctor I have to consult, thus being diagnosed properly. Forever thankful for the support group.”
Living with PCOS can be hard especially if you are going through it alone. There are so many women who cannot express their frustrations about the medical misogyny, the physical symptoms and infertility. It’s important for us to vent out our frustrations on these issues because PCOS can affect us mentally and physically. One woman states that she has learnt more from a group of women with PCOS who provided her with advice, information and support than doctors. The community of Cysters helped her to feel stronger about herself. She continues, “The journey has been really tough and I’ve gone through so many stages of it but I’m still here. Right now, I’m trying to improve my life by trying to find the right doctors to help me and come with a proper treatment plan which includes a healthy diet and exercise regime.” Another woman seeks out the help of her family to accompany them during the consultations. She noted that it is important for everyone to look out for each other and support them.
“I am so grateful that we have the Cysters community to support each other. To other Cysters, I would like to say, never give up hope, keep on trying and listen to your body cause nobody knows your body better than you. Even if you have to consult 100s of doctors, find a doctor that listens to you and validates your feelings. Most importantly, educate yourself and others around you in this journey.”
“Personally, I have realised that chronic illnesses are hard to be sympathetic towards. You would be viewed as a burden. This is why the support group has been such a gift.”
“There’s nothing wrong with you. There’s nothing abnormal about you. None of it is your fault. You deserve to be loved and taken care of. You are worthy and valuable inherently — not for your body shape size or ability to reproduce. You deserve health care. You deserve to be validated. And if you ever need to be reminded of this just join the Cysters community.”
“I think that it’s important to have a group of women to support you because I feel it’s gonna be a much harder journey to go through alone. Also, I think it’s important to be gentle with yourself and to be less critical. Small progress is also progressing so if something helps, celebrate it. And of course, CystersMV has got your back!”
I want to thank all of the women that volunteered to be part of this. I am truly grateful that these spectacular women contributed to a wonderful and personal piece on their journeys with PCOS. The lesson that we as a community must move forward with is, to be a bit more understanding and empathetic towards people who are going through this syndrome. As no one can know their comments are hurting people, it is essential for everyone to be more cautious and considerate when giving out unsolicited comments and opinions.
I know it’s hard. I’ve been in the same position as many of you and I understand how difficult it can be, mentally and physically. Like these wonderful women have said, Cysters will always be there to support and love you at the end of the day, even if there is no one else who understands your struggles.
