Until my sister was diagnosed with Polycystic Ovary Syndrome (PCOS) on the 23rd September 2021, I can honestly say that I didn’t really understand much about the condition, so in an effort to become the best big sister and to ultimately find out how I can support her throughout her PCOS journey, I decided to write this article. But, this article, as much as it written in honour of my sister, it’s also for anyone with ovaries because PCOS can affect anywhere from 10% to 21% of women that are of the reproductive age.
Shockingly, PCOS is not yet perceived as an important health problem in the world, despite being one of the most common hormonal endocrine disorders among women. Women with PCOS produce higher-than-normal amounts of male hormones, for which this hormonal imbalance causes their body to skip menstrual periods and can make it harder to get pregnant.
In one study, up to 70% of women with PCOS hadn’t been diagnosed, and in many cases, there have been missed opportunities for an earlier diagnosis. It is saddening that in many of these cases this isn’t down to the fault of women, but rather the flawed healthcare system.
Hearing about my sister’s experiences during and after diagnosis was heart-breaking, not only because I love my sister, but because it also angered me as much as it angered her to be treated as a mere inconvenience, over a condition that both she and many other women are torn down and not listened to time and time again.
Her story for me appears to be emblematic of the stories of many women across the globe, and I hope I can bring justice to such a painful and complex topic, by raising awareness through the lens of my sisters experience.
On the 6th of April 2021, my sister finally went to the doctors for the first time, in search of some answers. After having dealt with many of the symptoms of PCOS for a long period of time, i.e., struggling to lose weight, excess hair growth, acne, and no period…. to only name a few, she knew that she wanted to get a medical diagnosis, and therefore begin treatment to help her with her symptoms.
At the time, my sister was only 15 years old, and had been struggling with these symptoms for a long duration of time, but despite this, she waited to go to the doctors because she already knew that no one believe her, just because she was under 16!! That statement, in itself, is enough to get my blood boiling.
The GP that diagnosed her was amazing, and she was given hope that she was on her way towards treatment and was thus heading in the right direction. But, unfortunately, at her referral appointment to an endocrinologist, despite having got this far, she was completely torn down. Now I am not one to normally get so angry, and question the job of a professional, but when my sister rang me, and told me that the endocrinologist told her, and I quote, that she ‘will grow out of it’, I cried. For those of you who may not know, PCOS is not a condition that you can just simply grow out of, it is a condition that you can treat, but will have for the rest of your life.
As you can imagine, my sister felt that she was back at square one again, throughout the appointment, the doctor asked her simply futile questions such as, ‘do you study A-Levels, BTEC’s or go to college?’, ‘are your parents still together?’, ‘do you have any sibling’s? And how old are they? and I mean I’m not sure about you, but I do not see how personal questions such as these correlate to a hormonal endocrine condition?!
Thankfully, with much hesitation this doctor did confirm the diagnosis of PCOS and prescribe her with Metformin, to help relieve the insulin resistance in PCOS, and thus help her to lose weight. But, whilst this outcome was favourable, this experience was not… Women time and time again are torn down and ignored by medical professionals, particularly with conditions such as these, where they are simply told that they ‘will grow out of it’. *Insert eye roll*.
The argument that I am trying to make here, is not only to raise awareness for PCOS, but also is for anyone that is reading this article that feels they aren’t being listened to or are being ignored. Whilst we can all appreciate that they are medical professionals, please stay strong, please keep showing up, please keep arguing your case, because whilst it is so incredibly wrong, many people are in the same boat, and you are not alone… you know your body better than anybody else.
To be disregarded by a medical professional, I can only imagine is one of the most frustrating and upsetting experiences, I am only going off what my sister has told me about her experience with PCOS, and I just hope that in this article I have conveyed these feelings across to help raise awareness to others. As to be overlooked, with a condition that has many psychological impacts, such as causing significant anxieties over infertility for example, is outrageous. I think, if I was to take one raw emotion/feeling away from listening to my sister talk of the long-term impacts that this may have on her, I would without a doubt say incredibly upsetting: mainly, upsetting for her, but also for those around her that care. My sister’s main dream in life is to have children, and the possibility that that could be taken away or be made difficult for her is heart-breaking. She of all people does not deserve this… no one does.