Understanding Problem Periods from a South Asian Perspective
This piece was written by Neelam who was diagnosed with Polycystic Ovary Syndrome (PCOS) at the age of 18, and later founded Cysters as a safe space for people of colour with reproductive health issues. Cysters is a charity that focuses on centring the patient voice in healthcare. They focus on reproductive and mental wellbeing and act as a conduit between the NHS and grassroots communities.
I reached out to my Cysters (a charity I set up dedicated to empowering women around reproductive and mental health) to tell me their journeys with Polycystic Ovary Syndrome (PCOS).
All the names and locations below have been changed to protect their identity.
Kiran is a marketing executive from Derby and spoke candidly about how PCOS affected her relationships after marriage:
“My mother in law told me that I needed to start taking better care of myself and that I need to lose weight. I started putting on weight soon after I got married, this would lead to comments and later arguments at home about how I had let myself go”.
Kiran became withdrawn and depressed, struggling with married life, putting on weight and then with the added stress of having to “produce” children to keep up with the family’s appearance. Comments from friends and extended family members added to the distress of this journey. Kiran goes onto say “The first year of marriage was challenging, my partner knew about my PCOS and was supportive, but I was still often mocked by my in-laws for not having children sooner.”
Kiran felt her PCOS was only taken seriously when she spoke to the GP about starting a family.
Pregnancy and a struggle to lose weight isn’t the only barrier for women. Finding a medical professional who takes this condition seriously is the other.
The scrutiny and often judgment from medical professionals are rife within the PCOS world.
Sanam, a call centre operative from the Midlands said “When speaking to my GP about ways to help manage my PCOS, all he said was - lose weight. There was no conversation about my fatigue, the hair falling out and my depression. My problems boiled down to weight and nothing more.”
Sanam spent the next few years yoyo dieting (yoyo dieting refers to rapid loss and gain of weight in the pursuit of long term weight loss) and from binge eating to extreme starvation. “If a doctor had given me support and explained how to manage my PCOS through lifestyle choices, instead of making me feel as though my weight gain was my fault, I would have succeeded in losing weight, but now I have a difficult relationship with my weight, food and suffer with body dysmorphia.”
For most PCOS women their GP is their only source of information on the subject, to be made to feel guilty and responsible for your condition makes it harder to continue engaging with any health care professional.
It also seems that women find out more about their PCOS diagnosis when going through the fertility journey and struggling to conceive.
Some words of wisdom..
I could continue highlighting sad PCOS stories, but we all know PCOS is just one part in the journey.
So, here are a few words of wisdom from some of your PCOS Cysters:
“Your condition doesn’t define you. PCOS is just one part of you. For me it allowed me to become more compassionate, understanding and better human because I can empathise with invisible illnesses more.”
“Become your own advocate, you will find so much power in yourself when advocating for your own health. It will allow you to create a platform for others to follow in your footsteps and influence the generation of change makers.”
“Hair is normal! As a Sikh woman with PCOS I have struggled for years to conform to society's expectation of womanhood, when I needed to be concentrating on my own health. If I had not noticed the extra hair growth, I wouldn’t have been able to go to the GP and get the relevant medical intervention for my PCOS.”
There you have it. PCOS...it’s a minefield and it starts by us understanding problem periods.
But together we can start changing our narrative.
If you or someone you love is experiencing similar symptoms then feel free to get in touch with Cysters directly to join their online peer support group to support you on your journey.