Polycystic Ovary Syndrome affects 1 in 10 women in the UK, and is so often undiagnosed that those who have it are left suffering for years without any proper explanation. However, if you’re also a fat woman with PCOS, this can be an even bigger battle to climb. Ohne guest writer Lydia Ume shares her experience with PCOS, and what she hopes will change for future PCOS sufferers.
Symptoms, sinning, and shame.
My first period arrived when I was 13, and stayed for ten days. I don’t remember any pain, but you never forget the feeling of blood seeping through your sports kit, and stains on your underwear that never quite come out. It marked the beginning of an erratic relationship with my menstrual cycle – with some months coming hot and heavy, whereas others I barely needed a pad.
Whilst I knew what a period was, I rarely spoke about it out loud, or asked any questions as to why my period was so erratic. This was due to the culture of silence and shame I observed that surrounded anything to do with sexual or reproductive health. I internalised these feelings of shame and embarrassment, and continued to suffer in silence with symptoms such as fatigue, erratic periods that would sometimes last days then not return for months, intense mood swings and a weight gain of over 20kg in just a few months.
Eventually, I realised my body was tired. And so was I. I deserved an answer, so after 11 years of my symptoms being dismissed as just stress or an STI , I swallowed my fear and finally demanded a proper examination from an Obstetrician Gynecologist [aka a bloody expert in all things periods.]
After a thorough examination, they looked at me, and confirmed there was something wrong, and I had Polycystic Ovary Syndrome [PCOS]. I felt relieved, until I then heard a sneering follow up stating ‘I’m not surprised you have PCOS. I could tell by your body. You need to lose weight.’
Weight Bias and PCOS
PCOS is a common condition that affects 1 in 10 of those at reproductive age, yet the majority of those who suffer with this are undiagnosed. Whilst women’s health concerns are so commonly dismissed and under-researched, PCOS sufferers who are also fat also have to live with the fat-shaming culture in society, and weight bias within the medical system where Doctors struggle to see beyond their weight.
‘I would walk into a Doctor’s office and the first comment they would make is “you are fat, you need to lose weight”,’ says Elohor, a fellow PCOS woman who was diagnosed aged 16. ‘ It’s been a terrible experience with doctors. The first doctor who diagnosed me was kind and helpful. Soon after I had to change surgeries due to a relocation, and once again it became difficult to be taken seriously.’
After some digging, I discovered the majority of PCOS sufferers are told their weight is the reason they have symptoms. ‘Nobody ever takes women’s health seriously. You’re constantly dismissed as overweight or stressed… I experienced every symptom of PCOS, but all I got was more diets thrown at me or birth control.’ Elohor continued. The frustration is real.
Step forward Samantha Abbott – a registered dietitian nutritionist who specializes in PCOS, who explained that people who do suffer from PCOS can live a life without dieting stress, and they should be demanding more from their Doctors. “I think it’s important to point out that with nutrition, we should be focused more on things that are maintainable long-term,” she says. “Dieting may produce desirable short-term results, but dieting has a pretty high failure rate long-term and is a top predictor of weight gain.”
Abbott also explains that it’s super important to be upfront with your Doctors about what you need. ‘I recommend writing out a list of symptoms, and what you hope to accomplish prior to your appointment…you can decline to be weighed, or ask your Doctor to not talk about dieting…mention that weight is an outcome, not a behaviour, and that you would like to focus on health-promoting behaviours’.
PCOS and me…2.0.
Speaking to woman like Elohor, and spending hours [and hours, and hours…] on the internet showed me that my experience of being diagnosed with PCOS was not unique. I realised that there were hundreds of fat women like me being overlooked every single day, forced to walk away from medical centres with no answers, just another pamphlet about another fad diet to try.
My own relationship with food has suffered since my diagnosis, as the old feelings of shame and embarrassment crept back into my psyche. I would avoid food to ensure I couldn’t be blamed at my next appointment for any weight gain, and when I did feel full I would feel intense feelings of shame and confusion – wondering if I was actually full, or once again avoiding food. It became exhausting, adding to my PCOS symptoms.
Whilst it can feel demoralising to be constantly told it’s your fault, there is light at the end of the tunnel thanks to the wonders of social media. I connected online with people with the same experiences as me, sharing everything I could to feel a sense of normality I couldn’t get from my OB-GYN, and I realised the system was gaslighting me. A wave of relief hit me as I was told everything I experienced was completely in line with PCOS symptoms, and no diet in the world could cure me entirely. I did an emotional happy dance when I was told that due to PCOS, my body stores fat differently, which is why I gain weight easily. I wanted to hug younger me, assuring her she’s going to be ok, and she isn’t to blame for any of this.
The world is a long way off from total compassion for fat PCOS sufferers, and I hope to see a change in societal attitudes with more women discussing their experiences with PCOS. But my own journey has become one that I no longer have to face alone due to the encouragement and support of the online community I’ve found.
I have now found the confidence I needed all those years ago to find the right solution for me. I am dedicated to finding the right Doctor for me, and the one my body deserves. My body is beautiful, strong and deserves to be seen. My body is worthy of respect, and a world that can see past my size in order to help me live a life without PCOS symptoms plaguing my everyday. And so is yours.