Polycystic Ovarian Syndrome (PCOS) affects about one in every ten women in the UK. It is a condition that affects a woman’s hormone levels. Women with PCOS produce higher-than-normal amounts of male hormones which causes irregular menstrual cycles, and in some cases leads to infertility. Asian Voice spoke to Neelam Heera, who founded Cysters.org in 2015, which is a collective of individuals changing the narrative around Reproductive and Mental Wellbeing.
She was 18 and studying at the university when she was diagnosed with PCOS. “It took about five or six appointments to have a proper sit down with me and they did an ultrasound for PCOS. All they said to me is take the contraceptive pills, you’ll be fine,” Neelam said, But as she grew older, she got diagnosed with Endometriosis. A PCOS patient also needs to take care of heart diseases, anxiety and diabetes. “It’s not just about fertility and children,” she added.
“I decided we need a safe space for people of colour, South Asian women, Black women, all women from minority backgrounds talk about this because as soon as I would say I have PCOS to any Asian people they were suddenly like HAW! How will you get married? You can’t tell them! I was like - why is this my fault? If I told somebody I had Cancer they wouldn’t blame me for it, so why have I been blamed for this,” she argued.
PCOS is not actually both a gynaecological and endocrinological issue. Symptoms like facial hair, weight around the stomach and dark skin patches are some common signs. “Why are we being held to this western ideology of beauty? In this condition, why are we trying to be something we are not? This is why I started Cysters,” Neelam said.
Very few women know that PCOS is also a hereditary disease. “I think people don’t understand the difference between a true period and induced period and ovulation which is interesting, because we are expected to have children and in fact we don’t understand our bodies and ovulation,” she said.
Most Asian households are used to eating the same food within the family, which consists of Rotis (which contain Gluten and can possibly aggravate PCOS). The concept of cooking separate food for different members of the family is still a bit alien in many Asian households. Neelam states that if you go to other people’s houses they don’t think not eating Rotis is normal. Food therefore, is an integral part of PCOS management and it is better to start off with early diagnosis than later in life.
Sharing a case study from Cysters, Neelam told us about a woman who is in her late 40s. When she was diagnosed she was a teenager, all she remembers is her mom crying that she won’t be able to have children. She is scared of entering a relationship because she’s always thought that she wasn’t good enough.
Commenting on period leave for women, she said, “Companies need to know what these conditions are. You need to be in a place where that illness should be accommodated for. That means honest conversations need to happen between companies and HR and people who manage you.”
Neelam made a firm point when she said, “If somebody is diagnosed with PCOS don’t make it your problem. You can’t put yourself in their shoes and tell them how they’re feeling. You make them feel worse when you say they're not gonna have children and they shouldn’t tell anybody.”
