Thirty-one-year-old Neelam Heera is the founder of Cysters, a Birmingham-based group dedicated to supporting individuals and improving the health, education and welfare of those with reproductive and mental health issues. The group's aim is to educate the public about reproductive health and education so that they can make informed choices around their treatment options and challenge the cultural misogyny that surrounds reproductive health.
Having both polycystic ovary syndrome (PCOS) and endometriosis herself, Neelam has seen firsthand how community bias, together with the physical symptoms and misinformation about fertility, has shaped her life as a British Asian woman. This, alongside the fact that, according to Professors Wiebke Arlt and Shakila Thangaratinam, Black, Asian and minority ethnic (BAME) women are disproportionally affected by PCOS, shapes and motivates her work.
I was diagnosed with PCOS at the beginning of my first year of uni. I felt young and free and went out drinking, partying and staying up late like everyone else. But my body was calling out to me, saying 'something's not right' – I felt very ill all the time and wasn't having periods. Luckily my mum was a nurse and had worked in sexual health at one point, and she had a feeling for a long time that I had PCOS. So I took it to the doctor and it took a few appointments back and forth to get to the point where I had an ultrasound and they confirmed the diagnosis.
When I got diagnosed, all I got told was to go on the pill (because it is prescribed to regulate irregular periods) and I got a printout from Google. I remember thinking that PCOS doesn't have its own leaflet so it's not really that deep. So I never really paid attention. At no point, to me at 18 years old, did anyone say, "This is what the condition actually is, this is what it actually does to you." It was just, "Take this pill and you'll be better." The pill didn’t agree with me – I suffered horrific migraines I believe were related to it – so I stopped taking it and carried on with life.
As I started getting older my periods got worse and worse, when I was actually having them. I experienced bouts of extreme bleeding. This, I learned later, was a symptom of endometriosis; the longest lasted for a couple of weeks.
This really took a toll on my body and on my mental health. Heavy bleeding is painful and uncomfortable, you don't feel good in yourself when experiencing it. This is when I started properly looking into PCOS and endometriosis. These conditions are surrounded by stigma across British society but, in my community, when I talked about it with other Asian people (colleagues and friends), I experienced a particular kind of shame: I was told not to tell a potential partner about it because they wouldn't want to marry me!
This really pissed me off. Why was I being put on this pedestal of having children before I had even met someone? Why is that a standard expected of me as a woman – as a South Asian woman? This is why Cysters was born: from frustration with my own community, to combat myths about fertility and womanhood.
PCOS is often assumed to be a sexually transmitted disease. I cannot even tell you the amount of times that was said to me when I was first diagnosed and started openly talking about it.
There are also so many sexualising myths surrounding PCOS. We know that sexual and reproductive health aren't taken seriously enough or taught properly in the UK. What I have encountered is that people wrongly assume that you've been sexually promiscuous if you've got PCOS, that that's what has caused it. PCOS is often assumed to be a sexually transmitted disease. I cannot even tell you the amount of times this was said to me after I was first diagnosed and started openly talking about it.
For some reason, anything that relates to gynaecological health is suddenly sexualised. I notice this more from men than women – they think that if you're talking about that area it could only be about sex. When I use words like 'ovaries' or 'vagina' then suddenly it's about sex and I shouldn't be talking about it, but the people who respond this way have generally never even heard of PCOS.
I think that the level of miseducation about reproductive health in Britain is so scary. It's crucial that we know these things but especially women and people with wombs. I set up Cysters because I want to bridge the gap between medical professionals and my community, but also to tackle stigma and misinformation within the community itself. I didn't want people to feel taken aback by what they are told in a short GP appointment and think that's everything they need to know. I want them to make really informed choices about their health.
There is a woman in Cysters who’s in her 40s. She was with her mum when she was diagnosed with PCOS. Her mum started crying and saying, "This is really bad, you're not gonna be able to have kids." That memory of her mum crying when they were told about the PCOS has never left her, it has actually scarred her. She doesn't think that she's a 'real woman' and she never quite healed from the way she was told about PCOS. If we actually understood what it was as a condition first, then we would never have to deal with issues like that.
Fertility is a huge issue for women and people with wombs who suffer from PCOS. There's often a big expectation put upon women to have children straight after marriage. If there's any slight issue, the woman is suddenly blamed. I've heard of fertility problems being blamed on women for being sexually promiscuous before marriage. Women from all backgrounds try all sorts of things to get pregnant – acupuncture, fertility teas – I have also heard people say that infertility can be cured by people professing to be witch doctors.
I have spoken to women who are experiencing infertility, who are at their wits' end and ordering untested products and potions online that they think will help. This can, obviously, be really dangerous. A woman I spoke to recently has been told to go and see a man who specialises in getting rid of curses because her fertility might be the result of a curse that a now deceased relative put on her family. If someone is experiencing fertility issues which are related to PCOS and they're told it's their own fault because of their sexual history, it can really affect their emotional and mental wellbeing.
I think every community – not just the British Asian community – has an element of judgement when it comes to women's reproductive health. PCOS, in particular, is affected by this. The symptoms such as weight gain and excess body hair (hirsutism) are surrounded by societal stigma across the board.
Another woman sufferer I was just speaking to recently told me that she purposely had a small wedding because she felt that uncomfortable about her weight. When she has to go to relatives' houses she feels very uncomfortable because she either gets comments about not having children or comments about her weight. People often try and give her herbal remedies to make it 'better'.
What’s less talked about is the darkening of skin, too. With PCOS you can actually get darkening of some areas of your body like the neck, elbows, knees because of higher insulin levels associated with the condition. In my community, this brings with it colourism, which is really not spoken about in the context of PCOS. At Cysters we speak to a lot of women who say they want their skin colour to go back to normal, to be lighter again. Light skin is a really dominant Westernised aesthetic and the rise of social media has made it even harder for South Asian women who don't fit that mould.
It's really important that medical professionals know that they are gaslighting people by brushing them off and saying, 'It's just your weight and if you lose it you'll be fine'. We have a lot of women who go to the GP and the doctors aren't willing to do anything about it until they get to a point where they want to have children.
The pressures of PCOS are twofold: the medical aspect of potential fertility issues and heavy or irregular periods combined with the aesthetic issues and societal stigma surrounding fluctuating body weight or excess hair. The cultural stigmas that come with both can make sufferers feel so downtrodden.
I think it's really important that medical professionals know how deep the emotional impact can be for women and people with wombs who have the condition. Brushing someone off, being dismissive and saying, "If you lose weight you'll be fine" can make someone feel like they're being gaslit. In Cysters, we see a lot of women who go to the GP for help but find that doctors aren't willing to do anything about their condition until they get to a point where they want to have children. This doesn't treat a person holistically, it doesn't look at the mental health aspect, the cultural aspect of the condition. Until you want children this condition is trivialised and brushed aside but PCOS is bigger than losing weight or wanting children. We are more than our weight and childbearing abilities!
The hardest thing for me is that a lot of the women and people with wombs I speak to talk about PCOS as though it is a death sentence, for the above reasons. I try to explain to them that it's an opportunity for us to be in tune with our bodies, to listen and understand what they want and need from us. Just because our bodies don't fit in with what is seen as 'normal' doesn't mean they can't work for us or that we can't work with them.
Hope is really everything in this conversation. Cysters is a support network – speaking to people who have been on the same PCOS journey is everything. We've all been there. We understand. The door is always open at Cysters for anybody that just wants that conversation, who needs some comfort. I want everyone with PCOS – in the British Asian community and beyond – to know that they're not alone. We can pull through this together.