March is Endometriosis Awareness Month in the UK. Otherwise known as the silent illness, according to Endometriosis UK, it’s “the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.

Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.

It is a chronic and debilitating condition that causes painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems. Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity.

Endometriosis Awareness Month: The Cysterhood

We spoke to the founder of Cysters, Neelam Heera, who also has Endometriosis and PCOS (Polycystic Ovary Syndrome). She spoke to us about her life experience with the condition, her efforts to set up the charity and how BME women are more affected than western Caucasian women by PCOS and Fibroids.


Neelam’s Story

“I was 18 when I was diagnosed with PCOS and 24 when I was told about my Endometriosis condition and I have a really large ovarian cyst. Naturally, I did a lot of research to find out more about it and how I could manage both of them. I’m 29, living on my own in Birmingham. I have two full-time jobs; I’m a lawyer and I have my charity so I would be tired regardless of the Endo. Having Endo makes me even more knackered. The pain is constant, radiating down my back and legs and the fatigue is constant too. I get IBS-like symptoms and sometimes, all I want to do is sleep.

The uterus and ovary pain can flare up at any time, it’s a stabbing pain like someone is pulling at my uterus. One time I stood up too fast and it felt like my ovary had flipped over. It was really painful! Usually gluten and dairy make me feel even worse which is why when women don’t know they have Endo, GPs can mistake it for being IBS or food intolerance.

My hormones can be all over the place too. Sometimes I’m over-sensitive and overwhelmed and can start crying for no reason. Although no two peoples’ Endo experiences are the same, the symptoms can be quite similar.”


Effects on Women of Colour

Endometriosis affects one in 10 women and PCOS affects one in four women. According to NICE guidelines, up to one in two women would be affected by reproductive health issues of some sort which equates to half of the women workforce. A number of these women are from a BME background that aren’t supported that well in terms of their own communities. PCOS affects more Indian women than it does western women and fibroids affect more black women than western women in the UK but there’s not a lot of research on why.

The condition is not very well-known and in the case of Neelam and other ethnic minority women, cultural issues mean that you often can’t talk about it. Reproductive health has the same stigma as sexual health which, in some communities, is frowned upon to talk openly about. Sexual and reproductive health can often be associated with promiscuity and an irresponsible sex life which is not the case at all.

For Neelam, it prompted her to get more information about it, especially as a woman of colour. “I couldn’t really find anything out there for the ethnic communities that were trying to manage the Endo. Everything online was quite generic and when I went back and forth with doctors, they just kept saying I should lose weight. What they didn’t take into account was that it is difficult to lose weight anyway with the condition and I found it very hard.

In order to get a solution to these issues of Endometriosis and reproductive health in ethnic communities, I decided to set up my charity, Cysters.”


The Cysterhood

Cysters was set up because Endo is all I’ve ever known. When I was growing up and when I got to uni and now, the pain has got worse. I never really knew why, and it wasn’t something I could talk openly about. The doctors just told me to take the contraceptive pill and never made a big deal out of it, so neither did I.

The pain affects relationships with people and it’s very painful when in an intimate situation. When I was younger, I didn’t know who to ask. My friends gave me the wrong advice because they didn’t know I had the condition and I had to muddle through it myself.

There are loads of women out there with this condition, so I wanted to set up Cysters as an international support group. You create such a strong bond with these women and you can all relate to each other somehow, even though it’s online and even though we all have different experiences.

My family understands and personally, I’ve been quite open with my journey in general. I know that the wider Asian community and other ethnic backgrounds aren’t able to have that kind of support.

A lot of women with endocrine conditions also struggle to hold down a 9-5 job because there are so many days when you just can’t work. We’re that support group for women of colour in particular, for when they need it the most.”


A special thank you to Neelam Heera and Cysters for the information.


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