I didn’t know what to expect when I was asked to attend the “black women and fibroids” seminar. What I got was an evening with a group of empowered women for whom history is not always in the past.
The event at the Science Museum’s Dana Centre was organised by Black History Walks, a group that arranges black history events across London.
The first speaker, a consultant gynaecologist, told us the basics. Uterine fibroids are common benign growths which can cause heavy menstrual bleeding, severe pain, and fertility and pregnancy problems. Of the many treatments available a hysterectomy is the only one which ensures the fibroids can’t return, and indeed fibroids are responsible for a third of all hysterectomies performed in the US. Myomectomy (removal of the fibroid) allows maintenance of fertility but the fibroids can return, and this treatment is not suitable for all patients.
The gynaecologist told us that black women are three to five times more likely to develop fibroids than white women. They also, typically, get multiple fibroids, at an earlier age, which are larger at presentation and produce more severe symptoms.
The audience were almost exclusively black women who, as the evening progressed, shared their experiences of living with fibroids. These women developed fibroids during their childbearing years – one woman in the audience was diagnosed aged just 20. Because of this they were desperate for treatment options that maintained their fertility. They were desperate, in short, to avoid hysterectomy.
Much of the evening was extremely positive. Here was a group of patients who, knowing their condition was difficult to treat satisfactorily, were spending time informing themselves of their options and learning about mainstream and alternative treatments. One woman reminded the group “we have to make the choice to look after our health and our bodies.”
But there was a definite thread of negativity running through the evening, which was directed towards the NHS, the medical community, and specifically the performance of hysterectomies.
Many women, regardless of race, have negative emotional responses to the idea of hysterectomy. Lainy Mcclean, an invited speaker, read us poem she wrote after being told she would need a hysterectomy, which included the lines “they want my uterus, I am still a woman.” But these women were going further- their negative response to hysterectomy was cultural as well.
A lady in the audience shared her story. She had attended hospital for her scheduled myomectomy, only to find herself down for a hysterectomy on the consent form. The doctor present assured her it was an innocent mistake and corrected it, but the lady fled the hospital. There was a collective intake of breath.
Another woman stood up and warned the audience against the medical approach of treating fibroids, telling them it was just a way of sterilising black women. She urged them “don’t let 2011 become 1950s USA!” She was referring to the sterilisation of black women by deceptive, coercive, or forced hysterectomies, which occurred in the US so commonly that they earned the nickname the Mississippi appendectomy.
At this point a black, female NHS radiographer in the audience piped up. She told them that mistakes like the miswritten “hysterectomy” happen all the time in hospitals. She said that when a black woman goes into hospital with fibroids they will do a hysterectomy instead of a more expensive procedure if possible because “they want to spend the money on an old, white woman who is infertile.” She concluded “the NHS was not set up with us in mind – we were brought over here to run it.”
The gynaecologist present did his best to refute these claims and bring the discussion back to solid fact, but it seemed as though a lot of the audience were not listening.
Lainy Mcclean’s poem repeated the line “I am still a woman,” echoing the famous anti slavery speech “Ain’t I a woman?” about how white woman were cared for and given privileges whilst black women were not. The event I attended taught me that some black women feel that, in the NHS, this is still the case.