Science is Not Privy to Taboo, Say the Men Who Have No Idea
“Endometriosis (pronounced en-doh–mee–tree–oh–sis) is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body. 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 … Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity.” (Endometriosis UK)
I have been told that I should count myself lucky that I was diagnosed with endometriosis at 20, as the usual diagnosis-time for the disease is seven years, and I had only been visiting the doctors for four. Lucky me.
Just over a year ago, my endo was ‘cured’ – I underwent surgery to have the excess endometrial tissue burnt off and had a Mirena coil inserted for good measure. Ideally, after my six-month check-up, I should have been sent packing. In fact, I was discharged from their service at this time because I had seen minor results, reduction in pain, in bleeding, in general inconvenience. Six months later, I was back with my specialist because the pain had returned. Here I was reminded that there is no miracle cure for endo, as large numbers of sufferers see it grow back, and have to be operated on more times than you would imagine.
My options were: take strong painkillers and see how it goes, get another operation to confirm regrowth, remove the tissue, and then go again, or be referred to yet another pelvic pain specialist. Though I know I could have it so much worse, 1 in 10 women in the UK are going through the same thing, and some of them won’t even know it. I’ve spent ten years of menstruation being told by doctors that some women just have abnormally heavy and painful periods. End of. I’ve been put on the pill, given painkillers, and sent on my merry way. When I was finally given the diagnostic operation, I was convinced that this would be it – I wouldn’t have to miss work, education, or anything for that matter just because I couldn’t get out of bed due to pain.
This was obviously not the case. Women who suffer from endometriosis are sent round and around in circles for years, without any real end in sight. In fact, the only way to ensure it never comes back is a hysterectomy – something which I would never consider. Therefore, this disease not only causes physical pain, but it leaves women hyper-aware of their fertility, their ‘womanhood’. I am 21 years old. I should not be planning my entire life based on the fear that I won’t have a big enough window to have children. And yet it’s a constant concern.
What is baffling is that 10% of women suffer from this, and yet research is only just beginning to accelerate. Why? There are so many reasons, but they all whittle down to taboo. Taboo that prevented women from discussing their periods in the first place, that prevents us from knowing what an abnormal period actually is. Taboo that makes researchers shy away from looking into the disease enough to get further in eradicating it. Taboo that means women who suffer from it are embarrassed to say why they can’t go into work, because the severity is not understood, and we are immediately belittled for not being able to do something because we’re on our periods.
I’m certain that there is a light at the end of the tunnel because people are finally standing up and questioning the lack of research, the ridiculous diagnosis-time, and the taboos. But my question is, how many more women have to be made to feel dramatic and invalid before endometriosis gets the same amount of scientific attention as erectile dysfunction?
If you’d like more information on endometriosis and treatments which are currently available, please refer to the following websites: