Endometriosis is a chronic pain condition that affects one in ten women in the UK. Whilst it has a severe impact on the health of millions, few know about its symptoms or impacts. The NHS website gives a description of the condition, “tissue similar to the lining of the womb starts to grow in other places, such as the ovaries” which causes pain and issues with fertility. It also states the causes of the condition are largely unexplained, and there is no known cure. Endometriosis UK states it affects 1.5 million women in the UK or 176 million women worldwide, the same number diagnosed with diabetes. One of the most startling statistics they give is the fact that it takes on average “7.5 years from onset of symptoms to get a diagnosis.”
Very recently, studies have been shedding more of an insight, generating awareness and hopefully vicariously, action. A recent BBC study used the data of 13,500 women with the condition, of which tragically half had contemplated suicide. Patterns were found across many of the women’s experiences, they had been told they were “making up the pain” so they could miss school, several had been misdiagnosed with IBS, and lots were told they simply had a “low pain threshold.” Studies into other pain conditions have recorded the same phenomenon. An article in the Harvard Medical School laid bare the startling statistic that “women are 7 times more likely to be misdiagnosed and discharged in the middle of having a heart attack.” These findings unfortunately suggest a deep distrust of women’s own accounts of their physical pain, which stretch beyond the single condition of endometriosis. There is a historical tendency to ascribe female pain solely to mental health complications. Since the discovery of the endocrine system, hormones have been blamed for “every kind of female phenomena.” In The New York Times, Roni Caryn Robin considers the reasons for this. She reports that “women are not adequately represented in many clinical trials on new drugs,” because testing on female lab animals is costly due to hormonal variations that need to be accounted for. Dr Janine Clayton, an associate director at the National Institute for Health stated, “we know less about every aspect of female biology than men’s,” as a result of this skew in research.
Madeline Hetherington, 25, from London, spoke candidly to me about her own experiences with endometriosis. She started developing symptoms around age 11 or 12, and yet was not diagnosed until age 25. She had experienced pain during periods early in her childhood that made her “physically sick”: she would often pass out as a result. Like so many other women, Madeline had to push her doctors herself to make them address her pain: “I had to essentially tell the doctors that I thought I had endometriosis and make them investigate.” She pushed for the doctors to give her a laparoscopy, a keyhole surgery which is the only way to conclusively diagnose endometriosis. Before this, she had been convinced into getting a Mirena coil which she “really regrets.” Madeline had to go through two laparoscopies. During the first, a dismissive doctor only asked her about her symptoms after the surgery, and wrongly diagnosed Madeline with IBS. “I had absolutely no trust in the lady who had just cut me open and performed this complicated procedure, it was really distressing particularly as I was alone.” It was only during her second laparoscopy, that endometriosis was found in “four different places,” and she has seen a slight improvement in her symptoms.
When I asked Madeline what the worst aspects of the condition were, she replied “whilst the pain can be excruciating, and the condition is physically debilitating, the thing I am struggling with the most at the moment is the mental side effect.” Madeline is not alone in these sentiments, with many women experiencing depression, anxiety and other mental health conditions as a result of the challenges of living with a chronic condition. Madeline remarked poignantly that “I feel that now I have the diagnosis I am almost struggling more because I have just been left,” reflecting on the fact that even after diagnosis, women are still being failed by the health system, dismissed and disregarded. Madeline was repeatedly and systematically made to feel neurotic by health professionals. “Anything linked to women’s health seems to be a taboo subject,” she noted, “I think it links back to people being unable to comprehend the pain.” There is almost certainly a lack of understanding surrounding female health, but far more worrying is the lack of determination to change such unfamiliarity.
Evidently, more action needs to be taken, and more funding given, to understand this chronic condition and soothe its impact on millions of women’s lives. A recent inquiry into endometriosis launched by MP’s is hopefully a positive sign for the future. Madeline gives this advice to anyone out there suffering; “Look after yourselves – listen to your body and know when enough is enough”; “Put yourself first and never give up fighting”.
If you believe you are suffering with endometriosis, or have already been diagnosed, call Endometriosis UK on 0808 808 2227, who can offer illuminating and confidential advice. Outside of their opening hours, the Samaritans offer a 24-hour service on 116 123.