The Gender of Pain: Learning My Body Through Endometriosis
It's National Endometriosis Awareness Month in March, and Amy Life writes a personal account of encountering a medical system which could not register or comprehend her pain.
I’m just coming around in the hospital, and the nurses are giggling at me because the first thing I did when I came around was ask for a coffee. The surgeon is also here, and she tells me she found it. Endometriosis. Of course, I feel relieved. I had expected that (because of my age) they wouldn’t find anything. The diagnosis is a shock in a different way, however. It is ‘deep infiltrating endometriosis,’ which means they were unable to remove it during my operation as it would have been too risky. The surgeon tells me that some of my organs are shifted over to the left. Ah! That explains the excruciating pains I get in my left leg. The surgeon is lovely to me as I sob over what she’s just told me, as are the nurses who bring me back to the normal world. Despite the pain in my shoulders, life-changing diagnosis and vomiting in front of my boyfriend, the experience is surprisingly enjoyable. The same could not be said of the journey it took to get me there.
Endometriosis is as common as asthma. It affects 1 in 10 women and can be found in men, too (it’s an illness that affects all genders). Endometriosis tissue can be found on nearly every major organ in the body and is among the 20 most painful conditions a person can experience. It is also incredibly misunderstood as misinformation about the condition is rife both inside and outside of the medical profession.
For an illness that can be so life-changing and severe, the fact that it takes seven years on average to be diagnosed is, to say the least, regrettable. I was lucky that it took me only three years (although a GP had mentioned I might have endo around four years before I tried to get an official diagnosis). I could perhaps find studies about why it takes so long; however, my experience may well be evidence enough. A string of GP appointments (and one desperate private appointment) have shown me that endometriosis is not a buzzword in the GP practice. Having phoned the GP in 2020 explaining that I thought my possible endometriosis was causing me to experience painful sex. I was told to try abstinence. On another occasion, after weeks of excruciating pain and multiple evenings spent sobbing in bed, I went to a different GP. I explained that my high levels of pain, which I believed to be linked to possible endometriosis, had led me into what was essentially a depressive episode. I was told it was probably just a spike in hormones around my period or maybe just stress brought on by university. On numerous other occasions, I was told it was probably ‘just’ IBS despite my having spoken of no IBS symptoms at all. Overall, it took me a year of GP appointments, nearly all of which brought me to tears, before I was finally referred to a gynaecologist. That appointment happened a year later, and I was put on the wait list for a diagnostic laparoscopy, which added another year to my waiting time.
It is safe to say that without the experience of my mum, who suffered with endometriosis for two decades before being diagnosed, it probably would have taken me a lot longer to get to this point. Her tip about not mentioning any symptoms that could be construed as IBS was particularly important, and being able to insist to GPs that I knew it was endo because I had the same symptoms as my mum was a huge help. But what about people who don’t have that knowledge handed down to them by a parent? More needs to be done to ensure that healthcare providers are being trained to spot the symptoms of this (actually quite common) illness so that women like me don’t have to leave GP appointments in tears with their pain left unmanaged and undiagnosed.
Being diagnosed with endometriosis has at least helped me to know that I’m not a liar and that I’m not imagining the pain I experience nearly every day. I am chronically ill, and there are some lovely photos of my insides to prove it. I would very much like to wave them in the face of every GP who didn’t believe me, but that would just be petty. I will settle for just feeling relieved and perhaps a little vindicated and turn my attention to the future, which is probably filled with quite a bit of pain and the odd surgery to try and fix it.
A couple of resources I find useful:
EXPPECT at Edinburgh University
Image credit: ALDE group
Author Bio
Amy Life is a fourth-year French and Philosophy student and an Undergraduate Communications Intern for GENDER.ED. She has previously been the president of Edinburgh University’s Feminist Society and is one of the founders of #MeToo Edinburgh University.