Maria is in her late 20s and living with endometriosis. She is now working on a PhD on the history of the disease, and exploration of patient experiences with the illness over time. For Endometriosis Awareness Month 2022 she spoke to writer Hannah Turner about her journey and her hopes for the future.
On reflection, the start of my endometriosis symptoms are similar to so many other sufferers I have met. We all had periods early, we were all in pain, we were all told it was normal, bleeding will hurt, we must just get on with it.
I had my first period at nine. I was isolated from the start. Each time it came around the pain was disarming. By the time I turned 14 I went to the doctor for heavy periods and like seemingly everyone else, I was put on birth control. Consequently I only had a period twice a year and for a while it felt like the problems and the pain disappeared.
Fast-forward to university and the pain returned. I knew it wasn't right (like most of us do) but conditioning had me believing it was still normal. I thought this newer, more widespread pain wasn’t related to the historical period pain. I went to my university student health centre for help during a flare of severe pain. Throughout the hours I spent there, each doctor I saw began to slowly shift the conversation from my symptoms to my reactions, implying the mood I was in was creating the pain, not the other way around. From the moment I arrived in that first doctor's office I was vocalising my pain. I was in distress and they saw my tears and my anger and immediately categorised my issues as in my head and, with that, dismissed the existence of my physical pain in its entirety. I walked away with a box of antidepressants.
That doesn't make sense, right? Why would I accept a prescription for a mental ill health medication when I was in physical distress? It is easier to look back now and see how I was failed but at 19 I had no understanding of chronic illness, reproductive health or the ways that bodies can misbehave. Unsurprisingly, the drugs didn’t make a difference and I was referred to a psychiatrist.
The antidepressants were exchanged for antipsychotics. I left the psychiatrist's office almost in a daze, with no real understanding of my new prescription and certainly no informed consent to this new treatment protocol. It was only when I phoned back to ask a question that I was told that I had a bipolar II diagnosis. They framed it as two weeks of the month I was extremely low and the other two, when I was pain-free, I experienced a heightened sense of relief akin to the typical extreme changes in mood seen in bipolar II. I spent the next five years coming to terms with being bipolar, the stigma attached to the illness and the idea that every new person I disclosed this to thought I was 'crazy'. I became an advocate online, fighting against those myths and stereotypes.
Endometriosis is a full body chronic inflammatory disease, where tissue similar to (but not the same as) the lining of the uterus (endometrium) grows outside of the uterus. It is under-diagnosed and chronically mistreated.
We tell all chronic pain sufferers a specific narrative: that because we can't see the pain, because there are no physical signs in tests and scans, it must be psychosomatic. It exists only as a figment of the sufferer's imagination. Doctors are trained to solve problems. People present in front of them with an issue and they have been taught to provide answers. Chronic pain and chronic illness in general disrupt that story because there is no simple solution, often no real solution at all. The reality that thousands of people are in pain 24/7 is unimaginable to so many – doctors included – and it is easier to say it's not real than it is to admit: 'We can't help you.'
Years after I graduated, a new and specific kind of pain emerged: a throb in my pelvis, a stabbing pain in my left ovary. I saw a new doctor, outside of my university this time. I had ultrasounds, CAT scans, a colonoscopy and still nothing showed. The doctor said I was constipated, nothing too much to worry about. I was bleeding daily for months at a time and the doctor said: 'I can’t help you anymore.' I went to the emergency room and was turned away time and time again, without tests or even a glance over. They dismissed me and said: 'There is nothing physically wrong with you.' I was deep into my own research at this point. I had discovered my aunt had surgery to remove endometriosis at the age I was now. I read medical journals and Twitter threads and yes, diagnosed myself with the disease because no one else was willing to help me. I began to wean myself off the antipsychotic medications I had been prescribed years earlier. They weren’t making me any better and the side effects were becoming harder to live with.
I pushed for a referral to a gynaecological surgeon. Months later, I woke up from a laparoscopic surgery to find out that endometriosis was growing on my bladder, uterus, adjoining ligaments, colon and covering both my ovaries. My rectum was fused to my uterus. Success, I suppose? That there was evidence of this pain inside me? But the pain didn’t go away. In fact, it continued to get worse.
Endometriosis is a full body chronic inflammatory disease, where tissue similar to (but not the same as) the lining of the uterus (endometrium) grows outside of the uterus. It is under-diagnosed and chronically mistreated. It cannot be cured by birth control, hysterectomies or pregnancy. The misinformation surrounding the illness is so widespread that doctors themselves often repeat false treatments and ideas back to their patients. My first surgeon wasn’t an endometriosis specialist. He left endometrial tissue behind, alongside adhesions and nerve damage, all of which was discovered in my second surgery, less than a year later. When I woke up from the second surgery – this time performed by a doctor who had endometriosis expertise – that gnawing pain had gone. Instantly I felt relief.
Now my endometriosis is under control (as much as it can be), those psychological symptoms that marked me as mentally unwell have evaporated. It is totally normal to be depressed by physical pain and in the same way to experience elation when you have a rare pain-free day. This misrepresentation of chronic pain, paired with the medical misogyny that occurs with illnesses that predominantly affect people with uteruses, leads to a misdiagnosis of serious mental health conditions and the under-diagnosis of illnesses like endo.
As I look back now on my 20s I have started to piece together my experience and today I can say with near certainty that it was endometriosis that messed with my head. It had nothing to do with bipolar at all. I spent six years coming to terms with a bipolar diagnosis and the idea that the pain was a delusion of my own creation. I am still bitter about that.
I now live with anxiety as a result of being disbelieved. I acquired medical trauma throughout my 20s with almost every interaction I had with the medical system. It is easy to think that if I had seen more female doctors, perhaps they would have seen things differently, been able to empathise more. Now I know that all doctors, regardless of gender, can perpetuate medical misogyny to make a patient feel worthless. The answer isn’t more female doctors or even more endometriosis specialists. It's an entire reimagining of the medical system that takes patients as experts of their own bodies, accepts chronic pain as valid without questions and decentres fertility as the focus of health for people with uteruses.
This interview has been condensed and edited for clarity.