Erin McKie discusses how endometriosis has impacted her social life, studies, and mental health.
“But you don’t look ill… It’s just a bad period, get over it”.
I’ve heard phrases like this numerous times. Last April, I was officially diagnosed with endometriosis, having displayed symptoms for the previous five years. Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries, pelvis, and the bowel. This illness causes a chronic inflammatory reaction that causes lesions, adhesions, and fibrosis, and if left untreated may result in problems like infertility. This condition affects one in ten women and according to the NHS it is in the top 20 most painful conditions to experience. Despite this disease affecting around 176 million women worldwide, there is still no cure, making endometriosis a long-term condition which has a significant impact on your life.
On average, it takes between seven and ten years to be diagnosed with endometriosis due to its symptoms being normalised. I was one of the few lucky women who received an early diagnosis and only had to wait five years. However, during those five years, I experienced debilitating periods that would wipe me out. Severe abdominal cramping, lower back and hip pain that made it difficult to stand at times and extreme tiredness after completing small tasks. I remember going to the doctors aged 14, explaining my aches and pains and being told that this was “normal” and “part of growing up”. Constantly being told that nothing is wrong with you massively affects your mental health. It felt like I was being gaslit by doctors; made to believe that my pain wasn’t real and that it was all in my head. Subsequently, I felt like a burden and begrudgingly accepted what the doctors said.
“Constantly being told that nothing is wrong with you massively affects your mental health.”
During the various lockdowns my physical health dramatically worsened. I went from only having pain during my period to gradually experiencing some sort of daily discomfort. More than once my dad accompanied me to out-of-hours patient care in the early hours of the morning. Finally, after my third visit to my local 24-hour practice, my concerns were taken seriously and I was referred to a specialist and received a diagnosis after many uncomfortable physical examinations. While this brought an immense feeling of relief, the helplessness remained. Knowing that this condition is incurable and has significant physical and mental health implications seriously affects me; and with my symptoms becoming more life-altering in the past few months, it’s on my mind most days.
While I am still able to do things, what was once easy has suddenly become difficult. I am currently completing a semester abroad, and while this is the best experience of my life, a part of me cannot help but think that I am wasting my time. Last week, I went to a theme park and was on my feet for around eight hours. The next day I was in bed with severe hip pain and was unable to do anything besides watch Netflix and sleep. A meal out with colleagues ended with a visit to hospital after I collapsed while coming off the train. Several times, I’ve had to cancel plans last minute due to intense flare-ups. What should be an incredibly exciting time meeting new people and seeing unfamiliar places has been side-tracked by this horrible condition. Furthermore, I feel frustrated and guilty for cancelling things last minute – like I’m letting people down, including myself. To put it simply, I feel alone.
“What should be an incredibly exciting time meeting new people and seeing unfamiliar places has been side-tracked by this horrible condition.”
Because I left Scotland pretty soon after receiving my diagnosis, exploring all treatment options has not been a possibility and the treatment options I have looked at so far have not made much difference. At the beginning, I was told to lose weight or go on the pill (male doctors, I am looking at you). However, these are band-aid solutions, temporary ones that don’t offer much help. Furthermore, other available treatment options like surgery or hormone therapy do not guarantee a positive outcome either. The lack of effective treatment options adds to the frustration this condition already carries.
Perhaps what’s even more frustrating is explaining what endometriosis is. This isn’t a condition that many people know about, and when people do become aware of it, they don’t fully understand its severity. Often people think it’s a bad period that only affects you for a few days a month. In reality, it affects all aspects of your life. Endometriosis has serious implications for intimacy. What should be enjoyable is painful and can be difficult for partners to fully understand. From my experience, not many people want to be in a relationship with someone who experiences chronic pelvic pain. That’s not even to mention the body image issues that arise from constant bloating and weight gain.
I am not writing this for pity. I wanted to share my experience to raise awareness for endometriosis and its debilitating effects. I may be chronically ill and struggle to do certain tasks, but that doesn’t mean I’m weak. In my opinion, it makes me even stronger. This condition may affect me – but it does not define me.
