It was a pain like I’d never felt before, as if my abdomen had filled with a hot fluid. But the worst of it was the agonising waiting game I endured every morning after my diagnosis: Will the pain come back today?
I was diagnosed with endometriosis in September last year. It’s a condition where tissue similar to the lining of the uterus grows throughout the body. According to the NHS, it’s most commonly diagnosed in women in their 30s to 40s.
At just 20, I was lucky to catch it when I did. I’ve always had heavy periods. The pain was bearable, partly due to my high pain threshold. But being diagnosed with endo taught me that a person’s pain tolerance is no indication of the level of their illness.
I’d been trying to find a contraception to help with my periods for years. I scrapped the pill after it intensified my existing struggles with clinical depression. The contraceptive implant known as Implanon set off a 12-month spell of sporadic bleeding – two days heavy, one day of spotting, repeat – which led to iron deficiency and fatigue.
Exhausted, I decided to see a gynecologist. I listed off my symptoms: heavy periods, pelvic and lower back pain, pain during intercourse, and so on. Within a few weeks, I was ushered in for surgery, and it was determined that I had a severe case of the condition, along with multiple ovarian cysts.
I’d heard every alternative before that diagnosis – PMS and thrush were two highlights. The best copout of them all came from the GP: “It’s probably just stress.”
Endometriosis is a relatively unknown condition. It often goes undiagnosed for years, because symptoms are wide and ranging, and the only way to be sure of it is through a laparoscopy (also known as ‘keyhole surgery’, a surgical procedure where a small incision is made in the abdomen to view the inside of the pelvis). It’s also widely misunderstood, as severe period pain is often something that is taken as normal.
It’s been a tiring physical journey. I had an overseas trip planned for January that I couldn’t miss, despite being cautioned that it could take anywhere between two weeks and two months to fully recover from my surgery. I beat myself up when I ended up in hospital overseas, a mere two weeks into my trip, after a cyst had ruptured in my ovary. The pain was nauseating, and lasted weeks.
A month on now, and I’m scared to leave the house before midday, as the pain usually takes a few hours to register. Every day is a waiting game.
I’ve quickly learned that endometriosis is a day-to-day dilemma. As there’s no cure or treatment yet, a heat pack and intense pain killers is the best I can do. But there’s the emotional hurdle that you can’t take an Advil for: that “stress” my GPs have been going on about.
Being a long-term sufferer of anxiety and depression makes it harder to pin point the chicken and the egg.
Little information has been made available about the link between mental health problems and gynecological conditions like endometriosis; yet, a 2017 study draws conclusions that people with endo are likely to experience emerging symptoms of anxiety and depression. These symptoms can result from concerns about recurring pain and costs associated with their condition, risk to fertility, and how it impacts their ongoing quality of life. There are even indicators that psychological factors can contribute to progression of the disease, as noted by the same study.
Psychology affects biology, but how do I forgive myself for staying in bed all day for a week? How do I find the courage to make it to work, class, or even out of the house?
One in 10 people of reproductive age are affected directly by endometriosis. As a sufferer, I am far from alone. Endometriosis can’t be seen from the outside. It’s still widely misunderstood in public discussions about both physical and psychological health, but I look forward to a day when we have more information about this disease.
As comforting as it is, a hot water bottle can’t heal the depression that comes with an “invisible illness”. The best I can do is talk, try my best to enjoy the good days and take care of myself on those dreaded down days.
I’m far from figuring out how to deal with the emotions that have come with my endo. But today, I’ll make it out that front door.
The original version of this article had a definition of endometriosis that was not correct. Research has found that the tissue that forms is not actually endometrium (the lining of the uterus), which was the common belief. Instead, it’s a very similar tissue. It’s also been found outside of the endometrial cavity, suggesting that the occurrence of said tissue is unrelated to the presence of a uterus in the body.
Also, this article originally said that the condition affects 1 in 10 women. Though it’s still most commonly diagnosed in the pelvic area and compounds with uterine symptoms, it has actually been found in cis men, trans men and women and non-binary folk of all ages, all throughout the body (from the lungs to the fingers).
Acknowledging this definition highlights the difference between it being a reproductive illness and a full-body illness, and brings us closer to finding a cure.
Cover by Claudia