Drastic treatment for endometriosis after 20 years of pain
by Jill Margo
Mar 25 2015 at 12:00 AM
For almost two decades, Eugenie Lee’s life was dominated by chronic pelvic pain. It dictated what she could do, where she could go and what she could eat. Every monthly period brought her seven to 10 days of dramatic and incapacitating agony.
She tried valiantly to manage her endometriosis, a condition that occurs when the tissue that lines the uterus grows outside of it.
She was also managing adenomyosis, when the same tissue grows into the muscular wall of the uterus. Lee, a Korean-born visual artist based in Sydney, could find no relief.
“The pain was all-consuming and felt like a ball of barbwire scraping against the walls of my organs. There was nothing else I could focus on but it,” she says. “The urgency and desperation to stop it was so strong, I just wanted to find an escape.”
There were dark times when she contemplated ending her life. Knowing most pain medication is for acute not chronic pain, she continued to use it despite the side effects.
“It made me feel I was doing something about my pain. There was nothing else I could think of, but sometimes recovering from the side effects took longer than the pain episode itself,” she says.
While the pain predictably came with menstruation, during the menstrual period it was unpredictable. It would occur suddenly and she would have no idea how intense or long it would be.
During an episode she found it hard to string a sentence together, couldn’t read and could only whisper. “I couldn’t walk, sit down or lay down – every position hurt. Even drinking water would make me vomit. I used to crawl to the bathroom.”
While the pain was limited to menstruation, Lee lived in a state of anticipatory dread, anxious and counting the day until the next episode would surely arrive.
She found people had little understanding of her “invisible” pain and occasionally encountered a “Knock it off, princess” type attitude.
“People think of pain in simple terms. They think of it as a symptom – and in acute pain it is – but in the case of chronic pain, it’s a disease,” Lee says.
Between her menses, she would slowly recover from the blood loss, lack of nutrition and dehydration. She would walk around her Pyrmont house for a couple of days to get her strength back and then venture out to her studio.
With her life planned around her pain, she learnt to keep it from friends and colleagues. “I stopped committing to anything because there was a high chance I’d have to cancel at the last minute. I lost a friends and credibility because of it.”
In August last year, Lee had a hysterectomy. With her uterus gone, the hormonal pain cycle went, leaving a manageable residue of muscular pain. “Before I had no control over the pain; it controlled me,” she says. Now she is taking back control and trying to regain lost years.
The pain has, however, has been a rich source of creativity and much of her painting and installation art has grown from it. In her paintings, many say they “see” echoes of Frida Kahlo.