If you’re suffering from Endometriosis or experiencing symptoms, always seek medical advice from your doctor for diagnosis and treatment options.
“Tears came unbidden as I gripped my pelvis and muttered, ‘Something’s really wrong inside me’ … I pictured a red rim around every organ, a fiery line slashing through my uterus and bladder and out of me onto the floor like a vag-centric Keith Haring painting.”
It’s estimated one in 10 women suffer from endometriosis, a chronic and incurable disease of the female reproductive organs. It occurs when endometrial tissue grows outside of the uterus, resulting in inflammation, scar tissue and often debilitating pain.
Actress and writer Lena Dunham has dedicated an issue of her e-newsletter Lenny to stories from women living with endometriosis — herself included.
In a post titled 'The Sickest Girl', Dunham recalls that from the first time she had her period she knew something wasn't right. Throughout her teen years, her periods were irregular and accompanied by severe stomach pains and "hideous" mood swings, but she couldn't help suspecting these were tied to the anxiety and OCD she'd experienced since childhood.
"Even my eternally supportive and tolerant parents seemed dubious... It was impossible for me to take my own pain seriously, so how could anyone else?" the Not That Kind of Girl author writes.
Pain, exhaustion and "innate physical sensitivity" followed Dunham into her college years and eventually her career; on her early film sets she would hide in the toilets to conceal her pain.
While writing the pilot of her hit series Girls, she began smoking and drinking large amounts of espresso — a regimen that quickly resulted in a dull, unmanageable lower back pain.
Dunham emerged from a trip to the ER with a colitis diagnosis and an appointment for a colonoscopy. The results came back clear, but this was no comfort for the actress; instead, it made her feel crazy.
"If my pain had no tangible source, that just meant my mind was more powerful than I was and it didn’t want me to be happy, ever ... I had lost all trust in or connection to my own body," she writes.
The turning point came when Dunham contracted a UTI and was referred to LA-based physician Randy Harris, who conducted a full checkup while asking her questions about her medical history.
"I saw his eyes flicker as he began to make clear connections: between the irregular periods and the crippling stomach pain, the chronic exhaustion and the intense shifts in mood around my period," she recalls. (Post continues after gallery.)
Lena Dunham on Instagram.
By the end of the appointment, Dunham finally had a possible name for the cause of her pain: endometriosis. A lower-dosage pill helped to immediately alleviate her symptoms, but over the next three years she would occasionally be struck down by stomach pain, nausea, and the inability to move.
Eventually, the pain became more frequent and impacted on her sex life and career. At this point, Harris performed a laparoscopic surgery on Dunham to determine once and for all what was happening.
Her abdominal walls, bladder, liver and appendix were afflicted with "stage two disease" that was removed for testing. The biopsy revealed "enough endometrial tissue and scarring to cause significant pain, especially during sex or exercise, as well as an appendix that showed signs of long-term chronic infection," Dunham explains.
"I could tell I wasn’t the only woman [Harris] had seen through the discovery of her own sanity. It’s a sad and beautiful moment when you realise just how much you have let yourself endure."
The 29-year-old now has monthly injections (Lupron) which halt the production of oestrogen and prevent endometrial cells and tissue growing outside of the uterus. The treatment effectively induces a "temporary menopause", and Dunham says the trade-off for its benefits is uncomfortable side-effects like achy hip joints and emotional sensitivity.
Although she's unsure if Lupron will change her life, Dunham says her experience has made her stronger — and she's campaigning for women's health and pain to be investigated more seriously.
"I am one of many women who grasp for a sense of consistent well-being, fight against the betrayals of their bodies, and who are often met with scepticism by doctors trained to view painful periods as the lot of women who should learn to grin and bear it," she writes.
"I am no longer scared of my body. In fact, I listen to it when it speaks. I have no choice but to respect what it tells me, to respect the strength of its voice and the truth of my own."
Mamamia's Endo Awareness Week, curated by Founder of EndoActive Syl Freedman, shines a light on a disease suffered by one in 10 Australian women. To read more from Endo Awareness Week, click here. If you'd like to find out more information on Endometriosis, Syl's story or Endo Active, visit endoactive.org.au and keep up to date on their Facebook page.
You can read Lena Dunham's story in full here.