This month is Endometriosis Awareness Month, a campaign launched to raise awareness and help end stigmas around the debilitating condition that has historically been misunderstood and misdiagnosed, leaving many women to suffer in silence.
Despite affecting one in 10 women worldwide, it’s a condition that is rarely spoken about publicly, although thanks to recent attempts by Alexa Chung and Lena Dunham, and the efforts of charities and campaigns such as this, women are finally being heard.
What is endometriosis?
It is the presence of cells, similar to those found in the womb, growing outside of the uterus, but the cause is still unknown. It can lead to inflammation, scarring and, most typically, chronic pain. The condition usually affects women between the ages of 15 and 49, and has been linked to infertility. There is currently no cure, but there are various treatments for the more severe symptoms, from laparoscopic surgery to more natural remedies. Not only is there physical pain, but the condition can also have a huge impact on women’s mental health and their way of life.
“This March, we want to end the stigma associated with the condition,” Faye Farthing of Endometriosis UK, tells Vogue. “Comments such as, ‘Endometriosis is just a bad period’ or ‘Just get on with it’ need to become a thing of the past. Delayed diagnosis can have a huge impact on someone’s life. Not only can the disease worsen if it goes untreated, it can also have a huge impact on a person’s mental health, education, relationships and career.”
Here, Vogue speaks to six women from around the world about their painful experience and the strength that has kept them going.
Anita Nneka Jones, 30, UK
“From the age of 14, I started getting painful periods. There was an occasion where my pelvic pains were so bad at school, I ended up at A&E and was diagnosed with minor appendicitis. Years later, I learned that appendicitis is a common misdiagnosis for women with endometriosis.
“An Instagram post changed my life. A friend of a friend published a picture of herself in a hospital bed and wrote she’d been diagnosed with a condition called endometriosis. From that moment, I decided I wouldn’t let doctors dismiss my pain and insisted I’d be referred to a gynaecologist. At 28, I was finally diagnosed with stage 2 endometriosis. The surgeons had found it in three places, including in my bowels.
“I want young girls and women to know more about this condition so they don’t have to suffer in silence. I also want to help men understand it, so they can have those conversations with their daughters, wives, colleagues and friends.”
Leah, 45, Philippines
“I have stage 4 endometriosis. I was diagnosed after my first laparoscopy at the age of 37. It had gotten worse after my pregnancy in my early thirties. For me, the biggest misconception is that period pain is normal. Any ongoing and unexplained pain during one’s period is not normal and should not be dismissed, especially if your quality of life is impacted. Other misconceptions are that pregnancy can cure endo and a hysterectomy can ‘treat’ it. Surgery has been most beneficial to me. I ended up with a segmental bowel resection, which required both gynaecologist and colorectal surgeons’ expertise to help remove the disease.”
Emilia Victoria, 26, Australia
“After 11 years of pain, horrible symptoms and unanswered questions, I was finally diagnosed with endometriosis at the age of 24 via laparoscopy and excision surgery. Endometriosis has affected my pregnancy journey — I was extremely blessed to conceive our miracle baby. You can do everything right and still not feel well. You can eat healthily, do yoga, make lifestyle changes and still have a flare-up or other medical conditions that are linked with endo — that is the unpredictability of this condition.”
Joanna Fazlie Colomas, 26, France
“My diagnosis with stage 4 endometriosis was confirmed via laparoscopy surgery in 2018, but I knew I had it when I was 14. It’s a very tough condition that is specific to each woman. For me, I’m full of it (bones, joints, organs) from my sternum to my rectum, my entire urinary system is blocked and I wouldn’t be able to pee without the ureteral stent that was put in me. My kidneys don’t work properly, my entire digestive system is infested and the adherences between my reproductive system and all the organs around it means my body works very weirdly and I don’t stop ovulating, even with drugs.”
Jamie Nipp, 34, US
“I was diagnosed at the age of 31. My husband and I went to see a fertility doctor after trying to conceive for over a year. One of the biggest misconceptions is that endometriosis is just in your reproductive system (uterus and ovaries). It can affect so many different organs and systems of the body. For example, I have severe bowel endometriosis, which explains my food allergies, irritable bowel symptoms, chronic bloating and painful/difficult bowel movements. Endometriosis can be found in the intestines, liver, diaphragm and sciatic nerve. Your loved ones want to help you, but you’re in this massive fog. In turn, this creates tension and distance in your relationships.”
Wendy Laidlaw, 50, UK
“My mum recognised my symptoms as similar to her endometriosis and took me to a gynaecologist where I was diagnosed with the disease at 11 or 12. After 33 years of endometriosis, I was able to put it into remission naturally. I recovered through nutritional therapy, psychology, and psychotherapy.
“We have had three generations of endometriosis patients in the family. My mother went through a hysterectomy, however, and all her endometriosis symptoms came back. I, on the other hand, have healed and so has my daughter. Although doctors suspected that endometriosis runs in families, if you look at my mother’s case, she is the only one who has it out of three other siblings.”
If you think that you might be showing symptoms of endometriosis, contact your doctor, local support group or global forum.