Last month, actress Lena Dunham shared a photo of herself in a hospital bed, after suffering complications from recent endometriosis surgery.
In the past, she has been candid about having this condition, which blighted her youth after what started with severely painful periods.
Lena’s story may sound familiar to millions of women who suffer with endometriosis, and after a friend was recently diagnosed with it, I thought it was too important not to try and raise some awareness of.
You may or may not have heard of endometriosis. It’s not something that is talked about that frequently.
However, one in ten women endure unrelenting pain that affects every aspect of their lives each day - that’s a staggering 1.5 million women, between the ages of 16 and 50.
But what exactly is endometriosis? Well, it’s a condition in which the tissue that normally lines the womb is found in organs outside of the uterus. During the monthly cycles of a healthy woman, a uterine lining is created and then shed. In a woman with endometriosis, the lining is created wherever these cells are and is subsequently shed inside the body, resulting in internal bleeding, blood cysts, and scar tissue.
It’s not known what causes endometriosis. Nobody knows why some women get it and others don’t.
But a common theory suggests that during a period, not all the womb lining leaves the body properly, instead passing back into the pelvic area and attaching to the reproductive organs - known as ‘retrograde menustration.’
The most common symptoms include extremely painful abdominal cramps or back pain during menstruation, painful bowel movements, and difficulty becoming pregnant.
But it can be hard to diagnose. The only definitive way is via laparoscopy by a skilled specialist who knows what to look for. Because it is so hard to diagnose, and also because there is a general lack of knowledge, there can often be a long delay between a woman going to a doctor about her symptoms and being diagnosed.
A shocking eight and a half years is the average time but in some cases, it can take up to 12 years.
In March, the condition was even at the centre of a parliamentary discussion when the All Party Parliamentary Group on Women’s Health found that 40% of women suffering from it needed 10 appointments with their GP before being referred to a specialist.
They also found that 67% of women got most of their information on the internet, which I find utterly appalling.
Recently, an Australian women called Laura Furiosi spoke of collapsing with severe stomach pain as a teenager. Doctors told her she had appendicitis but after surgery, she learned the stabbing pain was instead caused by endometriosis which had grown like a weed through her insides.
In the three years leading up to her most recent surgery, Laura was told by doctors the pain she was feeling may be ‘psychological’ and not real after checking for other issues.
“There’s a lot of judging you face when you have this because you can’t see it,” she said. “One day you can be completely fine and the next day you can be vomiting and struggling to walk. You become lethargic, you get pain in all kinds of places. Because mine spread to my diaphragm I get spasms there and the pains in my body can feel like labour pain.”
Laura was also told she would never have children but is now a mother of three. She now wants to help girls feel comfortable talking about endometriosis.
“Just because you have a disease doesn’t mean you can’t find ways around it,” she said. “You can do anything if you try and work around your limitations... it’s not about what you can no longer do, it is about what you can do.”