By Emily Smith
Endometriosis might just be the most widespread medical condition you’ve never heard of. One in ten women in the UK have endometriosis, and yet it takes an average of eight years for a diagnosis to made. Doctors are often dismissive or ill-informed, perpetuating the harmful stigmas that already exist around women’s health.
Endometriosis is a chronic condition where tissue similar to the lining of the womb is found elsewhere in the body. This tissue breaks down every month, causing chronic pain and discomfort. Endometriosis can also cause heavy periods, pain during sex and infertility.
Following on from our discussion on the Lunch Bunch with Ffion Brighton on endometriosis, I wanted to share my experiences living with the condition and explore why this is a condition that so often flies under the radar.
I was seventeen when I finally went to my GP to complain about my period pain for the first time. For as long as I can remember, I have experienced chronic period pain every month, often causing me to miss school. Myself and those around me brushed off this constant pain, saying it as normal, and something that happened to every woman. I convinced myself that I was just unlucky with the periods I was getting. I don’t blame those around me for this messaging; the misinformation surrounding women’s reproductive health infiltrates everybody, myself included. I can’t remember what finally prompted me to go to the doctors, but as soon as I did I was told I had suspected endometriosis and put straight on the contraceptive pill in an attempt to mask my symptoms. No further questions, no further tests.
Endometriosis is difficult to diagnose and impossible to cure. Anybody living with this disease knows this all too well. These two factors combined often discourages women from advocating for a formal diagnosis of the disease from their doctors, myself included. If there is no cure, then what’s the point in being diagnosed, if not for a few words on a piece of paper? At least that’s what I thought.
The truth is that diagnosis can be empowering for people living with a chronic condition. Being able to definitively know that what you’re suffering with even exists is an invaluable part of someone’s journey through a chronic condition. Diagnosis can be bittersweet, offer clarity and help bring about change and treatment. But with an average wait of eight years before diagnosis, it’s perhaps no wonder why women are reluctant to seek help from their doctors. Diagnosis is also invasive, with a laparoscopy being the only way to formally determine endometriosis.
Treatment options are not much better. My experience of being put straight on the pill at such a young age is congenial with many other women’s experiences. There is still very little research done into the long term side effects of the pill, especially psychological ones. This is the case with most medical research done on women’s reproductive health. To put this into context, there is 5 times more research into erectile dysfunction which only affects 19 per cent of men, than in premenstrual syndrome, which affects 90 per cent of women.
Just last month, the i reported the stories of two women who were put on the contraceptive pill at a young age for painful periods, which masked their symptoms and lead to a missed diagnosis of endometriosis. Not only is the condition getting worse during this time, but it also has a harmful effect on the mental health of women who feel their symptoms are being dismissed. Doctors advising young women presenting with symptoms of endometriosis to go on the pill without any further investigations of questions (as in my experience) can be dangerous and detrimental to a woman’s physical and mental health. This can force women to choose between being in constant physical pain, or mental distress.
So what can we do? There is already a societal stigma that discourages anybody from speaking about their reproductive health. But it is these conversations that are so important in putting endometriosis and women’s sexual health on the public and medical agenda. Speaking about reproductive health and championing the voices that are is the first step. Be a part of the solution and take a listen to our episode to learn more about endometriosis and its impact. You’ll hear from Ffion Brighton and Millie, who suffers from endometriosis and tells her story about her experiences with the disease.
For more discussions on important conversations, you can catch up with every episode of the Lunch Bunch on Spotify and Soundcloud.
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