The most common disease you’ve never heard of by Shannon Cohn | TEDx Talk

[Illustration by Armadilly]


If someone doesn’t look sick, it doesn’t mean that he/she doesn’t have a chronic illness.

As Shannon Cohn explaines, endometriosis is a condition in which tissue similar to the lining inside the uterus (called “the endometrium”), is found outside the uterus. The tissue usually affects the pelvic area, but it can develop anywhere in the body, including the digestive tract, the lungs, and around the heart.The symptoms of endometriosis include painful periods, painful ovulation, pain during or after sexual intercourse, heavy bleeding, chronic pelvic pain, fatigue, infertility, depression, and in some cases cancers. Even if endometriosis can affect a person’s quality of life, it can take an average of between 7/10 years to get an accurate diagnosis. One of those reasons is that this disease is individual; different women have different symptoms. The problem is that most doctors do not know this.

Endometriosis affects an estimated 1 in 10 women during their reproductive years, usually between the ages of 15 to 49. It is a disease that directly or indirectly affects you. Many women have been told that it is normal to live with severe period’s pain, that is part to be a woman, but it is not true, it is not normal at all. They are told that they’re overreacting or hypochondriacs. With endometriosis, there are two vortexes that a woman has to go through: the long delay of the diagnosis and the search for an effective treatment. There are two ways a doctor can treat it: burn the surface (“ablation surgery”) or cut it out  (“excision surgery”). The problem with option one is that it leaves 90% of the disease, meaning that repeated surgery for endometriosis will be a fact of life.

There is no drug that can actually treat the disease, it is only possible to mask the symptoms.

The question is why we don’t have answers? Why hasn’t everyone heard about this disease? Lack of awareness, gender biases, uninformed doctors, fragmented care are only part of the explanation. The main reason, is that periods, cramps and everything below the women’s waist is still a taboo in our society. However, if we don’t feel free to talk about our bodies, we will not know if something is wrong. The good news is that now there is more awareness among healthcare providers and women compared to just a few years ago. However, much has to be done in terms of awareness raising, research and treatment. 

There’s a lot we can do to break the cycle of misinformation passed down by generations and revolving around the assumption that “painful periods are normal”.

If you know a woman, or a friend, who is affected by endometriosis, listen to how she feels, be empathetic, be supportive, and do not underestimate her pain. Endometriosis is a real illness that affects a woman’s mental and physical well-being, she has to live with it for the rest of her life and deal with its symptoms.

If you have these symptoms and no one has given you the diagnosis yet, but you know that something is wrong, just be persistent, do not give up, you will find the answers you need.


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