History and Mystery of Endometriosis
Endometriosis was first described in medical literature close to 300 years ago, but its ancient origins go back more than 4,000 years. Throughout history, various taboos and misconceptions have surrounded endometriosis.
Immorality and hysteria
During the Middle Ages, many people considered women with debilitating pain to be mad or immoral. They thought these women “imagined” their pain or that it was an expression of their sexuality.
For many centuries chronic pelvic pain has been linked or attributed to a mental state of mind. For instance, the Latin word “hystericus” means “of the womb”. This root is shared with the word “hysteria” — a term used to describe excessive and exaggerated emotions.
Many of these women with endometriosis or chronic pain were then considered mad, unpredictable or emotionally labile. Their actual symptoms were ignored and they were never correctly diagnosed.
A common but extremely misunderstood disease
Currently, an estimated 176 million women live with endometriosis worldwide. Despite its prevalence, endometriosis is often misunderstood and misdiagnosed to this day.
Women often ignore debilitating pain of endometriosis as they personally believe or they have been taught to believe that it is normal. Unfortunately, many women who do finally choose to seek care are dismissed by healthcare professionals. This leads to a delay in diagnosis, which is on average 7-10 years for this disease, progression of disease and even psychologic trauma.
A recent study carried out by Birmingham City University in the UK indicated that healthcare professionals found it difficult to interact with patients suspected of having endometriosis. Some were unable to even recall whether endometriosis was part of their training.
Wrong treatments: 4,000 years and counting
Since endometriosis was first described, the treatment methodologies were not in congruence with the actual nature of the disease. In the past it was leeches, chemical douches, genital mutilation, or exorcism. Although modern medicine has done away with these practices, it has not been completely successful in properly tackling the root of the problem.
Women have received all sorts of misguided advice and treatment with endometriosis. They have even undergone such procedures as early hysterectomies or oophorectomies (removing the ovaries) that severely damage fertility. When endometriosis is improperly managed, it can even worsen symptoms. We believe in surgical treatment with laparoscopic deep excision surgery with preservation of organs if that is the patient’s goal and appropriate medical management.
Fighting stigma with knowledge
The past 4,000 years of documented history of endometriosis have not been all gloomy. Advances in understanding the genetic and immune components of the disease and new developments in minimally invasive surgical procedures have shaped our understanding of endometriosis for the better.
While further research into the causes, progression and treatment of the disease is underway, it is important that we disseminate currently available knowledge to the public in an easily assimilable manner.
Initiatives by the Endometriosis Foundation of America (EndoFound) such as UpEndo and Endometriosis Education Program help bring people, clinicians, researchers, and governments together to fight endometriosis. This will hopefully lead to increased awareness and funding opportunities. Hopefully, together we can remove the stigma of endometriosis!
Get a Second OpinionOur endometriosis specialists are dedicated to providing patients with expert care. Whether you have been diagnosed or are looking to find a doctor, they are ready to help.
Our office is located on 872 Fifth Avenue New York, NY 10065.
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