In 1602, an English physician named Edward Jorden gave evidence at a witchcraft trial in defence of the accused. A teenage girl had been suffering from fits and choking, and her neighbour, Elizabeth Jackson, was accused of causing the illness through witchcraft. Jorden told the court that the girl's symptoms came from an illness of the womb with natural causes, and that nothing supernatural was involved, but Jackson was still sent to the pillory. The following year, Jorden published a book on the condition, in which he argued that symptoms like the girl's had natural causes.
Jorden was writing about these symptoms, which doctors had puzzled over since ancient Greek times, more than 1,500 years earlier, and it would be over 250 years before a doctor described endometriosis under a microscope. Today, we know that endometriosis affects around one in ten women of reproductive age in the UK, and the average wait for a diagnosis is still more than nine years. The doctors in this article each contributed to the way endometriosis is understood today, and their stories help explain why this condition went unrecognised for so long.
Where does the history of endometriosis begin?
Some researchers trace it back to ancient Greece and Rome, where physicians wrote about a condition they called the ‘suffocation of the womb’. They linked it with menstruation, and they described women collapsing with severe pain. The word ‘hysteria’ comes from this same family of ancient womb disorders.
In the second century AD, the Greek physician Galen suggested that the condition began when the membranes holding the womb in place became swollen with excess menstrual blood. Much later, a medical manuscript from around 1300, now held at the Bodleian Library in Oxford, included drawings of a woman who appears to be doubled over in pain, and experts on medieval medicine believe they depict the same condition.
Of course, we can’t say for certain whether these women were living with endometriosis, and the experts remain divided. Camran Nezhat and his colleagues, writing in 2012, argued that many of these cases, along with many later cases labelled as ‘hysteria’, were most likely endometriosis. Giuseppe Benagiano and his colleagues take a more cautious view, as they found no evidence that anyone in earlier centuries described the physical features of the disease. They point out that an account of painful periods cannot prove that a doctor understood what caused the pain. The most balanced reading is that some ancient descriptions may reflect endometriosis, although the surviving evidence cannot confirm it.
How did hysteria change the way women's pain was treated?
Galen also suggested that young widows could be driven to madness by the loss of their sexual lives, and Nezhat et al. suggest his authority may have encouraged later doctors to see gynaecological complaints as problems of the mind. Over the following centuries, the consequences for women could be severe. Symptoms of this kind were sometimes attributed to witchcraft or demonic possession, and in later centuries some women diagnosed with hysteria were confined in asylums such as Bedlam.
Edward Jorden's evidence in 1602 stands out for this reason. At a time when many people saw witchcraft, he insisted that the girl at the centre of the trial had a physical illness, and he put that argument in writing so other doctors could read it.
Who first saw endometriosis under a microscope?
The pathologist Karl von Rokitansky is usually given the credit for work he published in 1860. Benagiano and colleagues offer a more precise version of that story. They credit Rokitansky with noticing that tissue resembling the lining of the womb could appear within growths of the womb and ovary, and with describing a form of adenomyosis, a related condition affecting the muscle wall of the womb.
According to Benagiano and colleagues, the first person to describe endometriosis on the lining of the pelvis, using the structure and behaviour of the tissue under the microscope, was the Canadian-born gynaecologist Thomas Cullen. In his 1908 book, Adenomyoma of the Uterus, Cullen described growths containing many cyst-like spaces that held fresh blood or yellowish blood pigment. The condition still had no name of its own at that point, and doctors grouped these growths under the term ‘adenomyoma’. Cullen's careful microscopic work helped establish that the same kind of tissue could grow in several places in and around the pelvis.
In England, the London-based gynaecologist Cuthbert Lockyer gave a detailed account of fibroids and adenomyoma in his 1918 book, Fibroids and Allied Tumours, at a time when doctors still grouped these growths under the name adenomyoma.
How did endometriosis get its name?
The name came into use through the American surgeon John Sampson, who used it in a series of papers during the 1920s. Sampson was the first to show that this tissue behaved like the lining of the womb, shedding at the time of menstruation and changing during pregnancy. In 1927, he proposed that fragments of the womb lining carried in menstrual blood could reach the pelvis and cause the disease there.
Sampson's papers gave the disease a name and a proposed cause, more than three centuries after Edward Jorden argued in court that symptoms of this kind could have a physical explanation.
How is endometriosis diagnosed today?
Diagnosis usually starts with a careful discussion of your symptoms and an examination, and many women are then offered an ultrasound scan. Laparoscopy, a keyhole operation to look inside the pelvis, is currently the only way to confirm the diagnosis definitively.
Non-invasive tests are a growing area of modern endometriosis care, and Mr Morris offers one of these new tests, ‘EndoSure’, privately. EndoSure works by recording electrical signals from the gut through sensor pads placed on the abdomen, and it may help identify endometriosis without surgery. You need to fast for six to eight hours before the test, and during the test, which NICE describes as taking 45 minutes, you drink water until you feel full.
In its current draft guidance, NICE has recommended further research on EndoSure before it can be considered for NHS funding. A result forms one part of your wider assessment, and Mr Morris will talk you through what it means for you before you agree on the next step together.
The doctors at a glance
The table below summarises the doctors discussed in this article.
| Doctor | When | Contribution |
|---|---|---|
| Galen | Second century AD | Linked suffocation of the womb with excess menstrual blood, and connected some uterine complaints with madness in widows |
| Edward Jorden | 1602 | Argued at a witchcraft trial that a girl's fits came from a bodily illness, then wrote a book on the condition |
| Karl von Rokitansky | 1860 | Recognised tissue resembling the womb lining within growths of the womb and ovary, and described a form of adenomyosis |
| Thomas Cullen | 1908 to 1920 | Gave the first description of endometriosis on the pelvic lining based on the tissue's microscopic features |
| Cuthbert Lockyer | 1918 | Wrote Fibroids and Allied Tumours, a detailed account of fibroids and adenomyoma |
| John Sampson | 1920s | Showed the tissue behaves like the womb lining and proposed a theory of how the disease develops |
What does this history mean for you?
Edward Jorden argued in a courtroom that a teenage girl's symptoms had a physical cause, and more than four hundred years later that principle still guides good gynaecology. If your periods are painful enough to disrupt your daily life, or you have pelvic pain that follows your monthly cycle, your symptoms deserve a proper assessment.
Mr Morris offers appointments in person and online, usually within 24 to 48 hours. To book, call 020 8371 1510 or email secretary@rapidaccessgynaecology.co.uk.