Endometriosis – a painful disease

Endometriosis is a common disease that affects one in ten people born with a uterus. Despite this, there is little public awareness of it and sufferers can sometimes wait a long time before receiving a diagnosis and an explanation for their problems.

The disease often leads to lengthy periods of sick leave, medical treatment, repeated surgeries and/or infertility treatment, significantly impairing sufferers’ life quality.

“The condition arises when the lining of the uterus, the endometrium, spreads beyond the uterus and forms small cysts, usually on the ovaries and the abdominal wall [see graphic], which ‘menstruate’ periodically when the sufferer has her period, leading to abdominal pain and chronic inflammation,” explains consultant and professor Kristina Gemzell Danielsson at the Department of Women’s and Children’s Health.

The causes of the condition are still unknown

Many theories have been put forward, but the disease is likely caused by a combination of genetic, immunological and environmental factors. One of the most widely accepted theories is based on the idea that women with endometriosis have retrograde menstruation, which means that blood collects in the abdomen via the fallopian tubes. Modern research has shown that stem cells could also play a role in the pathogenesis of endometriosis. Stem cells have unique properties that enable them to develop into different types of cell, and could therefore explain why the endometrium, via retrograde menstruation, manages to “invade” the abdomen and establish itself outside its organ of origin.

“Current research is examining different stem cell markers in the uterus and endometriotic cysts,” says Professor Gemzell. “We’re also looking at how different genes are expressed in the endometrium in women with and without endometriosis, and if these genes affect the fertilised egg’s ability to attach itself to the uterine wall. What we’ve found is that the endometrium in those afflicted by endometriosis has an abnormal gene expression, which varies depending on the degree of severity. We hope that our research will aid the development of therapies that can increase the implantation potential and fertility of those with endometriosis.”

Endometriosis is also associated with a slightly higher risk of ovarian cancer. In one ongoing study, scientists are examining tissue from women with endometriosis and ovarian cancer in order to uncover the biological mechanisms behind tumour formation. The aim of these studies is to identify early markers for the development of cancer and a basis for preventive treatment.

No cure available

Since the exact pathogenesis of the disease is still not fully known, doctors are usually unable to offer any cure. Patients are therefore only treated for their symptoms with pain killers, hormone therapy and/or surgery.

The researchers hope that the results of their different projects will provide new knowledge about the underlying causes of the disease, its affects on fertility and its association with ovarian cancer, and thus to potentially improve life quality for this patient group.

Endometriosis featured in Medicinsk Vetenskap

The latest issue of Medicinsk Vetenskap features endometriosis and the way the pain and bleeding it causes severely impinge on women’s working and social lives. It includes an interview with researcher Sebastian Gidlöf on the latest endometriosis research and the burden that the condition places on individuals and society.

“Research on gynaecological diseases is generally neglected and has a harder time getting funding,” explains Dr. Gidlöf, gynaecologist and researcher at Karolinska Institutet’s Department of Women’s and Children’s Health and the Department of Clinical Science, Intervention and Technology. “However, endometriosis research is further constrained by the difficulties of using a reliable animal model, so there is a lack of basic knowledge on how the disease arises.”

Endometriosis places an enormous burden on the sufferers and on society since it affects younger women of child-bearing and working age. For women, apart from the suffering it causes, it also means time off of work and a reduction in income. For society, it means an economic burden comparable to that associated with other chronic diseases, such as rheumatoid arthritis, Crohn’s disease or diabetes, largely due to sufferers’ reduced work capacity.

Would you like to help scientists discover the causes of endometriosis and how it can be cured? Make a donation to research online or contact us at theDevelopment Office.

For further information on endometriosis, contact the Swedish Endometriosis Association, a non-profit society dedicated to spreading knowledge about the disease and supporting sufferers. See www.endometriosforeningen.se