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World’s largest endometriosis study needs your help!
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Researchers from Semmelweis University, Budapest, Hungary, are on a mission to speed up the diagnosis of endometriosis, the debilitating disease that affects nearly 200 million women worldwide. In a groundbreaking new initiative, along with researchers from all over Europe, Hungarian scientists invite women to participate in the largest-ever study of endometriosis. They aim to solve many of the mysteries surrounding this incurable chronic condition. Those with endometriosis can experience excruciating pain daily, heavy periods, and sometimes infertility.
Previous research shows, diagnosing endometriosis takes an average of 7 years worldwide. In Hungary, it is 4 years; in the UK and the US, it takes twice as long – 8 and 9 years, respectively.
Endometriosis is a chronic condition where tissue from the womb’s lining grows in other areas and organs, such as the pelvis and ovaries. It is often associated with a woman’s menstrual cycle and hormonal changes. The main symptoms are pelvic pain, heavy and painful periods, pain after sexual intercourse, lower back pain, and debilitating fatigue. About one in three women with endometriosis may encounter problems trying to have a baby. The causes of the disease are still widely unknown.
“Unfortunately, there is no non-invasive way to diagnose endometriosis, especially in the early stages. Only a laparoscopy (cutting small holes in the abdomen to put through a tube with a camera into the stomach area) will show if someone suffers from the disease.
The signs of the illness can be picked up from the patient’s medical history or an ultrasound scan, but to fully confirm the condition, patients need to go through an expensive and unpleasant procedure, which could be one reason for the diagnostic delay,”
says Dr. Attila Bokor, Associate Professor, Head of Minimally Invasive Surgery Unit at the Department of Obstetrics and Gynecology, Semmelweis University.
Therefore, Hungarian researchers are now inviting women – with and without diagnosed endometriosis – from Europe to complete a monthly questionnaire over a year via a mobile app called Lucy (by Yourcode Lab Ltd.). They hope to collect self-reported data on endometriosis symptoms, sociodemographic data, mental and physical health information, and dietary and other lifestyle factors to speed up the time to diagnosis and develop new and targeted treatment options.
“We want to conduct a longitudinal study of 10,000 women with endometriosis and 10,000 healthy women over 12 months. We need many participants, and the Lucy app is available throughout Europe in Danish, English, French, German, Hungarian, Italian, and Swedish already.
By signing up, the key is to fill out the questionnaire every month so we can monitor the development of the disease,”
explains Dr. Dóra Balogh, Research Fellow at Semmelweis University.
Endometriosis usually presents itself in three primary forms: ovarian cysts, peritoneal (superficial), and deeply infiltrating endometriosis, which can involve various organs. Based on these categories, Hungarian scientists hope to identify potential patient groups, lifestyle, and dietetic factors that can have a role in developing or treating the illness.