Endometriosis Backgrounder for General Public Media For further information or to set up interviews with medical specialists or patients, please contact Oz Healthcare Communications on +27 11 465 5342 or Lynne Zurnamer | cell: +27 824483868 | e: lynne@oz.co.za Backgrounder for general media 2 Endometriosis – a painful, difficult to treat disease What is endometriosis? Endometriosis is a chronic disease where tissue that resembles the lining of the womb (uterus) is found elsewhere in the body.1 This tissue forms endometrial lesions which are most often found on the ovaries and all other organs within a woman’s pelvis. In very rare cases they can be found in the lungs and even the brain.1 Once implanted outside the womb, the endometrial tissue reacts to changing levels of hormones in a woman’s body during the course of her menstrual cycle, causing it to grow. This can cause inflammation and the formation of scar tissue, leading to pain. 2 Endometrial lesions can also lead to adhesions, which are 'sticky' areas of endometrial tissue that can fuse organs together. In addition, endometriosis can cause ovarian cysts (fluid-filled masses in the ovaries) which can sometimes become large and painful.3,4 What are the symptoms of endometriosis? The most common symptoms of endometriosis are chronic pelvic pain, period pain and pain during or after sexual activity.1,5 Other symptoms can include fatigue, painful bowel movements during periods and lower back pain.1,5 In addition, between 30-50 percent of women with endometriosis experience some degree of infertility.6 Not all women with endometriosis have symptoms and some women are only diagnosed with the disease when they seek help for problems with infertility. 1 How does endometriosis impact lives? The pain caused by endometriosis is both physically and mentally exhausting and can have an impact on all aspects of a woman’s life.7 Endometriosis can greatly impact a woman during the prime of her life, affecting her work life and personal relationships. 8 The pain can interfere with a woman’s education, career and productivity at work.8,9 Reduced productivity combined with the costs associated with diagnosing and treating endometriosis mean that the disease places an economic burden on society. 9 For further information or to set up interviews with Medical Specialists and patients, please contact Oz Healthcare Communications Tel: +27 11 465 5342 or contact Lynne Zurnamer | Cell: +27 824483868 | e: lynne@oz.co.za Backgrounder for general media Different women experience different degrees of pain and the amount of pain experienced is not always related to the size or number of endometrial lesions.2 While some women experience pain only at specific times during the menstrual cycle, one in four women with endometriosis suffers pain at all times during the cycle.10 Who gets endometriosis? It is estimated that endometriosis affects one in 10 women during their reproductive years.1,11,12 Risk factors for developing endometriosis include: endometriosis in the family, early onset of the menstrual period and heavy menstrual flow.1 Women who use oral contraceptive pills and women with low body weight (low body mass index) may be less likely to develop endometriosis. 1 How is endometriosis diagnosed? The symptoms of endometriosis can be difficult to recognise and even women experiencing pain from endometriosis may not realise that they have the disease.8 The symptoms often overlap with those of other conditions such as irritable bowel syndrome and pelvic inflammatory disease, making diagnosis very challenging.1 Furthermore, there is a lack of awareness about endometriosis amongst the general public and, as there is no simple test that can be used to determine whether a woman has endometriosis, it can take several years for the condition to be diagnosed. 8,13 For further information or to set up interviews with Medical Specialists and patients, please contact Oz Healthcare Communications Tel: +27 11 465 5342 or contact Lynne Zurnamer | Cell: +27 824483868 | e: lynne@oz.co.za 3 Backgrounder for general media Physical examinations, scans (ultrasound and MRI) and other tests are used in diagnosing endometriosis but, in order to make a reliable diagnosis, it is necessary to carry out a surgical procedure called a laparoscopy.14 During a laparoscopy, a thin tube containing a camera is passed into the abdomen (usually through the belly button). This allows the surgeon to inspect the organs in the pelvis and to take a small sample of tissue for analysis.14 How is endometriosis treated? There is no permanent cure for endometriosis. The aims of endometriosis treatment are to relieve pain, to slow the growth of endometriosis, to improve fertility (where a woman wishes to have children) and/or to prevent the disease from coming back after successful treatment.3,4 Options for treatment include pain killers, such as non-steroidal anti-inflammatory drugs (NSAIDs), and hormonal therapies such as the oral contraceptive pill, progestins and gonadotropin-releasing hormone analogues.1,5 Laparoscopic surgery can be carried out to remove the endometrial lesions, but lesions may return after surgery. 1,5 Nutritional therapy and complementary therapies are also used by some women.1,5 These treatments often do not meet the needs of all women living with endometriosis and may only be safe and/or effective for a limited period of time. GnRH-analogue treatments, for example, are effective but can only be used for a limited period of time due to concerns about side effects, including bone thinning.1,5 There is a real need for a specific, effective treatment with a side effect profile which makes it suitable for long term use by endometriosis patients. For further information or to set up interviews with Medical Specialists and patients, please contact Oz Healthcare Communications Tel: +27 11 465 5342 or contact Lynne Zurnamer | Cell: +27 824483868 | e: lynne@oz.co.za 4 Backgrounder for general media 5 LIST OF REFERENCES: 1 Jackson B & Telner DE. Managing the misplaced approach to endometriosis. Canadian Family Physician 2006;52:1420-1424. 2 Taylor M. Endometriosis – A missed malady. Aorn Journal 2003;77:297-313. 3 The investigation and management of endometriosis. Green Top Guideline No. 24. Royal College of Obstetricians and Gynaecologists. 4 The Practice Committee of the American Society for Reproductive Medicine. Treatment of pelvic pain associated with endometriosis. Fertil Steril 2008;90:S260–S269. 5 Kennedy S, Bergqvist A, Chapron C et al. ESHRE guideline for the diagnosis and treatment of endometriosis. Hum Reprod 2005;20:2698–2704. 6 Winkel C. Evaluation and Management of Women With Endometriosis. Obstet Gynecol. 2003;102:397-408. 7 Shepperson Mills D and Vernon M. Endometriosis: A key to healing and fertility through nutrition. London. 1999; 53. 8 Hummelshoj L. Update on Endometriosis. Women’s Health 2006;2:53-56. 9 Hummelshøj L and D’Hooge T. Economic aspects of endometriosis. Available from: http://www.bmg.bund.de/SharedDocs/Downloads/DE/Gesundheit/FrauenGesundheit/endometrieose__praesentation__hummelshoj,templateId=raw,property=publicationFile.pdf/endometrieo se_praesentation_hummelshoj.pdf Last accessed: September 2010. 10 Data on File. 11 Crosignani P et al. Advances in the management of endometriosis: an update for clinicians. Human Reproduction Update 2006;12:179-189. 12 Eskenazi B et al. Epidemiology of Endometriosis. Obstetrics and Gynecology Clinics of North America 1997;2:235358. 13 Hummelsjoj L. Endometriosis: the patient’s perspective. Women’s Health Medicine 2005;2. 14 Diagnosing endometriosis. Available at: http://www.endometriosis.org/diagnosis.html Last accessed September 2010 For further information or to set up interviews with Medical Specialists and patients, please contact Oz Healthcare Communications Tel: +27 11 465 5342 or contact Lynne Zurnamer | Cell: +27 824483868 | e: lynne@oz.co.za