Endometriosis is a debilitating condition that affects as many as one in 10 women, more than double the amount of women affected by breast cancer. But despite its severity and high prevalence there is an average delay in diagnosis of eight- to 10-years. The reason for the late diagnosis and its accompanying suffering is ignorance among many women about what is normal menstrual pain, and what is excessive.

‘€œPain and discomfort during the first day or two [of a woman’€™s menstrual cycle] is normal, but severe pain throughout and afterwards is not,’€ said Allan Alperstein associate professor at the obstetrics and gynaecology department at the University of Cape Town.

‘€œEndometriosis is a horrible disease that affects these women’€™s lives on all levels,’€ said Alperstein. The pain experienced by some women is so severe that they are literally incapacitated for a week every month. On a professional level, this leads to poor work performance, high absenteeism and could seriously hamper a women’€™s career progress, or in the case of a girl, her academic performance at school.

The effects on a woman’€™s personal life are even harsher. ‘€œI was a monster mom and a monster wife,’€ said Sangham. She admitted to having bad moods during severe bouts of pain. She also shied away from sex as the endometrial lesions in her pelvis made intercourse painful.

Pauline believes these factors placed a lot of strain on her marriage, and when she eventually had a hysterectomy after years of suffering, her husband finally left her saying that she couldn’€™t give him the child he always wanted.

What makes Pauline’€™s story even more tragic is that if diagnosed early and treated correctly, her endometriosis might have been managed well enough with medication and surgery that would have minimised her pain, and prevented her from having had a hysterectomy.

Pauline blames her ignorance of the disease as well as inappropriate treatment for her suffering and misfortune. She urges other women who think that they might have endometriosis to arm themselves with knowledge on how to manage this condition so that it doesn’€™t take over their lives.

Here is more information on endometriosis:

What exactly is endometriosis?

Endometriosis is a chronic disease where tissue that resembles the lining of the womb (uterus) is found elsewhere in the body. This tissue forms endometrial lesions which are most often found on the ovaries and other organs in a woman’€™s pelvis. In very rare cases they can be found in the lungs and even the brain.

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.

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 become large and painful.

What are the symptoms of endometriosis?

The most common symptoms of endometriosis are chronic pelvic pain, period pain and pain during or after intercourse. Other symptoms can include fatigue, painful bowel movements during periods and lower back pain.

Between 30% and 50% of women with endometriosis experience some degree of infertility. Not all women with endometriosis have symptoms and some women are only diagnosed with the disease when they seek help for problems with infertility.

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. While some women experience pain only at specific times during the menstrual cycle, one in four women with endometriosis suffer pain at all times during the cycle.

Who gets endometriosis?

It is estimated that endometriosis affects one in 10 women during their reproductive years, and is equally common among all ethnicities.

Risk factors for developing endometriosis include: endometriosis in the family, early onset of the menstrual period and heavy menstrual flow. Women who use oral contraceptive pills and women with low body weight (low body mass index) may be less likely to develop endometriosis.

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. The symptoms often overlap with those of other conditions such as irritable bowel syndrome and pelvic inflammatory disease, making diagnosis very challenging. 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.

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. 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.

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. 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. Laparoscopic surgery can be carried out to remove the endometrial lesions, but lesions may return after surgery. Nutritional therapy and complementary therapies are also used by some women.

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.

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.

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