The potentially debilitating chronic pain – both physical and emotional – that women with undiagnosed or poorly managed endometriosis may experience demands greater awareness, among healthcare professionals and the public alike
The World Health Organization (WHO) estimates that one in ten women globally is affected by endometriosis, although diagnosis of the condition is often delayed or missed.
“It is fundamentally important to reach the women who often silently suffer with this condition, as it can severely impact their quality of life, and diagnosis is particularly difficult,” says Dr Christo Benecke, a gynaecologist and obstetrician who specialises in the treatment of endometriosis, fibroids and polycystic ovary syndrome (PCOS), and practises at Netcare Christiaan Barnard Memorial Hospital.
“The two main complaints women present with when seeking assistance for this condition are ongoing pelvic pain and difficulty falling pregnant. The pain may be linked to the menstrual cycle, but it’s more than just bad period pain. Sometimes it is experienced as painful sensations when going to the toilet, or during intercourse – and this chronic pain really can affect all aspects of a person’s life.”
Endometriosis is a chronic inflammatory condition where tissue resembling the uterine lining, known as endometrial tissue, grows outside the uterus. In some women, this tissue can develop in other parts of the lower abdomen, including the bowel, fallopian tubes, ovaries or the tissue lining of the pelvic or abdominal organs. Outside the uterus, this tissue continues to thicken, break down and shed with each menstrual cycle, causing pain and inflammation.
“Over time, scar tissue can form, causing the pelvic muscles and organs to become stuck together, worsening the pain experienced. When endometriosis tissue grows in abnormal areas such as the fallopian tubes, it also affects fertility,” Dr Benecke explains.
“If first-line treatments for pelvic pain and infertility do not adequately manage or address these concerns, it could suggest the presence of an underlying condition, such as endometriosis, polycystic ovary syndrome or fibroids, among others, and your doctor may therefore refer you to a suitable specialist.”
Risk factors for endometriosis
The following factors may increase a woman’s risk of developing endometriosis:
- Starting menstruation at a young age
- Having never given birth
- Experiencing menopause at an older age
- Shorter menstrual cycles
- Heavy menstrual periods
- Low body mass index
- Higher oestrogen levels
- Family history of endometriosis
- Reproductive organ abnormalities
If endometriosis is suspected, diagnosis and management should be handled by doctors with a special interest and training in the condition, which is diagnosed with an appropriate laparoscopy procedure.
“It is also essential to recognise that the physical aspects of the condition frequently have dimensions that can be emotionally painful too, which necessitates empathetic, holistic treatment,” he says.
Dr Benecke works with a multidisciplinary team to address all aspects of chronic pain related to endometriosis, including the services of a psychologist, psychiatrist, pelvic floor physiotherapist, urologist, and endocrinologist.
“If endometriosis is confirmed, we first try to manage the condition conservatively with pain relief and, then if needed, hormones may be prescribed to suppress the growth of endometrial tissue, either in the form of the contraceptive pill or injections, or progesterone.
“If the woman does not get relief with hormones, then surgical excision of the endometriosis may be considered. It is important to note that while this procedure can allow a woman to conceive and relieve symptoms of endometriosis, the tissue can, unfortunately, grow back again later.
“The international data is quite clear that the person’s index, or first, surgery is fundamentally important to later outcomes. Excision of endometrial tissue requires significant surgical skill and specialised understanding of the condition.”
Dr Benecke points out that a hysterectomy is not necessary for people with endometriosis, other than in exceptional cases, as the uterus contributes very little to the condition.
“Awareness of the importance of early diagnosis of endometriosis is fundamental to reach both medical professionals and women who are experiencing persistent symptoms that do not resolve with initial treatment. No one should live in silence with the pain of endometriosis.”
Complex symptoms complicate diagnosis
“Women with endometriosis commonly report chronic pelvic pain, although there is a range of possible symptoms, and some women experience none at all,” Dr Benecke says.
Types of pelvic pain:
- Severe pelvic pain with menstruation
- Non-menstrual pelvic pain
- Pelvic pain during or after sex
- Pelvic pain with urination
- Pelvic pain with bowel movements
Other symptoms include:
- Heavy menstrual bleeding
- Abnormal menstrual bleeding
- Irregular menstrual cycles
- Debilitating menstrual cramps and period pain
- Anaemia
- Infertility or problems with fertility
“The symptoms are often cyclical, meaning that the pain is worse right before or during the period and then improves,” Dr Benecke explains.
If you are concerned about any symptoms you are experiencing, book a checkup or find a GP at your local Netcare Medicross by visiting https://onlinebookings.medicross.co.za/.
