ENDO... WHAT?

Dr. Jayeshnee Moodly, Gynaecologist & Obstetrician at Melomed Richards Bay
MBChB, FCOG (SA), MMed (O&G), AHMP (YALE)

Every year, millions of women are told that they have IBS, ovarian cysts, or dismissively, hypochondria. But they don’t… they suffer from endometriosis.

You may have heard the word, but do you really know what it is? Many women don’t until they find out they have it… which would make sense if it weren’t so common. Endometriosis affects an estimated 200 million women worldwide, or 10% of women of reproductive age. It is the second most common gynaecological disorder.

What is endometriosis?
Endometriosis is an often painful, chronic condition that affects a woman’s reproductive organs. It happens when the tissue similar to the cells lining the inside of the uterus - the endometrium - grow outside of it. Often it is found on, and around, the pelvic and abdominal organs, including the ovaries and fallopian tubes where it causes ectopic lesion growth, local inflammation and debilitating pain. Rarely, endometrial-like tissue may be found beyond the area where pelvic organs are located.

What happens?
The endometrial-like tissue acts as endometrial tissue would and may:
• have the same cyclical/ menstrual changes inside and outside the uterus - thickens, breaks down and bleed at the same time as your menstrual period but the misplaced blood has no place to go and it becomes trapped.
• start to grow and may form patches, or nodules on internal organs or on the peritoneum (inside lining of the abdomen and pelvis)

When endometriosis involves the ovaries, cysts called endometriomas may form. The surrounding tissue can become swollen, irritated and inflamed, often resulting in cramps which become more intense during the latter days of a menstrual period. When menstruation ends, the abnormal bleeding also stops, but scar tissue and adhesions form as the endometrial clumps heal. These bands of fibrous tissue can cause the pelvic tissues and organs to stick to each other. Fertility problems also may develop. Fortunately, effective treatments are available.

What are the common signs and symptoms? The primary symptom of endometriosis is pelvic pain, often associated with menstrual periods. Some women have no symptoms whilst others may suffer debilitating pain even with mild disease. Although many experience cramping during their menstrual periods, those with endometriosis typically describe menstrual pain that's far worse than usual. Pain also may increase over time.
Endometriosis usually develops several years after the onset of menstruation (menarche). Signs and symptoms of endometriosis may temporarily improve with pregnancy and may go away completely with menopause, unless you're taking oestrogen.

The following symptoms are associated with endometriosis and each one of these can have a profound negative effect on a woman’s quality of life.
• Excessive bleeding. You may experience occasional heavy menstrual periods or bleeding between periods (intermenstrual bleeding).
• Painful periods (dysmenorrhea). Pelvic pain and cramping may begin before and extend several days into a menstrual period. You may also have lower back and abdominal pain.
• Painful cramps (that can occur even when a woman isn’t menstruating)
• Pain with intercourse. Pain during or after sex is common with endometriosis.
• Pain with bowel movements or urination. You're most likely to experience these symptoms during a menstrual period.
• Excessive bleeding. You may experience occasional heavy menstrual periods or bleeding between periods (intermenstrual bleeding).
• Infertility. Sometimes, endometriosis is first diagnosed in those seeking treatment for infertility.

You may also experience chronic fatigue, diarrhoea, constipation, bloating or nausea, especially during menstrual periods.
The severity of your pain may not be a reliable indicator of the extent of your condition. You could have mild endometriosis with severe pain, or you could have advanced endometriosis with little or no pain.
Endometriosis is sometimes mistaken for other conditions that can cause pelvic pain, such as pelvic inflammatory disease (PID) or ovarian cysts. It may be confused with irritable bowel syndrome (IBS), a condition that causes bouts of diarrhoea, constipation and abdominal cramping. IBS can accompany endometriosis, which can complicate the diagnosis.

Risk factors
Several factors place you at greater risk of developing endometriosis, such as:
• Never giving birth
• Starting your period at an early age
• Going through menopause at an older age
• Short menstrual cycles - for instance, less than 27 days
• Heavy menstrual periods that last longer than seven days
• Having higher levels of oestrogen in your body or a greater lifetime exposure to oestrogen your body produces
• Low body mass index
• One or more relatives (mother, aunt or sister) with endometriosis
• Any medical condition that prevents the passage of blood from the body during menstrual periods

NO ONE KNOWS WHAT CAUSES ENDOMETRIOSIS
“Most women don’t realise they have endometriosis until they try to conceive a child, and approximately 30–40% of women who have endometriosis experience issues with their fertility”

So many aspects of endometriosis are misunderstood, and require further research so that we can better understand endometriosis and, most importantly, how to treat and help the women who suffer from it. Although the exact cause of endometriosis is not certain, possible explanations include:
• Reverse or retrograde menstruation and endometrial spill – that’s when the menstrual flow goes backwards into the fallopian tubes instead of leaving the body. This can carry endometrial cells from the uterus and into the pelvis. These endometrial cells stick to the pelvic walls and surfaces of pelvic organs, where they grow and continue to thicken and bleed over the course of each menstrual cycle.
• A problem with the immune system may make the body unable to recognize and destroy endometrial-like tissue that's growing outside the uterus.
• Some research suggests that cells in any location may transform into endometrial cells that bleed cyclically.
• Endometrial tissue may travel via blood or lymphatic channels to other part s of the body and implant.
• Transformation of peritoneal cells. In what's known as the "induction theory," experts propose that hormones or immune factors promote transformation of peritoneal cells - cells that line the inner side of your abdomen - into endometrial-like cells.
• Embryonic cell transformation. Hormones such as oestrogen may transform embryonic cells - cells in the earliest stages of development - into endometrial-like cell implants during puberty.
• Surgical scar implantation. After a surgery, such as a hysterectomy or C-section, endometrial cells may attach to a surgical incision.

Complications
Infertility
The main complication of endometriosis is impaired fertility. Approximately one-third to one-half of women with endometriosis have difficulty getting pregnant.
For pregnancy to occur, an egg must be released from an ovary, travel through the neighbouring fallopian tube, become fertilized by a sperm cell and attach itself to the uterine wall to begin development. Endometriosis may obstruct the tube and keep the egg and sperm from uniting. But the condition also seems to affect fertility in less-direct ways, such as by damaging the sperm or egg.
Even so, many with mild to moderate endometriosis can still conceive and carry a pregnancy to term. Doctors sometimes advise those with endometriosis not to delay having children because the condition may worsen with time.

Cancer
Ovarian cancer does occur at higher than expected rates in those with endometriosis. But the overall lifetime risk of ovarian cancer is low to begin with. Some studies suggest that endometriosis increases that risk, but it's still relatively low. Although rare, another type of cancer - endometriosis-associated adenocarcinoma - can develop later in life in those who have had endometriosis.

What can you do?
If you think you have endometriosis, see your doctor who can refer you to a gynaecologist. Endometriosis can be a challenging condition to manage. An early diagnosis and treatment, a multidisciplinary medical team and an understanding of your diagnosis may result in better management of your symptoms and may reduce the severity of the disease.
Many women do not get a correct diagnosis for up to 7–10 years, often because the symptoms can be different between women and can change over time.
Endometriosis can be difficult to diagnose, especially in the approximately 25% of cases in which there are no symptoms. When a doctor suspects endometriosis, he or she may perform a pelvic examination during and shortly after the woman’s menstrual period. Endometriotic implants are felt on the surface of affected organs as nodules (cobbles). Diagnosis is confirmed by laparoscopy, a minimally invasive surgical procedure that uses a thin tube, lenses and a light source to examine the pelvis. A biopsy of suspicious tissue which is then examined microscopically can also confirm the diagnosis. Other tests include a pelvic ultrasound, CT scan or MRI.

Managing and treating endometriosis There is no known cure for endometriosis and most available medical treatments have certain limitations. Treatment options include:

1. NOT TREATING OR “WATCHFUL WAITING”
If symptoms are mild and fertility is not an issue for you then you may not want any treatment. In about 3 in 10 cases, endometriosis clears and symptoms go without any treatment. You can always change your mind and opt for treatment if symptoms do not go, or become worse.

2. PAIN KILLERS
and non-steroidal anti-inflammatory medicine to alleviate the symptoms.

3. HORMONE THERAPY
can slow growth by temporarily changing the normal patterns of female hormones. One tactic is to mimic the hormone levels of pregnancy by giving high oestrogen oral contraceptives. Endometriosis disappears when a woman is not ovulating, such as during pregnancy. Another tactic is to produce an artificial menopause by giving medications that halt ovulation temporarily. Without the monthly hormonal stimulation of a menstrual cycle, endometriosis tissue shrinks and eventually disappears.

4. SURGERY may be performed to remove endometrial tissue growing in abnormal locations. Options include:

• Laparoscopy, a thin tube with a lens and a light inserted into a small incision in the abdominal wall to see into the pelvic area and remove endometrial growth
• Laparotomy, a more extensive surgery to remove as much of the endometriosis as possible without damaging healthy tissue
• In severe cases, a hysterectomy (a surgery to remove the uterus and/or the ovaries) may be recommend to alleviate the symptoms. However, this course is reserved for women with incapacitating menstrual pain who do not plan a future pregnancy.

Endometriosis is a lifelong diagnosis with often quality of life limitations. It can greatly impact a woman's social, professional and personal life, and women with endometriosis often experience a higher incidence of depression and emotional distress due to the uncertainty of diagnosis and unpredictability of symptoms and living a normal life. Knowing your diagnosis and seeking help from your gynaecologist early will limit the extent of your disease and ensure your quality of life remains a good one.