In an interview with a local media house, thirty-five-year-old Elsie Wandera recounted how she had to endure severe period pains every month for 13 years before she could find out what was wrong.
That was until a doctor (gynaecologist) explained to her a condition that was best described as ‘your uterus growing inside out.’
Scientifically known as endometriosis, or in less glamourous terms:
‘Killer cramps. Killer Periods. Pain in the womb. ‘
‘Endo pain is excruciating pain. It is unlike any other feeling and has been described as worse than contractions or childbirth. To me, it felt like my internal organs were being twisted, ripped apart and dragged through my body.’
Endometriosis (pronounced en- doh – mee – tree – oh – sis) is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.
The name comes from the word “endometrium” which is the tissue that lines the inside of the uterus.
Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
It is a chronic and debilitating condition that causes painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems. Around 1 out of every 10 women are affected by end regardless of race or ethnicity.
Like the lining of the uterus, endometriosis growths usually respond to the hormones of the menstrual cycle. They can build up tissue and shed each cycle causing bleeding.
Currently, endometriosis is championed by Janet Mbugua, Ciru Muriku, Elsie Wandera and Njambi Koikai.
Elsie is also the founder of the Endometriosis Foundation of Kenya.
What Causes Endometriosis?
There are different theories that explain what causes endometriosis. However, they have not entirely been proven. Here are some of them;
- One theory suggests that endometrial tissue is distributed from the uterus to other parts of the body through the lymph or blood systems.
- A genetic theory suggests that certain families have predisposing factors for the disease.
- Surgical scar implantation has been cited in many cases as one of the causes of endometriosis. This happens after surgery, for instance, C-section. When endometrial cells attach to the surgical incision, then endometriosis occurs.
- Another theory suggests that remnants of tissue from when the woman was an embryo may later develop into endo or that some adult tissues retain the ability they had in the embryo stage to transform under certain circumstances.
SYMPTOMS OF ENDOMETRIOSIS
- Chronic pelvic pain
- Pelvic pain that gets worse after sex or a pelvic exam
- Chronically heavy or long periods
- Bowel or urinary disorders, often associated with periods
- Painful sexual activity, particularly with penetration
- Significant lower back pain with menses
- Allergies, migraines or fatigue that tends to worsen around menses
- Crippling menstrual pain
- Catamenial pneumothorax (lung endometriosis)
- Painful Sex (Dyspareunia)
This may be a symptom of endometriosis that involves deeper tissues of the vagina and pelvic walls. While painful sex can also lead to relationship and body issues, women can also start to become anxious and even fearful of having sex
- Painful Periods (Dysmenorrhea – Painful menstrual cramps):
Pain can last for more than one day and even continue after the period is over. Most commonly, pain can be felt in the lower abdomen, pelvis or lower back. The pain may not be easily relieved with non-steroid anti-inflammatory medications (NSAIDs).
- Abnormal Periods (Including Heavy menstrual flow (Menorrhagia) and prolonged periods)
A typical period will last 3 to 5 days. While it is considered normal to have a period lasting as long as 7 days, women with endometriosis can have periods longer than 7 days. In addition, the heavy menstrual flow will mean that tampons or pads usually need to be changed as often as every 1-2 hours.
- Bowel and urinary disorders
Disorders can include diarrhoea, constipation, painful urination, bowel movements, blood in urine, and frequent urge to urinate. Women can also feel nausea, vomiting, bloating and gassiness.
As scar tissue and adhesions build-up, it decreases the chances of fertilization occurring. The longer these lesions or related issues go untreated, the higher the risk of infertility. Studies have shown that endometriosis is linked to 1/3 of infertility cases, can prevent the release of eggs, and decrease the quality and number of eggs.
- Pelvic exam. During a pelvic exam, your doctor manually feels (palpates) areas in your pelvis for abnormalities, such as cysts on your reproductive organs or scars behind your uterus. Often it’s not possible to feel small areas of endometriosis unless they’ve caused a cyst to form.
- This test uses high-frequency sound waves to create images of the inside of your body. A standard ultrasound-imaging test won’t definitively tell your doctor whether you have endometriosis, but it can identify cysts associated with endometriosis (endometriomas).
- Magnetic resonance imaging (MRI).An MRI is an exam that uses a magnetic field and radio waves to create detailed images of the organs and tissues within your body.
- In some cases, your doctor may refer you to a surgeon for a procedure that allows the surgeon to view inside your abdomen (laparoscopy). A laparoscopy can provide information about the location, extent and size of the endometrial implants.
Areas of the body affected
Endometriosis pain levels can be affected by the depth and location of the lesions.
Endometriosis is described as having four stages. Each stage is based on location, amount, depth, and size of lesions. The pain associated with endometriosis may not correlate with the stage of the disease. For example, women with Stage 1 endometriosis could have significant pain or very few symptoms.
Endometriosis lesions are most commonly found in the pelvic area on organs such as Ovaries, Fallopian Tubes, Bladder and Intestines.
Treatments For Endo
Although there is no cure for endometriosis, a variety of treatment options exist.
Endometriosis treatment goals may include:
- Relieving/reducing pain symptoms
- Shrinking or slowing endometrial growths
- Preserving or restoring fertility
- Preventing/delaying recurrence of the disease
Supplemental hormones are sometimes effective in reducing or eliminating the pain of endometriosis. The rise and fall of hormones during the menstrual cycle causes endometrial implants to thicken, break down and bleed. Hormone medication may slow endometrial tissue growth and prevent new implants of endometrial tissue.
Hormone therapy isn’t a permanent fix for endometriosis. You could experience a return of your symptoms after stopping treatment.
Therapies used to treat endometriosis include:
- Hormonal contraceptives. Birth control pills, patches and vaginal rings help control the hormones responsible for the buildup of endometrial tissue each month. Many have lighter and shorter menstrual flow when they’re using a hormonal contraceptive. Using hormonal contraceptives — especially continuous-cycle regimens — may reduce or eliminate pain in some cases.
- Gonadotropin-releasing hormone (Gn-RH) agonists and antagonists. These drugs block the production of ovarian-stimulating hormones, lowering estrogen levels and preventing menstruation. This causes endometrial tissue to shrink. Because these drugs create an artificial menopause, taking a low dose of estrogen or progestin along with Gn-RH agonists and antagonists may decrease menopausal side effects, such as hot flashes, vaginal dryness and bone loss. Menstrual periods and the ability to get pregnant return when you stop taking the medication.
- Progestin therapy. A variety of progestin therapies, including an intrauterine device with levonorgestrel (Mirena, Skyla), contraceptive implant (Nexplanon), contraceptive injection (Depo-Provera) or progestin pill (Camila), can halt menstrual periods and the growth of endometrial implants, which may relieve endometriosis signs and symptoms.
- Aromatase inhibitors. Aromatase inhibitors are a class of medicines that reduce the amount of estrogen in your body. Your doctor may recommend an aromatase inhibitor along with a progestin or combination hormonal contraceptive to treat endometriosis.
Did You Know?
- More than half of all women who experience infertility have symptoms of endometriosis
- At least 200 million women worldwide have endometriosis
- Endometriosis is one of the leading causes of infertility
- Every five seconds, a baby girl is born who will have endometriosis
- Women on average suffer for 10 years or more before being correctly diagnosed with endometriosis
- Women with a close relative with endometriosis are 5 to 7 times more likely to also have it
- Yet nearly 60% of all women report they have never discussed their reproductive health with women in their family
- Endometriosis is the only known precursor to ovarian cancer.
Join us next week for part 2 of this series.
Cover Photo by Nicholas Githiri