”I just can’t take it anymore.”
Dani* (23) is as thin as a rake and has dark shadows under her eyes. Her story makes you shudder.
“I was only 15 when my doctor told me l had lesions caused by endometriosis
on my bladder, intestines, ovaries and uterus. l know it sounds ridiculous but l was using about 60 tampons
a week – that’s about 240 a month and 2 880 a year. It's so bad now I've been bleeding continuously for the past year. I’ve been menstruating
for 365 consecutive days.
She has little energy and her weight is dropping. Her hair falls out by the handful and she's been told she needs blood transfusions and will possibly have to have a hysterectomy too.
"What if I can't have children? I don't know what to do. I’m emotionally exhausted,” she says.
A very common condition
Endometriosis is one of the most common gynaecological problems. Dr Johan van Schouwenburg, an expert in reproductive medicine, even calls the condition “the disease of the modern woman”.
"It occurs mostly among perfectionists and professional women whose jobs and lifestyles are accompanied by sustained, low-grade stress," he says.
But professional women aren't the only ones who suffer from it, cautions Dr Johan van der Wat, who specialises in reproductive medicine. According to him, the problem is far more common. "I'm seeing it in a range of patients, including those who don’t lead a stressful life. But it's frequently misdiagnosed and as a result many women suffer unnecessarily.”
The cause remains a mystery and many women suffer in silence because they feel their pain – especially during intercourse – is too personal to discuss with their doctors.
According to Dr Van der Wat, there's no reason why women have to live with the pain and bleeding. “It can be treated.”
What, exactly, is endometriosis?
Endometriosis is a painful, chronic condition that occurs in the endometrium, the mucous membrane that lines the uterus. It can also occur outside the uterus – in fact anywhere in the abdomen, including inside the ovaries and Fallopian tubes, on the ligaments that support the uterus and deep behind the womb.
Sometimes lesions form on the bladder and intestines or in old scars from a Caesarean section
or where a laparoscopy had been performed.
In rare cases endometriosis can occur elsewhere in the body – there have even been cases of lesions developing in the lungs, brain and nose. These are, however, the exceptions rather than the rule.
Wherever endometrial cells grow they behave as if in the uterus. During a woman's period the cells multiply in preparation for an embryo
and are then shed during menstruation. But while menstrual blood leaves the uterus through the vagina, endometrial blood and tissue have no way out and accumulate in lesions. This leads to inflammation in surrounding tissue.
Endometriosis often causes growths in the abdomen that can completely disrupt a woman’s internal anatomy. In serious cases organs can even start growing together, a condition called a “frozen pelvis”.
Characterised by intense pain
The intense inflammation of the lesions, along with the growths that pinch tissue and pull at organs, often leads to unbearable pain during menstruation. Sometimes that pain can last throughout the month. It often radiates to the groin, back and thighs and is sometimes so intense that it seriously disrupts a woman’s life and her relationships.
“It feels like a pair of pliers is gripping my uterus,” says Amy*, another sufferer. “Everything centres around the pain and it's difficult to focus on anything else.”
Pain during and after intercourse is another common symptom. Diarrhoea
and blood in the urine also frequently occur. Many women experience abnormal and irregular vaginal bleeding.
But not all endometriosis sufferers have equally extreme symptoms. Some women experience barely any pain at all despite having serious lesions, while others who have relatively few lesions have a really tough time of it. Some find out they have the condition only when they can’t fall pregnant.
Major cause of infertility
Around the world, fertility problems are often linked to endometriosis.
“Fibrin, a kind of ‘glue’ that forms naturally in the blood, ‘sticks’ the Fallopian tubes to the pelvis. This prevents the tubes from picking up the egg and causes infertility,” Dr Van Schouwenburg explains.
"The old, accumulated blood breaks down and releases toxins. This leads to spasms in the intestines or Fallopian tubes, which also disrupts their functioning and hampers pregnancy."
In addition, the toxins weaken the quality of the uterine mucous membrane to which the egg must adhere in order to develop. “If the egg can't attach it can't grow and so the woman can’t fall pregnant.”
”Endometriosis occurs in between 60% and 70% of all infertile patients we see– usually among women in their 20s and 30s,” Dr van Schouwenburg says.
Endometriosis is an enigma. There’s no certainty as to why it develops. It's generally accepted that it’s brought on when menstrual blood – containing bits of uterine lining – is “pushed” back through the Fallopian tubes into the pelvic cavity during menstruation.
Research has shown sufferers’ immune systems are affected so it’s likely they develop the condition because they don't produce the antibodies needed so stop the abnormal growth of the endometrium.
Endometrioses has even been blamed on the use of tampons. Most are made of bleached paper and consist of wood pulp and chlorine. This contains the toxic chemical dioxin, which can hamper physiological processes because it poisons the body.
But there’s no evidence tampons cause endometriosis.
- Pain is a striking symptom of endometriosis. If pain lasts longer than a day during menstruation, you should be checked for endometriosis.
- Pain during and after sex is another common symptom. It’s a deep-seated stabbing pain that sometimes lasts up to two days and occurs especially when you nave lesions in the deep hollow behind the uterus and the vagina.
- Sufferers sometimes experience abnormal and irregular vaginal bleeding.
- Intestinal irritation is another symptom. This includes a swollen abdomen – often wrongly diagnosed as a spastic colon – and constipation or diarrhoea during your period and at other times.
- When lesions are present in the bladder or intestines they can cause bloody urine or stools, which can be accompanied by discomfort during urination and sharp rectal pain.
- The risk of getting endometriosis increases throughout a woman’s reproductive years. After menopause, when menstruation ceases, the risk drops dramatically. Symptoms also often improve during pregnancy and breastfeeding
When a doctor suspects endometriosis the first thing he does is an internal examination. “If the patient has the condition she’ll experience pain when the cervix or uterine ligaments are manipulated,” Dr van Schouwenburg says.
“After that, an internal sonar is done to determine if there are lesions on the ovaries.”
A laparascopy is used to make the final diagnosis. A small incision is made in the navel and a tiny camera on a thin rod is inserted onto the abdomen so the doctor can look for any lesions.
“If endometriosis is present the lesions are usually removed immediately,” he says. One or two small incisions are made low in the abdomen in the pubic hairline. The surgeon inserts forceps and scissors and removes the tissue in accordance with images sent from the camera to a TV screen. The tissue can also be carefully burnt away with a laser. The incisions are so small only one stitch is needed to close each wound.”
Deep lesions require the skills of a gynaecological surgeon with comprehensive experience on endometriosis treatment as delicate work has to be done to prevent more growths and scars.
Surgical removal of lesions remains the best treatment. For symptomatic relief painkillers containing an anti-inflammatory can be taken.
Mirena, a vaginal contraceptive (IUD)
that secretes progesterone, can also bring relief and it sometimes helps to use a contraceptive pill or the contraceptive injection Depro-provera.
In serious cases endometriosis can be treated either with variants of the male sex hormone testosterone or with Zoladex, which induces temporary menopause
in a matter of days. Both shrink the endometriosis lesions but have negative side effects.
* Not their real names.