One of its enigmas is that one in three sufferers have no symptoms at all, says Dr Merwyn Jacobson of the Vitalab fertility clinic in Morningside, Johannesburg.
“In other women, endometriosis may cause severe menstrual cramps, pain during intercourse and even infertility,” says Jacobson, who has identified and treated endometriosis in many women.
Another mystery, he says, is that there is “no apparent correlation between the severity of the disease and the severity of the symptoms.
“Some women with milder forms of endometriosis suffer severe pain while other women with severe endometriosis have no pain or any other symptoms at all.”
As a specialist in reproductive medicine, Jacobson focuses on the causes of infertility, and endometriosis is high on the list. “All women should be aware they could be prone to this one-in-eight disease,” he warns.
When women come to see him, Jacobson asks them a range of questions including: do you experience pain during your menstrual cycle; do you experience pain during intercourse; do you have abnormal bleeding in your cycle (such as premenstrual spotting); have you ever seen blood in your urine or when you have a bowel movement?
So, what is this mystery disease and how can it be treated? No one factor is responsible for all cases of endometriosis, and it is likely that the disease has multifaceted beginnings. One of the widely held theories is that it occurs when some of the tissue or cells lining the womb (called endometrial tissue) “escape” during menstruation or via the lymphatic and vascular system, and then grow outside the uterus. More recent research suggests that environmental toxins may trigger endometriosis in susceptible women.
Whatever the cause, the endometrial tissue or cells can implant in the abdominal region of the body, such as the bowel. In rare cases it can even occur in the lungs.
The tissue may grow in small, flat patches called “implants”, in thicker nodules or may form cysts in the ovary called endometriomas.
“If the disease occurs in the ovaries, in a contained form such as a cyst, it can be detected by an ultrasound,” says Jacobson.
“But if it has grown elsewhere, the condition may not be detected. This is when a specialist should perform pelvic surgery with a laparoscope. It is important to note that even here endometriosis may be missed in some of its smaller, more subtle forms.”
A 38-year-old-director of a software company, who consulted Vitalab after failing to fall pregnant for several years, had no symptoms at all. She had been diagnosed with endometriosis a year previously when she had been operated on by another practitioner.
A successful businesswoman, she had decided to delay having a family to consolidate her career and she led a full but stressful life. Doctors at Vitalab decided to insert a laparoscope, a small tube with a camera, through her belly button to review her disease. They found endometriosis on the rectum and in the ovaries. As frequently happens, it had either not been entirely removed in the first operation or it had re-grown.
Many specialists believe that endometriosis is more likely to be found in women who have never been pregnant. For this reason the condition is sometimes labelled a “career woman’s disease”, because working women often delay pregnancy.
But, qualifies Jacobson, the condition cannot be so easily generalised – it sometimes affects women who have had children and can also occur in teenagers. “What is apparent is that when your body’s resistance is low and your neuro-immunology is not in a good space, if you are susceptible to endometriosis it might take hold during this time,” he says.
“There’s an old saying of ‘a sound mind in a sound body’ and when either is out of balance, whether through stress, illness, depression or some other cause, your immune system is less able to fight off disease.”
There is also a genetic predisposition to endometriosis: Vanessa Ncete is 26 years old and has had endometriosis since the age of 16. Her aunt on her mother’s side also had it, and it also developed in her teens. “At the age of 16, I started getting abdominal cramps, which I thought would pass,” Vanessa explains. “When the pain persisted, my mom took me to our GP, who put me on muscle relaxants. Although they helped a bit, a year later I still had the same pain.
“At this point my mom took me to a gynaecologist, who fortunately identified small spots on my ovaries, bladder and kidneys as endometriosis. He decided against operating immediately and put me on medication for a year, but the endometriosis got worse. “By this time I was 19, in my final year of a marketing degree and living with constant pain. It was hell. My gynaecologist decided the next step was to perform a laparoscopy because by this stage the endometriosis was everywhere: my ovaries, kidneys, liver, fallopian tubes and bladder.
“During the surgery, he managed to remove all the endometriosis and after the operation I felt like a new person. It was like a miracle, because I was pain-free for the next eight months.
“Then the pain came back and my gynaecologist referred me to the specialists at Vitalab. Through another laparoscopy, they again removed all the endometriosis “They also warned me the endometriosis could recur and that it could be associated with the fact that I was in a highly stressed work environment.
I was a year into my first job at an advertising agency and I had a boss who yelled at me all day. “To better cope with the stress a friend recommended I do a stress management course called the Time Urgency Management Course, led by Mandy Rodrigues whose husband is also a fertility specialist. It helped me enormously. “It taught me to practically resolve stressful situations without internalising.
After the course I resigned from my job because of my boss’s attitude. I have since joined a new agency where I have a wonderful boss and I am really happy at work. “Ten years later I still have pain, but it is not nearly as bad as it used to be and the endometriosis has not returned.”
Vanessa is fortunate to have been treated successfully so young. Endometriosis is highly unpredictable. Some women may have a few isolated spots that never spread or grow, while in others the disease may spread and recur many times. “There are various ways to manage endometriosis,” Jacobson says. “Medication will temporarily halt the progress of the disease, but it doesn’t cure it, and it will invariably return after you stop the medication.”
The side effects of certain types of endometriosis medication can be similar to those of menopause – hot flushes, vaginal dryness and loss of bone calcium – because it effectively renders you temporarily menopausal to interrupt your periods and halt the development of the disease. Laser is another form of treatment and some doctors use laser to burn out the endometriosis. “My colleagues and I prefer the microsurgical option over medication or laser,” says Jacobson. “We physically cut out the affected tissue or cyst with the aid of a laparoscope and we have seen excellent results.
“Patients need to make sure they go to someone who specialises in this form of excision surgery because you want to make sure that all the endometriosis is removed.”
As with all diseases, the sooner you have it diagnosed and successfully treated, the less damage it can cause.
The extent of the disease, combined with the damage caused and the patient’s health and genetic history will all play a part in whether you will be able to fall pregnant naturally after treatment, or fall pregnant following in vitro fertilisation (IVF) or fall pregnant at all.
The encouraging news is that even in the most advanced cases of endometriosis, there is hope with some miraculous turnarounds. Vanessa has since married and is trying to have a baby naturally. “I count myself lucky to have been diagnosed and treated while I still have many years to fall pregnant on my side. “If I don’t fall pregnant naturally after one year, my husband and I will try IVF, which is something that my aunt did, and she had a daughter this way.”