12 things no one tells you about endometriosis

There’s a lot of confusion surrounding endometriosis – a debilitating, painful condition that affects one in 10 women during their reproductive years. In endometriosis, a type of tissue that is similar to the lining of the uterus begins growing elsewhere in the body – the ovaries, fallopian tubes, and even the intestines – where it can cause ongoing pain and even infertility. The pain can be excruciating, explains Dr Piraye Yurttas Beim.

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The condition is distressingly common: around the world, approximately 200 million women of reproductive age suffers from endometriosis to some degree. That’s 11 per cent of women in Australia alone.

“Despite being among the most prevalent of diseases, the condition remains under-addressed and inadequately treated at every level of our healthcare system,” explains surgical program director, Heather C. Guidone. “A legacy of inaccuracies about endometriosis continues to be shared by doctors to patients, parents to adolescents, and media to the public, contributing significantly towards continued diagnostic delays, high treatment failures, and limited access to specialty care.”

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OB-GYNs aren’t necessarily endometriosis specialists

An OB-GYN physician is considered a primary care physician rather than a specialist, explains Dr Andrew Cook. These doctors don’t always have expertise in treating endometriosis or pelvic pain, says Dr Cook.

If you feel your OB-GYN is meeting your needs and you’re comfortable with your doctor’s care, that’s great, he says. If, however, you feel that your concerns are not being addressed, you may want to make an appointment with another doctor – preferably a surgeon – who specialises in treating endometriosis, advises Dr Harry Reich.

“Find someone who does a lot of surgery for endometriosis,” their site advises. At your initial exam, Dr Reich suggests keeping a mental checklist: the gynaecologist should perform a rectal exam and schedule laparoscopy with a biopsy for analysis. If not, “then the patient should look for another doctor, immediately,” Dr Reich says.

The condition can be found in adolescents and even in girls as young as 8 years old, explains obstetrician and gynaecologist, Dr Ken Sinervo.

“Around 70 per cent of girls and teens who exhibit pelvic pain will later go on to be diagnosed with endometriosis, which is why so many patients indicate that their symptoms began in adolescence, only to be dismissed for years,” he says. There seems to be a genetic component to the condition – women who have a close relative with endometriosis are up to 7 times more likely to develop it themselves, according to the Endometriosis Foundation of America.

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Despite what many doctors believe, the condition isn’t solely limited to the pelvic area in women. There are numerous reports of what is known as extrapelvic endometriosis –including rare cases involving the brain, says Dr Sinervo. “In our own Centre, for example, we routinely treat diaphragmatic, lung and sciatic endometriosis,” he says. “It is imperative that clinicians become familiar with the various presentations of the disease, including those that are non-classical in nature.”

This was a mistaken assumption, according to Dr Sinervo. “In truth, many women with endometriosis can continue to experience pain and, in some cases, even progressive disease during pregnancy,” he says. “Moreover, current research has demonstrated a link between endometriosis and a higher risk of adverse obstetric outcomes and complications.” In addition, it can affect fertility.

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Most people assume that signs of endometriosis can be spotted during a pelvic exam or during an ultrasound, but this is hardly ever the case, explains Dr Sinervo. Another mistake many doctors make is to rule out endometriosis as a diagnosis when a patient doesn’t respond to the drugs prescribed for the condition (oral contraceptives, for example, or GnRH agonists).

“Approximately 85 per cent of women who ‘fail’ medical suppression are found to have endometriosis at operation,” says Dr Sinervo. “In other words, the absence of evidence is not evidence of absence.”

Right now, the best bet for diagnosis is surgical, he explains. Using minimally invasive techniques, a surgeon will view and even biopsy tissue to confirm endometriosis. “This is why the development of a non-invasive, accurate marker for the disease is a highly prioritised research target.”

Some doctors still believe that a hysterectomy – complete removal of the uterus and potentially other female sex organs such as the cervix, ovaries and fallopian tubes – can cure endometriosis. However, Dr Sinervo points out that endometriosis is not always confined to these organs.

“The pain and symptoms arising from the disease are often not confined just to menstruation, in which case simply removing the uterus and stopping periods are not effective treatments,” he explains. “In fact, there have been many reports of endometriosis persisting after hysterectomy – even worsening. And we routinely treat patients who have had removal of their reproductive organs only to have significant disease left behind.”

In other words, it’s a myth that removing a woman’s reproductive organs can cure endometriosis. The options available for women suffering from endometriosis range from drug and hormonal therapies to specific types of minimally invasive operations, such as excision surgery.

“It is not always obvious how deep infiltration of endometriosis may be,” explains gynaecologic oncologist, Dr Steve Vasilev. With a technique known as excision surgery, the surgeon makes a small incision and then removes endometriotic tissue; Dr Vasilev explains that this gives a properly trained surgeon a better chance of getting all the problematic growth. He points out that some studies suggest excisional surgery may reduce pain associated with intercourse and bowel movements, as well as chronic pelvic pain.

Unfortunately, insurance coverage can be an issue: “Insurance carriers may be reticent to pay,” Dr Vasilev explains.