Endometriosis: Recognising the Signs and Protecting Your Fertility

Every month it is the same. A hot-water bottle, painkillers that are not enough, a missed day at school or work, and that sentence heard since adolescence: "It's normal to hurt during your period, it will pass after marriage." It is not always normal. Behind pain this strong, endometriosis sometimes hides.

According to French health insurance and the WHO, this disease affects about one woman in ten of reproductive age, close to 190 million women worldwide. Yet it remains poorly known, and diagnosis often comes very late.

What is endometriosis?

Endometriosis is a chronic, inflammatory gynaecological disease. Tissue resembling the womb lining (the endometrium) grows outside the womb: on the peritoneum, around the ovaries and tubes, sometimes on the bowel or bladder. Like the womb lining, these lesions respond to the hormones of the cycle. Each cycle, they bleed with nowhere to go, which keeps inflammation and pain going.

French health insurance describes several forms:

• superficial, with lesions on the peritoneum, sometimes very painful despite their small size;
• deep, when lesions infiltrate the pelvic organs;
• ovarian, with cysts called endometriomas;
• adenomyosis, when the tissue infiltrates the muscle of the womb.

What are the symptoms of endometriosis?

The most common sign is dysmenorrhoea, meaning painful periods, but not just any pain: pain that stops your usual activities. The NHS and the WHO also list:

• heavy periods;
• lower belly pain outside periods, which becomes chronic;
• pain during or after sex;
• pain when passing stools or urine, especially during periods;
• great tiredness, bloating, nausea;
• difficulty getting pregnant.

The intensity of pain does not reflect how far the disease has spread. Some women have few lesions and a lot of pain, others many lesions and almost no symptoms. Some discover the disease during an infertility work-up.

Why does diagnosis take so long?

Because period pain is far too often played down, by those around you and by health professionals alike. The WHO acknowledges it: in many countries, neither the public nor most professionals know that this chronic pelvic pain is not normal. The average delay before diagnosis is between 4 and 12 years according to the WHO. In France, health insurance speaks of at least 8 years.

In Morocco, modesty around periods and sexuality does not help. Many young women do not dare describe pain during sex, or are told everything will sort itself out with a pregnancy. The symptoms also resemble those of other problems (fibroids, infection, irritable bowel), which blurs the picture.

How is it diagnosed?

Diagnosis begins with a history and a gynaecological examination. Imaging follows:

• transvaginal pelvic ultrasound, the first test, which spots endometriomas and some deep lesions well;
• pelvic MRI, which clarifies the extent of deep lesions and is useful before any surgery;
• laparoscopy, keyhole surgery under anaesthetic, which lets the surgeon see and analyse the lesions, and sometimes remove them in the same operation.

The WHO specifies that imaging can support the clinical diagnosis, and that laparoscopy, more definitive, is not available to everyone. Small superficial lesions often escape ultrasound. These tests require experience: it is perfectly legitimate to ask your gynaecologist which radiologist they refer you to, and whether they are used to this disease.

Which treatments?

No treatment cures endometriosis, but pain can be well controlled. The choice depends on your symptoms and your pregnancy plans.

Endometriosis also weighs on mood and on the couple. The WHO stresses the anxiety and depression that often come with it: psychological support is fully part of the care.

Endometriosis and fertility: what solutions?

Endometriosis does not prevent you from having children, but it can complicate conception: inflammation, adhesions around the tubes and ovarian cysts get in the way of egg and sperm meeting. According to the WHO, 25 to 50% of infertile women have endometriosis.

When you want a baby, hormonal treatments that block periods are stopped, since they also prevent ovulation. Several paths then exist, decided case by case:

• giving a natural pregnancy time, with follow-up: the British NICE guideline considers this wait, or surgery, before offering medical help;
• surgery, which the NHS mentions when the disease seems to hamper fertility;
• intrauterine insemination with stimulation, which NICE offers in some cases before IVF, whereas the NHS patient leaflet considers it of little use in endometriosis;
• IVF, which the NHS generally recommends in endometriosis or damaged tubes.

This divergence between British documents shows there is no single route. The right choice depends on your age, the state of your tubes, your ovarian reserve and your husband's tests. Our articles on artificial insemination and IVF and its legal framework in Morocco detail each step.

Endometriosis and pregnancy

Once pregnant, the pregnancy most often goes normally. Periods stop, which often eases pain for those months, without curing the disease. Tell your doctor about your endometriosis at the first pregnancy appointment, so that follow-up takes it into account.

The waiting, the tests and possible failures are exhausting. Our article on living with infertility as a couple offers ideas to get through this period without isolating yourself.