Endometriosis: pain every month

Fabienne is out of action every month. As soon as her period starts, she experiences back and abdominal pain so severe that even the strongest painkillers offer little relief. Andrea is in a similar position, and also experiences pain when she has a bowel movement. She often nearly blacks out from the pain.

Their symptoms also plague their mental health. On many an occasion they’ve been told to “stop being such a wimp!”, even saying it to themselves. They often hear that “Pain during your period is perfectly normal.” But that’s not even close to the truth, especially not for endometriosis sufferers. The psychological strain is immense and can last for years. It’s estimated that around 280,000 women in Switzerland suffer from endometriosis.

What is endometriosis?

Endometriosis is a disease in which tissue similar to the lining of the uterus grows outside the uterus. This means cells from the uterine lining are not only found in the uterine cavity, but also on the uterine wall, ovaries, bowel, bladder or abdomen. In rare cases, they even grow in the lungs and other organs. If the cells grow in the uterine wall, this is known as adenomyosis; if they grow outside, it is endometriosis. 

During a normal menstrual cycle, the mucous membrane grows and thickens in the uterus in order to receive the fertilised egg. If no fertilisation takes place, the body rejects the mucous membrane, which we refer to as menstruation. With someone suffering from endometriosis, the same cells are involved as in the endometrium, they grow and bleed periodically too, driven by the sex hormones. In doing so, they cause a local inflammatory reaction which is extremely painful during their menstruation.

Years of suffering until diagnosis

Dimitri Sarlos, chief consultant for gynaecology & gynaecological oncology and head of the Centre for Endometriosis at Kantonsspital Aarau, knows only too well the psychological and physical stress his patients are under. Sadly, women with suspected endometriosis often come to him very late.

In fact, those affected have to wait on average five to six years before they receive the correct diagnosis and therefore the appropriate treatment. “The family doctor, a bowel specialist or urologist are often the first point of call when someone is suffering from bladder or lower abdominal pain. But these doctors don’t specialise in the symptoms of endometriosis, which is why they don’t necessarily focus on endometriosis when trying to determine a diagnosis.

Women with lower abdominal pain should always consult their gynaecologist first.” Above all, they should take their symptoms seriously and not delay going to the doctor. 

Unknown causes 

It’s still not clear today what causes endometriosis. Most likely it is a combination of different factors, explains Dimitri Sarlos. A widespread and generally acknowledged theory is that of retrograde menstruation. This basically means menstrual blood not only flows down through your vagina but also up through your fallopian tubes to the abdominal cavity. This in itself is nothing unusual and occurs in almost all women.

But with endometriosis sufferers, the blood isn’t metabolised in the abdominal cavity and the endometrium cells circulate and begin to grow. “It is also being discussed whether the spontaneous transformation of cell tissue could also play a role, the so-called metaplasia theory,” says Sarlos. However, science cannot yet explain why tissue suddenly develops into endometriosis as a result of incorrect programming.

In other words: it’s complicated. But what is certain is that it may run in the family. The predisposition to endometriosis can therefore be inherited, but doesn’t have to be. 

Diverse symptoms, complicated diagnosis

The cells usually cause discomfort where they have, wrongly, settled. Symptoms of endometriosis include severe menstrual pain, pain during sexual intercourse, bowel movements or urinating during menstruation. Some women also suffer from very heavy or irregular periods.

If it goes untreated, this illness can result in chronic permanent pain. Dimitri Sarlos: “The pain weighs on your mind, making treatment more complicated. Pain therapists often have to be brought in to break the vicious cycle. It is therefore vital to treat endometriosis in the early stages.”

However, diagnosis is not always straightforward, because endometrial growths can’t be detected by means of an MRI scan or ultrasound. Endometriosis can only really be diagnosed by performing a laperoscopy, in other words, a surgical procedure. Fortunately, today the disease can also be diagnosed based on the patient’s symptoms and medical history. 

Endometriosis and childlessness

Another symptom can be involuntary childlessness: as endometriosis patients very often suffer from fertility disorders. It is a stressful situation for those affected. Infertility can have many causes. One is that growths of endometriosis can block, inflame or damage the fallopian tubes, thus preventing the egg from reaching the sperm at all. Another reason for infertility is that inflammation prevents the egg from implanting in the uterus. And finally, many of those affected don’t experience proper ovulation.

Quite often, women only receive the diagnosis endometriosis when they are older, meaning the reason for their childlessness remains unknown until it is too late. It doesn’t have to be that way, because surgery to remove the endometrial growths significantly increases the chance of conceiving. 

Endometriosis treatments: no standard treatment

Treatment doesn’t necessarily mean surgery. The recommended course of action depends on how severe the growths are, the patient’s symptoms and their quality of life. According to Dimitri Sarlos, anti-inflammatory painkillers suffice for a patient suffering from a very mild form with little to moderate pain. If the endometriosis is more pronounced, hormone treatment or surgical intervention may be deemed appropriate.

One possible hormone therapy is the birth control pill. This can help to stabilise the menstrual cycle and, with long-term use, even stop your periods. There is currently only one medication specifically designed to treat endometriosis: a hormone preparation that dries out the endometrial growths using progesterone. Sarlos has seen very good results using this. However: “every hormone has side effects such as headaches, nausea and weight gain due to fluid retention. However, side effects are minimal and normally only occur during the first month of use – you just have to grit your teeth and then it normally improves.”

Depending on the severity of the endometriosis, and, in the event of an unfulfilled desire to have children, the endometrial growths can be removed during laparoscopic surgery. Women who don’t want children, or have no further plans for children, may also be offered the option of a hysterectomy.

High risk of recurrence

However, there’s no guarantee that endometriosis won’t flare up again despite proper treatment. But that doesn’t have to be the case, adds Dimitri Sarlos. There are certainly some patients who remain symptom free or, at the very least, relatively symptom free. It is very often the case that those affected suffer so much that there really is no alternative but to take action.

But one thing is absolutely vital according to the gynaecologist: “If an operation is the preferred course of action, I would highly recommend consulting an endometriosis specialist.” There are several certified endometriosis centres in Switzerland and all of them employ specialists. “A lot can go wrong during an operation if the surgeon lacks experience. Surgical therapy of endometriosis is therefore best left in the hands of the specialists.”