It is one of the least-known common conditions, but endometriosis affects one in ten women of fertile age. It consists of an external growth of the endometrium (the tissue that lines the inside of the uterus), causing severe menstrual pain which is often incapacitating. Many undiagnosed women have grown up being told that they are exaggerating, that periods are always painful. Emilia Villegas, one of the pioneers in gynaecology in Malaga, coordinates the Endemetriosis Unit at the Malaga Regional Hospital.
I don't know if you are aware, but when I mentioned your name to women with endometriosis, they said you are a guardian angel who has saved them from their ordeal of pain and uncertainty.
I'm lucky if that is the case. I do feel appreciated by them. It's what every doctor wants. We have had this unit for six years now. I have realised that patients find a type of inner peace because at last they feel understood, taken seriously. It's quite unusual. It doesn't happen with every pathology.
In general these patients feel they have been misunderstood and they have suffered from mistaken diagnoses. Many have even been referred to psychiatrists.
It is a curious condition because, even though it is benign, it has tremendous consequences for the women. It affects them in two important ways: the pain - which is often so incapacitating that they can't work, have relations with their partners or take the children to school - and fertility. On average, it takes between seven and ten years to diagnose endometriosis. They have become used to painful periods and problems deriving from that pain. That's why, by the time someone finally says "this could be endometriosis," and gives a name to what they are going through, they have suffered a real ordeal.
It is a benign condition, but it seems to cause destruction and even death.
Because it is benign but it behaves in an infiltrative way on the tissues. To explain briefly: endometriosis causes tissues to form outside the uterus when they ought to be inside. And that tissue can grow because immunity fails and the cells that should eliminate these tissues that form part of menstruation do not fulfil their function. And the tissues grow and affect different organs, such as the uterus and the intestines. That's why it is so destructive in character.
So it is 'benign', in inverted commas. The consequences can be serious in some cases.
It behaves terribly because it never stops, except during the menopause or pregnancy. And it continues to get worse.
It's also one of the primary causes of infertility.
Yes, endometriosis has to be one of the primary causes to be taken into consideration when someone suffers from infertility.
The women have grown up with the conviction that menstruation is painful. When does that pain stop being normal?
Dysmenorrhea, which is menstrual pain, stops being normal when an analgesic doesn't stop it. If a woman has to stop going to work or can't live her normal life, you have to start looking for causes, especially if it is something that happens every month.
So menstrual pain which is incapacitating isn't normal, and is a sign that something is not right.
Exactly. An ultrasound should be done, and tests to rule out focal points of endometriosis which could be causing that pain during menstruation.
Why is it important that these specialist endometriosis units are multidisciplinary?
It's essential. We gynaecologists can handle the genital side, but the illness doesn't stop there. When we talk of a deep endometriosis, which is the most severe degree, it affects the urethra, bladder, rectum... it is important that different professionals work together with these units. It's quite hard to put together an interdisciplinary unit because everyone has to understand what the illness is. In gynaecology we study it, but in the other specialities they don't, until the professionals see that it also affects other organs. In Andalucía there are two benchmark units: one in Malaga and the other in Seville. Each has its own territory and patients are referred there from other provinces. They have the right to be treated in the top hospitals. Our unit comprises coloproctologists, urologists, radiologists, pain clinicians, psychologists and gynaecologists. There are a lot of people involved.
It's interesting that psychologists are involved, but the delays in diagnosis mean that many women are suffering from depression and anxiety because for years they have been misunderstood and told that they are exaggerating.
When you play down a patient's pain, you are telling them you don't believe them. But they can't live a normal life and sometimes they don't know how to explain why. Continual pain always produces psychological problems. It is not common for them to turn to psychologists, because what they want is for someone to get rid of the pain. And when they find a medication or surgical procedure that alleviates the pain, their quality of life improves.
How many undiagnosed cases are there?
It is calculated that between ten and 15 per cent of women of fertile age have endometriosis. That's very high. It used to be an unknown condition, but these patients are very proactive and want to be heard. They have joined forces to get solutions and the social pressure has worked. I see an increasing number of cases being diagnosed nowadays.