Endometriosis is an inflammatory, chronic and in most cases painful disease. It can affect all women with uterus and ovaries of reproductive age and is characterized by the presence of tissue similar to the inner layer of the uterus (endometrium) outside that organ.
And, as with the endometrium, these external foci react to hormonal variations during the menstrual cycle, which can cause bleeding of the "microscopic menstruation" type. These repeated cycles of growth and desquamation lead to inflammation and fibrosis.
Endometriosis can occur inside and outside the pelvis. Inside the pelvis, it can affect the bladder, intestines, appendix, vagina, and ureter. Very rarely, and outside the pelvic area, it can affect the lungs and central nervous system.
Endometriosis is thought to affect between 6% and 10% of the female population. There are 3 variants of the disease: superficial endometriosis, often asymptomatic, ovarian endometriosis and deep endometriosis. However, there is no proportionality between the intensity of the pain and the disease variant.
To date, this disease has no cure, and there are treatments to control the pain that can, in certain situations, be disabling.
Endometriosis is often, but not necessarily, associated with the notion of infertility.
In the month when International Women's Day is celebrated, News@FMUL spoke with Professor Carlos Calhaz Jorge, who clarified some doubts about the disease.
Calhaz Jorge is Full Professor at our Faculty, Director of the Department of Obstetrics, Gynaecology and Reproductive Medicine, and of the Centre for Medically Assisted Procreation of the Northern Lisbon Hospital Centre (CHULN).
Endometriosis is characterized as a benign disease. Is there a time when the fibroses that are created by the repeated process of inflammation can become malignant? In what way?
Calhaz Jorge: Endometriosis is, in fact, a benign disease with very special characteristics, as it can have an invasive mechanism in some situations. The transformation of endometriosis lesions into malignant diseases has never been seen. There are, however, some indications that endometriosis is associated with rare types of ovarian cancer, but this association has little or no clinical significance. To have a concrete idea, the absolute risk of a woman having a malignant ovarian tumour throughout her life is 1.3% in the general female population and 1.8% in women with endometriosis.
The estimated number of women suffering from this disease is approximately 2% to 17% (data obtained from the Portuguese Association for the Support of Women with Endometriosis). Are there not many more cases to be diagnosed?
Calhaz Jorge: This value depends highly on referencing systems and methodologies for obtaining numerical data. Thus, it is thought that endometriosis can exist in 6% to 10% of the global female population. It is found in approximately 40% of infertile women and can reach 70% in centres that treat patients with chronic pelvic pain.
What is the average diagnosis age? And what is the best way to diagnose endometriosis?
Calhaz Jorge: It is not possible to know the average age at diagnosis. What is accepted as unquestionable is that it can take several years (5-7 is often indicated) between the start of complaints and the diagnosis. This results, in part, from its symptoms being very varied and some of them being similar to those of other more common diseases. Also, there are no biochemical markers that allow us to know whether or not endometriosis is present through blood tests. Although there are imaging tests that allow a good degree of suspicion in some patients, the only way to make a safe diagnosis of endometriosis is through surgery, usually via laparoscopy. This is a surgical technique that resorts to small incisions in the abdomen wall and introduces optical and surgical equipment that allow the visualization of internal organs, namely the pelvis.
Can any Gynaecologist diagnose endometriosis or is there a subspecialty dedicated to this disease?
Calhaz Jorge: Any gynaecologist or, in general, any doctor can make this diagnosis, as long as he is alerted to the range of symptoms. But only gynaecologists with experience in the area will eventually make the final diagnosis, which, as mentioned, may have to include a surgical intervention. There is no structured subspecialty dedicated to this area, but there are reference centres, the CHULN Gynaecology Service being one of them.
There is much association between infertility and endometriosis, but not all infertile women suffer from endometriosis, and not all women with endometriosis are infertile.
Calhaz Jorge: In fact, endometriosis and infertility are associated with some patients, but not necessarily. There are many patients with marital infertility without endometriosis (just remember that there are many infertility cases of isolated male cause, that is, in which only the quantities or quality of the male cells are altered) and there are patients with endometriosis who become pregnant without the need for any medical treatment.
In what situations does endometriosis generate infertility?
Calhaz Jorge: In addition to much less frequent other situations, and in a simplified way, endometriosis can manifest itself essentially 1) as a superficial disease of the membrane that covers the entire interior of the abdominal cavity (called peritoneum), 2) as ovarian cysts, or 3) as an infiltrative disease of the pelvic wall. Or any association of the previous ones.
In addition, all these modalities are frequently associated with the creation of more or less extensive adhesions between the pelvic organs (uterus, ovaries, fallopian tubes, intestines, bladder), contributing to the alteration of the relationship between the organs and disturbing their function. Thus, infertility can be related to immunological and biochemical changes in the fluids that we have inside the pelvis (the peritoneal fluid) and/ or result from distortions in the configuration and in the functional relationship of the various organs.
There is no cure for endometriosis, but are there ways to control its symptoms?
Calhaz Jorge: If the origin of endometriosis is not exactly known and its manifestations are very varied, it is not possible to have therapeutic attitudes towards the cause. But, the symptoms are treatable using drugs and/or surgery. There is no superior therapeutic method. It all depends on the situation of each patient and the complaints they present. It is therefore unrealistic to use the word cure for this disease, unless the ovaries are completely removed, since the disease is absolutely dependent on hormones produced by the ovaries - oestrogens.
Is endometriosis disabling?
Calhaz Jorge: It can be, if it causes chronic pain of great intensity, not always easy to control.
Are studies dedicated to the treatment of endometriosis underway?
Calhaz Jorge: Yes, always. The attempt to find drugs that resolve the painful complaints of patients with endometriosis is an objective that has been maintained more or less permanently. Unfortunately, a drug close to ideal has not yet been produced.
Reports from women with endometriosis describe tearing pains that can last for long periods; for those who live with this reality, what forms are there to alleviate pain?
Calhaz Jorge: There are medications that greatly relieve the pain of the overwhelming majority of endometriosis patients, one being oral contraceptives (commonly called “the pill”). However, there are some situations that are very resistant to these treatments that may require surgery to remove the ovaries, which definitively cancels endometriosis, but it is obviously a difficult decision for young patients. In extreme cases of pain that resist the most usual therapies and when the patient does not want removal of her ovaries, there may be the need to resort to very specific treatments, within the scope of pain consultations.