Endometriosis, a common and incurable disease
Pain and infertility are the most common symptoms of this chronic pathology, which is suffered by 15 to 20% of women of childbearing age
- By MONTSE ARBOIX
- 11 February 2011
Image: sanja gjenero
Endometriosis is characterized by the detection of endometrial tissue, the mucous membrane that lines the interior of the uterus, outside its usual location. The cause of its development, the relationship between the extent of the disease and the severity of the symptoms, and its effects on fertility are still completely unknown. And, for the moment, there is no cure. The available treatments are aimed primarily at relieving pain, attempting to delay injury and preserving or restoring reproductive function. Despite the fact that it affects an estimated 14 million women and girls in the European Union, and 176 million worldwide, there are few studies on the subject and little scientific evidence to support them.
Although endometriosis is most common in women aged 25-44, it has also been detected in adolescents. The data suggest that between 25% and 50% of patients with infertility problems suffer from it and between 15% and 87% of consultations for chronic pelvic pain have it as a trigger, although the references are highly variable depending on the authors and the populations studied. Reports from the United States point to it as the second leading cause of hysterectomy in that country.
This dance of numbers is due to two fundamental reasons: the difficulty of making an accurate diagnosis and the differentiation of the population studied. It is known that the age of highest prevalence is between the third and fourth decade. Some authors state that it is more frequent in Asian women. The diagnosis is made by laparoscopy (and biopsy) which often coincides with a scan to determine why a woman does not become pregnant.
However, this chronic disease, which is not dangerous for the woman concerned but which greatly affects her quality of life, still lacks curative treatment. It can be asymptomatic or develop a range of signs. The most common is pelvic pain, followed by painful or difficult menstruation (dysmenorrhea), painful sexual intercourse (dyspareunia), pelvic pain not associated with the menstrual cycle, difficult, painful and incomplete urination (dysuria) and constipation.
Some risk factors have been noted that may favor their development. These include premature menarche, before age 11, and cycles of less than 27 days or more than 32 days. In contrast, it appears that a large number of births and a long period of breastfeeding are factors that decrease the risk in multiparous women, as is the case with regular exercise.
Treatment of symptoms
Women who exercise two to four hours a week have a decreased risk of developing the disease
Treatment of endometriosis is aimed at alleviating symptoms, attempting to delay expansion and preserving or restoring reproductive function. The guidelines published by the American College of Obstetricians and Gynecologists for its management establish that treatment for a minimum of three months with a gonadotropin-releasing hormone (GnRH) agonist is effective in relieving pain, but when this symptom requires continuity, other medications must be associated, since the use of this drug causes loss of bone mineral density and brings forward the menopause.
Other drugs used are testosterone derivatives and birth control pills. Less invasive surgical methods that do not require hospitalization are laser ablation and tissue removal by CO2 laser vaporization. Removal of endometrial tissue from larger areas is often done with laparoscopic surgery or with hysterectomy in the most severe cases.
In addition to treatments to control the progression of endometriosis and relieve symptoms, some research indicates that following a healthy lifestyle would help improve patients’ day-to-day lives. Preliminary studies suggest that women who exercise two to four hours a week have a decreased risk of developing the disease. However, this benefit is limited in those who engage in vigorous exercise, such as jogging or any other sport that involves an increase in heart rate (aerobic exercise).
Following an adequate and balanced diet is the key to managing many diseases and improving overall quality of life. For this reason, scientific research has found benefit in a number of healthy eating tips: women who drink more than 1.5 cups of coffee a day are more likely to suffer from it, although no studies have shown that avoiding caffeine improves symptoms. Research conducted a few years ago and published in the American Journal of Obstetrics and Gynecology suggests that fish oil intake can reduce its severity and improve the symptoms of dysmenorrhea (painful menstruation), which can cause endometriosis. Another, published in “Family Practice News” (2004), proposed a combination of vitamin C and E, with the aim of helping to reduce pain in adolescents.
In a small preliminary work it was found that auricular acupuncture (performed in the auricle) was as effective as hormonal therapy in the treatment of associated infertility. However, although there are some reports that acupuncture can help relieve pain, there are no controlled studies to confirm this. For this reason, specialists insist that, although they provide benefits to some affected women, more research is needed to establish strong scientific evidence.
The voice and support of those affected
As with other chronic diseases, support groups and associations and expert patient associations, which give those affected the opportunity to share their experiences and concerns, help them to cope better. This is the case of the Association of People Affected by Cybernautic Endometriosis, ADAEC, a state-run group based in Valencia, which works from different parts of Spain thanks to new technologies and strives to inform, raise awareness and sensitize citizens and social health personnel about the disease.
María Antonia Pacheco Cumbre, president of ADAEC, explains that the average time for a diagnosis to be issued is around nine years. It is estimated that in that time a patient visits five different doctors – family doctors, gynaecologists and other specialists. During this period the patients suffer, in addition to the problems derived from the disease, “a considerable decrease in their quality of life due to stress, lack of knowledge and social, family and, in many cases, medical misunderstanding,” she adds.
This group, according to Pacheco, demands a series of requests from the health authorities:
- The drafting of a national guide.
- The formation of multidisciplinary work teams to minimize possible errors in diagnosis and quality of service provided.
- The creation of reference units for serious cases
- Early detection of the disease.
- Expediting waiting lists for fertility treatments.
- Monitoring of medications indicated for endometriosis.
- Changing the criteria for determining inability to work due to endometriosis
- The promotion of treatment research, a key aspect in addressing it and ensuring the right to health for women. Those affected are more likely to suffer from chronic fatigue syndrome, fibromyalgia, asthma, allergies, eczema, hypothyroidism and arthritis, among others.
Image: richie graham
One of the first questions women ask after diagnosis is whether it will affect their ability to have children. The data indicates that between 30% and 40% of those affected are not fertile, in other words, endometriosis is one of the three causes of female infertility. Many women find that they suffer from the disease when tests are performed to explain why they do not become pregnant. However, this does not happen in all patients, especially if the pathology is mild.
For infertility due to endometriosis, procedures such as in vitro fertilization (IVF) are effective. Although the use of hormones in conjunction with IVF is beneficial, other hormonal therapies do not give the same result. A recent review by the Cochrane Library, including 24 trials, indicates that there is no evidence of benefit from ovulation suppression for these patients, despite the fact that synthetic steroids have been used for years. Danazol is one of them, used for the management of pain and associated infertility. As the review concludes, it would improve the first symptom but not fertility, quite the contrary, as ovulation and periods stop during treatment.
Laparoscopy to remove endometrial tissue when the condition is mild or minimal is also effective in improving fertility. Some studies show that surgery can double the pregnancy rate. However, the likelihood of success always depends on the extent of the disease.