Frequently Asked Questions about Endometriosis

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What factors can predispose the development of endometriosis?

We still do not know all the predisposing factors for developing this disease. Although there are various theories, none of them have been proved beyond a doubt. The most accepted theory revolves around retrograde menstruation. During menstruation, some of the viable fragments of endometrium reach the abdominal cavity by means of the Fallopian tubes where they adhere to the peritoneum and transform into endometriotic lesions. Oestrogens play a vital role in this process. Genetic or immunological factors have been used to explain why this only occurs in some women, even though retrograde menstruation is a universal phenomenon.

Why is it an underdiagnosed disease?

A delay in diagnosis of between 4 and 10 years is a common situation in many patients because for many years women, people around them and their doctors held the belief that the appearance of menstruation was naturally related to the presence of cyclic pain. Therefore, patients stopped visiting their doctors to complain about this pain and so endometriosis passed undiagnosed.

Can it be prevented?

Several studies have been conducted into whether a certain diet, the use of hormonal contraceptives or physical exercise can reduce the possibilities of developing endometriosis. Nevertheless, the results have not yet demonstrated any causal relationship, so it remains to be seen if these practices help prevent the onset of the disease.

Does the disease disappear with the onset of the menopause?

Patients with endometriosis generally undergo an improvement when they reach the menopause (a natural process that occurs at around the age of 50 in which oestrogen levels drop and menstrual periods stop). In some patients, however, and there is no clear explanation for this, the symptoms may persist with recurrences of the pelvic pain that are similar to the menstrual cycle. Furthermore, residual pain, although usually less intense, associated with scar tissue and fibrosis caused by endometriotic lesions (regardless of whether or not they received surgery) can continue after the menopause, as can pain derived from adherences and/or postoperative changes in functionality.

Symptoms occurring during the menopause in patients with a history of endometriosis must be given special attention when it comes to selecting the most appropriate hormone replacement therapy (HRT) as some treatments can worsen their symptoms. That is why it is important for patients with endometriosis to discuss the advantages and disadvantages of receiving HRT when they reach the menopause.

What are the symptoms of endometriosis?

The symptoms tend to be cyclic and coincide with the start of menstruation (or a few days before) and disappear at the end of menstruation (or a few days after). They appear each month according to the patient’s menstrual cycle. The most common symptoms are painful menstruation (dysmenorrhoea), non-menstrual pelvic pain (pain when you do not have your period), pain during sexual intercourse (dyspareunia), sterility, cyclic intestinal symptoms (periodic bloating, diarrhoea, constipation, etc.), painful defaecation (cyclic dyschezia), painful urination (cyclic dysuria), blood in the urine (cyclic haematuria), cyclic rectal bleeding and tiredness, amongst others.

Which methods are most typically used to diagnose endometriosis?

The best diagnostic technique for the diagnosis of both endometriomas and deep-infiltrating endometriosis (depending on the technician’s experience) is transvaginal ultrasound, either the 2D or 3D modality. An abdominal–pelvic MRI can be used to complete a diagnosis of the extent of deep-infiltrating endometriosis when nodules are observed in the highest portion of the pelvis or outside it. There are no blood tests currently available to confirm the presence of endometriosis, but the protein CA-125 can be detected in some cases, which helps reach a final diagnosis. It is important to highlight that the detection of this protein in premenopausal women is not a diagnosis of ovarian cancer. Laparoscopy must only be used for diagnosis in very specific cases.

Once diagnosed, what medical supervision must I follow?

Treatment, preferably hormonal therapy, must be initiated as soon as possible. There are no specific follow-up protocols in place; clinical and/or ultrasound check-ups should be planned every 6–12 months in function of your response to treatment, the control over your symptoms, the stage and location of the disease, your reproductive wishes, etc. This follow-up, particularly in cases of deep-infiltrating endometriosis, should be carried out in specialised reference centres that include multidisciplinary teams, if necessary.

How is endometriosis treated?

There are two basic lines of drug treatment, hormonal and analgesic, as well as surgical treatment. Some women with endometriosis turn to alternative therapies to alleviate their symptoms or improve their chances of becoming pregnant. Although there is evidence that some of these therapies may be effective, they should only be used as a complementary resource and never as a substitute for conventional medical treatments.

What types of treatment are available for endometriosis?

Hormonal therapies form the basis for the medical treatment of endometriosis. Their objective is to control the pain, but they are not indicated for improving fertility. Currently, the most prescribed hormonal therapies are progestogens (either orally or by means of an intrauterine or subcutaneous device), continuous therapy with combined hormonal contraceptives (orally or using an intravaginal ring), and GnRH antagonists, plus some others including antiprogestogens and aromatase inhibitors.

The best option for each patient depends on their symptoms, circumstances, preferences and the effectiveness and side effects of the given treatment. Other factors that must be considered are the treatment’s cost and availability, which can vary depending on the where the patient lives.

As endometriosis typically courses with pain, analgesic drugs (paracetamol, non-steroidal anti-inflammatories, morphine derivatives) are co-administered along with hormonal therapies in most cases.

Does endometriosis always require surgery?

No. Surgery is considered a second-line treatment. Its purpose is to eliminate the disease from any sites where it appears (peritoneal, deep infiltrations, endometriomas) while respecting the surrounding organs. At the moment, doctors believe surgical treatment should only be implemented in patients for whom medical treatment is ineffective or in special cases where the endometriosis may affect kidney function or the intestines, or to improve the patient’s fertility.

What is the prognosis for endometriosis?

Although it is considered a chronic disease, the prognosis is good for most patients. Patients are treated continuously with low-dose hormonal therapies from the moment of diagnosis. This controls symptoms of pain, prevents the disease’s progression and inhibits the recurrence of lesions. Doctors increased awareness of unusual pelvic pain means they are more alert to the diagnosis of endometriosis. Improvements in diagnostic techniques, especially in the field of ultrasound, facilitates very accurate staging of the disease without the need for surgery. Furthermore, the creation of specialised reference centres means patients can receive better care and individualised management.

What are the most severe complications associated with endometriosis?

On one hand, there are those related to the location of the actual lesions. In the case of patients with a delayed diagnosis of deep-infiltrating endometriosis, they may have suffered irreversible kidney damage with a loss of kidney [function] due to urethral entrapment caused by the endometriotic nodule; occlusive intestinal lesions that impose the need to remove part of the intestine; extensive cystic lesions in the ovaries, large endometriomas, that could eventually damage the patient’s ovarian reserve; and tubal lesions in the form of hydrosalpinx/haematosalpinx which mean the patient must rely on assisted reproduction techniques. On the other hand, all complications associated with the pain and its treatment can lead to a state of chronic pelvic pain.

What are the main side effects of endometriosis treatment?

The side effects of hormonal therapies are related to low oestrogen levels or directly to the effects of gestagens. Some of the effects are: headache, acne, weight gain, irregular bleeding, tiredness, vaginal dryness, hot flushes, and osteoporosis, amongst others. They are generally minor and transient side effects that disappear once the patient stops treatment. Very rarely patients may develop side effects in the form of coagulation disorders, principally, such as thrombosis or embolisms. These side effects vary, not only between the different treatments, but also between patients; therefore, a given treatment could be a good option for one patient and yet it could produce severe side effects in another. Hence it is very important to tailor the options to each patient. 

In the case of surgical treatment, the side effects originate from damage to the hypogastric plexus, which leads to innervation of the genitourinary system and lower intestine, the final consequences of which are pain, and gastric emptying and urination problems. Repeated surgery, which is sometimes common in patients with endometriosis, can cause chronic and treatment-resistant abdominal pain.

How does endometriosis affect patient quality of life?

Poorly controlled, treatment-resistant endometriosis triggers chronic pelvic pain, which significantly affects patients’ quality of life with negative consequences on personal, social and occupational aspects.

Is endometriosis synonymous with reproductive problems?

No, not in most cases. Infertility is defined as the inability to fall pregnant after one year of regular unprotected sexual intercourse. It is estimated that only 30%–40% of women with endometriosis encounter difficulties when trying to get pregnant and might have to turn to assisted reproduction techniques. Therefore, patients with endometriosis who do not wish to fall pregnant should discuss the most suitable contraceptive option with their gynaecologist.

Is pregnancy compatible with endometriosis?

Among the women with endometriosis and reproductive problems, most can get pregnant after the appropriate treatment. Patients must discuss it with their gynaecologist. Surgery may help in these cases and assisted reproduction programmes give the same results as for women who do not have endometriosis. However, the drug therapy used to treat endometriosis is always contraceptive and the chances of a natural pregnancy do not increase when it is stopped. It has recently been shown that pregnant women with endometriosis can experience more complications than others and so they must be considered as high-risk pregnancies.

Are recurrences very common after treatment? How are these cases treated?

It is important to remember that drug therapy is only effective while it is being taken and in most cases the symptoms reappear if you stop taking it. Therefore, you should continue to take the hormonal treatment until the onset of menopause, unless you want to get pregnant. Recurrences must be treated with the same tools as at the time of diagnosis. Occasionally, the refractory state of the pain response or the disease’s progression can result in a need to change or increase the hormonal treatment and, in some patients, to perform surgery.  

Can endometriosis cause cancer?

Endometriosis is a benign disease which does not cause cancer. The total number of women who have endometriosis and cancer is similar to the total number without endometriosis but who have cancer. Some types of cancer are slightly more frequent in endometriosis patients, such as ovarian cancer and non-Hodgkin’s lymphoma. There is no information available regarding how to reduce the risk of these cancers in women with endometriosis.

Substantiated information by:
Ana CarriónNurse — Gynaecology DepartmentMeritxell GraciaGynaecologist — Gynaecology DepartmentMª Ángeles Martínez ZamoraGynaecologist — Gynaecology Department

Published: 20 February 2018
Updated: 20 February 2018

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