Why we urgently need to talk about endometriosis
o other disease is so often undiagnosed or recognised too late as endometriosis. But what is endometriosis anyway? Today we're taking a closer look at the disease and potential symptoms that may indicate endometriosis. We will also explain what you can do if you are affected and what this diagnosis means for your desire to have children.
What is endometriosis?
Would you have known? Endometriosis is actually one of the most common gynaecological diseases. It is difficult to estimate how many women are affected worldwide, as there is simply a lack of data and many women do not even know that they are affected or have not yet been diagnosed with endometriosis. However, it is roughly estimated that between 7 and 25% of all girls and women of fertile age, especially between 25 and 35 years of age, suffer from endometriosis. On average, however, it still takes a whole 10 (!) years before it is diagnosed.
The name of the disease is derived from three ancient Greek words: "endon" (inside), "metra" (uterus) and "osis" (disease) and refers to benign but usually painful growths of uterine mucus-like tissue that grow outside the uterine cavity, often in neighbouring organs or tissue. These so-called "foci of endometriosis" often occur in the lower abdomen or pelvic cavity, on the ovaries, in the fallopian tubes, the deeper layers of the uterine wall or even in the bowel. In principle, however, this tissue can grow anywhere in the body.
The problem with these endometriosis centres is that they behave like the normal uterine lining. Specifically, this means that they build up and break down again during the menstrual cycle and bleed with every period. Unlike with conventional menstruation, however, the blood and the degraded tissue residues cannot flow out vaginally, but flow into the area surrounding the endometriosis centres, where they eventually accumulate.
The body can often break down these accumulations of blood again unnoticed, but in many cases these recurring accumulations of blood can lead to inflammation, adhesions, scarring and (blood) cysts, which can cause a variety of discomfort and pain. Some women find the growth of the endometriosis centres during the cycle very painful.
What are the causes of endometriosis?
Unfortunately, the exact causes of endometriosis have not yet been clarified. What is certain, however, is that several factors play a role in the development of endometriosis:
One such factor could be "retrograde menstruation". This term refers to the fact that during menstruation, some of the menstrual blood can flow in the "wrong" direction and thus enter the abdominal cavity via the fallopian tubes. This is not a cause for concern per se, as this occurs to a greater or lesser extent in around nine out of ten women. However, it is suspected that under certain circumstances, remnants of the uterine lining can colonise the abdominal cavity, which can lead to foci of endometriosis. This theory is also known as the implantation or transplantation theory.
The metaplasia theory takes a different tack. This states that the mucosal cells of the endometriosis centres develop directly on site (for example in the ovaries). For reasons that are still unknown, these develop from the cells on site, which emerged from the same embryonic cells as the endometrial cells during development in the womb.
Individual genetic factors also have an influence on the development of endometriosis, as the risk of developing endometriosis is around 6 times higher if your mother already had this problem.
Symptoms of endometriosis
The most common symptom of endometriosis is abdominal pain and cramps. These occur either before or at the same time as menstruation, but can also occur in the middle of the cycle and worsen with menstruation.
Depending on the part of the body where the endometriosis lesions are located, other symptoms may occur in addition to menstrual cramps, such as pain during sexual intercourse or pain during bowel movements or urination.
Good to know: The size and distribution of the endometriosis centre does not say anything about the severity of the symptoms. Sometimes a very small endometriosis focus causes very severe symptoms, whereas a pronounced endometriosis can even be symptom-free.
Diagnosis
As already mentioned at the beginning, endometriosis is often only recognised very late, as symptoms are often not recognised or not taken seriously (keyword: oh, the little bit of period pain is "normal").
If you have a concrete suspicion of endometriosis, for example because you are suffering from severe menstrual pain or are not getting pregnant (more on this later), you should consult a specialist. After a medical history interview, the specialist will perform a vaginal ultrasound examination. If the endometriosis growths are already very large or if cysts have already formed, they can be recognised in this way. Unfortunately, smaller growths or adhesions cannot be seen by ultrasound.
The only medical method to reliably diagnose endometriosis is laparoscopy, a minor surgical procedure. During this procedure, a camera is inserted into the abdominal cavity through a small incision near the navel and the abdominal cavity is examined. If growths are discovered, they can be removed. If you are unsure, tissue samples - known as biopsies - can be taken, which are then analysed under a microscope to confirm the diagnosis.
How is endometriosis treated?
Unfortunately, there is still no treatment that leads to a complete cure for endometriosis. However, this should not be a reason to despair, as there are indeed ways for those affected to alleviate the symptoms and thus improve their quality of life. Roughly summarised, endometriosis is usually treated with painkillers, hormone preparations or surgery.
If painkillers are used, non-steroidal anti-inflammatory drugs (NSAIDs) are usually prescribed. These include ibuprofen or diclofenac, for example, which have also been proven to help with severe menstrual pain.
Hormone preparations such as the Birth control pill are used to treat endometriosis, as they suppress the body's own hormone production in the ovaries and thus also the build-up of the uterine lining. This also alleviates the build-up of endometriosis centres and symptoms can be alleviated. However, in most cases endometriosis recurs when hormonal treatment is discontinued, which is why you need to evaluate for yourself whether or not you want to rely on hormone preparations in the long term.
The third method is the surgical removal of endometriosis lesions. As with the diagnosis, this procedure is performed under general anaesthetic using laparoscopy, although a larger abdominal incision (laparotomy) is rarely necessary. The chances of a successful operation are good, with 75 out of 100 women experiencing less pain afterwards. However, in one in five cases, new foci of endometriosis form within five years of the operation, which is why you should continue to monitor your symptoms closely and consult a doctor again in good time if necessary.
In extreme cases and if there is (no longer) a desire to have children, the entire uterus can also be removed. However, as this procedure is associated with a number of side effects, such as the immediate onset of the menopause, it should only be carried out after careful consideration and detailed medical consultation.
Endometriosis in the desire to have children
One of the most common questions when it comes to endometriosis is what this diagnosis means for your own health. Get pregnant means. In principle, the figures are not overly positive, as 30-50 out of around 100 women with endometriosis also suffer from infertility. However, the exact connection between endometriosis and the unfulfilled desire to have children has not yet been fully clarified.
The fact is that foci of endometriosis, adhesions and cysts in the fallopian tubes or pelvic area can prevent a woman from becoming pregnant, as this can prevent the transport or implantation of an egg or disrupt the function of the ovaries. It is also assumed that this can lead to problems with egg cell and early embryo development.
The best chance of pregnancy in such a case is if the endometriosis centres are surgically removed. There are indications that such operations increase the chances of a spontaneous pregnancy.
If you suffer from endometriosis and an unfulfilled desire to have children, it also makes sense to find out in good time about the possibilities of artificial fertilisation (IVF) so as not to lose any valuable time. If enough eggs can be retrieved from a woman, the success of artificial insemination is not affected by endometriosis.
If you have just read this article because you may suffer from endometriosis yourself or suspect that you have endometriosis, we would like to finish by letting you know that you are not alone with endometriosis, as unfortunately many women feel the same way. Although the diagnosis may feel like a bitter slap in the face at first, there are ways to alleviate the symptoms and it is not always impossible to have children despite endometriosis. It is important to seek medical help early on, not to give up and also to seek psychological support if you need help to learn how to deal with this diagnosis.
Sources:
Endometriosis (29.04.2024)
Diseases and therapies - Endometriosis (29.04.2024)
Health information - Endometriosis (29.04.2024)
H. Liu James (2022), Endometriosis
Health GV - Endometriosis (29.04.2024)
Ackermann, Feichter (2022), Endometriosis
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