What is endometriosis?

Endometriosis as a chronic disease is gaining increasing attention. However, people who do not know someone with endometriosis often do not know what it is. Even if you know someone who has endometriosis, you may be afraid to ask, because endometriosis affects the gynaecological field – still a taboo, but one that is slowly beginning to crumble. Here, in the first part of a series on endometriosis, I explain what this disease is and how it affects one.

Trigger warning: This article is about severe pain, medical gaslighting and the gynaecological field. If these topics trigger you, do not read the article alone.

An extremely nasty „benign“ disease

Endometriosis is a so-called „benign“ disease in which tissue that is so similar (!) to the lining of the uterus grows outside the uterus. It is called benign because the cells do not develop into malignant tumours, as in cancer, but behave similarly in principle. Unfortunately, the term, especially in German, is misleading and does not mean that endometriosis is an unproblematic or harmless disease.

Outside the uterus, these endometriosis lesions cause bleeding that follows the female cycle. This means that the lesions bleed in the abdomen during the period. These lead to local inflammatory reactions and spread into the abdomen, so the „bad“ tissue can be everywhere in the woman`s belly.

However, the blood does not drain away in the normal way, which can cause cysts, adhesions, inflammation and scarring that can lead to sometimes very severe pain and, in extreme cases, endanger other organs.

EVA- Endometriose Vereinigung Österreich

Deep infiltrating endometriosis has already eaten deep into the tissue of surrounding organs/tissues and cannot be removed easily and sometimes (depending on the location) not at all. Endometriosis cannot be cured, which is why the course of many patients is described with an increase in problems over the years. Endometriosis lesions can also lead to adhesions and growths in the abdominal cavity, which disrupts the functioning of organs. If these adhesions remain untreated or increase, life-threatening conditions are possible – for example, acute intestinal obstruction. Normally, however, patients are already present to a specialist.

Endo-surgery

For a definitive diagnosis and if there are already visible endometriosis cells, a laparoscopy can be performed to look into the abdominal cavity (up to the lungs) to see where and whether endometriosis are present. In the case of superficial endometriosis, these are usually cut out directly or burned, which can often improve the symptoms.

Endometriosis can also cause symptoms outside of menstruation, for example endometriosis of the ovary or the tube. So far, we do not know exactly how the menstrual cycle and the tissue are related, only that they can be painful. Some women even have pain every day, which in turn increases the complexity of the diagnostic pathway. This happens especially in more severe, untreated cases.

However, this quickly leads many young women into a diagnosis-delaying cycle: the hormones often improve symptoms, which is why no operation is performed and thus no diagnosis is made. More on this soon in the second part of this series.

Adenomyosis – even less known

A subtype of endometriosis is adenomyosis, an even more poorly researched disease in which tissue grows into the muscular layer of the uterus. Sometimes it is described as a disease in its own right, often called „endometriosis of the uterus“.

Symptoms of adenomyosis also include uterine cramping (sometimes enormously), increased likelihood of infertility, premature birth or miscarriage, blood clots or extremely heavy bleeding, lower back pain, bloating, difficulty urinating, nausea, etc. However, many of the symptoms are the same as those of endometriosis or also occur with endo. Doctors are not yet in agreement as to whether adenomyosis is a disease in its own right or should be seen as a „subform“ of endometriosis. In any case, the cell structure is different: adeno is the lining of the uterus and endometriosis is similar tissue. However, some women have both conditions and some have no problems with adeno at all (around 30%). Between 38% and 64% have adenomyosis without other endometriosis. The diagnosis is very difficult and there is no consensus in research on this either.

While the diagnosis of adenomyosis uteri is strictly speaking only established by histological evidence, diagnosis by MRI or sonography or by a combination of both methods is now also accepted as evidence.

Leitlinie „Diagnostik und Therapie der Endometriose“ 2020-2023

Perspective?

Endometriosis and/or adenomyosis are one of the most common causes of infertility. The cause, therapy and more targeted treatment (with fewer side effects than permanent hormone therapy) are still big question marks. Every person who helps to raise awareness of this disease, donates to support groups or tells others about it, helps other women to be diagnosed more quickly and boosts research, as the representative groups can lobby better.

Let’s stop telling young girls and menstruating persons that such severe pain must be endured.

This is not normal.

My perception is that education about endometriosis is developing more and more. Increasing numbers of newspaper articles and reports are being published about this disease and thus society is becoming aware of it. Last year there was an Austrian documentary film in the cinema and online about endometriosis, this brought a lot of media attention. The taboo of the period is still relevant but is decreasing and everyone can contribute by talking about it. Surveys for better medications are also underway and individual researchers are working on this issue. Hopefully, funding agencies, politicians and medical professionals will soon become more aware that 1:10 women have a problem that cannot simply be dismissed as an „unimportant women’s issue“. Endometriosis is everywhere and has an impact – you just have to look.

No claim to medical completeness or correctness. This article was written after months of research, discussions with doctors, diagnostic interviews, educational talks, participation in self-help group meetings, many years of living with these two diseases and research of medical articles in professional journals. This report is not intended for self-diagnosis, but for education, to wake up doctors and to encourage relatives of young patients to listen and look more closely.