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About endometriosis: A widespread disease that no one knows about.

When pain is the rule.

“Why don’t you take the pill and it’ll go away”

At the age of ten, Fina*, now 26, had her first period. From then on, month after month, she writhes in pain. While her friends “only” have PMS, she struggles with colic, abdominal cramps and water retention of up to four kilos. From the day of her first bleeding she can hardly move and has to take painkillers. This condition lasts for several days until Fina finally loses the water again in the course of a day. Month after month she lives through the same ordeal.

Fina wanders from one gynaecologist to another. Usually she’s just told, “Why don’t you take the pill, then it’ll go away?” At first she doesn’t think much of it, takes the pill reglurarly, and actually the complaints improve a little. At some point, however, the numerous side effects of hormones strongly affect her well-being. She asks her gynaecologist if it’s possible to stop taking the pill without the pain coming back.

“You will need surgery. Then you’ll be alright.”

“You probably have endometriosis,” says the gynaecologist. “You’ll need surgery. Then you’ll be all right.” Fina gathers several medical opinions and gets the same information everywhere: Surgery, and bang, everything’s fine. Only one knob of tissue had to be removed. Later, Fina learns that this knob is also called a chocolate cyst. After all. She thinks she knows everything about endometriosis now and gets over it. She talks to her mother about her symptoms and finds out that this type of complaint has been going on for three generations. Her mother, aunt and grandmother have already experienced something similar. Someday, Fina thinks to herself, she’ll have the surgery done. Then she can live painless and hormone-free forever. That’s how the doctors finally explained it to her.

She thinks long and hard about the timing of the operation. She’s in the middle of her studies and doesn’t know what to expect. But she finally wants to free herself from the monster of constant pain. She can’t stop taking the pill, that would be too painful. One evening in late summer, Fina is in the subway on her way to the city, she decides: “Now I’m going to do it. Soon, I’ll have surgery. At last, one less worry.” She has had a good day, feels cheerful and optimistic. She begins to browse the internet for a special endometriosis clinic.

Chronic and incurable. WTF?

When Fina visits the clinic’s website, she is shocked by what it says: “Endometriosis is chronic and can only be treated, not cured. She’s nearly starts crying as she continues reading: Endometriosis is one of the most common causes of infertility in women. Fina can’t believe her eyes. She slowly realises that she was completely misinformed, and during her numerous visits to the doctor she was hardly informed. She now reads on the clinic’s website: “It is far from well if you simply remove the cyst. It says that an operation is already necessary to diagnose the disease – a first operation is therefore not at all about the final elimination of the pain. Endometriosis can only be detected by laparoscopy, Fina learns. The procedure, in which suspicious tissue is removed and tested, is performed under anaesthesia.

But what exactly is endometriosis?

In short, tissue grows where it should not. In endometriosis, cells of the lining of the uterus are located outside the uterine cavity, usually in the abdominal cavity. The problem is that unlike other mucous membranes, the lining of the uterus is extremely changeable and changes over the course of the menstrual cycle. She multiplies her cells, she gets thicker, she prepares for the fertilized egg. If no fertilized egg comes, it is rejected again as menstrual blood. The changes in the lining of the uterus are controlled by hormones.

The problem with endometriosis is that the cells of the lining of the uterus that lie outside the uterus also react to these hormones. That doesn’t necessarily have to cause complaints. However, growth and degradation of the scattered cells can cause tissue adhesions, inflammations and adhesions in the affected organs. Endometriosis can also, in some cases, interfere with the work of organs such as the bladder or intestine. Cysts can also develop. “They are called “chocolate cysts” because they often contain thickened, dark blood.

Often it is tiny accumulations of cells that trigger the severe pain. The disease is also one of the most common causes of fertility problems, because in some cases the endometriosis lesions are located on the ovaries, leading to adhesions and scarring.

The problem is that the symptoms manifest themselves differently in each patient. For this reason the disease is also called “The Chameleon of Gynecology”. Typical other complaints, apart from severe pain during menstruation, are pain after sexual intercourse, intestinal discomfort and pressure pain in certain parts of the pelvis.

Endometriosis is one of the most common gynaecological diseases: In women with very painful menstrual bleeding, 40% to 60% of the cases are assumed to be endometriosis. For unintentionally childless women it is 20% to 30%. The illness can occur in the entire period between the first period and menopause. However, while some women cannot feel that the lining of the uterus is growing outside the uterus at all, other women suffer from severe pain every month, which completely knocks them out for several days. In 50% of women affected by endometriosis there is a need for therapy.

Today, an average of 6 to 8 years elapse between the onset of symptoms and diagnosis. A period full of uncertainties, which can extremely unsettle and burden those affected. Especially if women do not know where the pain comes from for a long time, the disease can be an extreme psychological burden. The pain can affect sexuality and partnerships. In many cases, women also suffer from the fact that their pain is not taken seriously by their own environment, that they are accused of exaggerating or being “hysterical”.

Endometriosis isn’t the end. The disease only deserves more hearing and better education.

The disease sounds threatening the first time you hear about it. It doesn’t have to be. Sabine Steiner, chairwoman of the self-help association for endometriosis, sees better education as a great opportunity for those affected: “Informed patients and better-trained doctors can significantly shorten the suffering of endometriosis patients”. If the therapy is adapted to the living conditions of the affected persons as well as their special symptoms, they can often live well with the disease. However, it is important that the topic is taken seriously and that a broader and more well-founded education takes place. Women are often given the wrong advice. Or they only turn to doctors if their symptoms become unbearable or if there is an unfulfilled desire to have children.

Suspicion of endometriosis does not automatically mean that surgery is necessary. The disease is diagnosed in several steps: After an anamnesis, tactile and visual examinations are usually performed. If the suspicion of endometriosis is thereby confirmed, an ultrasound examination can already indicate whether there are signs of larger endometriosis foci or cysts.

However, only a laparoscopy – the surgery recommended by Fina – can provide certainty about the existence of endometriosis. Smaller endometriosis foci and adhesions can also be found using a tiny video camera. Endometriosis can also only be reliably ruled out by the laparoscopy. However, since it is carried out under general anaesthesia, it is not carried out in all suspicious cases.

The good news for those affected is that a laparoscopy is a routine procedure. It doesn’t take long, and you don’t need to rest for weeks. The operation is carried out minimally invasively, as a rule only two small incisions are necessary. In many cases, so much tissue is already removed during the operation that the symptoms improve significantly. Sometimes, however, only temporarily: In many women, the endometriosis lesions return after a few years.

However, some patients are only treated with pain therapy. Hormone therapy, such as the pill, is also frequently used. However, these are out of the question for women who wish to have children. And by the time the pill is stopped, the symptoms will be back. Incidentally, affected women who wish to have children can still become pregnant in many cases through good therapy. Here, however, competent care by doctors specialised in endometriosis is essential.

Fina is now happy to know the facts and has decided: she wants to know where she is in order to be able to plan her future and experience the right treatment. The operation will finally clarify whether endometriosis is the cause of her suffering. She may not be affected at all. Instead, she may be suffering from hereditary severe PMS, which would be treated with pain therapy.

Her story, so far, has been one of poor education and poorly communicated diagnoses. For the future, she hopes that more gynaecologists and physicians will be able to deal with the subject of endometriosis in a well-founded manner and provide their patients with professional information. She would like there to be more training on the disease.

Get the information you need about endometriosis

You think you’re affected? Don’t worry: endometriosis doesn’t have to be the end of the world, and many women learn to live with it well! However, it is important that you are properly advised and that you are not told any nonsense. If you feel that you might be affected, you can do a first test here. Of course, this does not replace a medical consultation, but can possibly substantiate a suspicion. If the doctor you trust is unable to help you or provides you with too little information, it is best to consult doctors with the appropriate specialisation. You can find addresses of specialist clinics in your city here. Most importantly, get as much in-depth information as you can and get all your questions answered. Then the chances are high that you will find the right way to deal with the disease.

 


*Name changed by the editors

Sources:
Fina, https://www.endometriose-liga.eu/ueber-endometriose,

Pressemitteilung der Endometriose-Vereinigung Deutschland http://www.endometriose-vereinigung.de/aktuelles-news-detailseite/items/pressemitteilung-361.html

“Mit Endometriose leben. Gesundheitliche, psychische und soziale Auswirkungen von Schmerzen.” Broschüre der Endometriose-Vereinigung Deutschland E.V., 2017, http://www.endometriose-vereinigung.de/tl_files/endo/benutzerordner/infomaterial/Broschuere%20Mit%20Endometriose%20leben%202017.pdf

“Expertise zum Thema: Endometriose”, Abschlussbericht des Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen, Nr. 27, 2008

 

Lisa