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Endometriosis: description, symptoms, consequences, treatment

by Josephine Andrews
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One speaks of endometriosis when uterine lining-like cells settle outside the uterine cavity (cavum uteri). Although the condition is benign, many sufferers experience severe menstrual cramps, abdominal pain between menstrual periods, painful intercourse, and infertility. Read everything important about symptoms, causes, diagnosis, treatment and prognosis of endometriosis!

ICD codes for this disease:

ICD codes are internationally valid codes for medical diagnoses. They can be found, for example, in doctor’s letters or on certificates of incapacity for work.

N80 D39

Endometriosis: brief overview

  • What is endometriosis? One of the most common abdominal diseases in women. The uterine lining also settles outside the uterine cavity, for example on the ovaries or between the uterus and rectum. Sexually mature women are usually affected. Endometriosis only rarely becomes noticeable before the first or after the last menstrual period.
  • Causes: Unknown, but there are various assumptions, for example that mucosal cells enter the abdomen via the fallopian tubes with backward-flowing menstrual blood or that a malfunction of the immune system is involved in the development of the disease.
  • Symptoms: Some patients have no symptoms at all. Others report severe menstrual pain, abdominal pain independent of menstruation, pain during sexual intercourse, urination or bowel movements.
  • Possible consequences : The disease can be psychologically very stressful and can be associated with infertility.
  • Treatment: medication (painkillers, hormone preparations), surgery; often supporting complementary methods (such as relaxation techniques, acupuncture, etc.)
  • Prognosis: Endometriosis is usually chronic. The course is unpredictable. Endometriosis foci can either regress spontaneously or spread further. Therapy can usually alleviate the symptoms, but often there are relapses afterwards. With the onset of menopause, endometriosis usually settles down.

Endometriosis: description

In the case of endometriosis, scattered cell structures from the lining of the uterus (endometrium) appear outside the uterine cavity . These cell islands are called endometriosis foci . Depending on their location, doctors differentiate between three large groups of endometriosis:

  • Endometriosis genitalis interna: Endometriosis foci within the muscle layer of the uterine wall (myometrium). Doctors speak of adenomyosis (adenomyosis uteri). In addition, endometriosis foci in the fallopian tube also belong to the endometriosis genitalis interna group.
  • Endometriosis genitalis externa: Most common form of the disease. Endometriosis foci in the genital area (in the small pelvis), but outside the uterus, for example in the ovaries, on the ligaments of the uterus or in the Douglas space (deepening between the uterus and rectum).
  • Endometriosis extragenitalis: Endometriosis foci outside the small pelvis, for example in the intestine (endometriosis gut), in the bladder, in the ureters or – very rarely – in the lungs , in the brain , in the spleen or in the skeleton.
Endometriosis – where it occurs most often
Endometriosis is scattered growths of uterine lining outside of the uterine cavity. Endometriosis spots are most common on the ovaries and between the uterus and the intestines.

The endometriosis foci are estrogen -dependent and behave like the mucous membrane inside the uterine cavity: They are alternately built up and shed again (with a small bleeding) during the menstrual cycle. However, the cell remains and the blood cannot be excreted through the vagina – as is the case with the regular mucous membrane in the uterine cavity. Sometimes the body can remove them (take them up and break them down into the surrounding tissue) easily and unnoticed.

Often, however, tissue residues and blood from the endometriosis foci trigger inflammation and adhesions or adhesions , which can cause more or less severe pain. In addition, so-called chocolate cysts (endometriomas) can form, for example on the ovaries. Cysts are fluid-filled cavities. In endometriosis patients, these cavities are filled with old, clotted blood and appear brown as a result. Hence the name chocolate cysts.

Endometriosis: frequency

Endometriosis is considered widespread. However, there is no reliable information on the exact frequency – especially since the endometriosis foci in many cases do not cause any symptoms and then often remain undetected. However, doctors estimate that there are around 40,000 new cases in Germany every year.

It usually takes a very long time before endometriosis is diagnosed: in this country, an average of ten years pass between the appearance of the first symptoms and the diagnosis.

Endometriosis in men is extremely rare.

The scattered islands of uterine lining often cause more or less severe symptoms in affected women. However, endometriosis can also remain without any symptoms at all. Below you will find the main symptoms that can occur with endometriosis and possible consequences of the disease:

Severe menstrual pain: With endometriosis, the pain and cramps can be particularly severe just before and during menstruation. Doctors then speak of dysmenorrhea. Especially endometriosis foci in the uterine muscles can cause severe pain. For some women, the menstrual pain is so severe that they cannot go to work and have to take strong painkillers.

Other abdominal pain: More or less severe pain in various places in the abdomen can also occur with endometriosis independently of the menstrual period. Sometimes this pain radiates to the back or legs. The symptoms can be caused by adhesions between different organs in the abdomen, such as between the ovary , intestine and uterus. Sometimes the solidified and less elastic structures also cause persistent pain. In addition, endometriosis foci can release inflammatory substances that further irritate the tissue and can lead to pain.

Pain during sexual intercourse: Pain during sex (dyspareunia) – sometimes only afterwards – is also a common symptom of endometriosis. They are often described by the women affected as burning or cramping. The cause is often endometriosis foci on the elastic straps that “anchor” the uterus in the small pelvis: They can cause pain if the pelvic organs move as usual during sexual intercourse. The symptoms can be so severe that affected women abstain from sex altogether. That can put a heavy strain on a partnership.

Painful urination or bowel movements: Less common symptoms of endometriosis include painful urination and a feeling of fullness and pain when having a bowel movement. They are caused by endometriosis foci in the bladder or in the intestine. Depending on the menstrual cycle, there is sometimes blood in the urine or stool.

Tiredness and exhaustion: Severe and/or frequent symptoms of endometriosis can be physically demanding in the long run. General exhaustion and tiredness are possible consequences.

Mental stress: In addition to physical stress, endometriosis often means mental stress as well. Many affected women suffer mentally from the severe or frequent pain. This is especially true when countless visits to the doctor are necessary before the cause of the symptoms can be determined – which unfortunately happens very often.

The extent of the symptoms of endometriosis is not related to the stage of the disease! For example, women with few/small areas of endometriosis may experience more pain than patients with more extensive areas.

Infertility: Many women with endometriosis cannot conceive. The exact reason for this is unknown. However, there are indications that egg cell development and early embryonic development may be disrupted in the patients. You can read more about the causes and treatment of unwanted childlessness in the case of endometriosis under Endometriosis and the desire to have children .

Cancers: Endometriosis is a benign disease and is not associated with a generally increased risk of cancer. However, a malignant tumor (usually ovarian cancer) can develop on the basis of endometriosis. But that only happens very rarely.

It has also been observed that endometriosis is sometimes associated with various cancers. These include, for example, renal cell carcinoma (the most common form of kidney cancer), brain tumors, black skin cancer (malignant melanoma), non-Hodgkin lymphoma (types of lymph gland cancer) and breast cancer (mammary carcinoma). However, the clinical significance of this observation is not yet known.

Endometriosis: Treatment

Endometriosis therapy always depends on the extent of the symptoms. Incidentally discovered endometriosis that does not cause any problems does not necessarily need to be treated. However, treatment is advisable for:

  • persistent pain
  • unfulfilled desire to have children and/or
  • a disturbance of an organ function (ovaries, ureters, intestines, etc.) caused by endometriosis foci.

Surgical and/or medicinal therapy measures are used. How this endometriosis treatment looks like in individual cases depends on several factors. In addition to the extent of the symptoms, the location of the endometriosis foci and the age of the woman also play a role. When planning therapy, the doctor also takes into account whether the patient wants to have children or not.

In addition to surgery and/or medication, psychosomatic therapy methods can be very useful for endometriosis: Emotional problems and psychosocial stress can increase the pain of endometriosis or, conversely, arise or at least be promoted by the disease. This can result in a vicious circle that significantly reduces the patient’s quality of life. Early support and advice (eg from a psychologist, pain therapist, sex counselor, etc.) can counteract this.

Drug treatment of endometriosis

There are different medications that can be used for endometriosis that serve different purposes: Painkillers are used to relieve pain and cramps in the abdomen. On the other hand, hormone preparations can slow down the growth of endometriosis foci.

Painkillers: Many endometriosis patients take so -called non-steroidal anti-inflammatory drugs (NSAIDs) such as acetylsalicylic acid (ASA), ibuprofen or diclofenac. These active ingredients have been shown to help with severe menstrual pain. It has not yet been scientifically proven whether they are also effective for other types of endometriosis pain. Possible side effects of NSAIDs include stomach problems, nausea, headaches and blood clotting disorders . The preparations should therefore not be taken more frequently or over a longer period of time without medical supervision.

In the case of very severe endometriosis pain, the doctor sometimes prescribes so-called opioids . These are basically very potent pain killers. However, their effectiveness in endometriosis pain has not been clearly proven. In addition, opioids can cause side effects such as nausea and vomiting, constipation, and fluctuations in blood pressure. With prolonged use, there is also a risk of developing a dependency.

Hormone preparations: Hormonal endometriosis treatment is suitable for patients who do not want to have children. The administered hormones suppress hormone production in the ovaries and thus also ovulation and menstrual bleeding. Above all, the production of estrogens is inhibited. Because the endometriosis foci are estrogen-dependent, they are “sedated” during hormone therapy. The complaints below. So far it is unclear whether the hormone treatment can also cause the endometriosis foci to regress and the endometriosis to disappear completely. Various hormone preparations are used:

Sometimes the doctor recommends certain hormonal contraceptives such as the birth control pill or the contraceptive patch for endometriosis patients. Some preparations of the contraceptive pill can be taken continuously (without a break). This can be an advantage in the case of endometriosis, because withdrawal bleeding (bleeding after the end of an intake cycle = a pack of pills) can also be very painful for the patient. However, this long cycle is not officially approved in Germany, so it takes place “off label”.

Other hormone preparations that can be used to treat endometriosis are so-called GnRH analogues . Like hormonal contraceptives, they can relieve endometriosis symptoms. However, they have stronger side effects: There are symptoms that often occur during menopause (mood swings, hot flashes, sleep disorders, dry vagina). In addition, GnRH analogues can decrease bone density with prolonged use.

Progestin preparations (corpus luteum hormones) such as dienogest or dydrogesterone can also relieve endometriosis pain. In tablet form, they are taken continuously. If the pain persists even after endometriosis surgery, a progestogen-containing IUD (hormone IUD with levonorgestrel) may be inserted into the uterus. Sometimes this helps better against the symptoms than the operation alone. Possible side effects of progestins include bleeding between periods, headaches, mood swings and reduced sexual interest (loss of libido).

Surgical endometriosis treatment

Surgery may be indicated when endometriosis is causing severe discomfort and/or infertility. In the case of “chocolate cysts” in the ovaries, an intervention is usually unavoidable (hormonal treatment alone is not sufficient here). The same applies if endometriosis has affected the bowel or bladder and disrupts the function of these organs.

If the endometriosis has grown deeply into the tissues of other organs (such as the vagina, bladder, intestines), the operation should be performed in clinics that have a lot of experience with such procedures.

The aim of an operation for endometriosis is to remove the scattered islands of endometrium as completely as possible – using a laser, electric current or scalpel. Sometimes it is also necessary to remove part of the affected organs (fallopian tubes, etc.). The procedure is usually performed as part of a laparoscopy . A large abdominal incision ( laparotomy ) is less common.

When endometriosis causes very severe symptoms, other treatments don’t help, and they don’t want to have children, some women decide to have a complete removal of the uterus ( hysterectomy ). Sometimes the symptoms stop, but not always. Then the ovaries may also be removed . This deprives all areas of endometriosis of the estrogens necessary for growth (ovaries are the main production sites of these hormones).

However, the removal of the ovaries suddenly puts the patient into menopause. Therefore, this radical intervention should be considered very carefully. If very severe menopausal symptoms occur after the operation, the woman can take estrogen preparations to counteract them. However, these can also cause the endometriosis symptoms to return.

medication plus surgery

Sometimes medicinal and surgical endometriosis treatment are combined: The patients receive hormone preparations (usually GnRH analogues) before and/or after a laparoscopy. Pre-treatment with hormones is intended to reduce the size of the endometriosis foci as much as possible. Hormone treatment after the operation is intended to calm the remaining areas of endometriosis and prevent the formation of new areas.

So far, however, studies have not been able to prove that a combination of hormone treatment and laparoscopy is actually more promising than an operation alone – neither in terms of pain nor the chances of pregnancy. In addition, the hormone treatment triggered side effects in some patients.

Endometriosis: Complementary Therapies

Some women with endometriosis use alternative or complementary treatments to manage their condition. The spectrum ranges from medicinal plants and homeopathy to acupuncture, relaxation and movement techniques (such as yoga or tai chi) and psychological pain management training to chiropractic treatments and TENS (transcutaneous electrical nerve stimulation). A lifestyle change (more exercise, stress reduction, etc.) should also be helpful.

Tip: Endometriosis pain can sometimes be relieved with heat, such as a hot water bottle, heat pack, or warm bath. Heat has a calming, relaxing and antispasmodic effect.

Alternative or complementary healing methods may improve the symptoms and quality of life of some patients. However, there is usually no scientific evidence of the effectiveness of complementary methods in this context. If the symptoms do not improve or even worsen, you should consult an endometriosis specialist for further treatment.

Endometriosis: causes and risk factors

Despite intensive research, it is still unclear exactly how endometriosis develops. But there are different theories about it. One of them is the so-called procrastination or transplantation theory :

It assumes that cells of the uterine lining are carried away from the uterine cavity to other parts of the body. This should happen either via the circulatory system or via “reverse” (retrograde) menstruation – ie via a backflow of menstrual blood via the fallopian tubes into the abdomen. In fact, it is known that nine out of ten women experience such retrograde menstruation. It would therefore be theoretically quite conceivable that mucous membrane cells of the uterus could get into the abdominal cavity in this way.

The metaplasia theory forms a contrast to the transplantation theory : According to it, the mucous membrane cells of the endometriosis foci develop directly on the spot (eg in the ovaries) and are therefore not carried there from the uterus. Instead, for reasons unknown, they are thought to develop from local cells that arose from the same embryonic cell lineage as the endometrial cells during development in the womb. This could explain why endometriosis can also occur in men (albeit extremely rarely) – the original embryonic tissue is also found in them.

Other factors could also contribute to the development of endometriosis, for example a disturbed interaction of hormones . A malfunction of the immune system is also being discussed: Normally, the immune system ensures that cells from a certain organ cannot settle in other parts of the body. Antibodies against the lining of the uterus can also be detected in the blood of some patients. These antibodies trigger inflammation in the area of ​​endometriosis. However, it is not yet known whether these antibodies are the cause or the consequence of endometriosis.

Genetic factors may also play a role in the development of endometriosis. Sometimes the disease occurs in several women within a family. However, there is no evidence that endometriosis is directly hereditary.

Endometriosis & desire to have children

Many women with endometriosis try to conceive without success. In such cases, experts generally recommend surgery: surgically removing the loose lining of the uterus can increase the chances of pregnancy.

However, this is not possible with medicinal endometriosis treatment alone. Even hormone treatment with GnRH analogues after an operation cannot further improve the fertility of the patient.

In some women, new areas of endometriosis develop after an operation, so that pregnancy still does not occur. Then you shouldn’t have to operate again. Instead, experts advise affected women to try artificial insemination.

You can read more about infertility in endometriosis and the various treatment options in the article Endometriosis and the desire to have children .

Endometriosis: investigations and diagnosis

If endometriosis is suspected, women should see a gynecologist. He will first collect the medical history in a detailed conversation (anamnesis): Among other things, he will have the symptoms that occur (severe menstrual pain, pain during sexual intercourse, etc.) described in detail. He also asks how long these have existed and how much they affect everyday life and a possible partnership. The doctor also asks whether endometriosis has already been diagnosed in the family (eg in the mother or sister).

Endometriosis often causes no symptoms at all. It is then (if at all) only discovered by chance, for example when a woman is examined more closely because of unwanted childlessness.

The next step is a pelvic exam . This includes the doctor feeling the abdominal wall, vagina, cervix and rectum. This can give him indications of possible pain, hardening or adhesions in these areas.

The doctor can also gain valuable information from ultrasound examinations of the abdominal wall and the vagina (transvaginal sonography). Larger endometriosis foci as well as cysts and adhesions can often be identified. Ultrasound through the vagina is particularly suitable for detecting ovarian cysts. Transvaginal ultrasound is also necessary if there is a suspicion of endometriosis in the muscular wall of the uterus (adenomyosis).

If the doctor suspects endometriosis in the urinary tract, he will also examine the kidneys using ultrasound: If the endometriosis foci narrow the ureters, the urine can back up in the kidneys and damage the organ.

If endometriosis is suspected, the doctor often takes a tissue sample from suspicious areas and has it examined histologically in the laboratory. The sample is usually taken via a laparoscopy . The tissue examination can show whether it is actually endometriosis or perhaps another (possibly malignant) disease.

In individual cases, further examinations can be useful for endometriosis. For example, if the bladder or rectum is suspected to be affected, a cystoscopy or rectal endoscopy can provide clarity. Very rarely, other imaging methods (magnetic resonance imaging, computed tomography) are used in addition to ultrasound.

Endometriosis: course and prognosis

Endometriosis is usually chronic. How it develops in individual cases cannot be predicted. In some women, the endometriosis lesions resolve spontaneously without treatment. In others, the disease progresses: the scattered mucosal islands grow steadily, spread and can affect various organs. This may require repeated surgeries.

With the right therapy, the symptoms of endometriosis can be alleviated in most cases. However, the freedom from symptoms does not always last: If endometriosis has been successfully treated with hormones, the symptoms often return after the medication is stopped. An operation is also no guarantee of lasting freedom from symptoms: in almost four out of five women, new endometriosis foci develop within five years after the operation.

With the onset of menopause, however, endometriosis settles down in most women.

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