Brief overview
- Symptoms: Sometimes no symptoms at all, often mainly severe period pains, abdominal pains also independent of menstruation, pain during sexual intercourse, urination or defecation, exhaustion, psychological stress, infertility.
- Diagnosis: Based on symptoms (anamnesis), gynecological examination, ultrasound (transvaginal sonography), laparoscopy, tissue examination, rarely further examinations such as magnetic resonance imaging (MRI), bladder or colonoscopy.
- Treatment: medication (painkillers, hormone preparations), surgery usually minimally invasive by laparoscopy; supportive sometimes psychosomatic care as well as alternative methods such as relaxation techniques, acupuncture, etc.
- Causes: Unknown, but there are various theories; disorders of the immune system as well as genetic and hormonal factors probably play a role
What is endometriosis?
In endometriosis, uterine lining-like clusters of cells appear from outside the uterine cavity. Doctors refer to these islands of cells as endometriosis foci. Depending on their location, they distinguish three major groups of endometriosis:
- Endometriosis genitalis interna: endometriosis foci within the muscular layer of the uterine wall (myometrium). Doctors refer to this as adenomyosis (adenomyosis uteri). Foci in the fallopian tube also belong to this group.
- Endometriosis genitalis externa: The most common form of the disease. Endometriosis foci in the genital area (in the pelvis), but outside the uterus. For example, in the ovaries, on the retaining ligaments of the uterus, or in the Douglas space (depression between the uterus and rectum).
- Endometriosis extragenitalis: foci of endometriosis (outside the small pelvis) for example in the intestine (endometriosis colon), bladder, ureters or – very rarely – in the lungs, brain, spleen or skeleton.
However, the cell remnants and blood cannot be excreted through the vagina – as is the case with the regular mucosa in the uterine cavity. Nevertheless, it is sometimes possible for the body to absorb and break down the endometriosis lesions unnoticed via the surrounding tissue.
In many cases, however, the tissue remnants and blood from the endometriosis lesions lead to inflammation and adhesions or adhesions that cause more or less severe pain. In addition, so-called chocolate cysts (endometriomas) sometimes form, for example on the ovaries.
Where does the term “chocolate cysts” come from? Cysts are fluid-filled cavities. In endometriosis sufferers, these cavities are filled with old, clotted blood, making them appear brownish.
Endometriosis: frequency
Since endometriosis is often inconspicuous and also difficult for doctors to detect, it usually takes a long time (several years) until a diagnosis is made.
Because a simple test or self-test for the diagnosis of endometriosis does not exist yet. Currently, the standard is a tissue examination that doctors obtain via abdominal endoscopy (laparoscopy) to ensure the suspicion of endometriosis.
What are the symptoms?
The scattered cell clusters of endometrium often cause more or less severe symptoms in affected women. However, endometriosis may also remain entirely without symptoms. The most important symptoms that sometimes occur with endometriosis, as well as possible consequences of the disease, are:
Other abdominal pain: More or less severe pain in various parts of the abdomen, also independent of menstruation, sometimes radiating to the back or legs. This is caused, for example, by adhesions between different organs in the abdomen, such as between the ovary, intestine and uterus. Sometimes this also leads to persistent pain. In addition, in some cases endometriosis foci release inflammatory substances that additionally irritate the tissue and cause pain.
Pain during sexual intercourse: Pain often occurs during or after sex (dyspareunia). Affected women often describe it as burning or cramping. The cause is often endometriosis foci on the elastic retaining ligaments, which shift as usual during sexual intercourse. Affected women completely abstain from sex due to the sometimes very severe discomfort. This in turn often leads to problems in the partnership.
Fatigue and exhaustion: As severe and/or frequent endometriosis symptoms are physically very stressful in the long run, some sufferers consequently also experience general exhaustion and fatigue.
Psychological stress: In addition to physical stress, endometriosis often also means psychological stress. 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 complaints is determined – which unfortunately happens very often.
The extent of the complaints is not specifically related to the stage of the endometriosis. It is quite possible, for example, that women with few or small endometriosis foci have more severe pain than patients with many or large foci.
You can read more about the causes and treatment of involuntary childlessness with endometriosis and various treatment options in the article Endometriosis & Infertility.
How can endometriosis be tested?
If endometriosis is suspected, it is important for those affected to see a gynecologist. The gynecologist will first take a detailed medical history. Among other things, he will ask about the following aspects:
- What are the symptoms (severe period pains, pain during sexual intercourse, etc.)?
- How long have they been present?
- Do they interfere with everyday life and a possible partnership?
- Is there perhaps already a case of endometriosis in the family (for example in the mother or sister)?
Often endometriosis causes no symptoms at all and the doctor discovers it (if at all) only by chance. For example, when a woman has herself examined more closely because of unwanted childlessness.
- Pain
- Hardenings
- Adhesions
The doctor also obtains valuable information from ultrasound examinations through the abdominal wall and the vagina (transvaginal sonography). It is often possible to detect larger endometriosis lesions as well as cysts and adhesions.
Ultrasound via the vagina is particularly suitable for detecting cysts of the ovaries. Transvaginal ultrasound is also necessary when endometriosis foci are suspected in the muscular uterine wall (adenomyosis).
Specific blood values or a validated test that specifically indicates endometriosis and would be detectable by a simple blood test do not currently exist for the diagnosis of this condition.
If the doctor suspects endometriosis of the urinary tract, he also examines the kidneys by ultrasound: If the endometriosis foci narrow the ureters, it is possible that the urine backs up into the kidney and the organ is damaged.
In some cases, further examinations are also useful. For example, in the case of suspected bladder or rectal involvement, a cystoscopy or a colon/rectoscopy will provide clarity. In rarer cases, other imaging procedures such as magnetic resonance imaging (MRI) are used in addition to ultrasound.
How can endometriosis be treated?
Endometriosis therapy always depends on the extent of the symptoms. Endometriosis that is found by chance and does not cause any problems does not necessarily require treatment. However, situations where treatment is advisable are:
- Persistent pain
- Unfulfilled desire to have children
- A disturbance of an organ function (such as ovary, ureter, intestine) caused by endometriosis foci
In addition, psychosomatic therapy methods may also be very useful in endometriosis: Emotional problems and psychosocial stresses intensify the pain in some patients, or they are caused by the disease or their development is at least favored by endometriosis. In some cases, this leads to a vicious circle that considerably reduces the patient’s quality of life.
Early support and counseling, for example by a psychologist, pain therapist or sex counselor, may counteract psychosomatic complaints.
In principle, there are special centers for the treatment of endometriosis as well as gynecologists who specialize in this disease. You can find more information here: https://www.endometriose-sef.de/patienteninformationen/endometriosezentren
Medicinal endometriosis treatment
Painkillers
Many endometriosis patients take so-called non-steroidal anti-inflammatory drugs (NSAIDs) such as acetylsalicylic acid (ASA), ibuprofen or diclofenac. These agents have been shown to relieve severe period pain. Whether they are also effective for other endometriosis pain has not yet been scientifically proven.
Possible side effects of NSAIDs include stomach upset, nausea, headache, and blood clotting disorder. For this reason, it is important not to take the preparations more often or for a longer period of time without medical supervision.
Hormone preparations
The hormones cause the symptoms to subside. So far, it is unclear whether hormone treatment may also cause regression of the endometriosis lesions or whether endometriosis disappears completely as a result. Various hormone preparations are used:
- Progestins (corpus luteum hormones)
- Certain hormonal contraceptives such as the “pill” or the contraceptive patch
- GnRH analogs (gonadotropin-releasing hormone)
Progestogen preparations (corpus luteum hormones) with, for example, the active ingredient Dienogest are at the forefront of hormone therapy for endometriosis. They weaken the endometriosis pain. They are usually taken permanently in tablet form.
If the pain persists even after endometriosis surgery, doctors may also recommend inserting a progestin-containing IUD (hormonal IUD with levonorgestrel) into the uterus. Sometimes this is more successful against the symptoms than surgery alone.
- Weight gain
- Bleeding between periods
- Headaches
- Mood swings
- Decreased sexual interest (loss of libido)
Sometimes the doctor recommends endometriosis patients to use certain hormonal contraceptives such as the “pill” or the contraceptive patch. There are some “pill” preparations that are to be taken continuously (without a break). In the case of endometriosis, this has the advantage of eliminating withdrawal bleeding (after completion of a cycle/pack of pills), which is very painful for some patients.
However, since the “pill” is not officially approved for the treatment of endometriosis, but actually “only” for hormonal contraception, the prescription is a so-called “off-label use”.
- Mood swings
- Hot flashes
- Sleep disorders
- @ vaginal dryness
In addition, it is possible that GnRH analogues reduce bone density with prolonged use. Usually, doctors then also prescribe additional medications (add-back therapy) to minimize this side effect.
As a rule, doctors prescribe this hormonal endometriosis treatment for about three to six months, depending on tolerability and if no other aspects speak against it, even longer. The exception is GnRH analogues. These should not be taken for longer than six months without additional medication to mitigate the side effects.
Surgical endometriosis treatment
If hormone therapy for endometriosis treatment does not respond, causes severe discomfort and/or infertility, doctors usually advise surgery.
If the endometriosis has grown deep into the tissue of other organs (such as vagina, bladder, intestine), doctors recommend having the surgery performed in a clinic that has a lot of experience with such procedures.
The goal of surgery for endometriosis is to remove the scattered endometrial islets as completely as possible. Doctors remove the endometriosis foci using laser, electric current or scalpel. Sometimes it is also necessary to remove part of the affected organs.
The procedure is usually performed during an abdominal endoscopy (laparoscopy). More rarely, a large abdominal incision (laparotomy) is necessary.
If endometriosis causes very severe symptoms, other treatments do not help and there is no desire to have children, some women opt for a complete removal of the uterus (hysterectomy). In some cases it is also necessary to remove the ovaries, which are the main production site of estrogens.
Medication plus surgery
Sometimes doctors advise combined drug and surgery endometriosis treatment: patients receive hormone preparations before and/or after abdominal endoscopy.
- The hormonal pre-treatment aims to reduce the size of the endometriosis foci.
- After surgery, doctors use hormone administration to try to immobilize remaining endometriosis foci and prevent new foci from forming.
Endometriosis: Further therapy options
Some women with endometriosis use alternative or complementary healing methods to combat their symptoms. These range from medicinal plants and homeopathy to acupuncture, relaxation and movement techniques (such as yoga or tai chi), psychological pain management training, chiropractic treatments and TENS (transcutaneous electrical nerve stimulation).
In some cases, alternative healing methods can possibly improve the symptoms and the quality of life of those affected, but these methods have their limitations. In addition, there is usually no scientific evidence of effectiveness for these methods. If the symptoms do not improve or even worsen, a doctor should be consulted urgently.
How does endometriosis develop?
Why and how exactly endometriosis develops is unknown. However, there are several theories about it:
- Implantation or transplantation theory: Via the blood circulation or via a “reverse “(retrograde) menstruation – i.e. via a backflow of menstrual blood via the fallopian tubes into the abdominal cavity – cells of the endometrium move from the uterine cavity to other parts of the body.
Endometriosis in men? In very rare cases, doctors also speak of the presence of endometrial-like tissue in men, which originally originates from embryonic cells. This could be explained by the metaplasia theory.
Doctors and scientists discuss other factors that may contribute to the development of endometriosis. For example:
- Immune system dysfunction: Normally, the immune system ensures that cells do not colonize other parts of the body. In the blood of some patients, antibodies against the endometrium can be detected, causing inflammation around the endometriosis lesions. Whether this is the cause or consequence of the disease is still unclear.
- Genetic factors: sometimes the disease occurs in several women within a family. However, there is no evidence that endometriosis is directly hereditary.
Risk factors
Just as the cause of endometriosis is unknown, its risk factors are also elusive. However, researchers have identified factors in women suffering from endometriosis. Common features often included the following:
- Cycle length of or less than 27 days
- A certain duration of menstrual bleeding
- A certain number of pregnancies and miscarriages
On the other hand, other possible risk factors such as diet, smoking, age at first menstrual period, body weight (BMI), or pill use are not clearly detectable.
How does endometriosis progress?
Endometriosis is usually chronic and recurrent. It is not possible to predict how it will develop in individual cases.
However, even after discontinuation of medication, the symptoms return relatively often after successful hormone treatment of endometriosis. This also applies to surgical treatment.
With the onset of menopause, most women experience an improvement in endometriosis symptoms.
Endometriosis and cancer risk
Endometriosis is a benign disease and is not associated with a generally increased risk of cancer. In very rare cases, it is possible for a malignant tumor to develop on the floor of endometriosis (usually ovarian cancer). In addition, it has been observed that endometriosis sometimes occurs in association with various cancer diseases. These include, for example:
- Black skin cancer (malignant melanoma)
- Colorectal cancer (colorectal carcinoma)
- Non-Hodgkin’s lymphoma (forms of lymph gland cancer)
- Breast cancer (mammary carcinoma)
However, the significance of this observation is not yet clear.