Endometriosis: description, symptoms, consequences, treatment
Endometriosis: short overview
- What is endometriosis? Endometriosis is a scattered metastasis of uterine mucosa outside the uterine cavity. Endometriosis lesions most frequently occur on the ovaries and between the uterus and the intestine. One of the most common abdominal diseases in women. Here, the uterine lining also settles outside the uterine cavity, for example on the ovaries or between the uterus and the rectum. Usually sexually mature women are affected. Only rarely does endometriosis become apparent before the first or after the last menstrual period.
- Causes: Unknown, but there are various suspicions, such as that mucous membrane cells with menstrual blood flowing backwards enter the abdominal cavity via the fallopian tubes or that a malfunction of the immune system is involved in the development of the disease.
- Symptoms and consequences: Some patients have no complaints at all. Others report severe menstrual pain, abdominal pain also independent of menstruation, pain during intercourse, urination or bowel movements. The disease can be very stressful psychologically and is associated with infertility.
- Treatment options: Medication (painkillers, hormone preparations), surgery; often complementary methods (such as relaxation techniques, acupuncture, etc.)
- Prognosis: Endometriosis is usually chronic. The course is not predictable. Endometriosis foci can both spontaneously regress and spread further. Therapy can usually alleviate the symptoms, but often relapses occur afterwards. With the onset of menopause, endometriosis usually comes to a halt.
In endometriosis (or endometriosis), scattered cell assemblies of the uterine lining (endometrium) occur outside the uterine cavity. These cell islands are called endometriosis foci. Depending on their location, physicians distinguish three major groups of endometriosis:
- Endometriosis genitalis interna: endometriosis foci within the muscle layer of the uterine wall (myometrium). Doctors refer to this as adenomyosis (adenomyosis uteri). In addition, endometriosis foci in the fallopian tube also belong to the group Endometriosis genitalis interna.
- Endometriosis genitalis externa: Most common form of the disease. Herds of endometriosis in the genital area (in the small pelvis), but outside the uterus, for example in the ovaries, on the retaining ligaments of the uterus or in the Douglas cavity (depression between uterus and rectum).
- Endometriosis extragenitalis: foci of endometriosis outside the small pelvis, for example in the intestine (endometriosis intestine), in the bladder, in the ureters or – very rarely – in the lungs, brain, spleen or skeleton.
Endometriosis foci are estrogen-dependent and behave like the mucous membrane within the uterine cavity: they are alternately built up and rejected (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 mucosa in the uterine cavity. Sometimes the body can remove them easily and unnoticed (absorb them into the surrounding tissue and break them down).
Often, however, tissue remnants and blood of the endometriosis foci cause 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 hollow spaces filled with liquid. In endometriosis patients, these cavities are filled with old, coagulated blood and thus appear brownish. Hence the name chocolate cysts.
Endometriosis is considered widespread. However, there is no reliable information on the exact frequency – especially since in many cases the foci of endometriosis do not cause any symptoms and then often remain undetected. However, physicians estimate that there are approximately 40,000 new cases per year in Germany.
It usually takes a very long time before endometriosis is detected: In this country it takes an average of ten years between the appearance of the first symptoms and diagnosis.
Endometriosis in men is extremely rare.
Endometriosis: symptoms and consequences
The scattered islands of endometrium often cause more or less severe symptoms in affected women. However, endometriosis can also be completely without symptoms. Below you will find the most important symptoms that can occur with endometriosis and the possible consequences of the disease:
Severe menstrual pain: In the case of endometriosis, the pain and cramps can be particularly severe shortly before and during menstruation. Doctors then speak of dysmenorrhoea. Especially endometriosis foci in the uterine musculature can cause severe pain. In some women, the menstrual pain is so severe that they cannot do their job and have to take strong painkillers.
Other abdominal pain: More or less severe pain in various parts of the abdomen can also occur independently of menstruation in the case of endometriosis. Sometimes this pain radiates into the back or legs. The complaints can be caused by adhesions between different organs in the abdomen, such as between the ovary, intestine and uterus. Sometimes the hardened and less elastic structures also cause persistent pain. In addition, endometriosis foci can release inflammatory substances that can additionally irritate the tissue and lead to pain.
Pain during sexual intercourse: Pain during sex (dyspareunia) – sometimes only afterwards – is also a common endometriosis symptom. They are often described by affected women as burning or cramping. The cause is often endometriosis foci on the elastic retaining ligaments that “anchor” the uterus in the pelvis: they can cause pain if the pelvic organs shift as usual during sexual intercourse. The symptoms can be so severe that affected women give up sex altogether. This can put a heavy strain on a partnership.
Pain when urinating or defecating: Less frequent endometriosis symptoms are pain when urinating as well as a feeling of fullness and pain when defecating. They are caused by endometriosis foci in the bladder or intestines. Sometimes, depending on the cycle, blood in the urine or stool is also added.
Tiredness and exhaustion: Severe and/or frequent endometriosis symptoms can be physically very stressful in the long term. General exhaustion and fatigue are possible consequences.
Mental stress: In addition to physical stress, endometriosis often also means psychological stress. Many affected women suffer psychologically from the strong or frequent pain. This is especially true when countless visits to the doctor are necessary before the cause of the complaints 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 herds of endometriosis may have more pain than patients with more extensive herds.
Infertility: Many women with endometriosis cannot become pregnant. The exact reason for this is unknown. However, there are indications that egg development and early embryonic development may be disturbed in patients. You can read more about the causes and treatment of unwanted childlessness in endometriosis under Endometriosis & Desire to have children.
Cancer: Endometriosis is a benign disease and is not associated with a generally increased risk of cancer. However, a malignant tumour (usually ovarian cancer) can develop at the base of an endometriosis. But that happens very rarely.
It has also been observed that endometriosis sometimes occurs in connection with various types of cancer. These include, for example, renal cell carcinoma (most common form of kidney cancer), brain tumours, malignant melanoma, non-Hodgkin lymphomas (forms of lymph gland cancer) and breast cancer (breast cancer). The clinical significance of this observation is not yet known.
Endometriosis therapy always depends on the extent of the symptoms. Endometriosis detected by chance, which does not cause any problems, does not necessarily have to be treated. However, treatment is advisable:
- persistent pain,
- unfulfilled desire to have children and/or
- a disturbance of an organ function (ovary, ureter, intestine, etc.) caused by a focus of endometriosis
Surgical and/or drug therapy measures are used. How this endometriosis treatment looks like in individual cases depends on several factors. In addition to the extent of the complaints, the location of the endometriosis focus and the age of the woman play a role. In addition, the doctor takes into account whether the patient wants to have children or not when planning the therapy.
In addition to surgery and/or medication, psychosomatic therapy procedures for endometriosis can be very useful: emotional problems and psychosocial stress can increase the pain in endometriosis or, conversely, be caused or at least promoted by the disease. This can lead to a vicious circle that considerably restricts the patient’s quality of life. Early support and advice (for example from a psychologist, pain therapist, sexual counselor, etc.) can counteract this.
Drug-induced endometriosis treatment
One can take different medications for endometriosis that serve different purposes: Painkillers are used to relieve pain and cramps in the abdomen. In contrast, hormone preparations can slow down the growth of the 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. Whether they are also effective for other endometriosis pain has not yet been scientifically proven. Possible side effects of NSAIDs include stomach discomfort, nausea, headaches and a disorder of blood clotting. The preparations should therefore not be taken more often or for longer periods of time without medical supervision.
For very severe endometriosis pain, the doctor sometimes prescribes so-called opioids. These are in principle very potent painkillers. 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 blood pressure fluctuations. There is also a risk of developing a dependency if used over a longer period of time.
Hormone preparations: Hormonal endometriosis treatment is suitable for patients who do not wish to have children. The hormones administered suppress hormone production in the ovaries and thus also ovulation and menstruation. In particular, the production of estrogens is inhibited. Because endometriosis foci are estrogen-dependent, they are “immobilised” during hormone therapy. The symptoms are subsiding. It is still unclear whether hormone treatment can also cause the foci of endometriosis to recede and the endometriosis to disappear completely. Various hormone preparations are used:
Sometimes the doctor will recommend certain hormonal contraceptives such as the contraceptive pill or patch to patients with endometriosis. Some preparations of the contraceptive pill can be taken continuously (without a break). This can be advantageous in the case of endometriosis, because withdrawal bleeding (bleeding after the end of a cycle of intake = a pack of pills) can also be very painful for patients. However, this long cycle is not officially approved in Germany, so it is done “off label”.
Other hormone preparations that can be used for endometriosis therapy are so-called GnRH analogues. Like hormonal contraceptives, they can alleviate the symptoms of endometriosis. However, they have stronger side effects: This leads to symptoms that often occur during the menopause (mood swings, hot flushes, sleep disturbances, dry vagina). In addition, GnRH analogues can reduce 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 coil (hormone coil with levonorgestrel) may be inserted into the uterus. Sometimes this helps better against the symptoms than surgery alone. Possible side effects of progestins include intermittent bleeding, headaches, mood swings and reduced sexual interest (loss of libido).
Operative endometriosis treatment
Surgery may be indicated if endometriosis causes severe symptoms and/or infertility. Even in the case of “chocolate cysts” of the ovaries, surgery is usually unavoidable (hormone treatment alone is not sufficient here). The same applies if the endometriosis has affected the intestines or the bladder and disturbs the function of these organs.
If the endometriosis has grown deeply into the tissue of other organs (such as the vagina, bladder, intestines), the operation should be performed in clinics where there is a lot of experience with such operations.
The aim of an operation for endometriosis is to remove the scattered islands of the uterine lining 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. Less frequently, 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 decide to have a complete removal of the uterus (hysterectomy). Sometimes the complaints then stop, but not always. Then the ovaries may also be removed. This deprives all endometriosis foci 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 the menopause. This radical intervention should therefore be considered very carefully. If very severe menopausal symptoms occur after the operation, the woman can take oestrogen preparations against it. However, these can then also cause the endometriosis symptoms to return.
The diagnosis is actually easy, but many doctors don’t even think about it in the case of typical complaints. Every woman who suffers from severe pain during menstruation is suspected to have endometriosis. But many people simply treat this with painkillers or hormone contraceptives. On average, 7 to 8 years elapse from the onset of symptoms to their treatment. If in doubt, therefore, please consult your gynaecologist directly about endometriosis!
Is it difficult to detect? Not for an experienced endometriosis expert. If the endometriosis is located on the ovaries or the uterus, ultrasound is sufficient for diagnosis. For everything else you have to do a laparoscopy. This scares many people at first. But in a laparoscopy, the endometriosis focus is also removed immediately. So it is diagnosis and – the only possible – therapy in one.
Can endometriosis be cured? I’m afraid not. Endometriosis is a chronic disease. This means that as long as the woman has a cycle, the endometriosis can come back. The risk after an operation is 30 to 40 percent. I recommend hormone therapy against recurrence to affected women after the operation. And: In principle, removing the tissue first brings great relief from pain – and in many cases it is much easier to have children afterwards.
Medication plus surgery
Sometimes drug therapy and surgical endometriosis treatment are combined: The patients receive hormone preparations (mostly GnRH analogues) before and/or after a laparoscopy. Pre-treatment with hormones should reduce the endometriosis foci as much as possible. Hormone treatment after the operation is intended to sedate remaining endometriosis foci and prevent the formation of new foci.
However, studies have not yet been able to prove that a combination of hormone treatment and laparoscopy is actually more promising than surgery alone – neither in terms of pain nor in terms of the chances of pregnancy. In addition, the hormone treatment caused side effects in some patients.
Endometriosis: complementary therapies
Some women with endometriosis use alternative/complementary methods of treatment for their complaints. The palette ranges from medicinal plants and homeopathy to acupuncture, relaxation and movement techniques (such as yoga or Tai-Chi) and psychological pain management training, chiropractic treatments and TENS (transcutaneous electrical nerve stimulation). A change in lifestyle (more exercise, stress reduction etc.) should also be helpful.
Such alternative/complementary healing methods can actually improve the symptoms and quality of life of some patients, even if there is no scientific proof of their effectiveness. Anyone interested in such procedures should discuss their use and possible side effects with an experienced doctor or therapist.
Tip: Endometriosis pain can sometimes be relieved with heat applications, for example in the form of a hot water bottle, a heat pack or a warm bath. Heat has a calming, relaxing and antispasmodic effect.
Endometriosis: causes and risk factors
Despite intensive research, it is still unclear exactly how endometriosis develops. But there are different theories about this. One of them is the so-called carry-over or transplantation theory:
It assumes that cells of the uterine lining are carried from the uterine cavity to other parts of the body. This should be done either via the blood circulation system or via “reverse” (retrograde) menstruation – i.e. via a reflux of menstrual blood via the fallopian tubes into the abdominal cavity. In fact, it is known that such retrograde menstruation occurs in new women out of ten. Theoretically, it would therefore be quite possible that uterine mucosal cells could enter the abdominal cavity in this way.
The metaplasia theory is in contrast to the transplantation theory: According to this theory, the mucosal cells of the endometriosis foci are formed directly on the spot (for example in the ovaries) and are therefore not transported there from the uterus. Instead, for unknown reasons, they are supposed to develop from cells on site, which during development in the womb originated from the same embryonic cell line as the endometrium cells. This could explain why endometriosis can also occur in men (although extremely rare) – the original embryonic tissue is also found in them.
Other factors might also contribute to the development of endometriosis, for example a disturbed interaction of hormones. A malfunction of the immune system is also discussed: Normally, the immune system ensures that cells from a certain organ cannot settle in other parts of the body. In addition, antibodies against the uterine lining can be detected in the blood of some patients. These antibodies cause inflammation in the area of the endometriosis foci. However, it is not yet known whether these antibodies are the cause or the consequence of endometriosis.
Genetic factors could 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 in vain to become pregnant. In such cases, experts generally recommend surgery: if the dislocated lining of the uterus is removed surgically, this can increase the chances of pregnancy.
However, this cannot be achieved with drug-based endometriosis treatment alone. Even hormone treatment with GnRH analogues after surgery cannot further improve patients’ fertility.
In some women, new foci of endometriosis form after an operation, so that pregnancy is still not possible. In this case, surgery should not be performed again. Instead, experts advise affected women to try artificial insemination.
You can read more about infertility with endometriosis and the various treatment options in the article Endometriosis & desire to have children.
Endometriosis: examinations and diagnosis
If endometriosis is suspected, women should go to a gynaecologist (gynaecologist). The doctor will first take a detailed medical history (anamnesis): Among other things, he will be able to describe the symptoms that occur (severe menstrual pain, pain during sexual intercourse, etc.) in detail. He also asks how long they have existed and how much they affect everyday life and a possible partnership. The doctor will also ask whether endometriosis has already been diagnosed in the family (for example, in the mother or sister).
Endometriosis often causes no complaints at all. It is then discovered (if at all) only by chance, for example when a woman has herself examined more closely because of unwanted childlessness.
The next step is a gynecological examination. This involves the doctor palpating 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 obtain valuable information from ultrasound examinations of the abdominal wall and the vagina (transvaginal sonography). It is often possible to detect larger foci of endometriosis as well as cysts and adhesions. Ultrasound via the vagina is particularly suitable for detecting cysts of the ovaries. Transvaginal ultrasound is also necessary if endometriosis is suspected in the muscular uterine wall (adenomyosis).
If the doctor suspects endometriosis of the urinary tract, he will also examine the kidneys using ultrasound: If the endometriosis foci constrict the ureters, the urine can back up into the kidney and damage the organ.
If endometriosis is suspected, the doctor often takes a tissue sample from suspicious areas and has it examined in the laboratory for fine tissue (histological). Samples are usually taken via laparoscopy. The tissue examination can show whether it is really endometriosis or perhaps another (possibly malignant) disease.
In individual cases of endometriosis, further examinations may be useful. For example, in the case of a suspected bladder or rectal infection, a cystoscopy or rectal endoscopy can provide clarity. Very rarely are other imaging procedures (magnetic resonance imaging, computer tomography) used in addition to ultrasound.
Endometriosis: course and prognosis
Endometriosis is usually chronic. How it will develop in individual cases cannot be predicted. In some women, the endometriosis foci spontaneously regress without treatment. In others, the disease progresses: the scattered islands of mucous membrane grow steadily, spread and can affect various organs. This may require repeated operations.
With the right therapy, the symptoms of endometriosis can be alleviated in most cases. However, this freedom from symptoms is not always permanent: if endometriosis has been successfully treated with hormones, the symptoms often return after the medication has been discontinued. Nor is surgery a guarantee of lasting freedom from symptoms: in almost four out of five women, new centres of endometriosis form within five years of the operation.
With the onset of menopause, however, endometriosis comes to a halt in most women.