Endometriosis is one of the most common medical conditions affecting the abdomen (lower belly) in women. In endometriosis, the kind of tissue that normally lines the inside of the womb (endometrial tissue) also grows outside of it. The medical term for endometrial tissue that has grown outside of the womb is “endometrial implants.” Some women have them without knowing it. But other women experience endometriosis as a chronic disease that causes severe pain and fertility problems. It often takes years for endometriosis to be diagnosed as the cause of these problems. Until the diagnosis is made, many women try to cope with their pain somehow. They believe that the pain – even really bad pain – is a normal part of their menstrual period.
There is currently no cure for endometriosis. But there are many things that can be done to relieve the symptoms. If treatment is adapted to suit women’s personal circumstances and the severity of their endometriosis, many can cope quite well with the disease.
Like with other chronic conditions, it's important to get to know your own body and how it reacts, in order to find ways to manage the symptoms. Getting hold of good information and consulting experienced, supportive doctors can help.
The main symptom of endometriosis is pain in the abdomen (lower belly). This often arises when women have their menstrual period, or during or after sex. The severity of pain may vary, sometimes radiating into the lower belly, back and legs. It is often described as “cramp-like” pain, and might be accompanied by nausea, vomiting and diarrhea.
The type of pain will also depend on where in the abdomen the endometrial tissue has grown. Endometrial implants can grow in places like the outside of the womb or in the wall of a fallopian tube. Endometriosis also often affects the ovaries, the “Pouch of Douglas” between the womb and the rectum at the end of the bowel, and the connective tissue in this area. If a woman’s ovaries or fallopian tubes are affected, she may have fertility problems too.
Severe endometriosis can have a big impact on your quality of life and ability to perform in everyday life.
The lining of the womb thickens every month. If a woman doesn't become pregnant, her menstrual period starts and this lining is shed.
The endometrial tissue elsewhere in the body "behaves" like the tissue lining the womb (endometrium): It thickens in the first half of the cycle and is then shed again.
But unlike endometrial tissue in the womb, which leaves women’s bodies in menstrual blood during their period, the endometrial tissue that is shed in other parts of the abdomen can't leave the body. In many women this tissue and blood is broken down by their bodies. In other women, though, the shed tissue sticks together (forms adhesions) or becomes inflamed, or cysts develop. Depending on where this happens, it can cause various degrees of pain. Cysts are fluid-filled sacs in the tissue.
There are various theories about what causes endometriosis. According to one of them, it's caused by a hormonal imbalance or a problem with the immune system. Our immune system usually makes sure that tissue from a particular organ doesn't grow elsewhere in the body. It is still not clear why endometrial tissue sometimes grows outside of the womb.
Endometrial implants are benign (non-cancerous) growths. Even though they can grow and sometimes affect other organs, they are extremely unlikely to develop into cancer.
Various estimates suggest that endometriosis is a common condition:
- Estimates concerning symptom-free women vary a lot: Between 2% and 50% of women are thought to have “silent” endometriosis which they are unaware of.
- It is estimated that 40% to 60% of women who have very painful periods have endometriosis.
- About 20% to 30% of women who are unable to get pregnant are believed to have endometriosis.
So, overall, endometriosis is considered to be a common condition.
Endometriosis usually only arises during a woman’s fertile years (between her first and last menstrual period). It is very rare for a woman to have endometriosis before her first period or after menopause.
In women who have mild endometriosis symptoms, there is a good chance that the condition won't get any worse. But endometriosis symptoms may become worse over time.
It's not possible to say for sure how endometriosis will develop. Sometimes endometrial implants go away again on their own, without any treatment. The symptoms usually disappear after a woman has had her last period (after menopause).
Endometrial implants might grow bigger over time, or cysts might develop as a result of endometriosis. Endometriosis-related cysts on the ovaries are known as “endometriomas.” They are also sometimes called “chocolate cysts” because they often have thick, dark blood inside them. If cysts and adhesions affect the function of a woman’s ovaries and fallopian tubes, she will often have fertility problems too. Severe endometriosis can therefore sometimes prevent women from getting pregnant. But it's not clear whether this is also true for mild endometriosis.
The symptoms can usually be relieved with the help of certain treatments. Areas of endometrial tissue can be removed through surgery, and sometimes shrink through hormone therapy. Yet the tissue often grows back again after the treatment.
If endometriosis is severe, it can affect nearly every area of a woman’s life. The recurring pain often affects how they feel about themselves as women. Particularly young women with severe symptoms may not be able to develop a positive relationship to their own body. Painful sex can make it difficult for a woman to enjoy her sexuality. Chronic pain may lead to tiredness, irritability and depressed moods. Women who have very severe endometriosis might not be able to get pregnant and have their own children. Together, all of these factors can put a strain on relationships too.
In many women, the recurring pain makes it difficult to carry out their usual everyday activities, work properly or pursue their hobbies. Women who can't go to work because of bad pain and cramps often face problems at work, as well as having feelings of guilt and shame.
Because severe abdominal pain can be caused by many different things, endometriosis is often only diagnosed when treatments for other possible conditions don't work, or when women are unable to get pregnant. In women who don't have any symptoms, endometriosis is often discovered by chance. Many of them go to see a doctor because they are unable to get pregnant.
There are several things doctors can do to try to see if you have endometrial implants or endometriosis-related scar tissue or adhesions, and to rule out other causes of your symptoms. At first you will have an in-depth talk about the type of symptoms (anamnesis), as well as a general physical and gynecological check-up. Depending on the symptoms, other examinations may be done too, such as an examination of the inside of your abdomen (laparoscopy).
Once diagnosed, the available treatment options can often reduce the pain or even make it go away completely. This, as well as knowing it is a benign illness, is a great relief for most women.
There is currently no “cure” for endometriosis – in other words, there are no treatments that can fight what is causing it. But various treatments can help relieve the symptoms, temporarily or permanently. The medication options include painkillers, hormonal contraception and stronger hormone therapy. Painkillers only relieve the symptoms, whereas hormone-based treatments slow down the growth of endometrial implants.
Surgery is also an option. The aim of surgery for endometriosis is usually to remove as many endometrial implants as possible. Sometimes surgery is even necessary – for instance, if endometriosis is affecting bowel or bladder function.
After surgery, or if women still have bothersome endometriosis symptoms despite comprehensive treatment, they can have rehabilitation therapy or follow-up treatment. Some hospitals and clinics in Germany and other countries offer special programs with a focus on endometriosis therapy.
There are also “endometriosis centers” where a number of different healthcare specialists work together. These centers are certified as such based on specific criteria. They aim to offer women treatment packages tailored to their own personal situations and needs. But there is currently no good research on whether this treatment approach is better than others.
Endometriosis can affect many key areas of a woman’s life – ranging from her self-esteem as a woman to her relationships, as well as her family planning and general plans in life. Finding a way to have as good a quality of life as possible despite having endometriosis involves making a lot of decisions. It helps to be well-informed about your treatment and how you can organize your life to limit the influence of endometriosis symptoms in everyday life.
It is important that you receive good medical care and support from doctors who have a lot of experience in the diagnosis and treatment of endometriosis. The doctors should also be aware of the physical and mental burden of living with endometriosis, as well as how it can affect a woman’s social life. It is often helpful to ask for a second medical opinion when facing difficult decisions, such as whether or not to have surgery.
A supportive partner, family or friends can be invaluable when trying to cope with endometriosis and the effects it may have. To be able to help, they have to know about the illness and show understanding for the problems it can cause. Some women also find it helpful to share their experiences with others in self-help groups. Others prefer to cope with their problems alone. The most important thing is that every woman finds out for herself how best to cope with her endometriosis.
Germany offers a wide variety of different information and support services if people become ill. There are many regional differences in how these services are organized, and they aren't always easy to find. A list of points of contact can help you to locate and make use of these services.
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