Endometriosis

The main symptom of endometriosis is pain in the abdomen (belly area). 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 a “cramping” pain, and might be accompanied by nausea, vomiting and diarrhea.

The type of pain will also depend on where the endometrial tissue is in the abdomen. Endometrial implants can occur 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 (trouble getting pregnant) too.

Endometrial implants may also develop in organs like the bladder or bowel, which can cause problems with urination or bowel movements (peeing or pooping).

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 without them knowing about it. In other women, though, the shed tissue sticks together (forms adhesions), becomes inflamed, or leads to cysts. 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. It is thought that a hormonal imbalance, a problem with the immune system and genetic factors play a role. Our immune system usually makes sure that tissue from a particular organ doesn't grow elsewhere in the body. This protective mechanism doesn't seem to work in women who have endometriosis.

Endometriosis is a common condition, although it's not known exactly how many women are affected. Many women have "silent" endometriosis that they are unaware of. It is thought that up to 50% of women who have painful periods also have endometriosis.

Endometriosis usually only arises during a woman’s fertile years (between her first and last menstrual period). It's very rare for a woman to have endometriosis before her first period or after menopause.

It's not possible to say for sure how endometriosis will develop over time. Sometimes endometrial implants go away again on their own, without any treatment. In women who have mild endometriosis symptoms, the symptoms may stay mild. But they might become worse over time. 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. So severe endometriosis can sometimes prevent women from getting pregnant. But it's not clear whether this is also true for mild endometriosis.

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.

If endometriosis is severe, it can affect nearly every area of a woman’s life. Many say that the recurring pain is a big problem for them. 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. The recurring pain can make it difficult to carry out everyday activities, work properly or pursue hobbies.

Because severe abdominal pain can be caused by many different things, it often takes a long time for endometriosis to be diagnosed. 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.

Various treatments can help relieve the symptoms, temporarily or permanently. The medication options include painkillers, hormonal contraception or other hormone-based medicines. Painkillers only relieve the symptoms, whereas hormone-based treatments slow down the growth of endometriosis.

Surgery is also an option. The aim of surgery for endometriosis is to remove all of the endometriosis tissue. Sometimes surgery is even necessary – for instance, if endometriosis is preventing the bowel or bladder from working properly. But endometriosis may come back again after surgery. If surgery to remove this endometriosis tissue doesn't help, the woman has very severe symptoms and doesn't wish to have any (more) children, surgery to remove the womb, fallopian tubes and ovaries may be considered.

After surgery, or if women still have bothersome symptoms despite trying out the recommended treatments, 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.

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 problems caused by 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 family, partner 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. The most important thing is that every woman finds out for herself how best to cope with her endometriosis.

When people are ill or need medical advice, they usually go to see their family doctor first. Read about how to find the right doctor, how to prepare for the appointment and what to remember.

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 are not always easy to find. Our list of points of contact can help you to locate and make use of local offers.