Endometriosis

The main symptom of endometriosis is pain in the abdomen (belly area). This often occurs when you have your monthly 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 the endometrial implants are and whether they're inflamed. They are most commonly found on the peritoneum, which is the membrane that lines the abdominal cavity. 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. The implants can grow in places like the outside of the womb or in the wall of a fallopian tube, too. If a woman’s ovaries or fallopian tubes are affected, she may have fertility problems (trouble getting pregnant). This is also true if endometrial implants grow in the wall of the womb.

Endometrial implants may also develop in organs like the bladder or bowel. That can cause problems and pain when urinating or during bowel movements (when peeing or pooping). In very rare cases, they grow outside of the pelvic area – in the lungs, for example, which can lead to shortness of breath.

Severe endometriosis can have a big impact on your quality of life and ability to perform normal daily activities.

Every month, the tissue lining the womb (the endometrium) builds up in the course of the menstrual cycle. If you don't become pregnant, this tissue is shed and leaves your body through your vagina together with a little blood. That's what your period is.

In endometriosis, this kind of tissue grows outside of the womb, too, "behaving" in the same way: It builds up in the first half of the menstrual cycle and is then shed again. But the shed tissue can't simply leave the abdominal cavity, like your period does. It stays near to the endometrial implant.

That can make organs stick together (forming adhesions), and lead to inflammations or cysts. Depending on where it develops, endometriosis can cause different kinds of pain – like a cramping or stabbing pain, temporary or chronic.

Although it's not clear what exactly causes endometriosis, it's thought that hormones and genetic factors play a role. For instance, the hormone estrogen promotes the growth of endometrial implants, whereas progesterone does the opposite. In women with endometriosis, the growth-inhibiting effect of progesterone is often weaker. The immune system probably plays a role, too: It usually makes sure that tissue from a particular organ doesn't grow elsewhere in the body. This protective mechanism doesn't seem to work as well in women who have endometriosis.

Based on studies in this area, up to 10% of all women of childbearing age have endometriosis – but there are no exact figures here. Many women have "silent" endometriosis that they are unaware of. It is estimated that about 50% of women who have chronic abdominal pain have endometriosis.

Endometriosis usually only arises during women's childbearing years (between their first and last menstrual period). In rare cases, it already becomes noticeable before a woman's first period.

It is 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 get worse over time. The symptoms often go away once a woman has had her last period (after menopause). Some women still have them after that, though.

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, brownish-red 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 trouble getting pregnant may be a result of severe endometriosis. But it's not clear whether this is also true for mild endometriosis.

Endometrial implants are benign (non-cancerous). Even though they can grow and sometimes affect other organs, they are extremely unlikely to develop into cancer. Endometriosis slightly increases the risk of ovarian cancer, though. About 2 out of 100 women who have endometriosis develop this kind of cancer at some point, compared to about 1 out of 100 women who don't have endometriosis.

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 with their own body.

Chronic pain may lead to tiredness, irritability, anxiety or depressed mood. Painful sex can make it difficult for a woman to enjoy her sexuality. 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 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're unable to get pregnant.

There are several things doctors can do to try to see if you have endometrial implants or related 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). Endometrial implants can be removed during this procedure.

Various treatments can help relieve the symptoms, either temporarily or permanently. The medication options include painkillers and hormone therapy. Painkillers only relieve the symptoms, whereas hormone-based treatments slow down the growth of endometrial implants. But medication only works for as long as you take it. When you stop taking it, the endometrial implants can grow again and cause symptoms.

Endometrial implants can be removed by surgery, too. Sometimes surgery is even the only treatment option – for instance, if endometriosis is preventing the bowel or bladder from working properly. But surgery might not help enough, or the symptoms might return after some time. If you have very severe symptoms, surgery to remove endometriosis tissue hasn't helped, and you don't wish to have any (more) children, doctors may suggest surgery to remove your womb, fallopian tubes and ovaries.

Most women who have endometriosis go to their gynecologist for treatment. But you can also go to a specialized clinic or practice, where you receive treatment from a team of various healthcare professionals. You will find a list of certified centers in Germany here. The aim is to offer women treatment packages tailored to their own personal situations and needs. If you have chronic pain, an approach called multimodal pain management can be used.

Regardless of whether you're considering hormone therapy, painkillers or surgery, all of the treatment options have their pros and cons. It is also difficult to predict whether they will work and, if so, how well. So it's all the more important to find out about the different options and think about which ones might be suitable for you.

When it comes to surgery to remove the womb (hysterectomy), there are special rules in Germany: Doctors who recommend this surgery must inform you of your right to a second medical opinion. That means that you can have an appointment with a different specialist to help you decide whether or not to have a hysterectomy. You will not have to pay for the appointment.

After surgery, or if endometriosis symptoms don't go away despite extensive treatment, women in Germany can have rehabilitation therapy or post-treatment rehabilitation (Anschlussheilbehandlung). This is typically arranged by the social services (Sozialdienst) of the hospital where your endometriosis was treated. The costs of rehabilitation are usually covered by public pension funds (Rentenversicherung) in Germany. Some rehabilitation centers in Germany and other countries offer special programs with a focus on endometriosis.

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 endometriosis involves making a lot of decisions. It helps to be well-informed – about your treatment, and about ways to organize your daily life in order to limit the impact of endometriosis symptoms. Other things that many women find helpful include sports and exercise, relaxation techniques and psychological support. Some try to change their diet, too, especially if their endometriosis causes digestive problems. Unfortunately, there is little research in this area.

It is important that you receive good medical care and support from a doctor who has a lot of experience in the diagnosis and treatment of endometriosis. The doctor 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. When facing difficult decisions, such as whether or not to have surgery, it is often helpful to get a second medical opinion.

Good support from loved ones can be very valuable 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 support groups. It is important that every woman finds her own way to best cope with this chronic disease.

Information about health care in Germany can help you to navigate the German healthcare system and find a suitable doctor. You can use this list of questions to prepare for your appointment.

There are a wide variety of different services in Germany that offer personal advice and other forms of support if you're chronically ill. Our list of places to contact can help you to find and make use of local offers in Germany.