Managing endometriosis symptoms

Some women with endometriosis only have pain during their monthly period, while others have chronic pain. This can be particularly distressing, and a reason to try out a pain management program.

An approach known as multimodal pain management can be used for chronic pain. This involves coordinating different kinds of treatment with each other. Various specialists work together here, including gynecologists, pain specialists, psychotherapists and physical therapists. The therapy may include things like:

• Medication
• Psychological support
• Patient education
• Relaxation techniques
• Physical exercises

The aim is to relieve the symptoms as well as learn to cope and stay active in daily life despite the pain.

Pain management is offered in specialized doctor’s practices, centers, clinics and hospital departments. Multimodal pain management programs are mainly available in pain clinics, psychosomatic departments in hospitals, and rehabilitation centers. The programs last at least seven days, but they usually last two to four weeks.

Endometriosis can affect your mental health in various ways: For example, it can be accompanied by a low mood or anxiety. Many women often feel tired or exhausted. Severe endometriosis pain can also affect your work, relationships and how you spend your free time. You might regularly call in sick because you’re unable to work, or often have to cancel plans with your friends or partner. That can make you feel guilty or less self-confident. The medication to treat endometriosis can affect your mental health as well: For instance, hormone-based treatments may lead to mood swings and other distressing side effects.

If you experience these kinds of problems, you can talk to your doctor about them. Doctors can often give advice on how to deal with psychological stress. If necessary, they can let you know where to get more help – for example, from a psychotherapist or a psychosomatic medicine specialist. They may recommend psychotherapy that is specifically geared towards coping with pain. This involves learning how to influence the pain yourself and deal with it differently. Some exercises, such as relaxation techniques, can change how you perceive pain. You also learn about ways to cope better in daily life despite the pain. Multimodal pain management programs often include psychological support as well.

There is hardly any good research specifically looking at the effect of sports and exercise on endometriosis symptoms. So it’s not clear how well they help to relieve symptoms like severe period pain.

People who have chronic pain sometimes end up being less active and avoiding exercise. That can lead to tense muscles and a bad posture. In turn, that can make the pain even worse and result in other physical and psychological problems. For this reason, doctors recommend that you still get enough exercise – even if your endometriosis symptoms make it harder to do so. It is usually best to do sports that you enjoy and that make you feel good, ranging from swimming to cycling and ball games. The exercise doesn’t have to be hard work, either: Even regular walks can have a positive effect on your wellbeing. You could also try out movement-based relaxation techniques like yoga or progressive muscle relaxation. Physical therapy is sometimes recommended, too.

Endometriosis can sometimes lead to stomach and bowel problems like diarrhea, flatulence (“wind”) or constipation. Some women try to reduce these and other issues by changing their diet or taking dietary supplements. Women who have endometriosis are advised to eat a balanced diet with a lot of vitamins and fiber in it. Special diets are not recommended, unless there are medical reasons such as a certain food intolerance.

There is no research in this area, so women have to find out for themselves whether changing their diet helps. Whether or not you have a problem with certain foods also varies greatly from person to person. A food diary can help you to keep track of when problems occur and whether they can be influenced by your diet: You make a note of what you eat every day and any symptoms you notice. If needed, you can seek professional dietary advice.

Some studies have looked into the effects of dietary supplements (like vitamin D or probiotics) on endometriosis symptoms. But there is a lack of scientific proof that they help.

Women who have endometriosis can use a digital health application. Known as DiGAs in Germany, these apps or website-based programs can be prescribed by a doctor or psychotherapist and are then paid for by public health insurers. They have been officially assessed and certified, and meet certain requirements regarding things like data protection and content quality.

The endometriosis DiGA is designed to help you manage the disease on your own – for example, by providing useful information, showing you how to do certain exercises, and giving you a place to record your symptoms. The app is currently only available in German. You can find out more about what it offers and how to use it on the website of the German Federal Institute for Drugs and Medical Devices (BfArM).

There are various support groups for women with endometriosis. They give you an opportunity to talk openly about issues that may be difficult to talk about with people who aren't directly affected by the disease – like any worries and fears you have. Other women with endometriosis can also share tips about how to cope better with the disease. Being able to talk in this way often comes as a great relief. You can find local support groups in Germany on the website of the Endometriosis Association Germany (Endometriose-Vereinigung Deutschland e. V.).

In Germany, women who have endometriosis can apply for a disability ID card if their symptoms are chronic and affect their ability to do normal activities, such as go to work regularly. If your degree of disability is assessed as being over 50, you can get an ID card for the severely disabled (a Schwerbehindertenausweis). The aim is to compensate for certain difficulties that arise due to the disease – for instance, with the help of reduced entrance fees, discounts on “Hilfsmittel” medical aids, and more tax relief. If you have a degree of disability between 30 and 50, you can still apply to get equal status with severely disabled people in order to receive this extra help.

To have your degree of disability (Grad der Behinderung, GdB) assessed, you can contact your social security authority (Versorgungsamt), or sometimes your social welfare office (Sozialamt / Amt für Soziales).