Understanding Endometriosis: Symptoms, Diagnosis, Resources
Endometriosis is a chronic condition where tissue similar to the lining of the uterus grows outside the uterus. Typical symptoms of endometriosis include severe period pain, pain during sex, bladder or bowel problems, and difficulty conceiving. In Germany, an estimated two million people are affected. Endometriosis is not yet curable, but it is treatable.
Contents
- What is Endometriosis?
- How common is Endometriosis?
- What are the typical symptoms of Endometriosis?
- Why does diagnosis often take so long?
- How is Endometriosis diagnosed?
- What treatments are available?
- Endometriosis and fertility: what does it mean?
- Where can you find help and resources?
- How to prepare for a doctor's appointment?
- Frequently asked questions about Endometriosis
What is Endometriosis?
Endometriosis is a condition in which tissue similar to the lining of the uterus (the endometrium) grows in places where it doesn't belong. For example, on the peritoneum, ovaries, bladder, or intestines. These tissue implants are called endometriotic lesions.
The insidious thing about it is that these lesions go through the menstrual cycle. They react to the same hormones as the uterine lining, build up, and bleed. Unlike menstruation, however, the blood cannot drain away. This can trigger inflammation, cysts, and adhesions, and these cause pain.
Endometriosis is a chronic disease, not a mere discomfort or a "woman's fate." It varies greatly from person to person. Some have extensive lesions and hardly any symptoms, while others have small lesions and severe pain. The size of the lesions says little about how much someone suffers.
Why endometriosis develops is still not fully understood. There are several explanatory approaches, such as retrograde menstrual flow, changes in cells in the abdominal cavity, or a hereditary predisposition. It is likely that several factors interact. One thing is certain: you have done nothing wrong. No one gets endometriosis because they exercise too little, eat incorrectly, or are "too sensitive."
How common is Endometriosis?
Significantly more common than many people think. Estimates suggest that 8 to 15 percent of all girls and women of childbearing age are affected. For Germany, this means around two million people. Approximately 40,000 new cases are added each year.
For comparison: Endometriosis is one of the most common gynecological diseases of all. Nevertheless, many do not even know the name until they or someone in their environment receives the diagnosis. This gap between prevalence and awareness is one of the reasons why those affected often suffer alone with their symptoms for years.
What are the typical symptoms of Endometriosis?
The most common symptom is very severe pain during menstruation. Approximately 95 percent of those affected suffer from this so-called dysmenorrhea. But endometriosis can manifest in many ways, and that is precisely what makes it so difficult to recognize.
Typical signs include:
- Very severe, cramping period pain that incapacitates daily life
- Chronic lower abdominal pain, even outside of menstruation
- Pain during or after sex
- Pain when urinating or having a bowel movement, especially during menstruation
- Very heavy or irregular bleeding
- Difficulty conceiving
- Exhaustion and fatigue that cannot be slept off
- Back pain or pain radiating into the legs
Important: There are also affected individuals without symptoms, in whom endometriosis is discovered by chance. And the intensity of the pain does not indicate how extensive the lesions are.
A phrase you can remember: Pain that regularly forces you to cancel school, work, or appointments is not normal. It is a reason to look more closely. Not because it automatically means endometriosis, but because you have a right to an explanation.
Why does diagnosis often take so long?
Here's the number that many affected individuals know from their own experience: On average, seven and a half years pass from the first appearance of symptoms to diagnosis. For people who primarily present with pain, it can even take up to ten years.
How can this be? Several things come together.
First, endometriosis is multifaceted. The symptoms resemble those of other conditions, such as irritable bowel syndrome, bladder infections, or PMS. Misdiagnoses are therefore common.
Secondly, period pain is still socially considered normal. For years, many affected individuals hear phrases like "That's just part of it" or "Don't be so dramatic." Some hear them from family, some even in the doctor's office. Anyone who has heard such things often enough eventually stops seeking help.
Third, diagnosis used to be complex. Laparoscopy, a surgical procedure, was considered the ultimate certainty. This hurdle delayed many examinations. The good news: A lot has changed here recently, more on that in a moment.
If you recognize yourself in this description: Your pain is real, even if no one has found a cause yet. It's okay to get a second opinion and to persist.
How is Endometriosis diagnosed?
Diagnosis in Germany follows the current medical guideline for endometriosis, which was revised in 2025. It relies on a gentle, step-by-step approach.
The Consultation. It begins with anamnesis. Your doctor will ask about your symptoms, your cycle, pain during sex, bladder and bowel problems, and your desire to have children. The more accurately you can report, the better. A pain diary kept for one to two cycles is invaluable for this.
The Palpation. A gynecological examination follows, during which the doctor palpates for tender spots, nodules, or hardening.
The Ultrasound. Vaginal ultrasound is now the most important imaging technique. In experienced hands, many endometriotic lesions, ovarian cysts, and deeper lesions can be well recognized. The current guideline focuses on ultrasound: in many cases, it can replace laparoscopy as a diagnostic tool.
Laparoscopy. Laparoscopy is a minor surgical procedure in which the abdominal cavity is examined with a camera. Today, it is mainly used when imaging does not provide clarity, symptoms persist despite treatment, or lesions are to be removed directly. The advantage: diagnosis and therapy are possible in one step.
For you, this means that the path to diagnosis is less burdensome today than it was a few years ago. A good first point of contact is a gynecological practice; in complex cases, a specialized endometriosis center.
What treatments are available?
Endometriosis is not yet curable, but it is treatable. The goal of treatment depends on you: Is pain the main concern, fertility, or both? The therapy is tailored to this, as stipulated by the guideline.
The most important components at a glance:
Pain medication. Anti-inflammatory painkillers like ibuprofen or naproxen can relieve acute symptoms. They do not treat the cause, but they provide many with noticeable relief in everyday life.
Hormonal therapy. Hormonal preparations, especially progestins, are considered first-line treatment. They slow down the cycle and thus the activity of the lesions. Combined pill preparations are also an option if well tolerated. Which option is suitable depends on your situation, for example, whether you want to use hormonal contraception or are currently trying to conceive.
Surgery. In cases of severe symptoms, large cysts, or difficulty conceiving, endometriotic lesions can be surgically removed, usually by laparoscopy. Surgery can significantly improve symptoms, but lesions can also recur.
Multimodal approaches. Because endometriosis is a chronic condition, it's worth looking beyond medication and surgery. Physiotherapy, pain therapy, psychological support, nutrition, and relaxation techniques can supplement the treatment. Many affected individuals build their own toolbox over time.
You and your doctor or treatment team will decide what makes sense for you. It is perfectly legitimate to ask questions, take time to think, and weigh your options.
Endometriosis and fertility: what does it mean?
This is the most stressful question for many affected individuals, so here's an honest assessment. Yes, endometriosis can impair fertility. Estimates suggest that 30 to 50 percent of those affected have difficulty getting pregnant. Adhesions, for example, can affect the fallopian tubes, and inflammatory processes can disrupt the environment for implantation.
Equally important, however, is the other side: many people with endometriosis get pregnant, many of them naturally. An endometriosis diagnosis is not a verdict on your family planning.
If you want children and pregnancy is delayed, address the issue early. Depending on the situation, surgery for the lesions can improve chances, and in other cases, fertility treatment helps. Specialized fertility centers and endometriosis centers often work hand-in-hand here.
Where can you find help and resources?
You don't have to go through this alone. These resources have proven helpful:
Your gynecological practice. The first point of contact for clarification. If you feel you are not being taken seriously, changing practices or getting a second opinion is your right.
Certified Endometriosis Centers. In Germany, there are specialized centers focused on the diagnosis and treatment of endometriosis, which are certified according to uniform standards. Especially in complex cases, planned surgeries, or fertility wishes, it is worth seeking them out. An overview can be found through the Endometriosis Association.
Endometriosis-Vereinigung Deutschland e.V. (Endometriosis Association Germany). The self-help organization for affected individuals. It offers understandable information, counseling from people with their own experience of endometriosis, and a nationwide network of self-help groups.
Self-help groups and communities. Exchanging experiences with other affected individuals can be a huge relief. Hearing that others are on the same path takes away the loneliness. Whether locally or online: find the format that suits you.
Psychological support. Chronic pain is debilitating. If you notice that the disease is affecting your mood, psychological support is not a sign of weakness, but part of good treatment.
How to prepare for a doctor's appointment?
A well-prepared appointment increases the chance that your symptoms will be correctly assessed. These points can help:
- Keep a pain and cycle diary for one to two cycles beforehand: When does the pain occur, how severe is it (e.g., on a scale of 1 to 10), what helps?
- Note all symptoms, even those that seem unrelated to your cycle, such as bladder or bowel problems and exhaustion.
- Write down which treatments and painkillers you have already tried and how they worked.
- Record how the symptoms limit your daily life: days off work, canceled appointments, giving up sports or sex. These effects clearly show the extent of your suffering.
- Think about your most important questions beforehand and bring them in writing.
- If it helps you, bring a trusted person to the appointment.
And a sentence for when your complaints are dismissed: "I want to rule out endometriosis. Can we please clarify this or refer me to a specialized center?" You are entitled to demand this.
Frequently asked questions about Endometriosis
How can one recognize Endometriosis?
Typical signs include very severe period pain, chronic lower abdominal pain, pain during sex, discomfort during urination or bowel movements, and difficulty conceiving. However, symptoms vary from person to person, and some affected individuals have no symptoms at all.
Is Endometriosis curable?
According to current knowledge, no. Endometriosis is a chronic condition. However, symptoms can often be significantly reduced with medication, hormonal therapy, surgery, and complementary approaches.
How long does it take to get a diagnosis?
On average, about seven and a half years pass between the first symptoms and diagnosis; for patients with only pain, it can sometimes take up to ten years. A prepared doctor's appointment and requesting specific clarification can shorten the path.
Do I need surgery for diagnosis?
Not necessarily. According to the current guidelines, vaginal ultrasound is the most important diagnostic tool and can replace laparoscopy in many cases. Surgery is mainly considered if imaging does not provide clarity or if lesions need to be removed.
Will Endometriosis make me infertile?
Not necessarily. Endometriosis can reduce fertility, and 30 to 50 percent of affected individuals have difficulty getting pregnant. However, many do get pregnant, either naturally or with the help of fertility treatment.
Does Endometriosis recur after surgery?
It is possible. New lesions can form after removal, which is why hormonal therapy is often recommended after surgery to reduce the risk. Regular check-ups help to detect changes early.
Does a specific diet help with Endometriosis?
There is no diet that demonstrably cures or stops endometriosis. Some affected individuals report that an anti-inflammatory, balanced diet benefits them. As a complement to medical treatment, there is no harm in trying it out for yourself.
Is Endometriosis hereditary?
A family history is described: if your mother or sister is affected, your own risk is increased. A single "endometriosis gene" has not yet been found; presumably, several hereditary and other factors interact.
Sources
- AWMF: S2k Guideline Diagnostics and Therapy of Endometriosis, Registration Number 015-045, Version 2025. register.awmf.org
- Endometriose-Vereinigung Deutschland e.V.: What is Endometriosis? endometriose-vereinigung.de
- Endometriose-Vereinigung Deutschland e.V.: How is Endometriosis diagnosed? endometriose-vereinigung.de
- Endometriose-Vereinigung Deutschland e.V.: Endometriosis and fertility. endometriose-vereinigung.de
- Deutsche Gesellschaft für Gynäkologie und Geburtshilfe (DGGG): Diagnostics and Therapy of Endometriosis, Press release on the guideline. dggg.de
- Bundesgesundheitsministerium, Frauengesundheitsportal: Endometriosis. frauengesundheitsportal.de
This article serves for general information and does not replace medical advice. For severe, unusual, or persistent symptoms, please consult your gynecologist.
