Understanding endometriosis: symptoms, diagnosis, where to get help

Endometriosis is a chronic condition in which tissue similar to the lining of the womb grows outside the uterus. Typical endometriosis symptoms are severe period pain, pain during sex, bladder or bowel problems and difficulty getting pregnant. In Germany, an estimated two million people are affected. There is no cure so far, but endometriosis can be treated well.

Contents

• What is endometriosis?
• How common is endometriosis?
• Which symptoms are typical of endometriosis?
• Why does diagnosis often take so long?
• How is endometriosis diagnosed?
• What treatments are available?
• Endometriosis and wanting children: what does it mean?
• Where can you find help and support?
• How do you prepare for your appointment?
• Common questions about endometriosis

What is endometriosis?

With endometriosis, tissue similar to the lining of the womb (the endometrium) grows in places where it does not belong. On the peritoneum, for example, on the ovaries, the bladder or the bowel. These patches of tissue are called endometriosis lesions.

Here is the awkward part: the lesions follow your cycle. They respond to the same hormones as the lining inside the uterus, they build up and they bleed. Unlike during your period, though, the blood cannot drain away. That can trigger inflammation, cysts and adhesions, and those hurt.

Endometriosis is a chronic condition, not a mood and not some "woman's lot". It runs very differently from person to person. Some have extensive lesions and barely any complaints, others have small lesions and severe pain. The size of the lesions says little about how much someone suffers.

Why endometriosis develops has still not been fully explained. Several theories exist: menstrual blood flowing backwards, changes in cells in the abdomen, or an inherited predisposition. Most likely several factors act together. One thing is certain: you did nothing wrong. Nobody gets endometriosis because she moves too little, eats the wrong things or is "too sensitive".

How common is endometriosis?

Far more common than many people assume. Estimates suggest that 8 to 15 per cent of all girls and women of childbearing age are affected. For Germany that means around two million people. Each year roughly 40,000 new cases are added.

For context: that makes endometriosis one of the most common gynaecological conditions there is. Even so, many people have never heard the name until they or someone close to them gets the diagnosis. That gap between how common it is and how little it is known is one reason why so many people spend years alone with their symptoms.

Which symptoms are typical of endometriosis?

The most common symptom is very severe pain during your period. About 95 per cent of those affected have this so-called dysmenorrhoea. But endometriosis can show up in many ways, and that is exactly what makes it so hard to spot.

Typical signs are:

• Very strong, cramping period pain that shuts down your day
• Chronic pain in the lower abdomen, also outside your period
• Pain during or after sex
• Pain when passing urine or opening your bowels, especially during your period
• Very heavy or irregular bleeding
• Difficulty getting pregnant
• Exhaustion and tiredness that sleep does not fix
• Back pain or pain radiating into the legs

Important: some people have no symptoms at all and their endometriosis is found by chance. And how bad the pain is tells you nothing about how widespread the lesions are.

One sentence worth remembering: pain that regularly forces you to cancel school, work or plans is not normal. It is a reason to look more closely. Not because endometriosis is automatically behind it, but because you have a right to an explanation.

Why does diagnosis often take so long?

Here comes the number many women know from their own experience: from the first symptoms to the diagnosis, six to ten years pass on average. It often drags on longest when the complaints are experienced mainly as pain.

How can that be? Several things come together.

First, endometriosis takes many forms. The symptoms resemble those of other conditions, such as irritable bowel syndrome, bladder infections or PMS. Misdiagnoses are common as a result.

Second, period pain still counts as normal socially. For years many women hear lines like "that's just part of it" or "don't make such a fuss". Some hear it from family, some even in the doctor's surgery. Hear that often enough and at some point you stop going.

Third, diagnosis used to be a big undertaking. The final proof was a laparoscopy, so an operation. That hurdle delayed a lot of investigations. The good news: this is exactly where things have changed recently, more on that in a moment.

If you recognise yourself in this: your pain is real, even if nobody has found a cause yet. It is fine to get a second opinion and to keep pushing.

How is endometriosis diagnosed?

In Germany, diagnosis follows the current medical guideline on endometriosis, revised in 2025. It favours a gentle, step-by-step approach.

The conversation. It starts with your medical history. Your doctor asks about your symptoms, your cycle, pain during sex, bladder and bowel problems and whether you want children. The more precisely you can describe things, the better. A pain diary covering one or two cycles is worth its weight in gold here.

The physical examination. Next comes a gynaecological examination in which the doctor feels for tender spots, nodules or hardened areas.

The ultrasound. Vaginal ultrasound is now the main imaging method. In experienced hands it picks up many endometriosis lesions, cysts on the ovaries and deeper lesions. The current guideline puts ultrasound at the centre: in many cases it can replace laparoscopy as a diagnostic tool.

The laparoscopy. Laparoscopy is a small operation in which the abdomen is examined with a camera. Today it is used mainly when imaging does not give a clear answer, when symptoms persist despite treatment, or when lesions are to be removed straight away. The advantage: diagnosis and treatment in one step.

What this means for you: getting a diagnosis is less of an ordeal than it was a few years ago. A gynaecology practice is a good first port of call, and for complex cases a specialist endometriosis centre.

What treatments are available?

Endometriosis cannot be cured so far, but it can be treated. The aim of treatment depends on you: is the pain your main concern, wanting a baby, or both? Therapy is tailored to that, which is also what the guideline recommends.

The main building blocks:

Pain medication. Anti-inflammatory painkillers such as ibuprofen or naproxen can take the edge off acute symptoms. They do not treat the cause, but many women find they make daily life noticeably easier.

Hormonal therapy. Hormone preparations, progestogens above all, are considered first-line treatment. They slow the cycle and with it the activity of the lesions. Combined pills are an option too if you tolerate them well. Which option suits you depends on your situation, for instance whether you want hormonal contraception or are trying to conceive.

Surgery. With severe symptoms, large cysts or fertility problems, endometriosis lesions can be removed surgically, usually by laparoscopy. An operation can improve symptoms considerably, although lesions can come back.

Multimodal approaches. Because endometriosis is chronic, it pays to look beyond medication and surgery. Physiotherapy, pain management, psychological support, nutrition and relaxation techniques can add to treatment. Many women build their own toolkit over time.

What makes sense for you is something you decide together with your doctor or your care team. Asking questions, needing time to think and weighing up options is entirely legitimate.

Endometriosis and wanting children: what does it mean?

For many women this is the hardest question, so here is an honest answer. Yes, endometriosis can affect fertility. Estimates put the share of affected women who struggle to get pregnant at 30 to 50 per cent. Adhesions can affect the fallopian tubes, for example, and inflammation can disturb the environment an embryo needs to implant.

The other side matters just as much: plenty of people with endometriosis do get pregnant, many of them naturally. An endometriosis diagnosis is not a verdict on your family planning.

If you want children and pregnancy is taking its time, raise it early. Depending on your situation, surgery on the lesions can improve your chances; in other cases fertility treatment helps. Specialist fertility clinics and endometriosis centres often work closely together.

Where can you find help and support?

You do not have to do this on your own. These places have proved useful:

Your gynaecology practice. The first place to get things checked. If you do not feel taken seriously, switching practice or asking for a second opinion is your right.

Certified endometriosis centres. Germany has specialist centres set up for diagnosing and treating endometriosis and certified to common standards. They are worth the journey with complex cases, planned operations or fertility questions. You can find an overview through the Endometriose-Vereinigung.

Endometriose-Vereinigung Deutschland e.V. The self-help organisation run by women with the condition. It offers clear information, advice from people who have endometriosis themselves and a nationwide network of support groups.

Support groups and communities. Talking to others with the same condition can lift a huge weight. Hearing that others are walking the same road takes the loneliness out of it. In person or online: pick whichever format suits you.

Psychological support. Chronic pain wears you down. If you notice the illness pulling your mood down, psychological support is not a sign of weakness. It is part of good treatment.

How do you prepare for your appointment?

A well prepared appointment makes it more likely that your symptoms get read correctly. These points help:

• Keep a pain and cycle diary beforehand for one or two cycles: when does the pain come, how bad is it (on a scale of 1 to 10, for example), what helps?
• Note every symptom, including 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, cancelled plans, giving up sport or sex. These effects are what make the burden visible.
• Think through your most important questions in advance and bring them in writing.
• If it helps, bring someone you trust to the appointment.

And one sentence for the case that your symptoms get brushed aside: "I want endometriosis ruled out. Can we investigate this please, or can you refer me to a centre?" You are allowed to insist.

This article is for general information and does not replace medical advice. If your symptoms are severe, unusual or persistent, please speak to your gynaecologist.