Do I Have Endometriosis? Spotting the Signs and Understanding Diagnosis

You can't diagnose endometriosis yourself, but there are warning signs you can watch for in your own body before you see a doctor for an examination and diagnosis. These can include very painful periods, pain during sex or even pain when you go to the toilet. Otherwise unexplained infertility can be a symptom too. On average it takes six to ten years to get an endometriosis diagnosis, so paying attention to the signs matters if you suspect you have it. This article helps you recognise them and prepare for your appointment.

Contents

• What is endometriosis?
• How do you know whether you might have endometriosis?
• The complications
• Questions for your doctor
• Where to find support
• Common questions about endometriosis

What is endometriosis?

Endometriosis happens when tissue similar to the lining of the womb starts growing in places where it doesn't belong. That growth can cause painful symptoms that go beyond the menstrual cycle and can disrupt everyday life. The tissue can grow in the space behind the womb, on the ovaries or in the fallopian tubes. Endometriosis tissue behaves much like the lining inside the womb: it thickens, breaks down and bleeds with every menstrual cycle. Because of this extra tissue, though, you may have more pain or heavier bleeding during your period.

Endometriosis is fairly common and affects almost one in ten women worldwide. Most diagnoses happen in people aged 20 to 30, but it can show up at any point, from the first period through to menopause. It can affect anyone who has or has had a womb.

Unfortunately, doctors still aren't certain what causes endometriosis. One possible cause is retrograde menstruation, where menstrual blood flows back into the pelvic cavity instead of leaving the body. That blood contains cells from the inner lining of the womb, which can attach to the pelvic walls, grow there and keep thickening and bleeding with every cycle. Another possible explanation is that hormonal changes or immune factors can turn cells lining the abdomen into cells resembling those of the womb lining. Problems with the immune system may mean the body can't recognise and break down endometriosis tissue. All of this is still under research, and specialists can't yet name one exact cause.

How do you know whether you might have endometriosis?

One of the most common symptoms is severe period pain, bad enough to stop you getting on with everyday activities. Pain can also occur outside your period, in the pelvic area or lower back. Watch out for unusual pain when you use the toilet, or for dyspareunia (pain during sex), as these can point to endometriosis. Heavy bleeding during your period or bleeding between periods can be another sign. Alongside intense pain and inflammation, endometriosis can also lead to infertility. Because it makes tissue grow where it shouldn't, it can interfere with how egg and sperm meet at fertilisation. These are the more common symptoms, so keep an eye out for them if you think you might be affected.

There is no link between how severe your symptoms are and how severe the condition is. Some people have severe endometriosis and no pain at all. Others have intense pain with only small patches of endometriosis. Some people have no symptoms whatsoever and only find out after surgery for another reason or during investigations into infertility.

Severe pain is not normal, and you shouldn't try to ignore it or play it down. Pain shouldn't be so debilitating that it disrupts your daily life or affects school, work or your social life. If you feel your pain has been brushed off or called "normal", you're not alone. According to Endometriosis Network Canada, 8 out of 10 people later diagnosed with endometriosis were first told their pain was normal. Your pain and your experience deserve attention. Look for help and for ways to ease your symptoms, and part of that can be getting a diagnosis if you think you have endometriosis.

Doctors test for endometriosis in several ways. They'll probably start with a physical examination and questions about your symptoms and pain levels. They may do a pelvic examination to check for unusual changes such as cysts, tender spots, growths or scar tissue. An ultrasound can be used to look for cysts, but it can't give a definitive diagnosis. Another option is an MRI scanner, which uses a magnetic field and radio waves to make endometriosis lesions visible. Blood tests can be done to rule out other conditions. None of these methods is conclusive on its own. The only conclusive test is laparoscopy, a surgical procedure in which the surgeon examines the inside of the abdomen for endometriosis tissue.

In Germany, the standard diagnostic route is usually covered by statutory health insurance (GKV) at every step. That includes an initial consultation, an ultrasound and, if needed, an MRI, provided your doctor considers it necessary. Where there is a medical indication, statutory insurance also covers a laparoscopy, although ultrasound and/or MRI normally come first. Laparoscopy is usually only used when imaging doesn't give a clear answer. A saliva test, however, is not covered and usually costs patients 799 € out of pocket. For people with private insurance (PKV), medically necessary treatment is generally covered too. Since every case differs, check any open questions with the doctor treating you.

The complications

Unfortunately, endometriosis can look a lot like many other conditions that cause pelvic pain, including irritable bowel syndrome (IBS), ovarian cysts or adenomyosis. Its varied and inconsistent symptoms make it much harder for some doctors to reach the right diagnosis. Symptoms such as painful cramps are often mild at first, then get worse over time and spread to more areas. If you're wondering whether you have endometriosis or something else, notice whether your pain is progressive and cyclical, because those features point strongly towards endometriosis. The most important step with worrying symptoms is still to get medical help. There is no self-test for endometriosis, even though you can compare symptoms online or fill in questionnaires. Medical examinations, physical findings and surgery can help rule out other causes and reach a diagnosis. A doctor can also help you clear up open questions and find solutions, whether it turns out to be endometriosis or another condition.

Questions for your doctor (and for yourself!)

Questions for yourself before your appointment

Think about why you believe you might have endometriosis. Recall your pain and other symptoms as precisely as you can and write them down, which helps your doctor understand your situation.

• Does anyone in your family have endometriosis?
• Is there anything else in your medical history that could be relevant to the symptoms you're having?
• What do you want to take away from this conversation? Help with pain management? Information on fertility options? Treatment options? That's up to you and should fit your needs.

Questions for your doctor

• What options are there for managing pain?
• Are there useful complementary approaches? Does your doctor have recommendations?
• Is there any information material or are there useful websites they can recommend?
• What are the options if the chosen treatment doesn't work?
• How will you know that the current treatment plan isn't working, and when should you seek medical advice again?

Your questions should of course fit your own situation. It also matters a great deal that you feel comfortable and safe with your doctor. If you feel you can't talk openly about your symptoms, or that you're not really being listened to, remember this: you can always see a different doctor. In these appointments, feeling safe, heard and taken seriously is essential.

Where to find support

These organisations offer reliable information and contact with others who have endometriosis:

• Endometriose-Vereinigung Deutschland e.V.
• Support groups run by the Endometriose-Vereinigung

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