Pain that brings your life to a standstill is not normal, even though many women are told for years that period pain is simply part of being a woman. With endometriosis, tissue that resembles your womb lining grows in places outside your uterus, and that can cause a great deal of trouble. An estimated 1 in 10 women of reproductive age are affected (WHO).
I notice that many women struggle with not being believed about their pain. So below I set out honestly what endometriosis is, which symptoms fit the picture and how the diagnosis works.
One thing I want to make clear straight away: there is no blood test that detects endometriosis. Blood tests do have a role, but a different one than you might think. Below you read exactly which.
What is endometriosis?
Endometriosis is a condition in which tissue that resembles your womb lining grows in places outside your uterus, such as on the ovaries, the fallopian tubes or the lining of your abdomen. This tissue responds to your hormones and can swell and bleed each cycle, causing inflammation, pain and scar tissue. Around 1 in 10 women have it (WHO).
Because the tissue cannot leave the body like a normal period, it builds up and irritates the surrounding tissue.
Endometriosis is a chronic condition that varies greatly from woman to woman. One woman has mild complaints, another faces serious limitations in daily life. The severity of the complaints also says little about the amount of tissue that is found.
The lesions sit most often in the pelvis, but can also lie on the bladder or the bowel. In rare cases they are found elsewhere in the body. Where the tissue sits partly determines which complaints you experience.
Endometriosis is not contagious and it is not the result of anything you did wrong. The exact cause is not yet fully known, although heredity and your immune system probably play a part.
What are the symptoms of endometriosis?
The best known symptoms of endometriosis are severe period pain, chronic pelvic pain, pain during sex and pain when urinating or passing stool during your period. Alongside these, fatigue, a bloated feeling and sometimes trouble getting pregnant are common. The complaints differ greatly from woman to woman.
What makes the complaints hard to recognise is that they resemble other conditions, such as irritable bowel syndrome or ordinary period pain.
The table below links each common symptom to the reason it occurs. This shows it is not about separate complaints, but about a connected picture.
| Symptom | Why it occurs |
|---|---|
| Severe period pain (dysmenorrhoea) | The endometriosis tissue bleeds along with your cycle and causes inflammation and cramping |
| Chronic pelvic pain outside your period | Ongoing inflammation and scar tissue irritate the nerves in your pelvis |
| Pain during sex (dyspareunia) | Deep lesions or adhesions behind the uterus are touched during penetration |
| Pain when urinating or passing stool during your period | Tissue on the bladder or bowel swells along around your period |
| Heavy or prolonged bleeding | The hormonal stimulation can also make your period itself heavier |
| Fatigue and a bloated feeling | Long-term inflammation costs your body energy and can irritate your bowels |
| Trouble getting pregnant | Adhesions can affect the fallopian tubes or ovaries |
What touches many women here is the impact on their daily life. Pain that returns every month costs energy, weighs on your mood and can put your work and relationships under strain. Taking your complaints seriously is therefore not an exaggeration, but simply looking after yourself.
Do you mainly recognise intense pain around your period? Then read how to tell endometriosis from ordinary period pain. Is heavy bleeding the bigger problem? Then see our explainer on heavy periods, causes and when to test.
Why does the diagnosis often take so long?
A diagnosis of endometriosis takes years on average, often seven years or more. This is because the complaints resemble other conditions, period pain is often socially dismissed as normal, and because there is no simple test. As a result, many women live with unexplained pain for a long time.
That delay is not your fault. It is a well known problem in healthcare, and thankfully attention for it is growing.
You can help shorten the road to a diagnosis by mapping your complaints carefully. That helps your GP make sense of your story sooner.
- Keep a pain diary for a few cycles with the timing, the location and the intensity of your pain
- Note whether the pain is linked to your period, to sex or to urinating and passing stool
- Write down how many painkillers you need and whether they help enough
- Track whether you miss work, study or social plans
Tell your GP clearly that the pain affects your daily life. Ask directly whether endometriosis could be a possible explanation. You do not have to wait for it to pass on its own.
Prepare for your appointment and bring your notes. A concrete overview makes it easier for your doctor to make sense of your story and to take the right next steps. Feel free to ask which further investigations are possible and when a referral to a gynaecologist becomes sensible.
How is endometriosis diagnosed?
Endometriosis is diagnosed based on your story and a combination of investigations. The GP or gynaecologist starts with a history and a gynaecological examination, followed by an internal ultrasound and sometimes an MRI. A laparoscopy, a keyhole operation through the abdomen, is considered the gold standard for confirming endometriosis with certainty.
Not every woman goes through all steps. Treatment often starts based on the pattern of complaints and the ultrasound, before surgery comes into play.
The first step is with your GP. If endometriosis is suspected, they can refer you to a gynaecologist, ideally one with experience in this field. For more complex situations there are specialised endometriosis centres in the Netherlands.
This is what the diagnostic path usually looks like:
- History: your doctor asks about your complaints, your cycle and your medical background
- Gynaecological examination: an internal examination to feel for tender spots or abnormalities
- Internal ultrasound: mainly useful to visualise cysts on the ovaries (endometriomas)
- MRI: gives a more detailed picture of deeper or complex lesions
- Laparoscopy: the keyhole operation that lets the doctor see the lesions directly and sometimes treat them at once
Important to know: a normal ultrasound does not rule out endometriosis. Small or superficial lesions are often invisible on imaging, while they can still cause complaints.
A diagnosis is not a goal in itself, but it does open the door to focused treatment. Think of good pain relief, hormonal therapy that pauses your cycle, or in some cases surgery. Which route fits you, you decide together with your doctor.
What can blood tests add, and what can they not?
There is no blood test that detects endometriosis. The tumour marker CA-125 can be raised in endometriosis, but is not reliable enough for diagnosis and is not used for it. Blood tests do have value: they mainly help to rule out look-alike causes such as an underactive thyroid or anaemia, and to map your hormones and fertility if you want to conceive.
This is the part that is often explained wrongly, so I deliberately say it once more. A normal blood result does not mean you do not have endometriosis, and an abnormal value does not prove it.
CA-125 is a protein that can be raised in all sorts of conditions, not just endometriosis. A normal value can wrongly reassure you, while a raised value causes needless worry. For diagnosis this marker offers too little to go on.
Where blood tests can help you in this situation:
- Ruling out look-alikes: an underactive thyroid (TSH) or anaemia can also cause fatigue, an erratic cycle or heavy periods
- Iron with heavy bleeding: prolonged heavy periods can deplete your iron stores and add to your tiredness
- Hormones when trying to conceive: if you want to get pregnant, a hormone profile such as FSH, LH and oestradiol gives insight into your fertility
The Hormones Women panel measures a set of hormones in one draw and so helps to map other causes, not to diagnose endometriosis. See it as extra puzzle pieces alongside your doctor's judgement. Do you mainly want to know what you can test around a wish to conceive? Then read about endometriosis and fertility and what you can test.
If you want your hormones measured, keep your cycle in mind. FSH, LH and oestradiol are usually drawn in the first days of your period. If you have no cycle or a very irregular one, blood can be taken at any time.
Wondering whether your erratic cycle is hiding something else? In our pillar on irregular periods and which hormones to test you read which values give insight then.
When should you see your GP?
See your GP if your period pain is so severe that ordinary painkillers do not help enough, if your pain affects your work, study or social life, or if you have pain during sex, urinating or passing stool. It is also wise to discuss your complaints if pregnancy is not happening. Pain that brings your life to a standstill always deserves serious attention.
You do not have to prove first that it is serious. Ongoing complaints are in themselves a good reason to speak up.
In any case, get in touch with these signals:
- Period pain for which you need the highest dose of painkillers every month
- Pain that continues outside your period as well
- Pain during sex that keeps coming back
- You have been trying to conceive for more than a year without result
Do you not feel heard? Then feel free to ask for a second opinion or a referral to a gynaecologist. You know your own body best.
Finally, I want you to know that you are not alone with endometriosis. It is a common condition, and there is growing knowledge and attention for it. With the right guidance the complaints can often be eased well, even though a lasting cure is not yet possible.
Read more about endometriosis
Endometriosis touches many different sides of your health, from pain to fertility to your daily energy. That is why we have developed this pillar into several in-depth articles. Below you find the topics that raise the most questions, so you can read on with focus.
These articles help you bring your own situation into sharper view:
- Endometriosis or ordinary period pain: the difference
- Endometriosis and fertility: what you can test
- Living with endometriosis: recognising and tackling complaints
Do you still have questions about your own situation after reading? Discuss them with your GP and use these articles as preparation. Going into the conversation well informed helps you get the care that fits you.
Frequently asked questions
Can endometriosis be detected with a blood test?
No. There is no blood test that detects endometriosis. The marker CA-125 can be raised, but is not reliable enough for diagnosis. Blood tests mainly help to rule out other causes such as a thyroid problem or anaemia and to map your fertility.
So how is endometriosis diagnosed?
The diagnosis rests on your pattern of complaints, a gynaecological examination, an internal ultrasound and sometimes an MRI. A laparoscopy, a keyhole operation through the abdomen, is the gold standard. A normal ultrasound does not rule out endometriosis, because small lesions are often invisible.
Is severe period pain always endometriosis?
No, not always. Severe period pain can have other causes too. But pain that affects your daily life or for which ordinary painkillers do not work is never simply normal. So discuss ongoing complaints with your GP, who can assess what is going on.
Does endometriosis go away at menopause?
Because endometriosis is hormone sensitive, complaints ease for many women around menopause, when oestrogen levels fall. Still, this does not apply to everyone, and treatments or residual complaints can play a part. Discuss your personal situation with your GP or gynaecologist.
References
- World Health Organization. Endometriosis fact sheet. WHO, 2023. Available via who.int.
- Thuisarts.nl. I have endometriosis. Dutch College of General Practitioners. Available via thuisarts.nl.
- NHG. NHG guideline on pelvic complaints and endometriosis. Dutch College of General Practitioners. Available via richtlijnen.nhg.org.
- Endometriose Stichting. What is endometriosis and what are the symptoms. Available via endometriose.nl.
Every blood test result through Lunara includes a professional assessment by a BIG-registered doctor. For diagnosis and treatment of endometriosis, discuss your symptoms with your GP or gynaecologist.
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