Endometriosis: why it is found late and what the signs are
Endometriosis is a condition in which cells similar to the lining of the womb grow in other places in the body – most often around the ovaries, the fallopian tubes and the lining of the pelvis. According to the NHS, diagnosis can take a long time because the symptoms resemble adenomyosis, fibroids, pelvic inflammatory disease and irritable bowel syndrome, and several tests are often needed. The main signs are severe period pain that gets in the way of your daily life, heavy bleeding, pain in the pelvis, during sex, when peeing or when pooing, and severe tiredness.
- According to the NHS, endometriosis is a condition in which cells similar to the womb lining grow outside the womb – around the ovaries, the fallopian tubes, the lining of the pelvis, sometimes the bladder and bowel, and rarely outside the pelvis.
- Symptoms appear when the patches break down and bleed, but the blood cannot leave the body.
- Diagnosis takes a long time because the symptoms resemble adenomyosis, fibroids, pelvic inflammatory disease and irritable bowel syndrome.
- The only test that, according to the NHS, can confirm endometriosis is a laparoscopy – a camera inserted through a small cut in the tummy.
- There is no treatment that removes it completely, but painkillers, hormone treatments and surgery can control the symptoms.
What is endometriosis and where does it occur?
According to the NHS, endometriosis is a condition in which cells similar to the lining of the womb grow in other parts of the body. Most often this is around the womb – on the ovaries, the fallopian tubes and the lining of the pelvis. Sometimes it affects the bladder and bowel, and in some cases places outside the pelvis, for example the chest.
Symptoms appear because these patches break down and bleed like the womb lining, but the blood has nowhere to go. The NHS notes that the condition can seriously affect daily life, but there are treatments that help.
What are the signs of endometriosis?
The NHS divides the symptoms into those during your period and those that can appear at any time.
During your period:
- severe pain that stops you doing your usual activities;
- heavy bleeding – changing a pad or tampon every 1 to 2 hours, or blood soaking through your clothes.
At any time:
- pain in the lower tummy and back (the pelvic area);
- pain when peeing or pooing;
- pain during or after sex;
- severe tiredness;
- pain or bleeding in other places, for example in the chest, which can cause breathlessness and coughing up blood.
According to the NHS, endometriosis can also lead to difficulty getting pregnant, as well as low mood or anxiety.
Why is endometriosis found so late?
The NHS states directly that diagnosis can take a long time and that several different tests may be needed. The main reason is that the symptoms resemble those of other conditions – adenomyosis, fibroids, pelvic inflammatory disease and irritable bowel syndrome.
There is another factor too: severe period pain is easily accepted as "normal", especially if you have had it for years. The difference, according to the NHS, is whether the pain stops you doing your usual activities – that is not a normal period and is a reason to seek advice, not to put up with it.
How is it diagnosed?
According to the NHS, at the first appointment the doctor will ask about your symptoms and whether close relatives have had endometriosis. They may do a physical examination, including a vaginal examination, to check your tummy and pelvis, and may order blood tests. The more details you give about your symptoms, the better.
If endometriosis is suspected, the doctor may refer you to a gynaecologist for further tests or suggest medicines for relief. The tests, according to the NHS, are an ultrasound scan (through the tummy or vaginally), an MRI scan and a laparoscopy – a procedure in which a camera is inserted through a small cut in the tummy. Laparoscopy is the test that can confirm endometriosis, and sometimes the patches are removed during it.
When should you see a doctor?
According to the NHS, you should book an appointment with a doctor if:
- you think you may have endometriosis;
- the symptoms are affecting your daily life, work or relationships;
- you have already had treatment from a GP but your symptoms have not improved or have got worse.
What treatment is there?
According to the NHS, there is currently no treatment that gets rid of endometriosis, but the symptoms can be controlled. Medicines are usually tried first – painkillers such as paracetamol and ibuprofen and hormone treatments such as the combined contraceptive pill or other medicines that change hormone levels. Hormone treatments are not given to women who are trying to get pregnant.
Surgery may be offered if other treatments do not help, if the endometriosis is extensive or if it affects your ability to have children – removing the patches or cysts on the ovaries, and in more severe cases the womb, the ovaries or part of the bladder or bowel. The NHS states that if treatment fails or your symptoms are very severe, you can be referred to a specialist endometriosis service, and if needed – to a fertility specialist or mental health support. Symptoms usually stop after the menopause, although sometimes they continue after it.
Frequently asked questions
Can an ultrasound scan rule out endometriosis?
According to the NHS, an ultrasound scan is one of the tests, but only a laparoscopy can confirm the diagnosis. A normal ultrasound scan does not mean you do not have endometriosis.
Is endometriosis hereditary?
The NHS states that the cause is not known, but the doctor will ask whether close relatives have had endometriosis – family history is part of the assessment.
Can I get pregnant if I have endometriosis?
According to the NHS, endometriosis can make it harder to get pregnant, but there are options – surgery if it affects fertility, and referral to a fertility specialist.
Sources
- NHS – Endometriosis – last reviewed by the NHS: 27 August 2024
Informational article retold in our own words from the sources listed. It does not replace a consultation with a doctor; in an emergency call 112. If you spot an inaccuracy, write to [email protected].