Overview
In endometriosis, tissue similar to the lining of the womb grows in other places: usually the ovaries, the fallopian tubes and the lining of the pelvis, and sometimes the bowel or the bladder. Each month this tissue responds to the body's hormones, bleeds and inflames the area around it, which over time can leave scar tissue that sticks organs together.
It is a common condition, and it is long term. Diagnosis is often delayed by years, because the main symptom, pain with periods, is so easily put down to ordinary period pain.
Symptoms
Symptoms vary a great deal, and the amount of pain does not match the amount of tissue found. Some women have severe pain with little disease, and some have almost no pain.
- Severe period pain that stops normal activities
- Pain low in the tummy, back or pelvis, which may carry on between periods
- Pain during or after sex
- Pain when opening the bowels or passing urine, often worse during periods
- Heavy periods, or bleeding between periods
- Bloating, constipation or diarrhoea around the time of periods
- Extreme tiredness, low mood or anxiety
- Difficulty becoming pregnant
When to see a doctor
See a doctor if you think you have endometriosis, if period pain or pelvic pain is affecting work, study, relationships or daily life, if painkillers are not helping, or if you have been trying to become pregnant without success. Severe period pain that stops you doing your normal activities is a reason to be seen, not something to put up with.
Causes
The cause is not known. Several explanations are being studied, including changes in the immune system and the way menstrual blood moves within the pelvis. It can run in families. What is clear is that nothing the woman has done brings it on, and it is not caused by anything she eats or by keeping clean or not.
Risk factors
- A mother or sister with endometriosis
- Periods that started at a young age
- Short cycles, with periods coming close together
- Long or heavy periods
- Never having been pregnant
Complications
- Long-lasting pelvic pain, and days lost from work or study
- Scar tissue that sticks organs together
- Cysts on the ovaries
- Difficulty in becoming pregnant
- Iron deficiency anaemia from heavy bleeding
- Low mood and anxiety, which are common when pain goes on for years
Prevention
There is no known way to prevent endometriosis. What does make a difference is not waiting: early diagnosis and treatment control symptoms better and reduce the damage that scarring can do.
Diagnosis
The doctor starts with the story of the pain, its timing and its effect on life, and examines the tummy and pelvis. An or can show cysts on the ovaries and deeper patches, but a normal scan does not rule endometriosis out. The way to be certain is a laparoscopy, a keyhole operation under anaesthetic in which a camera is passed into the tummy to look, and patches can often be treated during the same operation. A pain and bleeding diary helps the doctor a great deal.
Treatment
There is no cure, so treatment aims at the symptoms, and the plan depends on the pain, the wish for a pregnancy and what has already been tried.
- Pain relief such as paracetamol and anti-inflammatory medicines, often taken from just before the period starts
- Hormone treatments that lighten or stop periods, such as the contraceptive pill, progestogen tablets or injections, or a hormone-releasing coil
- Medicines that switch off the monthly cycle for a time, used under specialist care
- Keyhole surgery to remove or destroy the patches and free scarred tissue
- Fertility treatment when it is difficult to conceive
- Physiotherapy, and talking therapy for living with long-term pain
Removing the womb is considered only in some cases and only after other treatments, because it does not always end the pain.
Myths and facts
Things people often say about this. Open each one to see what is true.
Myth“Bad period pain is normal. Every woman goes through it, so there is nothing to see a doctor about.”What is true?
Fact
Period pain that stops you doing your normal activities is not usual, and it is a reason to be seen. Endometriosis is often diagnosed only after years of delay, partly because the pain gets dismissed. Being believed is the first step towards treatment that works.
Myth“Getting married or having a baby cures endometriosis.”What is true?
Fact
There is no cure for endometriosis, and pregnancy is not a treatment for it. Treatments that lighten or stop periods can ease symptoms a great deal, and a doctor can explain these whether or not a woman wants children now.
Myth“If the ultrasound is normal, nothing is wrong.”What is true?
Fact
Scans can look completely normal in endometriosis, and a normal scan does not mean the pain is imagined. Surgery through a keyhole, called laparoscopy, is the way to be sure, and treatment can be started on symptoms alone.
Myth“Endometriosis always means you cannot have children.”What is true?
Fact
Endometriosis is a common reason for difficulty in conceiving, but many women with it become pregnant without help. Where there is difficulty, surgery to remove the patches and fertility treatment both have a part to play.
Questions to ask your doctor
Tick the ones you want answered and take them with you.
Common questions
How can I tell ordinary period pain from endometriosis?
Ordinary period pain settles with simple painkillers and does not stop your day. Pain that keeps you from work, school or sleep, that carries on between periods, or that comes with pain during sex or when opening the bowels, points to something more, and endometriosis is one of the things a doctor will consider.
Why did it take so long for anyone to take me seriously?
Delays of several years are common, because there is no simple blood test, scans can look normal, and severe period pain is often treated as ordinary. That delay is a fault in how the condition is recognised, not a sign that your pain was not real.
Will I be able to have a baby?
Many women with endometriosis conceive without help. It is a common cause of difficulty in conceiving, and if you are having trouble, tell the doctor early. Surgery to remove the patches and fertility treatments such as IVF both improve the chances.
Will it go away after the menopause?
Symptoms usually settle after the menopause, when the monthly hormone changes stop. For some women pain carries on, and it should still be assessed rather than assumed to be part of ageing.
