Endometriosis is a common, incurable and often painful condition in which tissue that behaves like the lining of your womb grows elsewhere in your body. If affects about 1 in 10 women in their reproductive years. It can significantly disrupt your daily life and cause problems getting pregnant.
What is endometriosis?
Endometriosis – often known as just ‘endo’ – happens when tissue that’s like the lining of the womb (the endometrium) grows outside the womb, or uterus. It’s most commonly found in the pelvic area or abdomen, where it can affect your ovaries, fallopian tubes, the outside of the womb, ligaments that support the womb, or tissue lining your pelvis. It can also affect your bladder, bowel and other pelvic organs. In rare cases it can spread beyond the pelvic area to other parts of your body.
Sites where the misplaced tissue is growing are called ‘endometrial implants’.
Because the implanted tissue behaves like the womb lining, it responds in the same way to hormonal changes during your menstrual cycle.
In a normal period, the womb lining thickens and then, if you don’t become pregnant, it breaks down and is shed as blood, passing through your vagina. With endometriosis, the endometrial implants growing outside the womb go through the same cycle of building up and breaking down, but the blood released cannot flow out of your body.
This can lead to painful inflammation, swelling, and scarring in normal tissue around the implants. It can cause ‘adhesions’ that make organs stick together and cysts in the ovaries called endometriomas, or, because of their dark colour, ‘chocolate cysts’. Sometimes implants and cysts can cause damage that leads to difficulty getting pregnant.
Endometriosis is reckoned to affect 1 in 10 women and girls of childbearing age. It is a long-term, or chronic, condition. It can’t be cured but can be managed with treatment to stop it interfering with your day-to-day life. The condition usually goes away after the menopause.
What are the symptoms of endometriosis?
Symptoms of endometriosis can vary a lot from woman to woman and are generally worse around and during your period. Some women, however, have no symptoms or only very mild symptoms.
Common symptoms include:
- painful periods, often with severe cramps
- heavy periods
- pain in the pelvis, abdomen, or lower back
- pain during and after sex (called dyspareunia)
- fatigue or lack of energy
- bleeding between periods
- pain or discomfort going to the toilet
- bleeding from your rectum or having blood in your stool
- feeling bloated
- difficulty getting pregnant
Most women with endometriosis get pain in their lower abdomen. Some may notice nothing or only discomfort that starts a few days before their period and subsides as the period ends. Other women have constant severe pain. And if an implant grows in a sensitive area, you might get pain with certain activities, such as exercise, sex or going to the toilet.
You can have severe endometriosis with little or no pain, and mild endometriosis with severe, continual pain. The pain depends more on where the implants are, rather than the amount of endometrial tissue you have.
In endometriosis, the most common reasons women first see a doctor are pain or because of trouble getting pregnant. In a 2018 survey among more than 350 women with endometriosis using the HealthUnlocked website, 83 per cent said pain was the main reason for their first visit to the doctor and 8 per cent went because of trouble conceiving.
Many women have endo for years before they seek help – they may not have symptoms, or they believe their very painful periods or other problems are ‘normal for them’. This ‘normalisation’ is sometimes reflected by doctors who wrongly see some symptoms as ‘just part of being a woman’.
‘If you know something isn’t right don’t be fobbed off by tests that say you’re OK when you know you’re not’– response in 2018 HealthUnlocked endometriosis survey
In the 2018 HealthUnlocked survey, a quarter of women said they waited between 5 and 10 years for a diagnosis. A further quarter waited from 10 to 20-plus years – so overall half of women in the survey took more than 5 years for their endometriosis to be confirmed. At the other end of the scale, just under 10 per cent said they were diagnosed within 6 months.
The American College of Obstetricians and Gynecologists estimates that up to 75 per cent of women with pelvic pain may have endometriosis along with up to 50 per cent of those with fertility problems.
How is endometriosis diagnosed?
Currently the only way to confirm endometriosis is through a surgical examination, usually keyhole surgery called a laparoscopy. Other tests and examinations may suggest you have endometriosis but only the surgery can produce a firm diagnosis.
Diagnosing endometriosis can be difficult because many of the symptoms can be caused by other conditions. There’s often a delay of years between first noticing symptoms and finally getting a correct diagnosis – in the US the average is reckoned to be 10 years. In the UK there’s an average delay of more than 7 years between first seeing a doctor and being diagnosed.
‘Diagnosis has had a big impact. Before I was chasing symptoms for years and never getting an answer, being told that maybe I was bringing on the symptoms myself.’– response in 2018 HealthUnlocked endometriosis survey
A discussion of your symptoms and a physical examination in which your doctor feels around your abdomen and pelvic area to detect abnormalities are usually the first steps. This will likely include an internal exam. The doctor may be able to feel cysts or scar tissue, but it’s often impossible to detect small areas of endometrial tissue.
Ultrasound scanning, which uses sound waves to create images of the inside of the body, can be used to help detect endometriosis. The ultrasound device can be either pressed against your abdomen or placed inside your vagina (known as transvaginal ultrasound). Often both will be done to build up the best picture of your reproductive organs and the area around them. Ultrasound can’t be used to diagnose endometriosis but can identify endometriomas, the cysts that come with the condition.
Sometimes an MRI scan may be used to gauge the extent of any deeply implanted endometrial tissue.
Suspicion of endometriosis can only be confirmed by surgery – a laparoscopy is the normal procedure. A thin tube with a tiny light and camera is inserted into your body through a small cut in your belly. With pictures sent to a video monitor, the surgeon can look around and see any endometrial tissue.
During the operation, done while you are asleep under anaesthetic, a small sample of tissue (a biopsy) can be taken for laboratory testing, or other surgical instruments can be inserted to destroy or cut away the endometrial tissue.
Often, when a laparoscopy is done to diagnose endometriosis, the surgeon will go on to treat any endometriosis found, removing cysts, implants, adhesions and scar tissue. You would, of course, have to give permission for this beforehand. If your endometriosis is advanced and involves other areas, such as the bowel, more extensive surgery may be needed later.
Endometriosis is often graded into one of four stages or types:
Stages are determined by things like where implants occur, how many there are, how big they are and how deeply they are embedded.
What causes endometriosis?
The cause of endometriosis isn’t understood. There are several theories and it’s likely a combination of factors causes the condition.
Suggestions for causes of endometriosis include:
- retrograde menstruation – where menstrual blood containing endometrial cells runs back through the fallopian tubes instead of out through the vagina. This ‘retrograde’ blood gets into the pelvic cavity and the endometrial cells in it stick to surfaces and begin to grow.
- an immune system problem – your immune system is your body’s defence system against illness and infection and should prevent growth of endometrial tissue outside the womb. It has been suggested that an immune problem allows endometriosis to occur, but this is not proven
- genetics – the condition is known to run in families
- cell spread – this suggests endometrial cells move around the body in the bloodstream or through the lymphatic system, part of your immune system
- cell transformation – this suggests that some types of cell change into endometrial cells because of the action of hormones or immune responses
- surgical spread – it’s possible during an operation such as a caesarean (C-section) for cells from the womb lining to be transferred elsewhere
Though the cause is not known, there are things that increase your risk of endometriosis.
- never having given birth
- starting periods before age 12
- having a short menstrual cycle — for example, fewer than 27 days
- having periods that last seven days or more.
- having one or more relatives (especially mother, aunt or sister) with endometriosis
- having any condition that interferes with normal menstrual flow
What are the effects of endometriosis?
Endometriosis can affect you in many ways. Studies have found that women with endometriosis have poorer scores on standard ‘quality of life’ assessments than those without the condition.
Endo commonly produces long-lasting (chronic) pain that can be debilitating. It can stop you doing everyday tasks, interfere with work and family life and cause you to pull out of social activities.
The condition typically brings feelings of fatigue, exhaustion or lack of energy that can further limit your daily activities.
‘Sleep as much as you feel you need to. Try to exercise little and often – gentle exercise several times a week helps’– response in 2018 HealthUnlocked endometriosis survey
Women with endometriosis commonly have problems in their sex lives. Apart from often feeling exhausted, sex can become painful and anxiety about pain can make matters worse. The anxiety leads to tension which can increase pain in intercourse, lead you to avoid sex and put a strain on your most intimate relationships.
Endometriosis can cause infertility or difficulty becoming pregnant, another source of anxiety and something that can also cause relationship problems.
The daily difficulties that can come with endometriosis can lead to feelings of isolation, vulnerability, low mood and even depression.
How is endometriosis treated?
Endometriosis treatments include painkillers, taking hormones, and surgery, along with treatments to help fertility if necessary. The treatments can’t cure the condition but can ease symptoms so they don’t interfere with your life.
With very mild endometriosis some people decide not to have treatment immediately, but to wait to see if the condition gets worse. It does sometimes improve without treatment and usually goes away when you reach the menopause.
What treatments are suitable for you depends on things like your age, whether you want children, the severity of your endometriosis and the severity of your symptoms. You should discuss all the treatment options, including any risks, with your doctor.
The main treatment options are:
Taking painkillers, such as ibuprofen or paracetamol.
Hormone treatments. This includes the combined contraceptive pill; progesterone and progestin taken by pill, injection, or IUD; gonadotropin-releasing hormone (GnRH) agonists taken by injection or nasal spray; progestogen tablets; and sometimes antiprogestogens. Most hormone treatment gives lighter, shorter and more regular periods or stops periods altogether and many women see a reduction in pain. Some hormones slow the growth of endometrial tissue.
Surgery to remove endometrial implants and cysts, as well as adhesions and scar tissue that can contribute to causing pain. This is normally done as a laparoscopy, also the usual operation for diagnosis. This surgery can bring significant and lasting pain relief. It can also improve some women’s chances of getting pregnant if they are trying for a baby. But it can’t guarantee that the endometriosis won’t come back over time. Further surgical options include removal of the womb (a hysterectomy) and other reproductive organs, such as the ovaries and fallopian tubes. This can for many women end the pain of endometriosis, but again is not guaranteed to do so. Having your womb or other reproductive organs removed is a major decision that carries risks alongside any benefits.
Women with endometriosis who have difficulty getting pregnant may be offered in vitro fertilisation (IVF). While this is often successful, overall women with endometriosis tend to have a lower chance of getting pregnant with IVF than women without the condition.
Living with endometriosis
There’s no set way to live with endometriosis – it affects different women in different ways and to different degrees so any lifestyle changes that might help are largely a matter of finding what works for you.
As with any long-term condition, it’s important to keep yourself as fit and well as possible with a healthy diet, regular exercise and proper sleep. Keeping physically well will help you cope better with the condition, help you fend off infections and boost your mental wellbeing.
There are numerous endometriosis diets and recipe books, although there’s little good scientific evidence that any one special diet can help endometriosis or its symptoms; but this is an area of research. Regardless of the limited formal evidence, many women have found changes to their diet help manage the condition.
Some foods, such as red meat, alcohol and caffeine, can increase levels of estrogen (oestrogen), the hormone that makes your womb lining – and endometrial implants – thicken each month. Many people find that cutting down on these helps. Going gluten-free and cutting down dairy products can ease symptoms in some people. Many advise avoiding processed foods, which often have a range of additives including unhealthy fats and sugars that can exacerbate inflammation. Switching to fresh foods can improve symptoms for some.
‘Eat right, get lots of rest, drink lots of water. Exercise can help with pain’– response in 2018 HealthUnlocked endometriosis survey
There is evidence that a high-fiber diet with lots of fruit, vegetables and whole grains, can lower estrogen levels. You also get antioxidants in these foods, which might help fight inflammation. Concern about synthetic hormones in pesticides used in farming leads some people to choose fresh organic produce.
There’s some evidence that omega-3 fats (from oily fish), which have anti-inflammatory properties, can ease period pain and many women with endometriosis say a diet rich in omega-3 helps them.
Finding dietary changes that help you may be a matter of experimenting – there’s a wide range of books and advice online about eating with endometriosis.
According to guidelines, healthy adults should do at least 150 minutes of moderate exercise each week. Regular exercise not only keeps you physically well and improves your mood – it also reduces estrogen levels and many women say it helps ease their symptoms.
What you can do will depend on your circumstances and your preferences – and some types of exercise might not be appropriate for you. But in general, any activity is better than none and it doesn’t necessarily mean going to a gym. All sorts of things count as exercise, from walking or climbing stairs, to cycling, swimming, yoga, or dancing. And if you play a team sport or join a club you get the benefit of social time with other players.
Exercise, with a balanced diet, can also help keep you at a healthy weight. Many women with endometriosis report gaining weight, though weight gain is not formally considered a feature of the illness. Regular exercise will also help you keep a healthy sleep pattern.
Help with pain
Apart from medication, there are various techniques and types of complementary therapy that a lot of women find helpful in easing pain. Things like acupuncture, massage, meditation, aromatherapy, herbal therapy and some sorts of physiotherapy can all help some people. Bear in mind that some therapies have little or no formal evidence for how well they work and be wary of any claim than an alternative treatment can be used instead of your medical treatment.
You should discuss with your doctor any supplements or herbal medicines you want to take, especially if you are already on medication.
Endometriosis can be a gruelling illness, sometimes producing chronic pain for long periods, leaving you tired and struggling to get through the days. Along with the physical symptoms, it can be hard to deal with emotionally. Studies have shown that women with endometriosis are prone to anxiety, depression and other psychiatric disorders.
There’s lots you can do for your mental wellbeing. Keeping up activities you enjoy and staying active in your social network will be a great help, even if it seems hard at times. Talking honestly about your endometriosis with family and friends can help them understand better when you are unwell or if you change or cancel arrangements at short notice.
‘Join a group of people who have similar health issues. Talk to whoever listens to you. Rest when you can. Don’t worry too much, stress will not help pain. Be kind to yourself’– response in 2018 HealthUnlocked endometriosis survey
It’s normal to worry about some things, and everyone feels down from time to time. But if you find yourself constantly feeling anxious or you have a low mood for days on end, you should see your GP who can make sure you have support or treatment if you need it.
Many women find that one of the greatest sources of support, information and advice is other women with endometriosis. You can find many sources of support online. Most big endometriosis support organisations have online communities where you can talk to others with the illness and there are numerous smaller forums, Facebook groups, and so forth. There are also local support groups where you can meet others face-to-face.
‘Join a support group – learning from people who also have this condition has been invaluable for me!’– response in 2018 HealthUnlocked endometriosis survey
Your healthcare team might be able to recommend a local group you could join. Endometriosis UK lists local support groups across the UK and there are groups in cities and towns across the US.
Main resources consulted in the preparation of this information
All sources mentioned here were accessed during March 2018