Endometriosis2

Overview

Endometriosis (say: en-doh-mee-tree-oh-sis) is a long-term condition where tissue that looks and acts like the lining of the womb grows in other places in the body. This tissue is most often found in the pelvis — around the womb, ovaries, bowel and bladder. Each month, this tissue thickens and bleeds in response to your hormones, just like a period. But because the blood has no way to leave the body, it can cause swelling, scars, sticky patches (called adhesions) and a lot of pain. Endometriosis is not an infection, and it is not catching. It is a real medical condition, and the pain you feel is real.

Yes, it is common. Around 1 in 10 women and girls of reproductive age have endometriosis. Despite this, it is often missed or mistaken for ordinary period pain, which is why it can take years to be diagnosed.

Endometriosis is mostly found in women and girls from the start of their periods until after menopause. It can affect teenagers, and it can still cause problems in later life, especially if you take hormone replacement therapy (HRT). Rarely, it is found in people who have not had a period, and in a small number of men. Anyone with pelvic pain that does not go away deserves to be taken seriously, whoever they are.

Symptoms

Common symptoms

• Period pain that is severe enough to stop your normal activities and does not get better with ordinary pain relief
• Pain in the lower tummy (pelvis) or lower back, which may be there all month or get worse around your period
• Pain during or after sex
• Pain when you poo or pee, especially during your period
• Heavy periods, or bleeding between periods
• Tiredness and low energy that does not match how much you have done
• Bloating and a swollen tummy (sometimes called 'endo belly')
• Feeling sick, or changes in your bowels such as diarrhoea or constipation around your period
• Trouble getting pregnant

Symptoms in children

• Period pain in teenagers that keeps them off school or college, or stops them joining in with sport and friends
• Periods that start normally but become very painful over time
• Pain in the tummy that comes and goes and is hard to explain
• Heavy or irregular bleeding in the teenage years
• Tiredness, low mood or feeling unwell around the time of periods
• Sometimes symptoms overlap with other causes of pelvic pain in young people, so a careful review by a doctor is important

Symptoms in older adults

• Endometriosis can continue after menopause, particularly if you take HRT, because the condition depends on hormones
• Pelvic pain, pain during sex, or pain when opening the bowels that is new or getting worse
• Scar tissue and sticky patches (adhesions) from years of endometriosis can cause ongoing pain
• New pelvic pain after menopause should always be checked, because there can be other causes that need looking at
• Bladder and bowel symptoms may become more noticeable with age

Causes

Main causes

• Retrograde menstruation: period blood flows backwards through the fallopian tubes into the pelvis instead of leaving the body, and cells from the womb lining settle there
• Cells outside the womb changing into womb-lining-like tissue — this may happen because of the body's own repair processes
• Immune system differences: the body's defence system may not clear away these stray cells as it normally would
• Cells spreading through the blood or lymph system to other parts of the body (this is uncommon)
• Genetics: endometriosis often runs in families, and researchers have found several genes that may play a part
• Surgery, such as a caesarean section, can occasionally move womb-lining cells to a scar, though this is one of the rarer routes

Risk factors

• A mother, sister or daughter with endometriosis
• Starting periods at a young age
• Short monthly cycles (for example, 27 days or fewer)
• Periods that last more than 7 days
• Heavy periods
• Never having been pregnant
• Some differences in the shape of the womb or reproductive system
• Having another condition that causes ongoing pain or inflammation

When to see a doctor

See a doctor urgently if:

• Pain that is getting worse quickly, or that your usual pain relief no longer helps
• Very heavy bleeding, bleeding between periods, or bleeding after sex
• Pain when you pass urine or poo that is new or getting worse
• A new lump or swelling in your tummy
• Pain that is stopping you eating, sleeping or going to work or school

Book a routine appointment if:

• Period pain that regularly stops you doing normal things, even if you have had it for years
• Pain during or after sex
• Heavy periods, or periods that last longer than 7 days
• Tiredness, bloating or bowel changes that show up with your period
• You have been trying for a baby for a year without success (or 6 months if you are over 35)
• A close relative has endometriosis and you are worried about your own symptoms

Diagnosis

There is no simple blood test for endometriosis. Your doctor will start by listening to your symptoms and asking about your periods, pain, bowels, bladder and family history. They may offer an internal pelvic examination to feel for tender areas, lumps or cysts. Imaging scans can help, but endometriosis does not always show up on them. The only way to be certain is a small operation called a laparoscopy, where a doctor looks inside the pelvis with a tiny camera. However, you do not always need this: if your symptoms and scans point clearly to endometriosis, treatment can often start without it.

Tests that may be done

• A detailed talk about your symptoms, periods and family history
• A symptom and period diary you have kept yourself
• A pelvic examination, where a doctor gently feels inside the vagina and lower tummy
• An ultrasound scan, usually done inside the vagina, to look for cysts or other causes of pain
• An MRI scan in some cases, to look at deeper areas of endometriosis
• A laparoscopy — a keyhole operation under general anaesthetic — which can confirm the diagnosis and remove tissue at the same time
• Blood tests or urine tests to rule out other conditions, such as infection or pregnancy
• A referral to a gynaecologist (a doctor who specialises in women's reproductive health)

What to expect at your appointment

The process can take time, and that can feel frustrating. Bring your symptom diary, a list of questions and, if it helps, a friend or family member. Ask what your doctor thinks is going on, what the next step is, and when you should come back if things do not improve. If you feel you are not being heard, it is completely reasonable to ask for a second opinion or a referral. You are not being difficult — you are looking after your health.

Treatment

There is no single cure for endometriosis, but there are many ways to reduce pain and improve your day-to-day life. Treatment is chosen together with you, based on how bad your symptoms are, where the tissue is, whether you want to get pregnant, and what matters most to you. Often a combination of approaches works best, and it is normal to try a few things before finding what helps.

Self-care at home

• Use a heat pack or warm bath for pelvic and back pain
• Try gentle, regular movement such as walking, swimming or stretching — it can ease pain and lift mood
• Over-the-counter pain relief from your pharmacist can help; ask them what is suitable for you
• Some people find a TENS machine (a small device that sends gentle electrical pulses) helpful for pain
• Keep a symptom and period diary so you can see patterns and track what helps
• Plan rest around your period, and be kind to yourself on the harder days
• Pelvic floor physiotherapy can help with pain and tension in the pelvic muscles
• Talk to your employer or school about adjustments, such as working from home or extra breaks on bad days

Medical treatments

Doctors treat endometriosis in two broad ways: easing the pain, and slowing or stopping the hormone cycle that makes the tissue grow and bleed. For pain, your doctor may suggest simple pain relievers, and sometimes medicines that target nerve pain. For hormones, options include combined hormonal methods (such as the pill, patch or ring), progestogen-only methods (such as an implant, injection or hormonal coil), and medicines that temporarily pause your periods. These can reduce bleeding and pain for many people, but they do not remove existing tissue and symptoms may return when you stop. If you are trying to get pregnant, some hormone treatments are not suitable, so tell your doctor about your plans. Your doctor or pharmacist can explain the benefits and possible side effects of each option so you can choose what suits you.

When is surgery considered?

Surgery may be offered if pain is not controlled by other treatments, if you have a large cyst on an ovary, or if endometriosis is affecting your bowel or bladder. The most common operation is a laparoscopy, where a specialist removes patches of endometriosis and any scar tissue. This can improve pain for many people, though it can come back over time. In some cases, surgery on the nerves that carry pelvic pain is considered. Removing the womb (hysterectomy) is sometimes discussed, usually as a last option and only when other treatments have not worked — it is important to know that it does not always cure endometriosis, and it means you cannot become pregnant. A specialist centre that deals with complex endometriosis can help you weigh up the risks and benefits.

Living with this condition

Endometriosis can be unpredictable, so a little planning helps. Many people find it useful to track their cycle and note which days tend to be harder, then arrange lighter tasks or rest around those days. Keep pain relief and a heat pack with you, and let the people around you know what support you might need. It is fine to say no to things when your body needs a break — that is not giving up, it is pacing yourself.

Lifestyle tips

• Build gentle movement into your week rather than saving it all for good days
• Protect your sleep — tiredness makes pain feel worse, and pain makes sleep harder
• Try relaxation, breathing exercises, mindfulness or gentle yoga to ease muscle tension
• Reduce or manage stress where you can, and ask for help rather than carrying everything
• Avoid heavy lifting or high-impact activity during flare-ups
• Stay connected with friends and family, even in small ways on low-energy days

Diet and exercise

There is no special endometriosis diet that cures the condition, but some people notice that certain foods affect their symptoms. Eating regular balanced meals, plenty of vegetables and fibre, and enough fluids can help with bloating and bowels. Some people find that cutting back on caffeine or alcohol, or eating less processed food, makes a difference — but this varies a lot from person to person. A dietitian can help if you want to try changes safely, and it is worth avoiding very restrictive diets. For exercise, aim for something you enjoy and can keep up: walking, swimming, cycling, dancing or pilates are all good choices. Start gently during a flare-up and build up when you feel able. Exercise will not cure endometriosis, but it can improve pain, sleep and mood.

Mental health and emotional wellbeing

Living with long-term pain is genuinely hard, and it is very common to feel anxious, low, frustrated or worn down. Being told your pain is normal when it is not can be upsetting, and it can shake your confidence. These feelings are understandable and they deserve support, not brushing aside. Talking therapies, support groups and counselling can all help. If you ever feel you cannot cope or have thoughts of harming yourself, please reach out straight away — contact your local crisis helpline or emergency services. You do not have to manage alone.

Prevention

There is currently no known way to prevent endometriosis. Because the exact cause is not fully understood, there is no proven step you can take to stop it starting. What you can do is act early: if period pain is affecting your life, speak to a doctor rather than waiting. Earlier help can mean earlier treatment and less impact on your daily life, work, study and fertility.

Vaccines

There is no vaccine for endometriosis.

Screening programmes

There is no screening test for endometriosis. It is found by investigating symptoms, so noticing and reporting your symptoms is the most important thing you can do.

Complications

If left untreated

• Ongoing pain that gets worse over time and affects work, study, sleep and relationships
• Scar tissue and sticky patches (adhesions) that can make organs stick together and cause pain
• Cysts on the ovaries (called endometriomas), which can be painful and sometimes need surgery
• Trouble getting pregnant — around a third to a half of people with endometriosis have some difficulty, though many conceive naturally or with help
• Endometriosis affecting the bowel or bladder, causing pain or changes in how they work
• Long-term tiredness and low mood
• Anxiety and low mood related to living with chronic pain

Long-term outlook

Endometriosis is a long-term condition, but it is not a life sentence, and most people find ways to feel better. Many benefit from a combination of pain relief, hormone treatment, physiotherapy or surgery, and symptoms often improve after menopause. Research into new treatments is ongoing. If you are struggling, keep talking to your doctor — there is usually another option to try, and help is worth asking for.

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