Deep Infiltrating Endometriosis

Overview

Deep infiltrating endometriosis (DIE) is a form of endometriosis. In endometriosis, tissue that looks and acts a bit like the lining of the womb grows outside the womb. In DIE, this tissue grows deeper into nearby organs and tissues, such as the bowel, bladder, or the ligaments that hold the womb in place. It is not cancer. It can cause long-lasting pain and other symptoms, but there are treatments and support.

Endometriosis overall is common, affecting about 1 in 10 people with a womb. Deep infiltrating endometriosis is less common than other forms, but it is an important cause of severe symptoms and is often under-recognised.

It can affect anyone with a womb, most often during the reproductive years. It can start in the teenage years and can occasionally continue or be found after menopause. It is not caused by anything you did.

Symptoms

Common symptoms

• Very painful periods that disrupt work, school, or daily life
• Heavy or long periods
• Ongoing pain in the lower tummy or pelvis
• Pain during or after sex
• Pain when opening the bowels or passing urine, especially around your period
• Bloating, constipation, or diarrhoea that comes and goes with your cycle
• Tiredness or low energy
• Lower back pain
• Trouble getting pregnant

Symptoms in children

• Teenagers may have severe period pain that keeps them off school.
• Period pain may not improve with usual pain relief from a doctor or pharmacist.
• They may have stomach or bowel symptoms that follow their cycle.
• Heavy or irregular periods can also be a sign to get checked.
• Young people can get endometriosis, so severe period pain should not be dismissed.

Symptoms in older adults

• DIE is usually found earlier in life, but symptoms can continue after menopause.
• Older adults may have ongoing pelvic pain, bowel or bladder symptoms, or pain during sex.
• New pelvic pain, new bowel or bladder symptoms, or any bleeding after menopause should always be checked.

Causes

Main causes

• The exact cause is not fully understood.
• One possible factor is menstrual blood flowing backwards through the fallopian tubes.
• The immune system and genetics may play a role.
• Cells outside the womb may change into endometriosis-like tissue.
• Hormones such as oestrogen affect the tissue and symptoms.
• In DIE, the tissue grows deep rather than staying on the surface.

Risk factors

• A family history of endometriosis
• Starting periods at an early age
• Short menstrual cycles or heavy periods
• Some differences in the shape of the womb or fallopian tubes
• Having symptoms for a long time before getting a diagnosis

When to see a doctor

See a doctor urgently if:

• Severe pelvic pain that is new or getting worse quickly
• A fever with pelvic pain or unusual discharge
• Bowel or bladder symptoms that stop you eating, drinking, or passing urine normally
• Very heavy bleeding with dizziness or weakness
• Pain that is uncontrolled and you cannot keep fluids down

Book a routine appointment if:

• Period pain that affects school, work, sleep, or daily life
• Pelvic pain that lasts for weeks or keeps coming back
• Pain during or after sex
• Bowel or bladder symptoms that happen around your period
• Heavy or irregular periods
• Trouble getting pregnant
• A family history of endometriosis and symptoms that concern you

Diagnosis

Your doctor will ask about your symptoms, periods, bowel and bladder habits, pain, and family history. They may do a pelvic exam. Imaging can help show deep endometriosis, and referral to a gynaecology or endometriosis specialist is common. Sometimes a keyhole operation called laparoscopy is used to confirm the diagnosis and treat it.

Tests that may be done

• A symptom diary showing pain, bleeding, and bowel or bladder patterns
• A pelvic exam
• An ultrasound scan, sometimes using a probe in the vagina or back passage
• An MRI scan, which uses magnets and radio waves to make detailed pictures
• Keyhole surgery (laparoscopy) with a small tissue sample (biopsy)
• Blood tests to check for other problems such as anaemia, though these do not diagnose DIE

What to expect at your appointment

Diagnosis can take time. Write down your symptoms, triggers, and how they affect daily life. Ask about referral to a specialist endometriosis centre if symptoms are severe or organs like the bowel or bladder are involved. You can bring someone with you and ask questions.

Treatment

There is no single cure, but treatment can reduce pain, improve daily life, and protect fertility where needed. Care often combines self-care, pain management, hormone-based treatment, physiotherapy, and sometimes surgery. The best plan depends on your symptoms, age, fertility goals, and which organs are involved. Ask your healthcare team to explain the options and side effects.

Self-care at home

• Use heat packs on your lower tummy or back for comfort.
• Try gentle movement such as walking, stretching, or yoga.
• Rest when you need to, and plan demanding days with breaks.
• Keep a symptom diary to spot patterns and share with your doctor.
• Aim for regular sleep.
• Prevent constipation with fibre, fluids, and gentle activity.
• Ask about pelvic floor physiotherapy if pelvic muscles feel tight or painful.
• Use relaxation or breathing exercises to help with pain and stress.
• Talk to your employer or school about simple adjustments when symptoms flare.

Medical treatments

Doctors may suggest pain-relief medicines suited to you, hormone-based treatments that reduce or stop periods and thin the endometriosis tissue, and referral to a pain clinic or pelvic physiotherapist. These can ease symptoms but do not remove deep tissue. Your clinician will discuss benefits, risks, side effects, and whether a treatment is suitable if you are trying to become pregnant. Never start or stop a medicine without advice.

When is surgery considered?

Surgery may be considered if pain is severe and other treatments have not helped, if DIE is affecting the bowel or bladder, if organs are blocked, or if fertility treatment is being planned. Excision, which means removing the deep tissue, is often done by an experienced specialist team. Surgery for DIE can be complex, so ask about specialist centres. Hysterectomy does not always cure endometriosis and is usually only considered after careful discussion.

Living with this condition

DIE can affect work, school, relationships, sleep, and mood. Plan rest after demanding days, use a symptom diary to spot patterns, and ask for practical adjustments. Keep regular contact with your healthcare team rather than coping alone.

Lifestyle tips

• Eat balanced meals at regular times.
• Move gently and regularly, within what feels comfortable.
• Protect your sleep routine.
• Find stress-reducing activities you enjoy.
• Avoid smoking, and limit alcohol.
• Ask about pelvic floor physiotherapy if it is available.
• Use heat and rest during flares.

Diet and exercise

No special diet has been proven to cure endometriosis. A balanced, Mediterranean-style way of eating with plenty of vegetables, fruit, whole grains, beans, and enough fluids may help general wellbeing and bowel habits. Gentle regular exercise can reduce pain and improve mood. If bloating or bowel symptoms are troublesome, ask for a referral to a dietitian.

Mental health and emotional wellbeing

Long-term pain and unpredictable symptoms can cause anxiety, low mood, frustration, and strain on relationships. This is common and not a sign of weakness. Tell your team how you feel; counselling, pain psychology, and support groups can help. If you have thoughts of harming yourself, call your local emergency number or a crisis support service right away.

Prevention

There is no known way to prevent endometriosis or DIE. Some lifestyle steps may support general health, but they do not reliably prevent the condition. Getting symptoms checked early can help you get support sooner.

Vaccines

There is no vaccine for endometriosis.

Screening programmes

There is no routine screening test for endometriosis or DIE. See your doctor if you have ongoing pelvic pain, very painful periods, or bowel or bladder symptoms that happen with your period.

Complications

If left untreated

• Long-term pelvic pain
• Bowel or bladder narrowing or blockage, which is uncommon but serious
• Scar tissue and adhesions that can bind organs together
• Ovarian cysts filled with old blood
• Fertility challenges
• Anaemia from heavy bleeding
• Anxiety, low mood, and strain on relationships
• Missing work, school, or social activities

Long-term outlook

DIE is a long-term condition, but it is not cancer. Many people find good relief with specialist care, and fertility support is available. Treatment can take trial and error, so keep asking for help and review your plan regularly.

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