Endometriosis: signs worth discussing with a doctor

What endometriosis is

In endometriosis, tissue similar to the endometrium (the lining of the uterus) grows in places it shouldn't: on the ovaries, fallopian tubes, the lining of the pelvis, the bowel or bladder, and occasionally further away. This tissue responds to the hormones of your cycle, causing inflammation, pain and sometimes scar tissue that can stick organs together.

The World Health Organization estimates endometriosis affects around 10% of women and girls of reproductive age, about 190 million people worldwide. It can start with the first period and continue until menopause. The cause isn't fully understood.

Symptoms that are more than bad cramps

Period cramps are common. Pain that takes over your life isn't something you just have to put up with. Signs that are worth discussing with a doctor include:

• Severe period pain that stops you going to school, work or doing normal activities, or isn't helped by ordinary painkillers
• Pelvic pain at other times in your cycle, sometimes all month
• Pain during or after sex, often deep inside
• Pain when pooing or peeing during your period, or bowel symptoms like bloating, constipation or diarrhea that flare with your cycle
• [Heavy periods](/symptoms/heavy-periods), sometimes bleeding through to clothes
• Difficulty getting pregnant: the WHO notes that 25 to 50% of women with infertility have endometriosis
• Tiredness, low mood and anxiety, which often come with long-term pain

Symptoms don't always match how much endometriosis there is: some people with a lot have little pain, and some with a little have severe pain.

Why diagnosis takes so long

The WHO puts the average time to diagnosis at 4 to 12 years. There are several reasons: period pain is often normalized, symptoms overlap with conditions like IBS, scans can look normal, and the most definite diagnosis has traditionally needed keyhole surgery (laparoscopy). UK NICE guidance recommends that doctors consider endometriosis when people describe these symptoms, and that a normal scan doesn't rule it out.

How tracking can help

A clear record of when pain happens and how bad it is makes it much easier for a doctor to take it seriously and think about endometriosis. Try logging:

1. Your period dates and flow.
2. Pain each day on a 0 to 10 scale, and where it is.
3. Pain during sex, peeing or pooing.
4. What you took for pain and whether it helped.
5. Days you missed school, work or plans because of pain.
6. Mood and energy, because long-term pain affects both.

A PMS symptom diary layout works well for this. Two or three cycles of this gives you a clear story to bring to an appointment. Our guide to when period pain isn't normal can help you put it into words.

Treatment options

There's no cure yet, but treatments can help a lot. Options include anti-inflammatory painkillers such as ibuprofen or naproxen; hormonal treatments like the combined pill, progestogens or the hormonal IUS, which reduce or stop periods and often ease pain; other hormone medicines that lower estrogen for a time; and surgery to remove endometriosis tissue. If you want to get pregnant, a specialist can talk through fertility options. Pain management, physiotherapy and support for mood are part of good care too.

Endometriosis and your mood

Living with pain that others can't see, and waiting years to be believed, is hard. Low mood, anxiety and frustration are common, and they're a real part of the condition, not a separate failing. Support groups, talking therapy and a doctor who listens can make a difference. If your mood is affecting your life, say so; it's as important as the pain.

A record of pain and mood across your cycle

In Lulu you can log cramps and other symptoms as bunny drawings alongside your period and a one-tap mood. Over a few cycles you'll see how pain and mood line up with your phases. Lulu doesn't diagnose; it helps you show the pattern.

When to see a doctor