Endometriosis symptoms and keeping a symptom diary

Endometriosis can cause period pain that gets in the way of daily life. It can also cause pain outside your period, and bowel or bladder symptoms. A symptom diary can help you describe when these happen and how they affect you.

With endometriosis, tissue similar to the lining of the womb grows in other parts of the body, often in the pelvis. It can cause inflammation and scarring. The World Health Organization calls endometriosis a long-term condition.

Pain and other symptoms to note

The symptoms of endometriosis can include:

• Period pain that stops you doing your usual activities.
• Pain in the lower tummy or back, including outside your period.
• Pain when peeing or pooing.
• Pain during or after sex.
• Heavy periods and feeling very tired.
• Trouble getting pregnant, if you are trying for a baby.

You can ask for a check for pain whether or not you’re trying to get pregnant. If bleeding is part of the problem, heavy periods and what to note can help you describe it.

Symptoms vary, and some people have endometriosis without any symptoms. A symptom list can’t diagnose it, and neither can a diary. Diagnosis is based on your history and may include examinations and tests. At the appointment, describe what you have been through, using any notes you already have.

Turning a symptom into a diary entry

A notebook, a document or a phone note will do. MedlinePlus suggests describing your symptoms, when and where they happen, how long you’ve had them and what has changed. “Pain was bad” is a good start. If you can, add a detail you will remember later: “Had to stop walking and sit down.”

These prompts are based on the symptoms RCOG lists and on MedlinePlus’s advice for appointments. Use the ones that fit each entry.

Timing and place: note the date, where it hurt, how long it lasted and whether you were bleeding. Include pain outside your period. If you aren’t sure whether it was linked to a period, write that next to the entry.

Bowel and bladder symptoms: describe any pain when peeing or pooing, and any changes you noticed. Write what happened. You don’t need to work out which organ caused it.

Pain with sex: if this applies, note whether it happened during sex or afterwards. Use words you’re comfortable sharing.

Effect on your day: write down what you stopped, missed or found hard at work, school or home because of symptoms. Include things you managed, but only with difficulty.

What you tried: name any medicines or other things you tried and whether they helped. Keep a separate list of your medicines and supplements to bring along.

If you skip a day, just leave it blank. A date you recall from memory can stay approximate.

Here is a made-up example entry:

Tuesday, date not recorded. Period bleeding today. Cramping across my lower tummy and an ache in my lower back. Pooing hurt this morning. No pain when peeing. Left class early because I couldn’t concentrate. A warm shower helped for a short while. I want to ask about pain that also happens between periods.

Your own entries can be shorter. When you get ready for the appointment, you can turn them into an opening sentence and a few questions. Preparing notes for a healthcare appointment shows how.

Ruva keeps your symptom notes in one place. Its doctor summary turns them into a one-page PDF you can share. It doesn’t diagnose any condition. A paper note works well too.

Why diagnosis can take time

Endometriosis symptoms can be like those of adenomyosis, fibroids, pelvic inflammatory disease and irritable bowel syndrome. Several tests may be needed. So an earlier appointment about bowel symptoms may matter when you talk about painful periods. Tell the GP about both.

Getting care can also be hard. The WHO describes limited access to diagnosis and treatment in many places. It also describes the harm done when period pain is brushed off or treated as something to put up with. These delays are no reason to wait before asking for help.

Add earlier appointments and any treatments you’ve tried to your notes. If you don’t know the dates, mark them as approximate. “I first asked about this around last winter” gives the clinician a sense of timing. It also makes clear what you can and can’t remember.

Examinations, scans and laparoscopy

A GP will ask about your symptoms and whether close relatives have had endometriosis. They may offer an examination, arrange tests or refer you to a gynaecologist. The NHS lists ultrasound, MRI and laparoscopy as possible next tests.

An internal examination needs your consent. You should be offered a chaperone, and you can ask for the examination to stop, as RCOG explains. Talk about any worries beforehand. If that feels hard to say out loud, write them down.

An ultrasound may show ovarian cysts or other signs of endometriosis. An MRI can help check for more widespread disease. A normal ultrasound or MRI result does not rule out endometriosis. If your symptoms continue, they still need to be talked about, even when a scan is reported as normal.

Laparoscopy is keyhole surgery that uses a camera to look inside the tummy (abdomen). It can be used to diagnose and treat endometriosis. A diary can’t replace it. You don’t always need surgery before treatment can start. The WHO describes treatment based on a clinical assessment and imaging. Ask what each test would help find out. Also ask what would happen next if it didn’t explain your symptoms.

Getting care and following up

See a GP if you think you may have endometriosis, your symptoms affect your life, or treatment hasn’t helped. For more on changes to raise at an appointment, see period pain and when to seek care.

If you have pelvic pain and could be pregnant, get urgent advice from NHS 111 in England, or from local urgent care. Some pelvic pain needs emergency care: pain that is severe or getting worse, or pelvic pain with faintness, trouble breathing or heavy vaginal bleeding. Call 999 in the UK or your local emergency number. See the NHS pelvic pain warning signs.

At a routine appointment, ask how you will get your results and who to contact if symptoms continue. The NHS appointment guide suggests checking the follow-up plan. Write the answers next to your questions so you have them when you need them.