Endometriosis symptoms and keeping a symptom diary

Endometriosis can cause period pain that interrupts daily life, pain outside your period, and bowel or bladder symptoms. A symptom diary can help you describe when these happen and how they affect you.

The condition involves tissue similar to the lining of the womb growing elsewhere in the body, often within the pelvis. It can cause inflammation and scarring. The World Health Organization describes endometriosis as a long-term condition.

Pain and other symptoms to record

The symptoms of endometriosis can include:

• Period pain that prevents 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 marked tiredness.
• Difficulty getting pregnant, if that is something you are trying to do.

You can seek assessment for pain whether or not you’re trying to conceive. If bleeding is part of the problem, heavy periods and what to record can help you describe it.

Symptoms vary, and some people have endometriosis without symptoms. Neither a symptom list nor a diary can diagnose it. Diagnosis involves your history and may include examinations and tests. Describe your own experiences at the appointment, using the notes you already have.

From a symptom to a diary entry

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

Here are prompts based on the symptoms recognised by RCOG and MedlinePlus’s appointment advice. Use whichever apply to that entry.

Timing and location: 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 symptoms were related to a period, write that beside the entry.

Bowel and bladder symptoms: describe pain with peeing or pooing and any changes you noticed. Write what happened without deciding which organ caused it.

Pain with sex: if relevant, note whether it occurred during or afterwards, using words you’re comfortable sharing.

Effect on your day: record what you stopped, missed or found difficult at work, school or home because of symptoms. Include activities you managed with difficulty too.

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

Leave a blank day as a gap in the record. A date recalled from memory can stay approximate.

For example, a fictional entry might read:

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 briefly. I want to ask about pain that also happens between periods.

Your own entry might be shorter. When you’re getting ready for the appointment, you can turn entries into an opening sentence and a few questions, as described in preparing notes for a healthcare appointment.

Veya is being built to keep symptom notes together, with a planned doctor-ready PDF summary. That feature isn’t available yet and will not diagnose a condition. A paper note can accompany an appointment now.

Why diagnosis can take time

Symptoms can overlap with those of adenomyosis, fibroids, pelvic inflammatory disease and irritable bowel syndrome, and several tests may be needed. An earlier appointment about bowel symptoms may therefore be relevant when you discuss painful periods. Tell the GP about both.

Access to care can also be a barrier. The WHO describes limited access to diagnosis and treatment in many settings, alongside the effects of period pain being dismissed or treated as something to tolerate. These delays are no reason to put off asking for help with your symptoms.

Include earlier appointments and any treatments you’ve tried in your notes. If you don’t have the dates, label them as approximate. “I first asked about this around last winter” gives the clinician a sense of timing while keeping clear what you can 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 describes ultrasound, MRI and laparoscopy as possible further investigations.

An internal examination needs your consent. You should be offered a chaperone and can ask for an examination to stop, as RCOG explains. Discuss any concerns beforehand, or put them in writing if speaking about them feels difficult.

Ultrasound may identify ovarian cysts or other signs of endometriosis; MRI can help assess more extensive disease. A normal ultrasound or MRI result does not rule out endometriosis. Continuing symptoms still need discussion, even when a scan is reported as normal.

Laparoscopy is keyhole surgery using a camera to look inside the abdomen. It can be used to diagnose and treat endometriosis, and a diary cannot replace it. Surgery is not always required before treatment can begin: the WHO describes treatment based on clinical assessment and imaging. Ask what each proposed test would help find out and what the next step would be if it did not explain your symptoms.

Arranging care and following up

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

Pelvic pain with possible pregnancy needs urgent advice from NHS 111 in England, or local urgent care. Severe or worsening pelvic pain, or pelvic pain with faintness, breathing difficulty or heavy vaginal bleeding, needs emergency care: 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 receive results and who to contact if symptoms continue. The NHS appointment guide recommends checking the follow-up plan. Write the answer beside your questions so you have it when you need it.