Tracking endometriosis pain in everyday life: what research and a diary show

Why endometriosis pain is so hard to pin down

The hot water bottle is ready before your period even starts. You cancel plans because you cannot tell how the day will go. Sometimes the pain also comes on days without bleeding, in the middle of work or in bed at night. Many people with endometriosis know weeks like these and still hear that strong period pain is just normal. Endometriosis pain is hard to pin down because it shows up differently for each person and can change over time. What it means for your daily life rarely shows on a single day. It only becomes visible over weeks and cycles, when you note when and how your body speaks up.

With endometriosis, tissue similar to the lining of the womb grows outside the womb. The European Society of Human Reproduction and Embryology, ESHRE for short, published a guideline with 109 recommendations on it in 2022. It names symptoms that should make doctors think of endometriosis. These include severe period pain, pelvic pain outside the period and deep pain during sex. Bowel or bladder symptoms that return with the cycle, and fatigue, belong on the list too.¹

The guideline is based on studies published up to the end of 2020 and on the consensus of a European expert group. It redraws the path to a diagnosis and questions keyhole surgery as the only gold standard. That puts more weight on what you can tell your doctor about your symptoms. Your own account is an important part of that path.¹

Not all pain is the same

An online survey from the University of Oxford shows how varied endometriosis pain can be. It ran on patient support websites in the UK and Ireland and reached 1,417 people whose endometriosis, by their own report, had been confirmed by surgery. They rated their worst pain of the past twelve months on a scale from 0 to 10. Period pain and pain outside the period had a median of 8, pain during sex and bowel movements 7, and pain when urinating 4.²

About 83 percent had all three main forms at once: period pain, pain during sex and pain outside the period. In 40 percent, a questionnaire pointed to nerve-like pain, and in another 35 percent to a mixed form. The questionnaire asks about burning, tingling or shooting sensations. The group with nerve-like pain reported stronger pain and more emotional strain.²

For your diary, this means that intensity tells only part of the story. Where the pain sits, when it comes and how it feels often says more. A note like cramping on the first day of the period is very different from burning on several days in between. Both can matter in a conversation with your doctor, because they raise different questions.

Fatigue and sleep are part of the picture

A case-control study from Switzerland, Germany and Austria compared 560 women with surgically and histologically confirmed endometriosis with 560 women without it. Frequent fatigue was reported by 50.7 percent of the women with endometriosis and by 22.4 percent of the comparison group. Fatigue was closely linked to sleep problems, and also to low mood, pain and stress at work.³

Age, time since diagnosis and the stage of the disease, on the other hand, made no measurable difference to fatigue. The study cannot show what is cause and what is effect. It does make clear that tiredness is not a side issue with endometriosis. It belongs in the conversation with your doctor, just like the pain does.³

How mood and pain are connected

A systematic review from King's College London analysed 27 studies with a total of 5,419 women with endometriosis. Anxiety and catastrophising were most consistently linked to stronger pain. Catastrophising means that your thoughts keep circling around the pain and it starts to feel overwhelming. Low mood, anxiety and stress went along with a lower quality of life.⁴

Another review with a meta-analysis from the UK brought together 34 papers. In the pooled data, 31.8 percent of women with endometriosis had symptoms of anxiety, and 54.9 percent reported pain during sex. The research team stresses that many of the underlying studies were small and looked at only one point in time.⁵

Links like these are not about blame. They show that body and feelings are in close conversation with endometriosis. The London review therefore sees anxiety, low mood and catastrophising as possible starting points for treatment. Psychological support can be one building block that you can raise with your doctor.⁴

What you can note in your diary

A symptom diary does not have to be complicated. It helps most when you regularly note what you notice, on good days too. The points below draw on what the guideline and the studies describe.

What you can note

• The intensity of the pain, always on the same scale.
• Where the pain sits and how it feels, for example cramping, pulling, stabbing or burning.
• Whether it comes during your period or on the days in between.
• Pain during sex, bowel movements or urination, even if it takes some courage.
• Sleep, energy and mood, so that connections become visible.
• What helped you, for example warmth, rest or gentle movement.

What a diary can do and what it cannot

A diary does not make a diagnosis and does not replace an examination. But it can make the conversation with your doctor more concrete. Instead of a general impression, you bring a history: on which days the pain came, how strong it was and what came with it. These are exactly the symptoms the guideline names as a reason to think of endometriosis.¹

The studies have limits. The Oxford survey relies on self-reports and mostly reached people who use patient support websites. The case-control study asked questions only once and cannot prove causes. The results therefore cannot be transferred one to one to every person with endometriosis.^{2, 3}

• Severe period pain, pain outside the period, pain during sex, bowel or bladder symptoms and fatigue can fit endometriosis.¹
• Endometriosis pain can be cramping, but also burning or shooting.²
• Frequent fatigue was more than twice as common in women with endometriosis as in the comparison group.³
• Anxiety and circling thoughts are linked to stronger pain, without it being clear which came first.⁴
• A diary across several cycles makes patterns visible, while the medical assessment stays with your doctor.

In BodySeasons, you can log pain, bleeding, sleep, energy and mood in your symptom diary and see them side by side across several cycles. If a doctor has diagnosed your endometriosis, you can add it in your settings. Your guidance and tips then take it into account. BodySeasons is not a medical device and does not make diagnoses.