Medical Gaslighting and Endometriosis: What to Say and Do

Quick answer: what is medical gaslighting in endometriosis?

Medical gaslighting is a common name for when a health professional brushes off your symptoms. You may hear that severe period pain is normal, that it is stress, or that nothing is wrong because a test was clear. It is not a formal medical term.

With endometriosis, this matters because the pain is often treated as normal. In many countries, the public, families, and most health and care workers are not aware that the chronic pelvic pain of endometriosis is not normal. The average time to diagnosis is between 4 and 12 years.

If period pain stops you from doing your normal activities, get medical advice. You can ask for a second opinion or a referral if you feel your symptoms are not being taken seriously.

Why endometriosis pain gets dismissed

Several things make diagnosis slow:

• The symptoms vary a lot and overlap with other conditions, so health workers may not easily recognise endometriosis.
• Pelvic pain is often seen as a normal part of periods.
• Access to early diagnosis is limited in many places.

It can take a long time to diagnose endometriosis. Its symptoms can be like those of other conditions, such as irritable bowel syndrome (IBS) and pelvic inflammatory disease.

Research on pain treatment shows a wider pattern. In a 2008 study of adults with sudden stomach pain in a US emergency department, women waited longer than men for pain relief. The median wait was 65 minutes for women and 49 minutes for men. Women were also less likely to get opioid pain relief, even with similar pain scores. Gender bias was a possible explanation.

Phrases that can signal dismissal

These phrases do not always mean a doctor is dismissing you. They are worth questioning if you hear them without a proper assessment.

"Periods are supposed to hurt"

Some period pain is common. Period pain that stops you from doing your normal activities is a symptom of endometriosis. Endometriosis period pain often gets worse over time. Read how the two compare in Endometriosis Pain vs. Normal Period Pain.

"Your scan was normal, so it is not endometriosis"

A normal scan does not rule endometriosis out. A transvaginal ultrasound is the best test for finding endometriosis, and you can have it even if a pelvic exam was normal, because lesions can be small or in places a pelvic exam cannot reach. The only way to confirm endometriosis is with surgery, called a diagnostic laparoscopy. Doctors can also make a clinical diagnosis from symptoms and imaging, and surgery is not always needed before treatment starts.

"It is probably stress"

Stress and low mood can make pain harder to cope with. Low mood and anxiety and depression and anxiety are among the effects of endometriosis. Low mood can be a result of long-term pain, and it is not a reason to stop looking for a physical cause.

"You are too young for endometriosis"

Endometriosis is commonly diagnosed from when periods start through to menopause. It has also been found in teens.

What to say at your appointment

Short, clear sentences help in a short appointment. You can adapt these:

• Describe the impact. "This pain stops me from going to work for two days every month."
• Say what you have tried. "I take ibuprofen at the dose on the pack and it does not help. Is that expected?"
• Ask what has been ruled out. "Which conditions have we checked for, and which are still possible?"
• Ask for a plan. "What is the next step if this treatment does not work?"
• Ask for a referral. "I would like a referral to a gynaecologist. Is there one who specialises in endometriosis?"
• Ask for your notes to show the request. "Please write in my notes that I asked for a referral, and the reason if the answer is no."

Share as much information as you can at your first appointment, and ask whether the GP knows a specialist in endometriosis if they refer you. Your doctor may want to examine your tummy, and possibly internally. If you are worried about this, tell them.

Bring a record of your symptoms

Keep a pain and symptom diary so you remember the details. A careful history of pain, bleeding, and other symptoms can help with diagnosis. For each episode of pain, note:

• The date, and where you were in your cycle
• Where the pain was, and how bad it was on a scale from 0 to 10
• What it felt like, for example cramping, stabbing, burning, or aching
• Other symptoms, such as heavy bleeding, bowel or bladder pain, or pain during sex
• What you took, and whether it helped
• What the pain stopped you from doing

Two or three cycles of records make patterns easier to see. The Endolog symptom tracker app lets you log pain by body location alongside your cycle and export a report for your appointment. Read more in The Pain Diary That Helps Your Doctor. To fit your symptoms and questions on one page, print the free doctor appointment sheet.

Bring someone with you

A partner, friend, or family member can take notes, remind you of your questions, and describe what they see on your worst days. This is often easier than remembering everything yourself when you are in pain.

If you still feel dismissed

You have options:

• See another doctor. If your practice has more than one GP, you can ask to see another GP there.
• Ask for a second opinion. You do not have a legal right to a second opinion, but a health professional will rarely refuse to refer you for one.
• Ask about a specialist service. If treatment is not working or symptoms are very severe, you may be referred to a specialist endometriosis service.

Read more in Endometriosis Specialist Referral and How to Get Diagnosed With Endometriosis.

The emotional toll

Being told your pain is not real can make you doubt yourself, dread appointments, and put off asking for help. The normalisation and stigma of endometriosis pain harm mental health and well-being. If you feel low most days, tell your doctor. Support groups and charities, such as Endometriosis UK, can also help.

FAQ: medical gaslighting and endometriosis

Is severe period pain normal?

No. Some period pain is common. Period pain that stops you from doing your normal activities is a reason to see a doctor.

Can a doctor rule out endometriosis with a normal ultrasound?

No. Endometriosis lesions can be small, and the only way to confirm endometriosis is with surgery. Doctors can also diagnose it from symptoms and imaging.

Can I ask to see a different doctor?

Yes. You can ask to see another GP in your practice, or ask for a referral for a second opinion.

What should I bring to my appointment?

Bring a record of your symptoms over two or three cycles, a list of treatments you have tried, and a short list of questions. See What to Bring to Your Gynecologist Appointment.

Related articles

• 20 Symptoms of Endometriosis and What the Pain Feels Like
• How to Get Diagnosed With Endometriosis: Tests and Referral
• The Pain Diary That Helps Your Doctor
• Endometriosis Specialist Referral