How to speak to your doctor about endometriosis

This article was medically reviewed by Andrew Horne, Professor of Gynaecology and Reproductive Sciences at Edinburgh University's MRC Centre for Reproductive Health.

If you think you might be suffering from the symptoms of endometriosis, it’s important you visit your doctor to secure a diagnosis and discuss treatment options. It can be difficult to know exactly what to say and what information they might need, so we have put together a prompt below, that you can take in for your appointment. 

The goal is to establish a conversation with your healthcare provider (GP, gynaecologist, consultant, or specialist) about your concerns with your menstrual health. One reason for the delay in endometriosis diagnosis is that your doctors will be looking for persistent and long-term symptoms. Try to gather at least three months of data (three periods). It is important that you are knowledgeable about your cycle, log your symptoms, and advocate for yourself to help make the most from your appointment.  

Some information can help assist your doctor to make a referral to a specialist. This includes: 

• Pain details:

Keeping a pain diary can help you track when you have pain, where it is located, how bad it is, and how certain activities increase or decrease the pain. It can also give your doctor valuable insight into any progress you have made when they begin your treatment plan. 

• Impact of symptoms on daily activities: 

Listing how your symptoms affect your quality of life is important for your doctor to understand how intrusive and impactful they are. Do your symptoms cause you to experience poor sleep? Have you felt changes in your mental health, such as anxiety, isolation, or depression? Do your symptoms prevent you from exercising or working? Do you cancel appointments or social events due to these symptoms? Do you feel that it affects your intimacy and relationships?  

• Estimate on how much blood is lost during your period: 

Heavy menstrual bleeding, can be an indicator of menstrual problems. Heavy bleeding can be changing pads or tampons every 1-2 hours, using more than 20 pads/tampons per cycle, passing clots larger than 2.5 cm, bleeding through clothing, or having periods that last more than seven days. 

• What helps your symptoms? 

If you regularly require medicine, supplements, or other treatments to assist with symptoms, list them out for your doctor, including how often you take them, and which are the most and least effective.  

By working together with your doctor, you can create a medical and treatment plan that is personalised for your symptoms and preferences moving forward. Don’t be afraid to ask for a second, third, or even fifth opinion. Some people recommend bringing a family member or friend that can help emphasize the importance of your symptoms to the physician. If you are uncomfortable with traditional treatment routes such as hormonal therapy, bring this up to your doctor and ask for alternative strategies that help other people. Make sure your requests for tests, referrals, and surgeries are all documented by your doctor. If they are denied, ask that the conversation and their reasoning for it are listed in your patient record.  

Self-advocacy and knowledge about your symptoms and experience is critical at this stage. Your personal circumstances and past experiences should guide your decision-making for treatment options that best suit your lifestyle and needs.  

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