Before your appointment

It’s important to prepare for appointments with your GP or specialist. Many people with endometriosis have found that preparing helped them stay calm and focused on describing the symptoms and the help they need. Here are some tips on preparing for appointments from endometriosis patients:

It’s a good idea to record your symptoms and their impact on your daily life. Did your symptoms affect your ability to carry out regular tasks such as going to school or work. It’s also completely understandable if your symptoms are affecting your mental health. Lots of people with endometriosis report having mental health struggles as well as their physical ones, not least because the pain can stop them from doing the things they need or want to do. You can read more about endometriosis and mental health here.

During your appointment

  • It’s a good idea to take notes. You can take a notebook and pen with you or ask if you can record the conversation on a dictaphone or your phone. This will allow you to go over what was discussed at your own pace and pick up on anything that wasn’t clear during the appointment. You can make a follow-up appointment if you want to go over these points again.
  • If you can, take a friend, family member or an advocate with you to lend their support and to prompt you if you get stuck or upset. You could also ask them to take notes during the appointment if they’re willing.
  • Try to keep a symptom diary in the run-up to your appointment. You can do this in a calendar or diary, or on a specific period-tracking app on your phone. This will help both you and your consultant to identify any patterns in your symptoms which is helpful in diagnosing any issues. You can also use the Endometriosis Cymru Symptom Tracker. Take this with you when you see your consultant.

What if your doctor doesn’t believe it’s endometriosis?

Historically it has taken a long time to get an endometriosis diagnosis. There are 3 main reasons for a delay in diagnosis:

  •  “It’s Normal”
    If your symptoms are mistaken for ‘normal period pain’ by you, your family or your doctor
  • “It’s Something Else”
    The symptoms of endometriosis are often mistaken for a long list of other conditions. Referral to specialists other than a gynaecologist or an endometriosis specialist lead to the longest delay in diagnosis.
  • “It’s Managed”
    Taking pain medication, oral contraceptives or anti-depressants will reduce your symptoms even if you’re not taking them for endometriosis. This can make getting a definite diagnosis more difficult.

Of course it is possible that you don’t have endometriosis but, if you are not satisfied with your doctor’s conclusion, you are entitled to ask to see a different GP. Most practices will have a GP who specialises in women’s health, so don’t be afraid to ask the receptionist or practice manager to arrange an appointment with them. If this option isn’t available, you could ask your GP to look at the Menstrual Wellbeing Toolkit created by the Royal College of GPs and Endometriosis UK which includes a special section on endometriosis and should help your GP to work out your next steps with you.