The journey to an endo diagnosis varies from person to person. Some people experience symptoms for a while before getting treatment while others see a GP straight away. Some people are diagnosed with endometriosis because their symptoms are severe, or they have difficulty getting pregnant, or they may have surgery or a scan for another condition and endometriosis is found. Whatever path you take, EndoZone is here to support you on your journey.  

Working out what's normal 

People with endometriosis often report that it 's difficult to know whether what you are experiencing is 'normal'. This is particularly the case if you have had symptoms from your first period or if other members of your family also experience significant pelvic symptoms. Society tends to normalise period pain, saying things like 'periods are meant to be painful’. This is a myth – period pain that stops you from doing normal activities like going to work or school is not normal. So how do you know what is normal and whether you need to follow up with a doctor? EndoZone can help – try our symptom checker tool and get tailored feedback on the symptoms you are experiencing.  

Finding support 

If you have endo, finding support is really important. This might be your partner, a friend, a parent, a trusted teacher or other Endo Warriors. Check out our Finding Support section for ideas for talking about endo with others. We are lucky in Australia to have some great Endometriosis Associations where you can get further information, attend events and meet others with endo and get support. Know that you are not alone as endo affects 1 in 9 women and those assigned female at birth. Chances are, when you start talking about your symptoms you will find other people are experiencing the same thing.  

Pelvic symptoms are complicated 

Some people have really painful periods or heavy bleeding. Others may not experience any pain but might have difficulty getting pregnant, or they might have had their endometriosis diagnosed while going for another surgery or scan. Endo can present with various symptoms like painful periods, chronic pelvic pain, bladder and bowel issues, bloating and fatigue. In fact, research has shown that people with chronic pelvic pain experience an average of 8 different symptoms. The problem with all these symptoms is that they overlap with many different conditions, such as IBS. So it can take time to unravel the underlying causes of these symptoms.  

Working with your doctor 

If you are experiencing multiple symptoms it can take a while to determine the underlying cause. It is worth booking longer or multiple appointments with your doctor so you have the time needed to explain your symptoms and outline what you have tried to manage them so far. The doctor will likely order a series of tests based on your symptoms and your circumstances. While it can be frustrating if you are getting a lot of different tests that seem to be inconclusive, it’s important that other conditions are ruled out. Remember, a negative test is a finding in itself. You may like to track your symptoms using a symptom tracking app like the Qendo app or use the EndoZone health report to help you prepare for your appointment.  

Feeling all the feels 

When you are going through the process of getting diagnosed it can feel a bit like a roller coaster ride. There are some highs and some lows. After they get their diagnosis, many people report feeling vindicated or happy that they know what the cause of their symptoms is, particularly if they have been experiencing symptoms for a long time. A diagnosis can help you explain your experiences to others as the condition has a name.  

What if I don’t get a diagnosis 

Just because you don’t get an endometriosis diagnosis doesn’t mean that you were making up your symptoms (although sometimes we can start doubting ourselves). You can continue to use EndoZone as the strategies suggested here are useful for managing symptoms like pelvic pain.  Alternatively, you can get a second opinion from a different doctor. Wherever you end up, it is important that you work with your health care team to setup a plan that works for you. Check out our handy guide to finding your health care team.