Symptoms vary between people. Endometriosis can be tricky to diagnose because the common symptoms associated with endo can overlap with other pelvic pain conditions.
Also, some people have a lot of symptoms whilst others may not experience any symptoms but can still have endometriosis. Period pain that stops you doing your usual activities (e.g. going to work, school or social activities) is not normal and should be investigated by a doctor.
Many people think that that periods are meant to be painful and you should put up with the pain, even though pain that stops you doing your normal activities is NOT normal. This is called pain normalisation. It is when you are told that the pain you are experiencing is ‘normal’, that is, it falls within the range of what is normal for most people and is nothing to worry about.
When is pain normalisation an issue?
When your gut feeling is telling you that the pain you are experiencing is not normal or not normal for you and your pain has changed enough for you to feel concerned.
Who normalises pain?
It could be a parent (‘get ready for school, this is normal and you should be able to cope. There is nothing wrong’), a sibling, a friend, a colleague or a health professional. Even you may normalise your pain: ‘I’m sure this is not as bad as I think’; ‘Other people seem to cope with period pain’. When someone normalises your pain it can make you feel like your symptoms are being dismissed, that you aren't being listened to or you can start to doubt your symptoms.
Because people are so different from one another there is a huge range of ‘normal’. Things for you to consider are:
- Is this pain new?
- Is this pain different to what was previously your normal?
- Can you manage the pain by trying the usual ‘first line measures’ for the pain that you have e.g. period pain?
- How much impact does the pain have on your life? (e.g. 1 or 2 days off school or work with some periods; or pain most days of the month.)
- Do you experience:
- Pain during or after sexual intercourse?
- Pain while passing urine (doing a wee)?
- Pain while passing a bowel motion (doing a poo)?
- If period pain causes you to stay in bed all day, it is not normal.
- Painful periods that cause tiredness, fatigue, and exhaustion.
Steps you can take:
- Check your symptoms and create an EndoZone Health Report and take it to your next appointment. If you go to the doctor with a clear summary of your pain and symptoms then this helps the doctor understand what is going on.
- Chart your pain and symptoms and how they change over time. You could use a diary or journal to do this. You could also jot down how the pain feels (see point below) and any questions that arise that you want to remember to ask. You may like to use the QENDO app to track your symptoms daily.
- Learn to describe your pain and symptoms: doctors usually need to know the qualities of your pain such as severity (how severe it is – score it out of 10 with 10 being the worst), frequency (how often you experience it), duration (how long the pain lasts for), type of pain (throbbing, burning) and where it is usually located or felt (e.g. left or right side, lower pelvis).
- Do your own research and learn more about what is normal (e.g. pain and symptoms caused by prostaglandins during periods that interfere with your daily activities) or are not normal for you (lots of school or work absences, pain during or after sexual intercourse, pain while passing urine or doing a poo, or the need to take lots of pain killers)
- Book a longer appointment. Pain is a complicated topic that can take some time to unravel. It is worthwhile booking a longer appointment or booking a series of appointments to ensure that you and your doctor have enough time to discuss all your concerns.
- Take someone to the appointment with you if needed (but make sure the doctor talks to you and not them)
- Make sure you tell the doctor or health professional what the impact of your pain is and what has changed for you – this really helps the doctor work out how different from ‘normal’ this is for you.
Pain related symptoms
Pain is a common symptom reported by people with endometriosis. From back pain to period pain EndoZone can help you learn more about the symptoms you may be experiencing.
Understanding pain in endometriosis
Disclaimer: This is an area of evolving knowledge with ongoing research, this is what is currently understood about the condition at this time.

Pain during sex
Many things can cause sex to be painful so it is important for you to understand what might be causing pain for you. You are not alone - painful sex is more common than you may think.

Painful periods
Period pain is the crampy pelvic pain that occurs with your menstrual period. Just over 70% of young people experience some pain with their period. For some it is very mild but for others it can be very severe. Period pain is usually worse the first couple of days of bleeding or when the bleeding is at its heaviest.

Back pain
Low back pain is one of the most commonly experienced symptoms in people with endometriosis. This is because the nerves that supply the uterus come from the same part of the nervous system as the nerves supplying the back, which means that these two body systems can communicate with each other.
Non-pain related symptoms
People with endo may experience many different symptoms (not just pain). A study has shown that on average people with period pain can experience an average of eight additional symptoms. Read more about the other symptoms that may be associated with endometriosis.

Heavy bleeding
Heavy bleeding can be a serious problem that can make you feel tired, dizzy or lightheaded, or even cause fatigue, exhaustion and fainting. Some people may have bleeding problems or a bleeding disorder that runs in the family that can cause heavier bleeding during periods.

Emotional wellbeing
Endometriosis is not just a physical disease. It can impact your physical and emotional quality of life. Everyone’s experience is different but endometriosis-related symptoms, delay in diagnosis, and different treatments may impact physical and emotional wellbeing.

Bladder symptoms
Due to the close proximity of the uterus and bladder, endometriosis can affect the urinary system. Endometriosis near the bladder can lead to changes to how often we urinate and can make urination painful.

Bowel symptoms
The gastrointestinal tract includes all the body parts between our mouth and our anus. Endo lesions can grow in the bowel walls and can create changes in the way our bowel functions, which can sometimes feel quite painful.

Infertility
Many people with endometriosis conceive and have their families without difficulty when they are ready. Some may struggle to conceive and require a little extra help with different fertility options.

Fatigue
People with endometriosis-related fatigue describe it as feeling exhausted or worn out. Endometriosis-related fatigue is often associated with other symptoms, including pain, anxiety, stress and irregular bleeding.