If you have, or suspect that you have, endometriosis, you may experience one or more of the following. You should always bear in mind that experiencing these symptoms does not mean that you have endo, but equally, not having one or most of these does not rule it out.

As a neuroinflammatory multisystem disease, endometriosis is complex, involving interactions between many of the systems within your body, so symptoms are not always going to be ‘textbook’.

Some of the most commonly reported symptoms of endometriosis include:

• Fatigue/lack of energy – this is an interesting one. Fatigue is reported by around 90-95% of people with endometriosis, but it’s not the biggest thing that many people see as a red flag. Fatigue is common in all kinds of chronic illness, and so would not lead to a diagnosis on its own. That being said, it’s one of the most debilitating symptoms and can greatly impact quality of life. No, we’re not just tired!
• Abdominal/pelvic pain – along with dysmenorrhea (painful periods), this is probably one of the symptoms we most often connect with endo, though unlike painful periods, it’s one that makes diagnosis tricky. There is a prevailing belief that pain has to be associated with your cycle, that it can’t occur everyday throughout your cycle and this can make diagnosis difficult/prolonged. It’s simply not true. Whilst pain may be elevated around your period, it can and does occur every day. It’s important to note here that whilst pain is frequently reported in cases of suspected endometriosis, you can have endo and not be in pain. Pain is also not directly associated with severity or stage of the disease.
• Painful periods (dysmenorrhea) – this refers specifically to the pain that is related to your cycle. For many endo warriors, the pain will progress in the few days running up to their period and taper off as their period progresses, usually peaking around the second day. This is similar to the usual presentation of period pain, but is likely to be much more painful than ‘normal’ period cramps. As with any other symptom though, this is not always the case – some of us have pain throughout the entire period and possibly after.
• Bloating – the dreaded endo-belly. This one is not only likely to be uncomfortable and potentially painful, but also wreaks havoc on our self-esteem. Primarily caused by inflammation and hormonal activity, it can also be triggered by certain foods or drinks. Many sufferers report embarrassment and issues with body image, and it can be particularly difficult for those struggling with infertility – looking and feeling 5 months pregnant is the last thing you want. It’s key to remember that whilst certain dietary and lifestyle changes may reduce swelling and inflammation, endo-belly is not the same as ‘weight gain’ and dangerous or extreme dieting is not the answer. Your overall health comes first.
• Abnormal periods or changes to your period – this isn’t always going to be a change – some women and girls struggle from their very first period. However, it’s hard to know what is and isn’t normal when we have no frame of reference. What makes this harder is the embarrassment that comes with talking about our periods when they are so new to us, and the tendency for us to be brought up believing that periods are painful and terrible experiences. Noticing changes is possibly an easier metric for some as your symptoms progress. Either way, there are some key characteristics of your period that may indicate endo;
  • Heavy bleeding – ‘heavy’ for one person may be ‘light’ to another so this is a tough one if your flow has always been heavy, but you certainly know if your periods gradually become heavier. There are also objective indications of what is ‘heavy’ enough to warrant concern, for instance, if you soak through a pad or tampon within an hour or two, this is likely to be a cause for concern. You may also pass large clots.
  • You may have spotting between periods, and pain around ovulation – this may feel like period cramps or could be a sharper more intense pain.
  • They last longer than is typical – usually more than 5-7 days that is typically expected (a normal cycle is generally somewhere around 3-7 days). Some people with endo do also experience shorter or less frequent periods.
  • They are irregular and unpredictable – this could be more than once a month or less than, and it may vary in flow from period to period. It may waver only slightly from the 21-35 day cycle length and be hard to spot, so tracking your periods is important in identifying irregularities.