It's fair to say that endometriosis is a complex disease. It's said to affect around one in 10 women of childbearing age in the UK, yet little is known about its causes, and unfortunately, there's no cure. Despite how common it is, it's an incredibly difficult condition to diagnose. This is because many of the symptoms found in patients with endometriosis can also point towards a number of other conditions — one of the most notable being irritable bowel syndrome — as well as patients having more than one condition that interlink. In addition to this, there is little research in the field, which subsequently draws theories about the condition rather than conclusions.
It's also important to note that with endometriosis, the level of symptoms doesn't equal the extent or severity of the condition. Some people have severe endometriosis with very few symptoms, and others can have debilitating symptoms with minimal endometriosis present. "The effects of the disease are not entirely predictable and will depend on the site of the endometriosis, as well as the presence of any additional risk factors or medical conditions," said Dr Arvind Vashisht, consultant gynaecologist at King Edward VII's Hospital. In addition to this, "some of the symptoms may initially be cyclical (associated in the buildup, or at the time of the period), but for some women, they may get more diffuse chronic pain and widespread symptoms," Dr Vashisht said.
Having said that, it's important to know what the symptoms of endometriosis are to enable you to track them and to use this insight to your and your doctor's advantage during medical appointments. Dr Shree Datta, a top rated consultant obstetrician and gynaecologist rated on Doctify usually tells patients to "note down symptoms and periods in an app or in diary before making an appointment," to better diagnose and move forward with treatment if necessary.
We asked five professionals who are endometriosis experts — Dr Vashisht; Dr Preethi Daniel, a clinical director at London Doctors Clinic; Dr Victoria Walker, an expert at fertility centre Institut Marques; Dr Laura Joigneau Prieto, a doctor specialising in gynaecology at Zava; and Dr Datta — to share what symptoms to look out for and symptoms to mention to your doctor if you suspect you may have endometriosis.
Common Symptoms of Endometriosis
- Painful periods
- Heavy periods
- Pain during sex
- Lower tummy pain (pelvic pain)
- Bloating ("this can be due to deposits of endometriosis in the pelvis, around the womb", says Dr Datta)
- Nausea during your period
- Back pain
- Pain when using the toilet (both passing urine and stool)
- Feeling generally unwell during your period (Dr Joigneau Prieto said this can be anything from feeling sick to constipation)
- Difficulty getting pregnant
Lesser-Known Symptoms of Endometriosis
- Chronic fatigue, which can worsen during your period
- Bloody urine even when you aren't on your period
- Leg pain
- Blood in your stool (though Dr Joigneau Prieto noted this is very rare)
- Intense chest pain or difficulty breathing, particularly during your period. It's extremely rare for endometriosis to spread outside of the pelvic region, but Dr Joigneau Prieto said these symptoms can be present due to endometriosis in the thorax.
- Problems with mental health can occur as a result of endometriosis. Dr Joigneau Prieto explained that endometriosis symptoms can have a disruptive impact on the lives of those affected, which can sometimes lead to depression. If this is true for you, talk to you GP about help and also consider endometriosis support groups in your local area.
- Infertility can be a result of endometriosis growing over the reproductive organs. It is estimated that approximately half of women with endometriosis struggle getting pregnant.