This article was medically reviewed by Andrew Horne, Professor of Gynaecology and Reproductive Sciences at Edinburgh University's MRC Centre for Reproductive Health.
Endometriosis is a chronic condition that can drastically affect people by impacting not only their menstrual cycle, but also their everyday lives. Due to the stigma around periods, it can be a difficult topic to understand and speak about, resulting in negative self-image and mental well-being.
It is known for being difficult to diagnose, based on its wide variety of associated symptoms. Some endo symptoms overlap with other menstrual health conditions, whilst some are linked to non-gynaecological disorders such as IBS (irritable bowel syndrome), which means that those suffering from endometriosis are often misdiagnosed.
Because endometriosis can present so differently, some sufferers have had it dismissed by doctors as a potential diagnosis, especially if their bleeding is considered to be ‘normal.’
With a lack of research and investment into women’s health and menstrual conditions, many doctors and even gynaecologists (those who don’t specialise in endometriosis), have a limited understanding of the condition and the different ways it can present.
The main symptoms, featured in the NHS (UK) and HSE (Ireland) guidelines, the ones people are most likely to present with and the ones that the doctors will be looking out for are as below. Please note endometriosis can present in numerous ways, and you don’t need to have all the symptoms listed below to have endometriosis.
- Pelvic pain: pain in your tummy or lower back that can occur during or outside of your period.
- Period pain: pain that stops you going about your normal activities or affects quality of life.
- Pain during or after sex
- Pain with bowel movements or urination: during or outside of your period.
Related symptoms that may present with endometriosis:
- Nausea: during or outside of your period.
- Constipation, diarrhoea or blood in your pee: during or outside of your period.
- Fatigue: during or outside of your period.
- Infertility: endometriosis doesn’t necessarily lead to infertility, and plenty of people with endometriosis will get pregnant with no issues, there is an association with it, that is yet to be fully understood.
- Heavy bleeding: using lots of pads or tampons, or bleeding through your clothes.
But it doesn’t stop there for many people. During our group discussions, we discovered people living with endometriosis report a vast array of symptoms experienced, in addition to the ones listed above. Those most regularly mentioned include:
- Pain elsewhere in the body: such as chest, head, joint, legs, shoulder, neck.
- Lung or chest issues: coughing up blood, pleural effusion, wheezing, shortness of breath, coughs, chest infections.
- Weight gain
- Brain fog
- Bloating: the more severe and painful form of bloating is called 'endo belly'.
- Hot flushes
- Pins and needles
- Fever or shivering
- UTIs: Urinary Tract Infections.
- Mental health impacts: depression, anxiety, isolation, grief, reduced quality of life.
Endometriosis affects people differently
What became clear during our conversations with people, is that for so many endometriosis is a whole-body disease. It is also something that can impact people’s lives constantly, not just when they are having their period. Many live with continuous pain, barely getting a break from it and then suffer debilitating peaks of pain when their period does arrive. Others will experience lengthy bleeding or breakthrough bleeding, meaning they rarely have a day where they don’t have to think about using period protection.
Numerous studies at both a global and national level have highlighted the impact that living with endometriosis can have on a person’s life. Missing school or work, not being able to make social engagements, struggling with depression or anxiety because of the symptoms and missing out on intimacy because having sex is too painful.
When developing our app, we realised just how many symptoms there were for people to track and how important it was for them to be able to note down how the disease impacts their quality of life, not just for their doctors but for themselves so they could start to identify patterns or see anything that might exacerbate a certain symptom. We also discovered there was a need for people to track the good days when they were not in pain and be able to make a note of treatments or pain relief that worked for them, so they could refer back and use them again next time.
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Nnoaham, Kelechi E et al. “Impact of endometriosis on quality of life and work productivity: a multicenter study across ten countries.” Fertility and sterility vol. 96,2 (2011): 366-373.e8. doi:10.1016/j.fertnstert.2011.05.090