The most common symptoms of PCOS include:
- Pain in your tummy or pelvis, normally worse around your period
- Heavy vaginal bleeding
- Pain during sex
- Pain on opening your bowels
- Difficulty getting pregnant
Unfortunately, it takes on average 8 years from the onset of symptoms to diagnose (3). Research in endometriosis remains underfunded and under-researched - which leaves people often feeling very unsupported and unsure of how to support themselves. Let’s try to alleviate some of that confusion by tackling some of the biggest myths when it comes to endometriosis.
Myth No.1: Endometriosis is rare
Unfortunately not. Endometriosis affects 1.5 million women and people assigned female at birth in the UK, a similar number to those with diabetes yet the awareness levels of these conditions are vastly different (3,4). Despite how common it is, a recent inquiry in the UK found that it takes on average 8 years to get a diagnosis, despite over 58% of women visiting their GP ten or more times with symptoms, 53% visiting A&E with symptoms, and 21% seeing doctors in hospital ten or more times with symptoms (5) The only definitive way to diagnose it is via laparoscopic, or keyhole, surgery to see inside the pelvic cavity. As this is quite invasive, it is one of the reasons why there is a delay from the onset of symptoms to diagnosis. There is ongoing research into less invasive ways of testing.
Myth No.2: Endometriosis is just painful periods
While painful periods are a symptom of endometriosis - it is far more than that. Unlike during regular periods, the pain from endometriosis isn’t only caused by contractions of the uterus, but instead, comes from endometrial-like tissue growing elsewhere in the pelvic cavity - causing inflammation and pain. As this tissue can grow in other parts of the body, including the bladder and bowel (and in very rare cases the lung) this means pain and other symptoms can arise in different parts of the body. Beyond pain, endometriosis can impact people’s lives in many other ways with symptoms such as;
- Fatigue and lack of energy
- Depression
- Impact relationships and intimacy
- Fertility issues
- Difficulty in fulfilling work and social commitment
It’s also important to note that the amount of endometriosis does not always correspond to the amount of pain and discomfort experienced and not everyone with endometriosis experiences symptoms.
Myth No.3: A gluten-free diet is the way to go
Gluten always seems to be to blame when it comes to any health problem but this myth has a sliver of truth - for some people. Despite a lack of good quality evidence for using a gluten-free diet to improve symptoms of endometriosis, one study did find positive results (6) Another study noted a slightly increased risk of coeliac disease in those with endometriosis although the reason for this is not known (7). Going gluten-free requires a huge dietary overhaul - and it also means removing a lot of beneficial foods from the diet such as fortified wholegrain breads and cereals which are a big source of fibre and nutrients in the diet. If you have endometriosis and are concerned that gluten is something that you are not tolerating, then it is worth discussing this with a registered dietitian or your GP.
Myth No.4: If you have endometriosis, you can’t get pregnant
Many people with endometriosis are concerned about their fertility and ability to conceive, which is completely understandable. The truth is, yes, there is an association with endometriosis and fertility problems but, even with severe endometriosis, natural conception is still possible. In fact, it is estimated that 60-70% of those with endometriosis can get pregnant spontaneously (8). If you are looking to get pregnant, or if fertility is a priority or concern, always talk to your GP or endometriosis specialist about this, so they can discuss your treatment and fertility options with you.
Myth No.5: You must cut out dairy
The reasoning behind this is based on the common myth that dairy promotes inflammation when, in reality, that isn’t the case and many dairy products are thought to be anti-inflammatory. Looking at the research, many studies have found no link between dairy and endometriosis, the most recent review of the evidence found that there was a reduced risk of endometriosis with > 3 servings of dairy per day (9). This was especially true for full-fat dairy products. The mechanism behind this finding is unclear, but as endometriosis is an inflammatory condition the calcium and vitamin D content of dairy products may play a role. Others have speculated that perhaps dairy may influence the gut microbiome in a positive way by reducing endometriosis-related pelvic pain (10). Right now we don’t know for sure, but if you enjoy dairy and can tolerate it - there is no need to cut it out. If you can’t, for example, you’re lactose intolerant, opt for lactose-free dairy foods or include calcium-fortified alternatives.
For more information visit:
- Royal College of Obstetricians and Gynaecologists: https://www.rcog.org.uk/for-the-public/browse-all-patient-information-leaflets/endometriosis-patient-information-leaflet/
- Endometriosis UK https://www.endometriosis-uk.org/
- NHS https://www.nhs.uk/conditions/endometriosis/
Ps. If you are concerned about endometriosis, keeping a symptom diary can be really helpful. Endometriosis UK have got a sample to use which may be helpful.
