On average, endometriosis takes 7.5 years to be diagnosed. Despite long wait times, 3 in 4 (75%) patients report being misdiagnosed with another physical health condition.

Approximately 1 in 10 women are currently living with endometriosis despite the condition often being labelled as ‘rare’. On average, it takes 7.5* years to diagnose due to long waiting times and frequent misdiagnosis.

A study** found that 75% of patients reported being incorrectly diagnosed with another physical health problem such as Irritable Bowel Syndrome, most frequently by gynaecologists (53%) followed by general practitioners (34%).

With this in mind, Dr Gill Lockwood, advisor at PCOS supplement provider, Fertility Family, debunks some common myths and misconceptions associated with the condition. 

What is endometriosis?

Endometriosis occurs when tissue similar to the womb’s lining grows in places outside of the uterus, such as on the ovaries and inside the fallopian tubes. This tissue, a mixture of blood and glandular tissue, can often flow back through the fallopian tubes into the pelvic cavity during a period.

Endometriosis and PCOS

Usually, the immune system will deal with it, but in some people, the tissue ‘implants’ and grows in response to the monthly hormone cycle. As a result, when they experience a period, this misplaced tissue also bleeds and over time this can cause scarring and blockage of the fallopian tubes. Problems caused by endometriosis can include heavy bleeding, painful periods, bleeding between periods, pain during or after sex, fatigue, or pain during bowel movements. 

“You can’t get pregnant if you have endometriosis”

Many women are only diagnosed with endometriosis when they try to become pregnant and find that they have difficulty conceiving. There is quite a strong familial link in endometriosis.

Choice of contraception is a very personal decision, but if you have risk factors for endometriosis such as heavy, painful periods or a strong family history, then the combined oral contraceptive pill, taken on a three-monthly ‘back-to-back’ cycle may help to keep the endometriosis quiet until you’re ready to think about starting a family.

A laparoscopy is the best way to diagnose endometriosis and it can be combined with effective treatment to remove the endometriotic deposits and check the fallopian tubes. Many women diagnosed with endometriosis can conceive either naturally or with the help of medical interventions. Although the condition can sometimes affect fertility, this doesn’t automatically mean that you won’t be able to get pregnant. 

Studies have shown that while people with endometriosis have a higher risk of infertility, not everyone diagnosed with the condition will experience this. As endometriosis can go undiagnosed, or be misdiagnosed for another condition, this can sometimes lead to individuals experiencing infertility due to the delayed diagnosis. 

If you are struggling to conceive with endometriosis, consulting with medical professionals and undergoing fertility treatments can enhance the likelihood of conceiving. 

“Periods are always extremely heavy if you have endometriosis”

While heavy menstrual bleeding can be a symptom of endometriosis, it isn’t a universal experience. The severity of symptoms is highly variable from person to person. Some will experience heavy periods, while others will experience normal or even lighter bleeding. It’s important to recognise that the absence of heavy periods doesn’t negate the possibility of endometriosis. 

Endometriosis affects each person differently, and the heaviness of periods will ultimately depend on different factors such as the location of the endometriotic lesions and changes in hormone levels. Studies have shown that a woman’s perception of how heavy her periods are is strongly influenced by personal factors such as expectation of what is ‘normal’. However, periods that cause debilitating pain, cause anaemia, last more than a week, or are so heavy that they require both tampons and pads at night are not ‘normal’ and require investigation.

“Endometriosis always causes pain”

As with heavy periods, pain is often associated with endometriosis; however, not all women with the condition experience significant pain. Laparoscopic studies have shown a poor correlation between the extent of the endometriotic lesions and the perception of pain. Although some may experience severe pain associated with the condition, others may feel barely any. 

One of the factors that will determine the pain level is the location of the lesions. So, a lack of pain does not necessarily mean that endometriosis isn’t present. 

When people do experience pain, this can be due to inflammation, scar tissue formation, hormonal changes, or the condition leading to the formation of cysts within the ovaries called endometriomas.

“You can’t have endometriosis and PCOS”

Endometriosis and PCOS

There is a strong inherited link in both endometriosis and PCOS and it is possible to suffer from both PCOS and endometriosis at the same time – so it is important to understand the difference between these two conditions. Current research suggests that both conditions may be influenced by exposure to hormones (especially androgens like testosterone) in the womb.

PCOS is generally seen as a hormonal disorder, whereas endometriosis is caused by abnormal tissue growth outside of the uterus. In both conditions, medication which ‘normalises’ the hormone imbalance can help to manage the symptoms. 

There are also distinct differences when it comes to symptoms. Endometriosis is often characterised by heavy bleeding and painful periods. In contrast, PCOS tends to cause irregular or absent periods, along with more visible symptoms, such as acne or excess hair growth.

For those struggling with PCOS symptoms, supplements such as myo-inositol can help to reduce symptoms such as unwanted hair, acne, and oily skin. 

People who suffer from endometriosis and/or PCOS have an increased risk of depression and low mood, so counselling or even joining an online self-help group can be supportive. Nutritional changes have also been shown to help alleviate some of the symptoms of PCOS and endometriosis and experts tend to recommend a ‘Mediterranean’ diet that is low in carbohydrate, sugar and processed food and high in vegetables, lean protein and fibre.

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