We want to help raise awareness of Endometriosis
March is endometriosis awareness month. Despite an estimated 1 in 10 women and those assigned female at birth being affected by endometriosis, there is a distinct lack of awareness of the disorder.
What is endometriosis?
Endometriosis is a condition where cells that behave like the endometrium, which are usually lining the womb, are found outside the uterus. During the monthly cycle, hormones stimulate these cells causing them to grow, then break down and bleed.
This internal bleeding has no way of leaving the body, which leads to inflammation, pain, and the formation of adhesions that can lead to organs becoming stuck together. Typically, the ovaries, fallopian tubes, bladder, colon and pouch of Douglas are affected, but in rare cases endo can spread to other areas of the body, such as the lungs, heart, eyes and brain. Symptoms vary from person to person and can include:
- Infertility or difficulty getting pregnant
- Pelvic pain that worsens during period
- Painful abdominal bloating
- Heavy periods and irregular bleeding
- Pelvic masses
- Back pain
- Pain during urination
- Digestive problems
How is endometriosis diagnosed and treated?
The only way to confirm endometriosis is by diagnostic laparoscopy – unfortunately, there is not a non-invasive method of diagnosis. However, many people have various other tests before surgical diagnosis including allergy tests, pelvic exams, ultrasounds and MRIs. Although these can’t diagnose endometriosis, they rule out alternative causes for the symptoms, and can detect indicators associated with the condition, such as cysts.
There is no cure for endometriosis so, rather than being treated, the condition can be ‘managed’. Current treatments usually focus on masking the pain which typically involves suppression of ovarian function.
Surgical excision can be used as an attempt to preserve fertility and resolve pain. A highly skilled endometriosis surgeon is required to ensure the best chance of recovery with complete and thorough removal of endometriosis tissue via excision – not every gynaecological surgeon has the correct expertise for this.
Those with endometriosis are waiting an average of 8 years for a diagnosis – a wait time that hasn’t improved in over a decade. The delay in diagnosis is particularly concerning because endometriosis is a progressive disorder, meaning that it gets worse with time if left untreated.
How does endometriosis impact on mental health?
Living with endometriosis – or for that matter, any illness or chronic pain condition – takes a toll on mental health as well as physical health. A BBC survey conducted research on over 13,500 women and found that; around 50% of those suffering from the condition had suicidal thoughts, many rely on addictive painkillers, and the majority said it had badly affected their relationships, education and career. Having endometriosis is linked to a higher risk of developing mental health disorders such as anxiety and depression.
Endometriosis can have a negative impact on an individual’s quality of life – for some, the pain can be so debilitating that they are no longer able to work. Even for those who still manage to work, working in constant pain is exhausting and often leaves little energy left for social engagements. There is a real impact of not knowing how you are going to feel from day to day – making plans is difficult and the pain can lead to isolation and loneliness.
It is often the case that women are made to feel like doctors do not believe the severity of their symptoms and feel that they are exaggerating, or simply have an inability to tolerate ‘normal’ period pain. The experience of not being believed by doctors or even friends and family members or being told that the pain is ‘all in your head’ is incredibly frustrating and can lead to self-doubt.
There is a stigma surrounding endometriosis, as it is associated with menstruation, so it is often seen as an uncomfortable topic and can be considered an embarrassing subject to discuss. This, along with the normalisation of women’s pain, can lead to the dismissal of symptoms and create a reluctance to discuss symptoms and seek help. The absence of understanding or even validation of pain inevitably causes a sense of hopelessness and can cause people to feel that they have no available treatment options.
A good place start in raising awareness would be in the education system – Endometriosis UK found that 62% of women aged 16-24 don’t know what the condition is and 56% of people can’t name any symptoms. If endometriosis were to be taught in schools, adolescents may be able to identify their symptoms, either current or those that develop in the future. This would lead to the condition being managed at an earlier stage and, in some cases, may preserve fertility.
You can get involved in raising awareness by campaigning, volunteering, asking your employer to join the endometriosis friendly employer scheme, or by completing a 1 in 10 challenge with Endometriosis UK.
If you or someone you know needs support, Endometriosis UK run a confidential endometriosis support line on 0808 808 2227.
- Tel: 0345 222 5678
- Email: email@example.com