Endometriosis has been recognised as one of the most painful long-term health conditions. It is as common as diabetes but most have never heard of the disorder that affects one in ten women in the UK.
The condition causes tissue similar to that of the lining of the uterus to be found in other areas of the body, such as the fallopian tubes and ovaries, although it can also extend to extra-pelvic locations. Many may not be aware that they have the inflammatory condition, but for others it causes debilitating chronic pain. The symptoms vary greatly, but the most common issues associated with endometriosis are:
- Chronic pelvic pain
- Pain during or after sex
- Period pain that inhibits everyday life
- Fertility problems
The current delay in diagnosis in the UK is almost eight years, during which patients are often dismissed or denied treatment for pain which is severely underestimated. The lack of awareness for this chronic condition is fundamentally harming those who suffer from it. The length of the diagnosis procedure discourages some sufferers from seeking treatment, as their pain is often not taken seriously due to insufficient knowledge about the condition. Pain is a fundamentally isolating experience. This isolation is accentuated by a general lack of awareness of the condition. Women who are fighting against their own bodies are also being forced to fight for recognition of their pain.
The impactful nature of endometriosis cannot be understated. It can inhibit even the most menial tasks for patients. The BBC interviewed over 13,500 women who have endometriosis, and most said that the condition severely impacted their social relationships, careers and education. Worryingly, around half of participants stated the condition had led to suicidal thoughts.
The delay in diagnosis has drawn attention to the gender ‘pain gap’, the notion that women suffering from chronic pain are less likely to be taken seriously than men. Studies have found that women are likely to wait longer in A&E than men, and they are likely to be prescribed weaker painkillers. It is admittedly hard to pin down the cause of biased approaches to healthcare, but the lack of funding and information available to those who suffer from endometriosis is startling and is exacerbated by myths that surround the condition.
Emily Orr, 20, has warned that the perception of the condition as a purely feminine issue is causing “far more harm than good”. She claims that “misinformation about the disease is what makes an already complicated process that much harder. In England, we as sufferers have the right to demand specialist treatment, but not everyone has the capacity to be pushy or the desire to fight their GP over what’s right for their own body”. Disclosing her own traumatic journey to diagnosis, she says her GP told her she didn’t seem “in that much pain” and as a result was only prescribed the hormonal birth control pill.
Misinformation that endometriosis is the same as endometrium (the lining of the uterus) causes myths that birth control to regulate menstruation, chemically induced menopause, hysterectomies and pregnancy will manage the condition. These myths are worsening the already traumatic diagnosis procedure for patients. Moreover, endometriosis has no cure. A laparoscopy is required to even reach a definitive diagnosis. For the majority of sufferers, the condition is managed with treatment of the symptoms because its cause, as of yet, is unknown. However, according to the Centre for Endo Care, excision is the gold standard of treatment for patients, as well as other complementary treatments that can significantly manage the symptoms. This is the goal for sufferers of endometriosis, but the journey to surgery is needlessly convoluted. The myths surrounding this disorder are urgently in need of debunking in order to allow sufferers the recognition and respect that patients with other chronic pain conditions are granted at the most basic level.
Endometriosis UK is the leading charity providing information and support to women. The charity receives extremely limited funds as a result of the lack of awareness surrounding endometriosis. If you need information or support, or want to help in any way, please visit: https://endometriosis-uk.org/.