Endometriosis pain is unimaginable.
“It’s like having a hot knife in your stomach”, says Karina Wilson, 28. Karina was diagnosed in 2011, and has been suffering ever since.
“I came out of school with one GCSE. I never went to uni as I never felt like that was an option for me”.
Endometriosis is a chronic disease where tissue which is similar to the lining of the womb grows outside and around other organs. It mainly affects the ovaries and fallopian tubes, but can grow on places such as the bladder, kidneys and others.
Karina’s journey through chronic illness is one which is deeply shocking and upsetting, but also incredibly motivational for women who are going through the process of being “neglected by doctors”.
Karina has an online blog and various public figure social media accounts to offer a safe place for supporting women who have, or potentially have Endometriosis.
Endometriosis affects one on ten women. The debilitating condition is extremely common, yet it takes an average of eight years to be diagnosed.
With the chronic illness taking so long to be diagnosed, many women are suffering daily without knowing why.
Unfortunately, under 2.5% of publicly funded research goes into reproductive and gynaecological health according to the UK Clinical Research Collaboration. This means female only conditions such as endometriosis are widely under researched and under reported.
Because of the lack of knowledge into these illness’s, often women are left feeling unsupported and abandoned, such as both ladies in this article who suffer from the condition.
The excruciating pain has been described in many ways from those suffering. However, patients are still asked to rate their pain on a scale of 1-10.
Chronic illness’s such as Endometriosis cannot be rated on a scale of 1-10 as the type of pain being experienced is unlike any other.
Lorna Richardson, a professor and researcher who was diagnosed with endometriosis more than a decade ago described the pain as “violently agonising” and “torturous”.
Lorna carried out research on Endometriosis and digital support, called “The Endo project”. The project was carried out by Lorna at The University of East Anglia alongside two professors from Umea University in Sweden.
One of her aspects of research was looking into the perception of pain, to try and help the medical community understand the horrific condition better.
Chronic pain is on a separate scale to other illnesses. Lorna stated “everyone describes their pain in different ways, but there are commonalities of what pain feels like from people who come from this endometriosis community”.
In her work, which is to be published in the summer months of 2022, she discovered that pain is incredibly nuanced and the perception of pain is automatically dismissed as over exaggeration.
She followed on to say that “there is an element of gaslighting from medical profession” reported. Which is why she wants to help people to understand the pain and the complexity and seriousness of the condition. Leading on to help the diagnosis process.
We do not yet know why Endometriosis occurs, nor is there a cure. There is treatment and hormone balancers to reduce the pain, but the most effective way reported by those I have spoken to is heat.
More research needs to be done into this heart breaking and debilitating disease, stopping the “misogynistic way of the medical world” so that those struggling with chronic illness’s feel understood and supported throughout their diagnosis and onwards.