Endometriosis is the gynaecological condition leaving women feeling isolated and suicidal.
1 in 10 individuals have the condition where tissue mirroring the lining of the uterus grows on other organs and can cause a plethora of symptoms both before, during, and after menstruation.
Some of these symptoms include pelvic pain, excruciatingly painful and heavy periods, bladder and bowel issues, and pain during sex. The dark side of this condition is the effects it can have on an individual’s mental health, from not being believed in doctors appointments to being bed bound during a flare up and experiencing suicidal thoughts. Endometriosis really is a condition that affects all aspects of an individual’s life.
In 2020, an all-party political report driven by MPs and led by Sir David Amess found that alongside long diagnosis times, 81% of individuals felt that their endometriosis impacted their mental health negatively. 89% felt isolated because of their condition and astoundingly 90% of individuals would have liked access to some form of psychological support but were not offered any. Previous to this report, after carrying out research, the BBC found that within a group of 13,500 women, half said they experienced suicidal thoughts.
Little talks…
Talking to young women about living with the condition, one contributor said, “Honestly, whenever I have a flare up it badly affects my mental health. I have to take so much time off to recover from a flare up because they can be so bad that I am literally bedbound.” However, the effects of a flare up stretch further: “when I have recovered, I feel really stressed and overwhelmed because I am constantly playing catch up with my work and life. It just feels like such an inconvenience but there is nothing I can do about it.”
“the doctors [are] throwing the word ‘endometriosis’ around”
This stress is heightened even without a diagnosis. “I am currently waiting on a date for my lap (laproscopy) and the uncertainty is killing me. I’m the type of person that hates not having answers to things, so it’s really stressing me out not knowing, yet the doctors [are] throwing the word ‘endometriosis’ around.”
Holly is also a young woman without an endometriosis diagnosis. “I’ve been waiting for over a year since my referral for a gynecology appointment: the constant waiting leads to overthinking and then you start to question whether the pain is all in your head.” All an endometriosis sufferer wants is a diagnosis however, Holly knows that, “you don’t want to be diagnosed with an illness but for a lot of endo sufferers the diagnosis was such a relief because it makes you feel validated about what you are going through in a way.”
One young woman has been sharing her experiences of endometriosis on her Instagram page to raise awareness. Gracie Moss describes her experiences before finally receiving a diagnosis: “It was incredibly frustrating and upsetting when I was repeatedly dismissed by doctors about my health concerns and pain at every single stage. The voice of a young woman as a legitimate authority on her own body, pain, and wellbeing is simply ignored.” During this time she even had to get her parents involved: “I was repeatedly made to feel that I was making a ‘big deal’ out of my period pain and made to feel as though I was being overly dramatic in asking for ultra-sound scans or for my condition to be investigated further.”
More psychological support is needed…
“more psychological support leads to women feeling more confident to advocate for themselves”
Reflecting on the government’s findings, unsurprisingly, the three young women I spoke to all agreed that more psychological support was important. Although Gracie feels fortunate to have received a diagnosis she understands that, “Psychologically, it is comforting to know the cause of my pain and to understand how to more easily monitor it. However, I am constantly worrying about my pain and the re-growth of my endometriosis and I am very concerned about my fertility and whether I will be able to have children in the future.”
Holly believes that “More psychological support leads to women feeling more confident to advocate for themselves, meaning they’ll get the care they deserve.”
Gracie uses her social media to raise awareness for the condition and has reposted resources from charity Endometriosis UK and shared her own experiences. From raising awareness, she has received messages from others and has been “shocked by the response and especially by many of my male followers who have been horrified by the severity of my pain and the severity of this condition.”
“there is still so much shame and disgust towards the topic of menstruation”
Due to the illness being invisible, Gracie found that “many of my friends had no idea that I was sick and my campaigning on Instagram has certainly come as a shock to many and hopefully has spread awareness amongst other individuals in their 20s”
We need a change in narrative…
What all women highlighted was the need for a change in the narrative. “There is still so much shame and disgust towards the topic of menstruation, especially from men, and period pain is often joked about or belittled which often silences women and ensures conditions like endometriosis go undetected”, said Gracie.
Another individual said, “I would have handled going to the doctor and the whole process of getting a diagnosis a bit better if I had known about the condition beforehand.”
“without the open conversations, people aren’t getting the right education”
Holly went on to comment, “Without the open conversations, people aren’t getting the right education or information that they need to help them understand if their symptoms are normal or something that they should get checked out.”
With these stark figures and personal stories, although we already knew endometriosis was an all body condition, it goes further than just it’s physical effects.
Neve Gordon-Farleigh
Featured image courtesy of Verne Ho via Unsplash. This image has in no way been altered. Image license is available here.
1 Comment