It’s Time to Acknowledge Womxn’s Pain – Why Are So Many of Us Suffering in Silence?
One fateful night in March 2019, I decided to go on Instagram. I had rarely used this social media before as the opportunity for comparison was too much of a trigger for my ED, but I just felt like it might be the place and boy I was right. After losing out on another evening of fun with friends due to my pelvic pain I decided to set up an account, I was so tired of being alone with this, of trying to navigate it, understand it and wanted to learn from others who might be experiencing something similar. This is when I discovered the wonderful endometriosis community, who helped me realise I had all the symptoms, my ultrasounds couldn’t have ruled it out and that accessing a diagnosis was not as easy as I had anticipated. It was purely by chance that I found myself in this place, after suffering from pelvic pain since the age of 8, I had internalised so much shame, self-hatred and self-blame. I was finally discovering that I was not alone and that most importantly, my journey of suffering in silence was not unique.
Endometriosis is a chronic inflammatory condition where tissue that is similar but different to the endometrium can be found growing throughout the body but is most commonly discovered in the ovaries, the fallopian tubes and pelvic walls, the bladder, and bowel. This condition impacts one in ten womxn and is more common than diabetes or asthma with an estimated 1.5 million sufferers in the UK alone. But the average delay from onset of pain to a diagnosis is between 7-10 years. That’s nearly a decade of suffering in agony, without knowing why. It’s often insinuated that Endometriosis can be hard to diagnose or that it mimics many other conditions like IBS, but the stark reality is that womxn’s pain is often normalised, dismissed and downplayed and that there is a real gender health gap when it comes to acknowledging and treating womxn’s pain.
Gender bias is real. There are startling figures around the dismissal of womxn’s healthcare concerns, a survey carried out by Eurodis discovered it took on average 12 months for a man to receive a diagnosis of Chrons disease, whereas for womxn in took 20. For the condition of Ehlers Danlos-Syndrome it took men 4 years, for womxn this shot up to 16. Not only do these facts show the struggle that womxn face, but the reluctance to take womxn’s pain seriously can be deadly. In May 2018 a French womxn lost her life after calling for an ambulance with such severe abdominal pain she thought she was going to die, the response of the call handler was, ‘You'll definitely die one day, like everyone else.’ After a five hour wait, she eventually got taken to hospital, where she lost her life due to a stroke and organ failure. This is the catastrophic reality of the gender health gap.
It’s hard to imagine waiting years for answers, but this is the reality for so many womxn with endometriosis. Often those who go to their doctors with symptoms of endometriosis such as painful debilitating periods, painful urination or bowel movements, pain during sex, extreme fatigue, nausea and more, are told this pain is normal or probably caused by stress, prescribed the contraceptive pill and that’s that. When I first anxiously went to my GP aged 18 my concerns were instantly shrugged off and I was given a dose of antibiotics and told I probably had a UTI. There was a constant normalisation of my pain and I tried desperately to continue my life alongside whilst trying to hide the agony. I found it incredibly difficult to find anyone to believe my pain. I was constantly told that this was just a thing womxn get, that we were badly designed, that I had probably caused this pain myself by losing my virginity, that I just probably had chlamydia, that I probably just had a low-pain threshold and needed to suck it up. There were also so many reasons why I was to blame, but there was no emphasis on trying to find out if there was actually something wrong with my body and not something flawed with me.
One of my most traumatic experiences was during a GP appointment whilst studying in Bath. The doctor stated they would not refer me until they did genital swabs, I explained this would incredibly painful, they told me it shouldn’t be. We started the swabs and it was agony, I asked her to stop, I was incredibly vocal in how much pain I was feeling, her response was again to say, ‘it shouldn’t be painful.’ My male friend was waiting outside to head to our lecture, I had to draw in my breath and once again suck up the pain. I remember feeling sick to my stomach, going home straight after the lecture and crawling into bed while I bled through my underwear. It would be another four years before I got my endometriosis diagnosis.
I often find myself wondering if I would have ever got my diagnosis if it hadn’t been for that fateful night, if I would still be here struggling in pain, feeling like a stranger in my skin. I wonder how different my life would have been, how many more years I would have had to suffer in shame, alone with no one believing me. My diagnostic laparoscopy (the only way to officially diagnose the disease) and removal of the endometriosis discovered by excision surgery has helped me immensely. Excision is the gold standard removal method, cutting the endometriosis out at the root, but there are real struggles accessing this type of endometriosis surgery, with many patients not even being told about it or being given the option. Accessing it can often be based on where you live and whether you have health insurance or the ability to cover the cost yourself.
I am now 8 months post-op, I still suffer from pain and other pelvic pain conditions such as Interstitial Cystitis, Pelvic Floor Dysfunction and Vulvodynia. There is also no cure for endometriosis, and it is a whole-body disease, so I still struggle with daily symptoms. But at least I know why. It’s no longer a mystery or an unknown, it’s no longer a question of what I could have done to cause it, I did nothing to bring this upon myself and neither did any other womxn battling the disease. It’s my hope that thanks to social media and this generation of tech savvy womxn that finally these barriers will start to break, that people will no longer have to struggle on wondering why they are in pain. This is our decade to redefine womxn’s pain, to challenge the gender health gap and to demand that we get the access to the care and compassion we deserve.
Written by Sarah Rose
Sarah Rose is a freelance writer from Belfast who writes about all things pelvic pain. She uses her Instagram platform mypelvicpain to share her journey with endometriosis and raise awareness around this condition and its impact on her life. Sarah’s sole aim is to help others and ensure that no one ever has to suffer in silence again.