In my own words…

Endometriosis is not just a lifelong condition; it’s like living with an evil gremlin who uses your womb as a pin cushion and spends a few hours each day sowing your organs together for fun. It then throws tantrums if you are not giving it enough attention and bites you unexpectedly like an angry toddler who likes to embarrass you in public. It hides in your pelvis rent-free but occasionally likes to make you look pregnant with twins just for jokes. It eats all the chocolate and steals your social life and your will to live until you get it surgically removed with a restraining order, but it unsubtly stalks you and wears you down until it finds its way back inside with a vengeance and barbed wire to keep itself in. Endo does not care where you are, where you are going, or the company you are in; it likes to be the main character, and it loves an unpredictable plot twist. It has made me lie down unexpectedly at work and in public, and it has forced me to leave events alone in a taxi, such as my own birthday night out and a close friend’s wedding. Endo is extremely painful and unpredictable, yet we are expected to just get on with it and keep up with everyone else because it is a women’s problem that has been left under-researched. 

Other than being completely fobbed off by medical professionals, Endometriosis is a disease which as many as 1 in 10 females/ those assigned female at birth are suffering from. It is an extremely painful disease in which tissue similar to the lining of the womb grows in other places throughout the body and has been found in every major organ. It can form painful lesions and cysts and create tethering, causing organs to stick together, it can also cause organ failure and loss. Endo can also become ‘Deep infiltrating’ and grow inside organs as well as on the surface. This causes debilitating, chronic pain which can have a huge impact on the sufferer’s life. The pain is often heightened whilst having periods and causes severe ‘period pain’. Besides all of this Endo is severely underesearched and has been left at the bottom of the research pile for many decades. It can take many years to reach a diagnosis as it is often missed on imaging such as ultrasounds so many women are then left without any further investigation or help. 

My symptoms began at the age of 11, and I was diagnosed at age 31. I was finally diagnosed because I reached the end of my tether and had to advocate for myself to be heard. My journey to diagnosis was a rough experience with doctors telling me for a long time that I was causing my pains myself, which had a knock-on effect on my mental health.. I knew deep down that my pain was very real and physical, so I persisted until I was finally offered explorative surgery to find out the truth, during which I was diagnosed with stage four deep infiltrating endometriosis. I will talk more about my diagnosis journey in a separate blog post..

Endometriosis is not period pain although symptoms often manifest through heavy, painful bleeding. Periods should not be so painful that your body goes into shock, makes you throw up, or affects you in any way that stops you from being able to live fully. This is not a normal ‘period’ and should be investigated. Yet many women are still being made to feel like they are just being a bit dramatic and their pain is being ignored and fobbed off until the disease has grown so out of hand that it is destroying their organs.

I know..I know it sounds prehistoric and almost unbelievable unless you experience medical gaslighting for yourself. But it’s happening. It’s happening to women everywhere and we deserve better.

It shouldn’t still be happening. But it is. I speak from experience after spending many years shouting for help and investigation into why I was experiencing such high levels of pain, yet being sent away with painkillers and encouraged to use a hot water bottle for my ‘period pains’.

Endometriosis is a sneaky bitch. It hides from medical imaging, but that doesn’t mean that you should be just left wondering what the hell is going on and sent away to suffer. Sorry Doc that game’s over, we’re not playing anymore. Perhaps the old Latin textbooks need an update. We’re not just crazy, hormonal females. Endometriosis is a hidden illness in which many of us share the same symptoms and yet we also share the same experiences of being told that it’s all in our heads because our ultrasounds were clear instead of looking further into the source of our pain. Make of that what you will.

We are the forgotten women.

This is not a frightening tale from years gone by, from the land before the development of medical research, this is happening now. It’s happening today because medical research has left us at the bottom of the pile. We have a ‘women’s problem’ that can be passed off as a ‘hysterical hormonal female’ with heavy periods who cannot cope with period pain in the same way that other women can. The fact that our organs become tethered and our insides produce large lesions and cysts are glazed over as if it isn’t really happening. 

We are being ignored.

We are being gaslit. 

Even after diagnosis we are sent on our merry way with no access to further help or regular follow-ups.

We are just left to cope alone until we end up in need of more surgery to once again untether our organs or worse remove organs which have become so obliterated that they can no longer function. I understand that a lot of this is due to a lack of research but I cannot accept the disastrous lack of humane respect that we receive from a large number of doctors from whom we attempt to seek advice. The gaslighting surrounding Endo is a pandemic in its own right.

I know that I am not alone in my experience as I later learned that there were many other women out there who had also suffered years of medical gaslighting to finally reach a diagnosis of Endometriosis with it taking far too long.

Do you have Endometriosis? Have you experienced medical gaslighting? Lets chat in the comments xxx