I started to struggle mentally as much as I was physically. I was living with unpredictable chronic pain which could surprise me at any moment, yet the hardest part of it all was being told that I was causing it myself with my mind and ‘being too tense around the time of my periods’..Those were doctors actual words. Looking back at my younger self now that I have received a diagnosis and an understanding of myself and things that I have been through, I feel so deeply sad for that young girl who was disbelieved and just labelled dramatic. She was searching for someone to help her and was being turned away and told that it was all in her head. In fact I feel more than a deep sadness, I feel angry and I feel let down. I was completely broken by the failings of the medical system and I am disgusted that not only was this allowed to happen, but that it is still happening today. I grew into my twenties feeling anxious and lost. I hated myself and what my mind was apparently, according to gaslighting medical professionals, doing to my own body. I couldn’t understand why if my mind could be so powerful as to imagine such painful stabbing feelings, why couldn’t I switch it off, why couldn’t I make it stop? Of course now I have those answers being that the Endo was causing these pains, not my brain, but I had no idea at the time and I spent most of my time feeling frightened of my own mind. To be completely blunt, experiencing medical gaslighting is an absolute mind fuck. It ruined my mental health and stole away some very important years of my youth which I can never get back although writing about it feels like a small gesture of giving something back to that girl who was so brave to never give up on herself and somehow kept a tiny spark of hope inside that one day she would find answers and after twenty years of struggle, she did and has rebuilt and become stronger than ever before.
As I dragged myself into adulthood with patchy hair loss and a permanent change of trousers in my bag in case of accidental haemorrhage, my self-esteem became lower than ground level with a feeling that I wasn’t worthy of help. This is what happens with an undiagnosed condition when you know that something isn’t ok, yet help is not at hand no matter how loudly you shout for it. You begin to wonder why nobody cares about your crippling pains and you begin to feel like an invisible waste of space. I wonder if I was a male on the floor of A&E with stabbing pains in my balls if I would be sent away, told to take paracetamol and to use a hot water bottle before perhaps seeking therapy and hypnosis for pain management. Don’t be ridiculous.. it wouldn’t happen.. so why is it different for women?
I don’t have the answers to the above question, other than the imbalance in research between men and womens health and the historical belief that women should just put up with pain because we have ovaries and a vagina. If men were the ones who gave birth do you really believe that it would still be as painful and hectic as it is now.. I think not. Just my opinion. The fact that knowledge of a condition such as Endometriosis has not progressed in so many decades, yet you can literally buy a hard-on over the counter at Boots kind of gives me a feeling that we’ve been slightly left behind.
Anyway. I never fully gave up on myself even though I felt like medical professionals had and I went on to pursue the cause of my pain.
My pursuit to diagnosis took far too long as it often does with Endometriosis. It took many years of doctors visits and eventually gynaecologists to be finally offered investigative surgery and just to give you an insight into trying to reach a diagnosis for something that can be fobbed off as period pain and poor mental health, it took five different gynaecologists to eventually find one who listened and took my pains seriously. I had to advocate for myself in a way that I didn’t know that I dared to do, but I was left with no other choice. And for further insight, here are a few things that doctors told me along the way without any investigation further than a clear ultrasound (bearing in mind that my organs were stuck together).
“You’ll grow out of it eventually, some women just bleed heavily and you are very unlucky”
Needless to say, I never grew out of it.
“Your ultrasound came back clear so at least you know it’s nothing sinister. Why don’t you go away and have a baby? Most women find that it clears them out and stops their period pain.”
I chose not to take that advice. I was actually single at the time and didn’t think that would go down too well on a first date.. Picture the scene:
Him: What are you looking for in a relationship?
Me: A cure! And a baby to stop the stabby pains!
Still Me: You?
No.
“It’s all part and parcel of being a woman”
My organs being stuck together being part and parcel of being a woman was certainly news to me. Fair enough the assumption at the time was period pain, but pain that makes you collapse and vomit and go into shock? Part and Parcel? I don’t think so. Many women experience a bit of discomfort around their time of the month, but severe pain is not..never was..and never will be..Normal!
Nothing about Endometriosis is normal.
Flooding so much whilst you sleep that you wake up with blood matted in the back of your hair is not normal.
Feeling like an awkward teenager, walking sideways like a crab with your arse to the wall to stop anyone from seeing the blood stains on the back of your school skirt is not normal.
Needing to lay on the ground in public to wait for your pain to subside enough for you to walk again is not normal.
Doctors telling you that any of this is normal is, unfortunately..normal.