Sorry in advanced for the sarcasm and sass. Before you read the following, please be aware it may not be perfect or quite your cup of tea but I hope you are able to take something positive or informative away from this read. I also cross my fingers in the hope that no one is offended by this piece. Being someone who is usually very private and does not like to over share at the best of times, writing this was both challenging and empowering for me. This is only scratching at the surface of something so complex for myself and many others. In no way am I speaking for anyone else or what they may have experienced.
Three days post op from my first laparoscopy and endometriosis excisions, my emotions are well and truly mixed with both happiness that I finally have an answer and sadness at the uncertainty of what finally having the diagnosis of endometriosis will mean for me in the future.
Something I did not expect to feel and am almost ashamed of are the “I told you so” feelings to all those who did not take me and my symptoms seriously in the past.
Kind of petty that all I want to say right now is I told you so! Right? To the people who thought I was using a “flavour of the month illness” or “just bad period pains” to get out of things and not to mention the several medical professionals who assured me that “this is normal”.
Thinking back eight(ish) years ago in high school when I started to experience the reoccurring horrific pains and illness, I honestly couldn’t have Imagined anyone would have an answer as to why this was happening and what I could do about this, weird concept right?!
From being vibrant, bubbly and social to the complete opposite overnight. This sometimes “invisible”, mysterious illness (now known to me as endometriosis) and pain in my ass (literally), led to emergency department visits, occasions which I was unable to walk, times I was made to feel as though I was a drug seeker, forever being assured this is just what a bad period feels like, to the removal of my appendix after being mistaken as the cause of pain and lastly, seeing several different specialists and GP’s to be left feeling disheartened and overwhelmed. I began to think that maybe this was “normal” and maybe I was just being a dramatic adolescent.
Knowing people could not see what I was feeling or not always being able to understand how I could go from completely fine one day to then be… completely not is understandable but challenging for me at times. Feeling as though people want to say (or have said) “what’s wrong with you now?!” was and is still uncomfortable for me. No matter how much I’m aware they are there for me and care I can’t help to think of this. Myself, always having a tendency to feel as though I need to play it down and hide what I have experienced to avoid drawing attention or the uncomfortable conversations about what has become very normal for me.
Fast forwarding through a lot of ups, downs, a whole lot of personal growth and hind sight, being as great as it is… I sit here now three days post op and can’t help to think no one should feel as though they have to “play it down” as this conversation is one that needs to be had to bring awareness. This is real and this not “just a bad period” (one for the record this doesn’t just affect people during the time of their period).
Putting all the negatives I have experienced aside I am still very fortunate in my situation to have a supportive network of family who have put up with the all of the mood swings, courtesy of my frequent pain, my friends who will forever listen to me complain about my pain and subtlety help me leave a venue without causing scene when the pain gets way too real for me and of course my super human partner who has pretty much done it all from carrying out of the shower to bed, helping me get dressed and fussing over my every need. Lastly one that often goes without appraisal and can be flawed on occasion… the Australian health care system. I truly believe that I am blessed to have access to the Australian health care system although there is always (definitely) room for improvement.
After seeing several gynaecologists with no progress or to no avail I have been fortunate enough to find someone who has taken the time and care to help me more than I could have ever asked for. The care that I have received from my Doctors and allied health care team over this past year has been something out of what to me I imagine a fairy tale would be like, no Disney story but still a pretty big deal. Being made to feel as though my pain and experiences are very real and valid was truly all I could ask for after not being taken seriously for far too long. Thinking how far I have come in terms of my own management and treatment thanks to all of the above mentioned people before having my operation is something I am proud of, even more so now that I have persevered long enough for some answers and of course, my shiny new label!
Knowing very well there is no cure for endometriosis and this is not the end I still see this as an enormous step forward for me personally.
I anxiously look forward to the months ahead to see what difference this will make to my life, although I’m not blissfully unaware about the reality of this, I am low key (not low key at all) praying it will have positive outcomes for me.
I have always been well aware that a diagnosis is not what validates my experience because the pain, the illness and everything that comes along with it is all very real! At times this has been a personal battle of mine to remind myself.
Finally having that clarification I have so desperately ‘needed’ and somehow, it’s only now I can honestly understand more than ever that everything I have felt was just as real last week as it is now… Except I have a brand-new label which I am still not sure how I feel about.
A diagnosis or label should not be what validates ANYONES experience, no matter how much it may vary or differ. Knowing that 1 in 10 women experience similar signs and symptoms to myself, with the diagnosis time for endometriosis is currently taking 7 – 10 years I felt encouraged to share this even to those who may roll their eyes or who may have already stopped reading.
If you are to take something from this please be mindful when sharing unsolicited advice, normalising symptoms for other people, making offensive comments or offering that magic Panadol to fix all of the problems (if you get it, you get it) because unfortunately that is not always the most kind or appropriate response. Usually these do come from a genuine and caring place, to all the good eggs in my life (you know who you are) thank you! From my experience this is not always the case, and to those people one last time… I told you so.
Below are some links that were helpful for me to understand what on Earth
endometriosis actually is.