Annie talks about her Endo experience
I remember my periods being horrible, having to take time off school and just lying in bed in the fetal position, having to wear big night pads during the day. My experience was always horrible however I just thought this was normal. My education around periods was minimal but this minimal education I had was what was normalized by me and those around me.
As I got older, the pain was no longer just happening during my cycle, I was experiencing pain throughout the month. This is when my suspicion rose, and I started to know something was off within my body. I went to the doctors and immediately was dismissed, being told it was normal and even at times being questioned on whether I was telling the truth or just trying to get time off school. The only form of “help” I ever got was pain medication.
The doctors got into my head and convinced me these experiences were normal and its what I accepted. Eventually when I was around 18 I had my period for 6 weeks straight, it was horrific and I couldn’t handle it any longer and I just knew I was being true to my body when I said this wasn’t normal. I went to the doctors and refused to accept anything other then a referral. Finally, I was sent to a gynecologist who diagnosed me with Endometriosis via a laparoscopic surgery.
You would assume from here my journey finally would have gotten easier; however, this isn’t the case. About 6 months after the removal of my Endo I was sitting on the couch and I felt it, I felt that horrific cramping in my lower abdomen and I just knew it was back. I went back to that same gynaecologist asking for help and explaining what had been happening with my cramps. Unfortunately, my pain was diminished, and I was told the Endo couldn’t have grown back that quickly and essentially told me it was all my head. Given she was the specialist I left her office in tears, believing every word she said and walked out thinking I was faking, that what I was experiencing was phantom pain – I truly believed I was a liaR.
However, this experience obviously didn’t rid me of my pain, in fact it got worse! Thankfully, I came across some amazing people in the medical field who encouraged me to believe what my body was telling me and to get a second opinion – so I did. Thank gosh too. Another surgery was performed by a different gynecologist and I am so happy I found him. He believes me, he supports me, he listens, and he educates.
Since then my life has changed drastically and coming to terms with life with this illness was a bit of a challenge, it’s always such a personal journey dealing a diagnosis and all the challenges that come with it. My knowledge of the illness has grown with most of this being self-taught information. This has benefited me hugely and really has made me feel like I was able to retake control of my life again. I often encourage people who are dealing with a similar situation to put in the time to do research. At the end of the day this is your life and the illness is your responsibility to manage. Yes, medical professionals are there to help however view them more as a form of assistance with you being the main driver behind your overall health! Learn about what is going on with your body, become a master on the topic! I have a new found love for fitness and food which I believe plays a positive role in my Endometriosis.
I do truly believe I was given Endometriosis for a reason. I love being a part of the community and helping where/when I can. Being a form of support and sharing the knowledge I have gained makes me so happy. I have a place where I can be myself, be honest and raw and help people – it’s so rewarding.
I’m not sure how to end this piece, I always find it hard writing my story as it’s so much more than a few paragraphs. This life is a battle at times and the challenges are constantly changing. I do want to leave you with encouragement, letting you know that its ok to really feel the emotional pain on rough days. Just don’t let it define you and your life, learn to pick yourself up and keep going.
Have you developed any ways of managing your pain like lifestyle or diet changes?
A mindset change has been hugely beneficial. Not letting myself fall victim to the illness all while being patient and kind to myself when needed. I spent so long being mad or sad and feeling like this wasn’t fair and I truly feel like it just made everything worse! I have had a huge lifestyle change; I am now cautious of what I eat and do. I am aware of the hours of sleep I get and how much exercise I do. I have learnt to be in tune with my body!
What does a typical day look like for you when you were/are experiencing Endometriosis?
Oh gosh, I really can’t put it into a short paragraph as it is never repetitive. I can have days where I can carry on with the assistance of pain pills or I can have times where I am stuck in bed. It’s never the same!
What work are you currently doing with endometriosis organisations or support groups?
Facebook – All About Annie Blog
Facebook private group – All About Annies Endometriosis Support Group
I love being a support person and creating support networks for people to feel included, heard and less alone!
And of course, we need to know…. Are you a fan of AWWA?
I absolutely LOVE my period undies, they are comfortable, are easy to clean and are my favourite way to bleed on my period!