It is a beautiful day in Melbourne and as I sit here welcoming the winter sun I reflect on my experience with endometriosis and how it has shaped my life and provided me with wisdom. Living with endometriosis has not been without its emotional and physical struggles over the years. Chronic pain, mental anguish and infertility struggles have marked a large part of my life. My first period arrived at 14 years old and lingered on for about 2 weeks. It was very painful and I remember questioning if the pain and bleeding would ever stop. I was mostly able to manage my symptoms with pain relief medication however if not taken in time I could experience sweating, fainting, vomiting and severe abdominal and bowel pain. On a weekend away with friends I fainted in the toilet and was later hurt by a friend’s comment that I was just simply ‘looking for attention’.
Episodes like this would be exhausting and it would take me a few days to function normally again. I had approached doctors about my symptoms but was repeatedly told that this was a ‘normal’ part of womanhood. From all angles my pain was being invalidated so I mentally and physically accepted that pain was an inevitable part of my existence. Pain killers became my trusty friends; the only way I could maintain a routine of school, work and social life when my period arrived every month.
While I did not know my condition at the time, endometriosis would play havoc with my intimate relationships throughout my 20’s and 30’s. Intimacy was marked with pain and discomfort rather than pleasure. I had myself believing that experiencing pleasure would ultimately have to lead to the experience of pain. Some days without any explanation and not even during my period my pelvic pain and inflammation would be so intense that I could barely sit down and so began a very negative cycle of thinking and a perception that my body was broken and dysfunctional. At times I think I was quite depressed.
In 2013 on a holiday I experienced severe pelvic inflammation to the point that I went to see a doctor. After 20 years of unexplained pain spanning from approximately 1990, he was the first doctor to suggest having an ultrasound followed by a laparoscopy to assess for endometriosis! I could not believe that this course of action had not been suggested earlier, especially given my age at the time (36) and desire to have children with my husband. I went for the procedure and alas a discovery of advanced endometriosis was found on my ovaries and bowel and was subsequently removed.
This operation and diagnosis marked the beginning of my journey to healing. I finally had an answer to this elusive pain and thus empowered myself to combat the disease through a multi-modal approach. Counselling, physiotherapy, Chinese herbs, acupuncture, diet (reduction in gluten and dairy) and regular exercise (walking and yoga) have all helped me manage pain. While I am not sure if I will ever be 100% completely pain free, I have learned to live with endometriosis and make my health and wellbeing a priority.
I regret that I did not have the confidence to question doctors and seek more answers to my pain over the years, however the disease has ultimately taught me to be kinder to myself and to a better advocate for my own health and wellbeing. My biggest triumph over endometriosis will be when I welcome my baby into the world in about a weeks’ time! As I look at very round 39-week pregnant bump I reflect on the journey and the pain over the years washes away. There was a time where my womb felt so sick and dysfunctional that I never thought having a child would be possible, however with the support of outstanding professionals and a journey of IVF I am well on the way to achieving my dream.
Endometriosis is not just a physical disease it affects women on multiple levels. Our relationships, sense of self, confidence and ability to have a family can be jeopardised by this mysterious disease. It is a serious condition and one that commands the highest level of medical attention and awareness so that woman can enjoy the quality of life they deserve.
Today I am grateful that that awareness of endometriosis is rapidly growing so that women can be diagnosed more effectively and find ways to manage pain. While we place a great deal of trust in our doctors and practitioners to guide us in the right direction, I would encourage all women to be the most trustworthy advocate of your own health and wellbeing; tune into the wisdom of your body, do your own research and be relentless in seeking answers. Reduce stress in your life where possible and be kind to yourself. If you are not satisfied with the answers, seek out alternative opinions. Diagnosis of this disease is so important so that women can set themselves on a path to healing their bodies, especially where infertility is concerned.
I hope that sharing my story has raised some awareness and provided hope that you can overcome the most debilitating aspects of endometriosis with the right professional guidance and a holistic approach to your wellbeing. Sending love and strength to those dealing with the condition. You are certainly not alone and have the power to control your pain, do not let it dominate you!