Andy was diagnosed with Endometriosis when she was 23. Now 29, Andy hasn’t let her diagnosis slow her down: She’s earned her Ph.D., is always active and continues to increase her physical activity. She also loves to bake and spend time with her family and fur-babies on the coast of Australia. Her positive attitude is an inspiration!
Andy’s Journey: I was diagnosed with endometriosis in 2008, during the first year of my PhD at the age of 23, after five years of severe pain and being bounced around from one doctor to another. Some doctors told me I was overacting and that it was “just period pain”, whilst one doctor told me it was PCOS. From the age of 18 I was taking Yasmin for the control of a few cysts a scan had found on my ovaries at that age. However Yasmin did nothing to control my pain and in fact after five years I developed more cysts and horrible headaches.
My diagnosis came when I went to a Professor rumoured to be a specialist in disorders of nulliparous women (women who have never had children). I went to him clutching my ultrasound of 26 cysts on my right ovary and 12 on my left. “That certainly is impressive young lady, but that’s not PCOS!” His words were music to my ears. Finally somebody who doubted my previous diagnosis as much as I did. I interrupted Yasmin and he scheduled me for an exploratory laparoscopy, explaining to me that what he suspects I have cannot be imaged. He suspected endometriosis of course.
Three months later I had my surgery and his suspicions were confirmed as stage ii-iii endometriosis. Surprisingly, I was ecstatic! I finally had a name associated with how I was feeling, other than “awful”. I was glad to finally know what is wrong with me, but I was soon to find out how hard what I had was to control. Following my diagnosis the endless trial and errors of treatment began. I trialed a few other tablet form contraceptives but they sent me into a deep depression I never knew existed. I am usually very happy person and the way these pills made me feel was scary. After a year of struggle I finally stopped taking the pills and had the Mirena implant inserted under full anaesthetic. Unfortunately the implant was never placed properly and it slipped and implanted itself into the side of my uterus (something I will discover only after I had it removed). The thing that was intended to lessen my pain now made it worse.
My personal life was also a living nightmare. My boyfriend at the time left me the day of my investigative laparoscopy, because he couldn’t deal with my pain anymore. I was living two hours away from my only support group (my mother and father) and I was struggling to complete a PhD in ironically enough, drug delivery. At the end of 2009 I met my now husband who tried to the best of his ability to understand what I was going through, although most of the time he didn’t know what to do. At times he was too afraid to even touch me.
As the year progressed my pain intensified and I was having sharp pains in my abdomen on a daily basis with some attacks leaving me clutching and my stomach on the ground. The pain was sharp and intense that finally I couldn’t take it any longer and drove myself to my doctor’s clinic which was two hours away and asked him to remove the implant. I went hormone free after the Mirena incident and guided by a local doctor I started taking NSAIDs on a daily basis to prevent attacks. In 2010 dissatisfied with my medication regime I sought out another endometriosis specialist who then performed my second laparoscopy. She also convinced me to consent to have the Mirena implant placed again however this time under laparoscopic guidance. Whilst the recovery was no walk in the park and it took around six months for my endometriosis symptoms to settle I must say that this was the best decision I could have made. The Mirena implant gave me three years of normality. Whilst I still had some pain now and then it was nothing compared to the hell I had been through before and it allowed me to enjoy my life knowing that there was such thing as good days.
Unfortunately after three years and a half of Mirena my symptoms started coming back more often with their pain intensifying over time. This is not unusual as the amount of drug delivered by the implant also drops after three and a half years, therefore suggesting a drop in efficacy. In short, it’s time for a new Mirena and I have scheduled my replacement on the second of February this year, to be done under laparoscopic guidance by the same surgeon I had used in 2010. She will also be looking to see if any new endo has grown or if any scar tissue requires removal.
That’s my endo journey in a nut shell. There are aspects of it such as my chronic gastritis thanks to the many NSAIDs taken over the years, but I don’t like to dwell on the negative. My endo journey has taught me many positive things and I prefer to concentrate on these instead. It has taught me that there shouldn’t be room in your life for people who find you inconvenient because of a condition that is out of your control. It has taught me to savour the good days and to make time for myself. It has taught me how precious my health is and has fuelled my dedication to exercise. My endo has taught me to get out there and life live to the fullest, but it has also taught me that it’s OK to sometimes spend the day in bed because that’s what my body needs. I love myself, my life and my body as broken as it may be. I deal with the things I can’t change as best as I can and I change the things I have. I surround myself with what I love and I smile every day no matter how I feel. On a personal level I am just plain grateful for all I have. I graduated from my PhD in 2012 and landed a dream job straight away. I married my wonderful husband last year, and we live an idyllic life in a little coastal town close to the ocean with out two dogs. His son visits us sometimes and although we don’t plan to have any children of our own, our life is perfectly complete.
Words of Advice for Us: Live every day to its fullest, learn that your health is worth fighting for and it should never come second. Smile, shine and persevere!
The Last Word: I would like to share with other endo warriors my thoughts on health, fitness, nutrition and living life to the fullest despite suffering from a debilitating condition. With this intention I have just created a blog which I would love for other endo sisters to follow: https://endometriosiswellbeing.wordpress.com/. Thank you for reading and keep smiling!
If you wish to contact Andy, you can follow her blog: https://endometriosiswellbeing.wordpress.com/
I want to send a special Thank You out to Andy for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. Thank you!!! Andy, thank you so much for sharing not only your journey, but your amazingly positive attitude and encouragement! Congratulations on your outlook and making the most of what life has handed you! You truly are an inspiration!
And if YOU would like to share your story, please contact me. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.
Yours, Lisa.
Bloomin' Uterus 