Endo and Me

I was in my mid-twenties when I started getting debilitating abdominal pain. I also started suffering from panic attacks and anxiety became a daily part of my life. I saw several doctors who all told me to ‘lose weight’ or ‘change your diet’, which I would try and fail and then be too embarrassed to go back to the doctor because I was ashamed. I would push through the pain, make up excuses as to why I was taking days off work, and I lived in a constant state of financial stress, guilt, anxiety, and fatigue. I would be pain free for some cycles and would lose weight, feel great and then BAM… panic, pain and fatigue would be back, and all my hard work would be undone in a matter of days. I just couldn’t understand why I was so anxious, why it was so hard to maintain motivation, and why I just felt fatigued all the time. I was living two lives. To the outside world I was happy, extroverted, and hardworking; but the real me was someone I didn’t recognise.

Fast forward to the present, and I am now 34 and 55 days away from my first surgery. I have Stage 4 endometriosis, adenomyosis and polycystic ovarian syndrome. My bowel is adhered to my uterus, as is my left ovary. I will be losing my left ovary and fallopian tube and will more than likely be losing my right tube as well. I may also need a bowel excision, depending on how deeply the endo has infiltrated my bowel. I have over a dozen different cysts, growths, and nodules that I will be having removed. I have limited fertility and am about to start the process of egg retrieval prior to surgery. I am a single woman, and never thought that I wanted children, but to have that option potentially taken away from me is heart breaking. I have had 6 injections of Zoladex and am now on HRT due to the significant medically-induced menopausal symptoms. 

I have been lucky enough to keep working throughout all of this as a high school youth worker/counsellor. At this stage of my life, I have been able to afford the additional medical costs that come with this condition, especially as I live in the country and every specialist appointment means I must take a day off work to get to Adelaide. My dream of buying a house will have to wait a few more years, because IVF is very expensive. 

I have recently had two students diagnosed with endo, and I am so thankful that they won’t have to endure what I have over the years.

I still experience panic attacks but they are more manageable now that I have a name for them --medical trauma is real. I have an amazing support system, a supportive workplace, and an incredible medical team; the trifecta that all of us Endo Warriors need.