My name is Sophie. I am 21 years old. I had my first exploratory laparoscopy at 15 years old after going to the emergency department for a burst ovarian cyst. I was diagnosed with endometriosis, adenomyosis, interstitial cystitis and PCOS. I have had countless treatments to try and lessen the pain; multiple surgeries, ketamine drips, magnesium infusions, cortisone injections, acupuncture, hormones and an IUD mirena, none of which have helped.
In year 11 I dropped out of school, my attendance was so low and I spent the rest of the year in and out of bed. I eventually got a job but could only manage to work 1-2 days a week. When people asked me what it feels like to have endometriosis I would think back to what it was like when I first had a period. I would tell them to think of their own experience with period pain but then multiply it by 100.
After trying so many treatments with no success I was put into the “chronic pelvic pain” category where I felt like I was being treated as if I were in palliative care. I once had a doctor tell me that being on morphine would "improve my quality of life". I felt like I was being treated like someone’s pet who was nearing euthanasia. I was put on an S8’s permit and was given, codeine, morphine, oxycontin, valium and anti-inflammatories because no one was sure how else they could help me.
Now, I am 21 years old. Multiple surgeries and treatments later I have started on zoladex injections once a month which is an injection that basically puts you into a chemically induced menopause. It is definitely helping. I am now working full time as a veterinary nurse. It has been life changing.
It is a weird feeling being 21 and getting hot flushes, mood swings and terrible migraines. The migraines are absolutely blinding but if I compare it to what my pain was before I started the injections I realised that the migraines are a small price to pay for such an improvement in my endo pain. After 6 months on zoladex they come off a private script, meaning, an injection that is costing me 38 dollars a month is going to cost between 350-450 a month. Having endometriosis effects me deeply and constantly. Emotionally, physically and financially. I can now smile, go to work and hang out with friends and family but a lot of people don’t understand the struggle that goes into undertaking everyday tasks. Endometriosis is debilitating. I count myself so lucky that I have a family that has supported me through the last six years, I could not have done it without them.
My family have always supported me. But this meant my parents driving me to countless appointments, financially supporting me, my grandparents stepping in when my parents couldn't be there. The hardest part is my younger brother not completely understanding why I am always in such a huge amount of pain.
My message to my doctors would be; I know there is not a magic pill to fix this, but there will be something. Please keep trying. My message to other people; I don't expect you to understand the pain I am in. I know you don't know what it feels like. But imagine if the roles were reversed. If you had this pain for five minutes of your life you would think very differently.