Tracey's Endo Journey

Endometriosis.... it is a word that most people have heard of either on the news or through colleagues, however actually understanding the condition is a whole different ball game. March is Endo Awareness Month and for those of us who have struggled with this condition can share our stories in an attempt to not only spread awareness, but to hopefully ensure that the younger generations have so many more resources available to them. So as vulnerable as it feels, this is my story. 

I'm not sure that lucky is the right word, but unlike many other women, my endo journey did not start until after I had my second child at 30 years of age. Prior to this, I was plagued by heavy periods, cramps and hormonal migraines. I was always able to control these symptoms through use of the contraceptive pill however after my daughter was born, due to unrelated issues, I was no longer able to take the pill. 

It was around this time that my symptoms greatly increased. Like so many of us, I attended so many GP appointments and was told on every occasion that it was 'normal'. Eventually I found an understanding GP who referred me to a local regional gynecologist who assured me that the only way to fix the problem was to have a hysterectomy. To say it was confronting was an understatement. By this point the pain was no longer just once of twice a month but daily. So I agreed to the hysterectomy at the age of 34. After the procedure, the gynae confirmed that he had found endo in numerous places and that he had burnt it off in an attempt to stop it returning. They also sent my uterus off for testing and it was confirmed that also had adenomyosis which was resolved through the hysterectomy. 

Recovery from the surgery went well and the gynae had advised me just to carry on as normal as I should be 'cured'. Little did I know that it was only beginning. Roughly six months after the surgery, the small niggles of pain started to return. I thought no way, I'm cured!! After 8 months of ongoing pain, I returned to the same gynae. He advised me that because my ovaries were still functioning, there was a chance the endo would return. I was devastated. Six months of ovary suppression coupled with HRT were next on the list which did help. However due to regulations, he could not prescribe the medicine for longer than a 6 month period. So again the next step was another surgery to again burn off any endo present. This cycle continued for roughly for the next 4 years, with a surgery each year. Eventually my left ovary was removed as it had been damaged beyond repair by the endo.

After my ovary was removed, the impact it had on my overall health was nothing short of disastrous. I had daily hormonal migraines and before long..... the pain returned again! This was such a dark period in my life. It felt as though endo had taken so much from me and nearly 6 years on, I was actually in a worse position health wise then I had ever been before. It had impacted every part of my life, including Love Daphne. I was constantly cancelling any social events, school events and literally did the bare minimum. My mental health was at an all time low and my relationships with those closest to me suffered the most. In the last appointment with my gynae, he suggested I try meditation as the only other option left was to remove my right ovary. I felt so helpless. 

Eventually I took matters into my own hands and requested a referral to a specialist gynae in Sydney on the advise of some AMAZING ladies in our Love Daphne community! Well I can say, that was such a turning point for me! My very first appointment lasted for over an hour. He took a complete history and although he was super careful with his wording, I could tell he did not agree with the previous care I had received. I also learnt so much in this appointment! I will never forget how he explained the growth of endo to me. He said 'it's very similar to how weeds grow. If you mow them (similar to burning the endo), they grow back quickly and can even spread. However if you dig out the root, they cannot grow back'. It was such a lightbulb moment for me and it also triggered a slight breakdown. I could not get my head around that not only were the previous surgeries never likely to resolve my pain long term, but the years I had wasted in the same cycle. Not to mention the financial cost that also went with it. It was such a hard pill to swallow.

After I had given myself time to process the news, I decided to go ahead with hopefully a final surgery with the specialist gynae.  On the day, he also had a bowel surgeon present as he was unsure what they were going to find inside. Luck was finally on my side! Not only were they able to successfully remove all of the endo at the root, the bowel surgeon was also able to remove multiple bowel adhesions that had been caused by the previous surgeries. The relief I felt when I woke up and heard the news was unlike anything I have ever experienced. 

I am currently 10 years into my endo journey and for the very first time, I am so positive about the future. I am so passionate about sharing my story in the hope that it might just save someone from going through something similar. If you are struggling with endo and feel lost, please remember that there are so many of us that have been on a similar journey and positive outcomes are possible! Find your voice and if you can't, find someone who will be your voice for you. Endo can impact every part of your life and the more we open up about it and share our experiences, the more hope those who follow us will have.