This week we sat down with Alice to discuss her endometriosis journey and why she wanted to use her platform to spread endometriosis awareness in Aotearoa.
Alice Taylor is currently competing on Masterchef New Zealand and was 21 when she was diagnosed with stage three endometriosis, adenomysis and painful bladder syndrome.
How did you discover you had endometriosis?
I was 21 when I was diagnosed with stage three endometriosis, adenomysis and painful bladder syndrome.
Ever since I got my period, I experienced a lot of symptoms that just got more and more, worse and worse. It started with blinding period pain, heavy periods, and having to pee heaps. When I went to University that’s when the symptoms became even worse, as my lifestyle changed and I became sexually active. Again, I accepted the pain and didn’t think too much about it until I started flatting with someone who would soon become one of my closest friends. She told me that she had endometriosis- this was the first time I heard the word. She described her symptoms and they were so similar to what I had been experiencing for years.
For years I had been going to the doctors and specialists for problems I would later find to be related to endo, but no one figured out that it might be endo. That was until I went to a bladder specialist for bladder pain, and she referred me to a pelvic physio. She said that she thinks I need to look into if I have endo. This physio and my friend changed my life because if it wasn’t for them I don’t think I would have been diagnosed. By the time of my surgery I was is constant chronic pain, and it had become honestly almost unbearable.
Did you know anything about endometriosis before your diagnosis?
Yes!!! I am an avid researcher so after talking to my friend and my pelvic physio I was googling away. That was positive and negative because endo looks different for everyone and there is also a lot of negativity online about endo. Also management of endo looks different for everyone as well.
What was your diagnosis process like?
The months leading up to my diagnosis were possibly the worst months. I was in so much pain, waiting out for this surgery, wanting an answer for why my body was feeling this way for years and years. When I woke up after my surgery and my mum told me I had stage three endo, I literally cried tears of relief. I was so happy to finally have an answer and validation for how I was feeling physically.
How has endometriosis affected you (physically, mentally, spiritually etc)?
Oh my word, where do I start! Endo had affected me in every way!
It’s taught me to be more understanding, to listen to people when they say they are hurting, and to be kinder to my body.
I’ve had to accept that I can’t do some things that others can do more easily. I can’t work out super intensely because my body can’t handle it. I can’t drink as much as others because I will flare up. Sometimes I will be too uncomfortable to socialise, to be intimate with my partner and that’s okay too.
Physically, I have to manage my endo every day. I was also diagnosed my adenomyosis and painful bladder syndrome, and also experience neuropathic pain, so I have management for that. Some things have worked, some things haven’t, it’s constant trial and error, and that’s okay.
Socially, my diagnosis corresponded with my break up.
I have learnt to stop feeling shameful for my body and blaming my body for certain things, like my breakup! It sounds weird but I’m sure many of you will relate! I have maintained and only kept relationships that are understanding and supportive during the good and the difficult times. The emotional side of endometriosis has actually been the hardest for me to come to terms with.
It’s also given me a bigger sense of purpose! That if I have a platform, I can talk about endo and help others out there.
How has endometriosis affected your relationships (friends, whanau, colleagues, partner etc)
Endometriosis really showed who were the best, most important people in my life. Also, my break up and endo diagnosis were intertwined with each other which was an incredibly difficult thing to deal with and something that took a long time to work through.
How has endo affected your professional endeavours?
On MasterChef, not only did I have to focus on cooking my best but I also had to deal with daily flare ups. Endo stops me from sometimes being able to work. At uni sometimes my bladder would be so bad that I would have to miss 1 hour long lectures. But I have found professional spaces that are understanding and that is such a blessing. I am determined not to let my endo affect my goals!
Do you feel that there is a stigma attached to endometriosis?
Yes yes yes! Endo concerns all the taboo topics people don’t like to talk about – poos, wees, sex, and fertility! If people talked about symptoms more openly people would be diagnosed more quickly and experience less pain. There is nothing to be ashamed about, and it’s time that society started to talk openly about endo. I can feel that change happening and I’m excited about it!
What is advice you wish you heard at the start of your endo journey?
Listen to your body!!!!! and you are not alone. A diagnosis can be relieving but also brings a lot of other emotions, and there are so many spaces (like endo nz) which will support you through that journey.
How do you think endometriosis is currently viewed in NZ and society worldwide?
I think it’s slowly becoming more talked about and widely known which is great. However I think it still needs to be taken more seriously and supported more in every capacity(whether that be from work places, from the government, research etc). I am optimistic though!
Why did you want to share your story to spread endometriosis awareness?
Because it was a very brave friend who shared their story that led to me being diagnosed and living a very different, more positive, healthy life. If I had heard about it earlier I would have been diagnosed earlier. The best way for to be diagnosed and feel less alone is if they as well as friends and family know about it. Therefore I want to talk about it!