My endometriosis story

Why early conversations matter

My endometriosis story

Introduction

I have always been hesitant in bringing much of my personal life into my professional world. Besides being outgoing, I am a very private person so this blog is pushing me out of my comfort zone. However, after spending many hours with patients, friends, and family members also living with endometriosis, I felt it was time to share my own story and experience, in the hope of raising awareness and promoting autonomy, particularly for young girls who may be experiencing symptoms.

My story is a very positive one. One that includes parents who I was able to communicate openly with and ask questions of. An ex-boyfriend who, even as a teenager, was super supportive and understanding. And a GP who validated my concerns and symptoms and promptly referred me to a specialised department within the Royal Hospital for Women. Yes, in Sydney that exists! A whole hospital for all of our wonderful complexities 😊.

Early experiences with my menstrual cycle

My story begins as many with endo: my menstrual cycle. I was very early to have my period, so, as many young girls I was very embarrassed to discuss it with anyone, even when it was really painful. I would regularly have a couple of days off of school per month due to pain, or just struggle through the day and come home exhausted. But as a kid with way too much energy, I don’t remember it affecting me so much until I got into high school.

When symptoms became more severe

From 15 years onwards, I started to develop heavier symptoms. Extreme pain (at times leading to hospitalisation) resulted in fainting or vomiting. This pain was one thing. Then I also developed pain during intercourse, as well as difficulty using tampons, wearing tight clothes and generally feeling uncomfortable with my vagina. Thankfully, I had a very understanding and supportive boyfriend at the time. As months passed and symptoms did not, of course it started to affect our relationship. Still, I did not want to tell anyone.

It was also during this time that I began to have a lot of injuries, primarily from my body changing and just not keeping up with what I wanted to do. I remember feeling stiff, old, and constantly in pain everywhere, with a lot of acute and chronic injuries. I would cry to my mum wondering how I would live to be old if this was what I already felt like as a teenager. It sucked.

Opening the conversation

Thankfully, my Dad opened up the conversation one day. I seem to remember both my parents already sort of knew about the period pain and other complexities. Perhaps they had sensed something else was not ok. Anyway, my Dad and I started this conversation where I said that sex was extremely painful, and he then said we should chat to my mum. From there an appointment was booked quickly with my GP, who in turn quickly scheduled me into the endogynecology department at the Royal Hospital for Women.

By the time I was 19 years old, I had had laparoscopic surgery and was having regular appointments with a pelvic floor physiotherapist. I was also working with my partner at the time on having positive and joyful sexual experiences and changing some lifestyle elements to keep me active in an energy-inducing way. This is also when I deepened my exercise practice, and was lucky enough to be exposed to some incredible exercise therapists and Pilates instructors to support me along my journey. I learned a lot! How to build my strength and capacity in a way which supported me and my needs, without running me into depletion mode. This was VERY important for me and my system.

Reclaiming an active lifestyle

Fast forward to 24 years old and I was pain free. No back pain, minimal period pain, injuries almost non-existent. I was training regularly, able to run 40 km per week (something I had thought was impossible). I was traveling and loving an active life. I also always had this doubt I would be able to have children due to the infertility risk – which I was very fine with. However, at 29 I fell unexpectedly pregnant with our first little one, and a short year after she was born, I again fell pregnant with our second.

As I said before: my story is a positive one. As with all chronic health solutions, it is multifactorial to where I was born, the support systems I had around me, the mindset that I have myself and also pure biological luck. However, there is no hiding that early intervention, open conversations and validity in my experiences as a teenager were vital elements in this happy story.

Why awareness matters

Since then, I have been shocked to rarely hear another story like mine, one with a speedy diagnosis and probably more shocking, health professionals not validating women’s concerns and experiences. How little is communicated about lifestyle elements which can have a significant impact on the whole health spectrum of women living with endo. I guess this is how I developed a passion for connecting with these patients and women’s health generally – not only have I got the knowledge, but also the lived experience, and the power the right health professional can have at the right moment.

If you have a daughter, a friend, a partner, a patient: open up the conversation. It all starts there. We should not shy away from our menstrual cycles, or shy away from important symptom-inducing events such as sexual intercourse. Early intervention is so important and can have lifelong affects. I will be forever grateful for the village I had around me back when I was a teenager to support me when I needed it.

Let’s start a conversation.

Written by Katina McCulloch
Edited by Lien Stas

Disclaimers:
– No AI has been used in the creation of this blog.
– This site cannot and doesn’t contain medical/ health advice. The medical/ health information is provided for general informational and educational purposes only and is not a substitute for professional advice. Accordingly, before taking any actions based upon such information, we encourage you to consult with the appropriate professionals.

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