A personal account of living with endometriosis
Co-founder, Kelsey shares her experience of living with endometriosis.
It’s Endometriosis Awareness month, and in recognition of this, we thought it’s the perfect time for me (Kelsey) to share a personal account on what it has been like living with endometriosis and IBS, to help raise awareness. Please keep in mind while reading this, that everyone’s journey with endometriosis and IBS is highly individual and this is only a personal account.
Early life with endometriosis
As long as I can remember, I have dreaded getting my period. The week leading up to my period was always pain-filled torture and for a long time, I assumed that it was like that for everyone. The bloating that came along with the pain was out of this world and the urgent bathroom visits at unpredictable times meant that social events were beyond stressful.
I would be out shopping with friends or family, then out of nowhere be struck by debilitating stabs of pain that started in my lower back and radiated down my legs, into my knees and ankles. It honestly felt like my joints were going to explode. There were times where I had to hold myself up to stop myself from falling over. Luckily, mum understood what I was going through as she had had a similar experience herself however, when I was with friends it was something that I tried really hard to hide, not wanting to be seen as “different”.
Getting medical help
The number of times I had gone to the doctor to talk about period pains, only to be told that the best option for “fixing it” was to take oral contraception. By the time I reached 23 I had tried every OCP under the sun, most having significant negative effects on my mood. It took me to fight my GP to finally get a referral to see a gynaecologist for further investigation.
My first gynaecologist did a bunch of blood tests and ultrasounds to rule out other conditions. She then gave me an IUD and said it was highly likely I had endometriosis and the IUD will manage the symptoms which, to be honest it did… until it fell out of place one year later.
My second gynaecologist gave me two options; to get another IUD and assume it is endometriosis or to have the laparoscopic investigative surgery to confirm that it is endometriosis and have it removed. In desperation I agreed to having surgery plus IUD insertion. I am so glad that I did. On top of the surgery, I also worked through the low FODMAP elimination diet with a dietitian to find out my food based triggers of my IBS and endometriosis symptoms.
Life post surgery
As a result, over the past four years, my relationship with my menstrual cycle and body has significantly improved. One thing I have noticed is that over time, my cyclical symptoms have changed! It is a timely reminder that conditions like endometriosis and IBS can be moving targets. This being said, endometriosis surgery has been a life saver for me and I am forever grateful to have been in a situation where I was able to access it.
I am also forever grateful for being in the privileged position of having the knowledge and experience to manage my endometriosis and IBS symptoms from a nutrition point of view. In saying that, I am definitely not perfect, there are times where I don’t nail it and suffer for it, but life is worth living and chronic conditions can be a handful to manage at times!
Life moving forward
My aim for this year is to not let my endometriosis or IBS hold me back in my social life. This in itself is so challenging, but I realised last year that it was too easy to turn down social occasions. Especially when eating out is involved, as there is always the fear of not being able to eat anything, or if I eat the wrong thing, would there be a toilet to access promptly after eating?
To my fellow endo ladies – you are not alone and please just know that you are doing your best! Don’t let your endo hold you back from living your life!
Published: 7th March 2023
Author: Kelsey Paterson Monash FODMAP trained Dietitian
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