"Endometriosis - It Was Me": Renee's Story
By Renee Davidson
Hi, I’m Renee and I am 19 years old. I have been battling with Endometriosis and IBS since I got my first period when I was 11 years old.
I received a diagnosis for Endometriosis in March this year when I had laparoscopic diagnostic and exploratory surgery. Since then, I have been striving to empower myself and others through advocacy, education and support. I have recently created a platform on Instagram (@endo.tings), with the intention of creating my own community for people to come and discuss periods, reproductive health and conditions such as endo, adeno and PCOS.
My journey with endo starts back in 2012 when I was a little grade 5 kid (who btw was already getting her underarms and legs waxed because she developed early). By then, I had already worked out that I had IBS. It was weird though – it was like one day a switch flicked and I all of a sudden couldn’t digest dairy or gluten without shitting myself. Later, I would find out that this was a huge red fag for endo and for IBS (which often both come hand-in-hand).
When I got my period for the first time, it was a 37-degree day in November. I was sweaty. I was scared. It was yuck. I remember coming home from school, sitting on the toilet and looking down to what looked like a murder scene in my dunny bowl and just bursting out in tears. I had always been educated on periods and I knew why it happened and I knew to expect it. But 11 years old? I was a baby.
Thus, began what would be a life of pain, flakiness in social situations/at work, anxiety and surprise visits from Aunt Flo whenever she felt like it. After I had my first period, it didn’t come again for probably 3 months. It was so sporadic; other times I would have my period for a whole month. My mum said it was normal for young girls not to have regular periods – and she’s right, your period doesn’t regulate straight away. But, when I got to 15 and I still didn’t have regular periods, I knew that something was up.
When I would get my period, it was literally the worst thing ever. It would go for 8 days, just full throttle the whole time going through like 6 night-time pads every day. I spent so much time in sickbay at school with a heat pack in tears just waiting for someone to come and pick me up. And what’s worse, my IBS seemed to like to spark up whenever it wanted as well. Because of this, I developed a really unhealthy relationship with food. I literally was just afraid to eat because I didn’t want to have the runs or be constipated or whatever my body felt like being that day. This caused horrible anxiety for me because I was literally thinking about whether or not I would have an IBS flare up all the time.
I really started to notice that something was wrong when I started to get IBS flare ups even if I hadn’t eaten anything that I wasn’t “supposed to”. My periods started to get worse and worse as I got older. When I was 16, I went on a trip to China with my school. I hadn’t had my period for 6 months before that trip, and I got it the day we arrived there. I pushed through the pain because I didn’t want to waste an amazing experience, but that was hard. As I started to get my period again, I started presenting even more symptoms. My attendance at school dropped so low and I legitimately couldn’t move when I had my period. Not to mention, I’d also have diarrhea the whole week leading up to it. Nothing would shake the pain. It was probably the worst year of my life in terms of my health. I also had sex for the first time that year, and holy crap I have never felt pain quite like that. It was like someone was dragging a knife from my belly button and into my back. It was not supposed to feel like that. I thought maybe it was because I was young, but as I would find out later, I actually had vaginismus, and decreased mobility in my pelvis due to deep infiltrating endo on my pelvis.
My friend’s mum knew about all my symptoms and how I had IBS and also had all these other symptoms, and one day she said to me “have you heard of endometriosis?”. I had heard of it briefly but I had no idea what it was. That night, I looked it up and oh my god – it was ME. It was like I had found the pot of gold at the end of the rainbow. I felt understood and I felt validated. Of course, this whole time I had been pushing my doctor to send me for different kinds of tests to see what the hell was causing my pain, but once I read about endo I told my doctor straight away that I knew I had this.
When I was 17 I decided to go on the pill because my periods were so heavy that they had caused an iron deficiency. My pain lessened on the pill mostly because I was able to skip my periods and decide when I would have a period. But the endo was still growing, it was just a bit masked. The pill messed my body around quite a bit, I put on weight and I was really emotional and moody, but it got me through year 11 and 12. The gyno I saw told me I had vaginismus and also put me on the public wait list for a lap. By the end of year 12, I had quit my job at Woolies because I was sick of calling in sick, and my attendance at school had dropped to about 70 per cent. The fatigue and pain were real.
After school finished, I couldn’t ignore my pain anymore. There was nothing else for me to really resort to. I got into Midwifery at Uni but deferred, and so 2020 was supposed to be my gap year (but we all know how that’s turned out). So, this whole time I haven’t been able to distract myself from the pain. I had to address it. I have had to advocate for myself and just keep fighting until somebody took my pain seriously. I wanted to fight back. Endo had taken so much from me; my freedom, my social life, my sex life, the ability to travel whenever, school, my energy. And this year, I just decided that I wanted all of that back.
Due to COVID, my surgery was pushed up from July to March this year, and I was diagnosed. I was rattled with anxiety because the only other surgery I’d had at this point was a colonoscopy, and I hated the idea that people would be poking around at my body while I was asleep. When I woke up from surgery, the surgeon told me I had deep infiltrating endometriosis on both sides of my pelvis, on my Pouch of Douglas, and on my rectum. Neat. The recovery from this surgery was really hard. I couldn’t walk properly and I couldn’t shower myself or even sit up for the first week post-op. I tried to start a new job 5 weeks post-op and quit after the first shift because of the pain. I’m trying to look on the bright side in what’s been an awful situation for so many because of COVID - the restrictions have meant my family and my boyfriend were around to look after me, for which I am so grateful. I had only been with my boyfriend for 3 months at this stage, and already he was such an amazing support. Waking up in the night whenever I needed him, getting me a tea or a heat pack or literally anything I needed. When you’re in pain and sick all the time and they’re still around, that’s how you know they’re a keeper.
After I had my first surgery, I really started to see the impact that having a chronic illness can have on the people around you. I can’t imagine being a parent or sibling and having to watch my kid be in pain all the time. I reckon it’d be pretty heartbreaking. My family sees what I really go through because home is where I don’t hide things. At school, I was a completely different person. At work, again a different person. Anyone who meets me for the first time would have no idea that I am sick. I always get the comment “Oh, but you look so good for a sick person”. I never know what to say to that.
I decided to post about my endo surgery on my own personal Instagram because I wanted to raise awareness and also just share this massive part of my life with everyone. I was tired of hiding it. A little while later I decided to create an Instagram account (@endo.tings) dedicated to endo, and spent a lot of time in iso educating myself on my illness.
Once Covid calmed down a bit in Melbourne (initially), and surgeries were back on I booked mine in straight away with my own private surgeon. I had excision surgery 3 weeks ago (June 2020). My recovery was much better than my first lap in terms of pain, however, I was vomiting so much. I also couldn’t pee for about 4 hours and so they had to put a catheter in me before I could leave. But I went home the same day. My specialist was able to remove everything, and I am yet to have my post-op appointment. I am slowly getting back into exercise and work but it's hard. And I feel like I am starting to experience a whole lot of new symptoms that were kind of just lingering in the background for a long time (ie. nausea, constipation, bloating, brain fog, headaches), but are now amplified. I know that surgery is not the only element of treatment for endo and I do need to take a multidisciplinary approach, but I am so glad that I have been able to have my surgery and I’m grateful that I have the opportunity to put my health first.
Because of my experience with chronic illness, I have become really passionate about empowering others and helping people to advocate for themselves. If you want to learn more about my experience with endo, IBS and vaginismus, follow my page on Instagram.
You can follow Renee’s Instagram here.
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