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Naive Minds: Endometriosis

Ella Shepherd
It's time to talk  Ella Shepherd

The transition from leaving College and entering the world of University has been a time of self reflection.

It's been a time where I’m beginning to understand the nature of the world and that image appears to be everything. I’ve realised the glamorisation of one's image has led to feelings of self awareness and self consciousness. We all overthink our appearances. We all doubt ourselves. We perhaps find it easier to uplift everyone around us, yet we’ve developed a habit of pinpointing and only seeing our ‘flaws.’

In College I believed it was just me who felt this way & kept thinking ‘man, everyone’s so confident and they’ve got it all together.’ I made a very good friend during this time, Abbey, yet when she canceled plans due to stomach cramps I couldn’t help but feel slightly insecure that she was using an excuse as a way to avoid hanging out. I mean of course I hoped she was okay and sent her a virtual hug but I didn’t know what else I could do. I had no idea that trying to understand why these stomach cramps were happening would be a good place to start. 

I began to understand these cramps were just one of the symptoms from an inflammatory disease called endometriosis (nicknamed endo). With a quick Google I found that this affects 1 out of 10 kiwi women. My first reaction was ‘if this rate is so high WHY aren’t we being educated around this disease and others that are also common.’ Talking to Abbey about her experience made me feel so naive. I thought she was making up excuses not to hang. I felt terrible for thinking that way but she understood. No one really gets endometriosis because no one understands it. 

"The seven years it took for me to be diagnosed was so unbelievably frustrating, I knew what I was experiencing wasn’t normal."
Abbey, 23

It’s time we start educating ourselves around chronic illnesses that are affecting our friends and family. When the opportunity to write articles for Tracks96.1 was presented to me I knew this was my chance to spread awareness around endometriosis. It’s time to start spreading awareness on matters that don’t just concern us but concern our friends and family. 

For the purpose of this article I sent Abbey a list of questions about her experience with endometriosis. 
Abbey would you be able to explain what Endometriosis is? 

“Endometriosis is a chronic illness that happens when uterine lining (the stuff that lines your uterus) grows outside of the uterus. It causes painful adhesions that create a whole bunch of real nasty symptoms. It is progressive, so it keeps growing or growing back after removal, and there is currently no cure for it.”

 That sounds extremely uncomfortable, do you experience symptoms other than cramps? 

“Symptoms for me are terrible, terrible cramps both on and off my period. Migraines. Muscle aches. Fatigue. And for a lot of people it causes infertility, I haven’t had to cross that bridge yet, but it is something I have been painfully aware of ever since being diagnosed.” 

 What was it like going to the GP about this? 

I was ignored, fobbed off, told it was teenage hormones for 7 years up until I went to a new GP and she told me that it was probably endometriosis and referred me to a specialist. A week later I was in the operating theatre being diagnosed with stage two endometriosis and having it removed. The seven years it took for me to be diagnosed was so unbelievably frustrating, I knew what I was experiencing wasn’t normal. I knew that other people didn’t go through this. Was I making it up? Was I crazy? I felt so unseen and so invisible. It felt like my pain wasn’t being taken seriously, or that nobody cared about it. I felt like I was yelling at a wall.” 

I could imagine that would be frustrating and in some ways isolating too, feeling like no one understood you and your pain. For those that were in your shoes and continually getting ‘fobbed off’ by GPs, do you have any advice for someone who is experiencing similar symptoms? 

“Definitely talk to a medical professional! Google places that mention endometriosis on their website. Unfortunately, endometriosis is not very well-researched or well-understood by a lot of people in the medical community. So to avoid frustration, call ahead and ask if they have a GP who knows about endometriosis, and if they don’t ask if they know of someone who does.”

Looking back on those years do you wish there was more education around endo?

“Oh my goodness, yes!! I went to an all girls high school and it is WILD to me that I wasn’t taught about women’s health issues. PCOS, vaginismus, endometriosis etc. are all things that I hadn’t heard about until I got involved with the chronic illness support community. They are so common and they affect so many uterus-havers around the world. It would be such a simple way to inform young people of what is a normal period and what isn’t. I also think it is important that not only young women get taught about women’s health, but young men and gender diverse people! Everyone will interact with someone who is affected by a women’s health issue. If people understood what I was going through it would be such a weight off of my shoulders!” 

 What about now? Do you think there’s more awareness around endo? How could it get better?

“For sure! But I still think there’s heaps of room for improvement. There is such a stigma around talking about endometriosis because it has to do with periods and uteruses etc. and that makes people squirm. To be honest, I think we as people need to get over that immature view of things and understand that it’s just a body! I think people speaking about their experience is really helpful, but can be tiring. I think that educating young people about endometriosis would raise awareness hugely. If we learnt about endometriosis when we learnt about puberty at age 11/12, it would mean young people would be armed with the knowledge to know from very early on whether or not they are experiencing a normal period, or whether they may need some medical intervention.”

Abbey endometriosis is a part of your everyday life. Have you had a few years finding the right people to surround yourself with, they’ll understand that you might need a few days off? How important is it to do this?

 “This is easily the hardest part (other than the physical pain) of endometriosis. You can’t always choose who is in your life! I have had employers who have been awful to me about my experience, I even had one boss ask me to change my surgery date because it was causing them scheduling problems. My current boss is amazing. I have had pretty awful people accuse me of faking or pretending to get sympathy or to get days off from work or uni. Those people are no longer in my life. I have managed to surround myself with some pretty understanding and empathetic people. My husband in particular is just the most incredible support system. He really understands the illness and is there to do absolutely anything needed to make my life easier. My parents have also been there from day one advocating for me and supporting me the whole way. I am really lucky in the people that I surround myself with. If I didn’t have them I would probably just be hiding under my blankets not ready to face the world.” 

I know we have already talked about this together but hearing your experience again is pretty emotional. You and everyone else who deals with their chronic illnesses are so brave. Do you have anything else to add? 

“This disease has truly taken over my life, and caused a huge loss of life quality. There are times where I just continue on and can get through things and can go to work despite being in pain. Then there are times where my whole life is controlled by this small amount of tissue that is growing in the wrong place. I can’t go to work, I can’t socialise, I can’t even get out of bed to make myself food. I have to be on medication that puts me in a fog and makes me feel like a zombie, and suddenly my whole life feels like it isn’t my own. If you know someone who is dealing with endometriosis, please just give them the biggest hug and tell them they are doing an amazing job and that they are strong and awesome! Try to educate yourself about endometriosis. Be understanding if your pal with endometriosis falls off the face of the earth for a little while, they are using all of their energy to fight hard against an invisible illness.”

And there you go, a glimpse into the life of someone who has endometriosis. Abbey is just one of the estimated 120,000 Kiwi women who have to battle with this illness daily*. If you or someone you know are experiencing similar symptoms find a GP that specialises in endometriosis or visit nzendo for more information. 

Stay safe & stay educated.

*stat from nzendo.org.nz


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