Hundreds of specialist appointments, four surgeries, two mirenas: managing my endo pain.

Updated: Nov 13, 2019


 

I was diagnosed with Endometriosis (Endo) when I was twenty.


Luckily for me, it was hereditary, so I was diagnosed fairly quickly. I spent a lot of time researching the condition as I was quite unaware of what it actually was. At this stage, I was in my first year of uni and becoming really sick - suffering from extreme weight loss and chronic pain in my abdomen, back and chest.


Unfortunately, one in ten women suffer from this horrible disease, and it is only now being acknowledged as a chronic condition and a substantial health burden. There are four stages of Endometriosis, and every woman experiences it differently to the next. Endo occurs when the tissue that lines your uterus (the endometrium) grows outside of your uterus, and on other pelvic organs, such as the ovaries and fallopian tubes. In some cases Endo can even spread to other organs in the body. The tissue thickens and bleeds just like the inside of your uterus does during the menstrual cycle. This is what helps the Endo grow and spread to other areas.


There are so many complications associated with having Endometriosis - and yet, there is no cure. Now at the age of twenty-six, I have had hundreds of doctors and specialist appointments, four Endo surgeries (laparoscopies), two Mirena IUDs, and every week I am trying to find new ways of dealing with this condition.


I am one of the unlucky women who suffer from severe pain in my back, stomach, and for a few years now, my legs. I often experience uncomfortable bloating, bowel and bladder inflammation, nausea, a cloudy memory, extreme fatigue, pain during intercourse and excruciating Endo attacks at night. The attacks involve jumping out of bed, quickly taking the strongest medication I have, placing a heat pack on my tummy and an icepack on my back before I faint. The pain often leaves me curled up on the floor in a foetal position.


The Mirena IUD has been my absolute lifesaver. It suppresses my period, which slows down the growth of my Endo, and helps to reduce the pain. I take a lot of pain medication every week: Panadol, Nurofen, and Endone. I use a heat-pack a few times a day, along with magnesium spray and the Deep Heat stick-on heat patches.



These heat patches are THE BEST… but only when you’re at home... because of that old, familiar Deep Heat smell. Yeah, they stink.


I think the hardest part of having a condition like this, is that one moment you’ll be feeling great and within minutes you’ll have extreme pain, which takes your breath away and makes you feel like you can barely stand on your own feet. It’s hard to feel okay and listen to your body. After 6 years with this condition I am still trying to understand mine. Having a condition like this has not only affected my physical health, but it also takes a huge toll on my mental health.


I consider myself a career driven person. I work in a fast paced environment as a photographer and graphic designer. It’s very stressful at times, and when photographing, it can be very physical as I am trying to get into many weird positions to capture the perfect angle. I find working in an area like this is sometimes hard to deal with while having Endometriosis.


I often come home feeling so stressed, that I just cry... or I'm totally unable to move because my whole body will be throbbing.

I nap every chance I get, at any time of the day. On most weekends, I’ll wake up early and be back in bed by 11am. I am very lucky to have a partner that understands and helps where he can. I feel that when you have a serious condition like this, you need someone who can pick up the broken pieces when you can’t. Whether it’s cooking and cleaning when you physically can’t get up, handing me medication, heat packs, rubbing my legs, or just being there to let me know its okay when I’m having a breakdown. I honestly have a very different kind of respect, and reason for loving him.


I feel as though you have to really work on yourself and listen closely to your body when you have Endometriosis. I make sure I look after my body, eat healthy, and exercise regularly. But on the days when I am tired or experiencing a lot of pain, I need to stop and relax and let my body recover... reminding myself that it’s okay to do so.


Earlier this year, my partner and I had planned a trip to Europe. Three weeks before we were scheduled to leave, I was taken to hospital by ambulance, with two ruptured ovarian cysts. I was unable to walk for a week, and it took me majority of those three weeks to recover.

Embarking on our trip after this episode was TERRIFYING! But being in Croatia, on the water, in the sun... and relaxing the most I’ve ever relaxed before; I had not one bit of Endo pain. I was completely gobsmacked.


Since arriving home, I have taken more time than usual, for myself - keeping in mind that I had no pain when I was entirely relaxed. I now plan on taking more regular holidays, and keeping my home life as stress-free and relaxing as possible. At home, I’ve been keeping my distance from my computer and phone. I’ve been reading books, painting, and listening to music. My aim now, is to find another way to ease the pain and in doing so, reducing my need for medication… Starting with yoga and regular massage therapy.


For Endo sufferers: be open and honest about your condition and how you are feeling. And by ‘feeling,’ I mean the pain - and also, how you are feeling emotionally... because prioritising your emotional wellbeing can be instrumental in minimising your Endo pain and enriching your overall health.



For more information and support on Endometriosis, visit https://endoactive.org.au/



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