Megan's Endometriosis Story
By Megan Parr
March is Endometriosis Awareness Month, and at QENDO we’re sharing stories from the 1 in 10 people affected by endometriosis in our community. This week we travel to our New Zealand community and meet Meg, who has had a long and eventful journey with endo, undergoing multiple surgeries before being officially diagnosed. Though her endo has been challenging in every aspect of her life, Meg has still managed to achieve the amazing feat of completing a half Ironman - a lifelong dream. This March she is competing again, all while raising awareness for endometriosis - team QENDO is cheering.
Hi I’m Meg and I am 29, with the big three zero just around the corner! I’ve had a relatively long and eventful journey with endometriosis and chronic pelvic pain. I was fortunate in that I knew what endometriosis was from about the age of 15 when two of my close friends in high school believed they had it and had a strong family history. I always thought by the way their periods were described mine certainly weren’t as bad and I had no known family history, so assumed my periods were always normal - just really heavy and long.
When I was in my final year of university I felt something change with my periods. Suddenly they were a lot more painful and the bleeding was heavier again. I went to the doctor and asked if weight loss could cause worsening periods (silly I know!) as I had decided to try to get healthy and managed to lose nearly 30kg while training for a marathon. The doctor wasn’t too sure and put me on the OCP which I didn’t enjoy taking due to side effects, so elected to put up with the periods. Upon graduating university I had put it down to stress with my changing periods and moved forward with my career in the army.
The following year I started developing excruciating abdominal pain brought on by high intensity interval training. This would often see me vomiting or knocked to my knees which was incredibly frustrating. After three or four of these episodes I went to see the doctor and received an ultrasound which showed a complex ovarian cyst. I was referred to a gynaecologist really quickly which I know now is quite rare! This specialist told me that I was experiencing normal period pain and that the cyst would go away on its own although it was possible that it was torsioning slightly during exercise which was the cause of my pain. I was relieved by this, thinking the pain would pass and things would return to normal. In 2016 things took a bit of a negative turn and I was referred to another gynaecologist. This one suspected endometriosis was likely and put me on the list for a diagnostic lap and IUCD insertion. However, before that happened, I was admitted to hospital for pain which was similar to my previous episodes of pain but didn’t go away. I had emergency surgery for a suspected appendicitis however it was deemed to be a ruptured ovarian cyst.
Complex and persistent pain followed this. My pain became daily and was affecting all aspects of life. My specialist at the time said that because the general surgeons had not seen endo then I did not have it. After nearly a year of daily pain I was reviewed by a public gynaecologist who suggested another laparoscopy and changing from a jaydes to a Mirena. This laparoscopy again was negative although the surgeon said to me post op that she thought there might have been something but it wasn’t big enough to be worth doing a biopsy on. The Mirena initially worked wonders, my bleeding which had been persistent for seven months finally stopped and I would have pain for two weeks out of the month. My health returned to being functional. I went to Tanzania to work in rural hospitals and climbed Mt Kilimanjaro, finally doing so many of the things I thought were no longer possible.
My pain returned the following year in an all too familiar way just before I travelled to Nepal to climb to Everest Base Camp. I was recommended a specialist by a friend who had had a recent laparoscopy and found this surgeon particularly helpful and knowledgable. This specialist believed it was endo causing my symptoms but at that stage I couldn’t get funding for surgery and so we elected to try more hormonal medications. With many other stressors in my life and pain once again effecting my ability to be physically active I ended my career in the army.
Starting my new job, I felt things were improving again and I worked really hard to become physically active again and a focus on a good diet which I think did really help. After a year in my new job I elected to have the Mirena removed, thinking it was contributing towards some of the pain I was still feeling and also some anxiety and difficulties losing weight. I had absolutely convinced myself that all my previous pain was in my head and that now I was less stressed that everything would be normal. I trained and completed a Half-Ironman which had been a dream of mine for a long time. Not long after Covid-19 lockdown my periods, which initially had been a dream following the Mirena removal, began to get worse. I once again developed daily pain at various levels as well as changes in my bowel habits, urinary incontinence and terrible fatigue and bloating. A trip to the emergency department for pain made me realise that things still weren’t right. With encouragement from my GP I went back and saw the last specialist I had seen, who again recommended surgery. I put the surgery off until after the Queenstown Marathon as I had been training for that although it was an incredibly challenging build up and ultimately it was not how I had planned the race going. Taking tramadol in the morning before a marathon was potentially a sign!
The Tuesday after the marathon I had my third surgery. In my mind, and still somewhat convinced the pain was in my head and that this would once and for all rule out any disease, I was very surprised to wake up with four incisions. My specialist had said that there had been a lot of endometriosis on my bladder, Pouch of Douglas and my bowel had adhered to my pelvis. Although it is never wonderful to get diagnosed with a disease, to find out that I hadn’t completely lost the plot was a relief!
I am now six weeks post surgery and hopefully will be completing the Half-Ironman again in March and with the hope of doing Ironman New Zealand in 2022.
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