Welcome to the Punky Pins Blog! For the month of February, we want to use our platform to help spread awareness and help educate both ourselves and everyone else on different Chronic Illness' and Disabilities.
We have been speaking to our lovely Punky Pins followers with different illnesses/disabilities. This week we spoke to Terri, a talented Macrame Artist. Terri has kindly shared her story with us about how Endometriosis has impacted her life. Read more below.
Terri on Endometriosis
My name is Terri, and I am a Canadian fiber artist with a propensity for cheeky humor. My medium is macramé, and I live to create work that sparks a laugh or ten. From a young age, I had an enduring curiosity about this world we live in, and as a result, I have visited nearly 40 countries.
I cannot remember a time in my post-pubescent life when I wasn’t affected negatively by my reproductive system. When I began menstruating in my early teens, I was a competitive athlete and suffered from female athlete triad – which basically means I was too active to have regular periods. Then when I got a little older, extreme PMS settled in, and trust me when I say, that has been a wild ride and at times still affects me to this day. Throughout those early years, I was told that a multitude of things would ‘help’ – ‘take the birth control pill, it’ll regulate your periods’, or, ‘once you get pregnant, you won’t get PMS anymore’, or, ‘if you have a baby your periods will ease off and be tolerable’.
The shit really hit the fan in my late 30s when I had a copper IUD inserted. I was done with the birth control pill making me feel like a psycho. My periods became heavy and frequent, and the pain was next level debilitating. I’d be bedridden for days, and no over the counter painkiller could come close to touching the agony I experienced. More than once during that time I wondered if should just end it, because holy fuck, I didn’t know if I could handle another week in that state.
I endured the IUD for a year, and then I had a gynecologist remove the device because I just couldn’t bear it anymore. The doc sent me for an ultrasound to see if something else was going on, and the scan revealed what was believed to be endometriosis. An exploratory surgery confirmed what the ultrasound had shown – I had a shitload of endometriosis, and while the gynecologist did her best to excise it (scrape out), she felt that it would return. And she was right.
Just a few short months post-op, the pain returned and the intense bleeding along with it - I could easily empty my brimming diva cup 3-5 times a day for the duration of my periods. I was severely anaemic and needed to have bags of iron pumped into me to keep my levels up. The pain had become so excruciating that I was prescribed a higher potency painkiller, but was told to take it only when necessary because it is hard on the gut. There were about 4-7 days a month when I could not function, work, or even get out of bed without the meds - and I carried on like this for the better part of 5 years. Since the majority of my work is done around the world, it simply wasn’t acceptable for me to tap out for a week if I was away from home, so those painkillers became my lifeline if I wanted to earn a paycheque and live some semblance of a life.
On top of all the gyne problems I had, about two years ago I began struggling with intense gut issues, and since I travel a great deal, I was convinced I had picked up some sort of parasite. As if having a chronic pain illness on its own wasn’t enough - then add 4-7 daily trips to the loo - Lord thunderin’ Jesus, I thought I’d peaked with the fuckery at this juncture. All the parasite testing came back negative, so I was referred to a gastroenterologist who scanned me up and down and took biopsies of my stomach and gut. It turned out that I had erosions in my stomach, as well as something called microscopic colitis, which can sometimes be caused by – you guessed it - the pain meds I could not live without.
As my pain reached a crescendo, my family doctor referred me to a new gynecologist. I was told that the wait would be 18-24 months just to get a consult with him (shoot me), but since he is the best in my region for endometriosis treatment, I conceded to being on the waitlist. I went for another ultrasound while I waited to be seen, and this scan revealed that I had also developed adenomyosis, which paired with my endometriosis, left me feeling fairly hopeless that I’d ever feel better.
Much to my surprise, this new discovery began a snowball effect – both my family doctor and my gastroenterologist advocated for me with the gynecologist, and I received a call asking if I could come in for a last-minute cancellation consult appointment. I dropped everything and basically ran to his office. I have seen a lot of specialists over the years, but when I met Dr. W, I knew that he was going to be the one who would finally help me because his bedside manner was so easy and compassionate – plus he dropped a couple of minor curses which is always the way to my heart. He really listened to me, but the clincher came when he told me that if I were his sister or his aunt or his wife, that he would recommend a hysterectomy. I nodded furiously as the tears streamed down my cheeks - I felt like I had finally been seen, and when I left his office I felt hopeful for the first time in decades.
A mere 3 weeks later I received a call from Dr. W’s office to ask if I could fill a surgical cancellation in 2 weeks' time, and I cried tears of relief as I told his receptionist that I would ABSOLUTELY take the appointment. I had one more period before my surgery, then I said goodbye to my uterus forever.
When I started speaking publicly about the years of agony I suffered living in my own body, I began to realize just how many women suffer from undiagnosed chronic reproductive illnesses – endometriosis, adenomyosis, PCOS, cysts, fibroids, dysmenorrhea, and the list goes on and on and on. It was extremely cathartic to share my story with my Instagram pals, where I channelled a lot of my pain into my fibre art, and through that, I’ve met many women who identify with and share my journey.
I am almost 3 months post-hysterectomy now, and the relief I feel is incredible. I don’t have any pain, my gut issues have been resolved because I no longer need prescription painkillers, and I can finally look ahead at a life that is unencumbered by pain – I no longer think about what I cannot do, and can now look ahead at the all the things I CAN DO.
The most important lesson that I have learned from my decades of physical agony is this – no one will advocate for your health if you don’t take the bull by the horns and do it yourself. Don’t take no for an answer. Seek multiple opinions when necessary. You are worthy of feeling great, always.
When education fails, educate yourself. ✨
If you wish to read more individual stories, we have a different blog post coming out each week this month looking at a different illness/disability! So make sure to keep an eye out for them! If you would like to get involved and share your story drop us DM on Insta. ❤️