You may have seen Christina Paruag all over the news recently with her story regarding travel overseas for treatment for Endometriosis, and her new foundation to raise money for others who fall into this same boat. We were thrilled Christina could carve out some of her time this month to sit down with us.
Christina let’s begin with an introduction. Tell us about yourself.
My name is Christina, I’m based out of Mississauga + Toronto, Canada and I’m an endo warrior, advocate, public speaker and entrepreneur.
“I got my surgery date in August 2020, being told it would be in October 2020 and didn’t want to pass it up. I submitted everything as fast as I could to OHIP, yet they kept rejecting it.”
You definitely manage a lot every day and I know you’re still in the thick of it. Can you tell us about your journey?
My endometriosis symptoms started at the age of 8, before my first period at 12. I was in and out of the ER with horrible stomach pains, frequently going to my school nurse's office for help. I would cry and roll on the floor until I made it to the office, where I was told I could lay down and rest. The nurse’s office didn’t think about endometriosis being the cause at that time, and neither did any of the doctors I saw. When my first period appeared, I felt like I entered a nightmare. Pain searing through my thighs, pulling my stomach and back apart. Again, I would cry and roll around on the floor at school, wondering why no one else got as sick as I did on their periods. My doctor told me it was normal and I would need to learn that periods can be painful, and I just had to suck it up and manage it with Tylenol and/or Advil. So I took 8-10 advils a day during my period. It helped a bit in the beginning and later became completely ineffective. I found myself missing out on parts of my life. I was constantly throwing up and passing out at school.
Fast forward to seven years later in university, I had a ruptured ovarian cyst and even more severe pain started. I was at the ER at least 3-5 times a week, screaming my head off in pain and going through every possible diagnosis for the pain - crohn's disease, IBS, gas pains, ovarian cancer, etc. The pain was every day, I would bleed anywhere from 10-21 days a month and I could barely function. I only went to school for my science labs or exams. This led me to my first gynecologist appointment. While waiting for a laparoscopy, my gynecologist suggested that I might have endometriosis, and that was the first time ever heard of it. “What an ugly word”, I thought. I didn’t understand it fully, and I was even more concerned that no one had mentioned it to me after 11 years of pain. The laparoscopy confirmed that I had mild endometriosis, and I was reassured that I would get better. At that time, I didn’t know the difference between excision and ablation and opted for an ablation surgery just so I could be diagnosed and stop feeling like I was crazy. The pain came back full force after 6 months.
Two years later, I had an even larger ruptured ovarian cyst (the size of a grapefruit) that ruptured and almost killed me - leading to chronic kidney infections, septic shock, continuous yeast infections and intestinal bleeding. I was in so much pain every day that I tried to work from home as often as I could - and started multiple businesses to be able to afford therapies so that I could feel somewhat alive. My business FemEvolve, which I’m in the process of relaunching, was a health/wellness magazine and platform (both print and digital) where health writers contributed, doctors and holistic practitioners were interviewed and we shared women’s stories - especially those with difficult health conditions who were resilient in overcoming them. I eventually became too sick to continue to run it, however I’m so excited to bring back elements of it soon.
Can you describe what your pain feels like? If possible, can you tie the pain to the disease?
Since excision surgery (about five months ago) my pain has drastically reduced. I’ll still get flare-ups if I eat something that’s not good for me or during ovulation, however it’s nowhere close to the pain I previously experienced. I don’t have pain every day, it’s for a few days every month during ovulation and the first day of my cycle typically. I do have endometriosis in my lungs and I still struggle with chest pain, shortness of breath, shoulder pain, wheezing cough and more as a result of thoracic endo. I’m waiting on a VATS surgery to manage this.
Prior to surgery, I had many symptoms. Extremely painful bowel movements and urination. Painful intercourse. Pain when bending, lifting heavy objects, sitting or standing for too long. Constant nausea and vomiting during my period for days (this went away after a few years), food aversion and very sensitive to smells. Migraines prior to my periods. Chills and recurrent kidney infections. Brain fog and fatigue that sometimes felt impossible to manage. The pain left me paralyzed on my periods for days. I've never had a baby but many people describe their pain as worse than being in labour, and I feel like mine may have been as well. It felt like a thousand knives twisting inside my abdomen, my back ripping apart and my thighs being sawed off, while on fire and being punched and kicked repeatedly. It was debilitating and took a lot of my life away.
You have been in the news recently about your journey with traveling to obtain excision surgery. Can you tell us a bit about navigating the Canadian doctors and how you ultimately decided to go to the UK?
Going abroad for surgery was something I considered years ago, but I thought it was crazy given that our healthcare is funded in Canada. It wasn’t until I got hit with recurrent kidney infections on top of my everyday pain that I realized that the system wasn’t willing to help me. My gynecologist at the time refused to do an excision surgery on me, telling me to keep trying new medications and continue on antibiotics to manage my pain. I was misdiagnosed with something called a UPJ obstruction by a Canadian urologist, and because of this, I was told by every gynecologist that I contacted, along with my other doctors, that I would need a urogynecologist specifically for surgery. The urogynecologists here said their waitlists were 6-12 months for an appointment and another year or so for surgery. At the same time, I was told by an internal medicine clinic that my kidney function was declining and if I waited that long, I would be on dialysis. I didn’t want to risk it and wait that long, as I had already been trying to see another doctor for four years. Coupled with a breast cancer scare and the intestinal bleeding and other antibiotic side effects, I grew fed up of waiting. I found Dr. Peter Barton-Smith through a Facebook group called Nancy’s Nook, and it was honestly the best decision I’ve ever made in regard to my health. He found severe, Stage 4 recto-vaginal endometriosis and was able to excise everything, leading to no more kidney issues! I’ve never felt as good as I do now, aside from my lung symptoms. My biggest supporter was my family doctor. After switching family doctors twice, she listened to me and believed me. She pushed for my international surgery.
Because you’re a rockstar, you’ve used your injustice to build a foundation to financially support 5 people to travel to the UK to have surgery. Can you give us a bit of background on this?
Thank you! When I looked into the international surgery,I had very little money saved. I was juggling multiple businesses and freelance work, and I was making great money, but I was in debt from one of my businesses and health treatments years prior and I was working to pay that off. Then COVID-19 hit and I lost both of my businesses and I worried about how I would continue working toward this surgery. My doctor suggested in late 2019 that we start an application for Out of Country Prior Approval in Ontario for an out of country surgery. I went back to full-time work in July 2020 and saved as much as I could, but it wasn’t enough. I got my surgery date in August 2020, being told it would be in October 2020 and didn’t want to pass it up. I submitted everything as fast as I could to OHIP, yet they kept rejecting it. They asked for more info - I provided it. They asked for a letter from my gynecologist - even though she was against the surgery, she gave me one. Then they came back saying they need even more information, because this surgery is offered in Canada. They didn’t understand that the wait times were too long for my given condition, and instead dismissed me, as endometriosis has been dismissed for years. This all happened a few days before surgery and I was incredibly stressed. I looked into taking out a line of credit but I knew it would be even more stressful, and my boyfriend suggested we start a Gofundme campaign to share my story and have family and friends donate.
Since I’ve been speaking publicly for years on small and large stages about endometriosis, I attached one of my videos - and the campaign brought in $7K in 24 hours. By the end of two months, I raised close to $30K CAD, from friends, family and even strangers! I was amazed at the power in numbers, and how so many people who loved me were coming together to give me a better quality of life. I was able to pay off all the surgery costs and put myself in a better financial position because of the support I received, and not having to go into debt.
After my article went viral, I received thousands of messages from people all over the world. Many were asking how they could go abroad too, but didn’t have the funds or a large network to fundraise like I do. That’s when I decided to start the OOC (Out of Country) Excision Fund through Gofundme to raise $100K CAD, with $20K going to each recipient to be used toward an excision surgery. Recipients are chosen based on how the endometriosis has affected their quality of life and those that are in difficult financial positions, especially those who have lost their jobs because of the pandemic or can’t work because of endo, are prioritized. Donors can contribute to the fund here: https://www.gofundme.com/f/help-fund-life-changing-endo-surgeries and will be given updates throughout the campaign once we raise at least $20K, so they can see the before and after stories of recipients and how their dollars have greatly impacted someone’s life. Applicants can learn more and apply here: https://sites.google.com/view/oocexcisionfund/
This is amazing. I mean I know its still in the beginning days but it is generating so much buzz.
Changing gears a bit here, what are some of the more modern medicine techniques that have worked for you? Drugs, surgery, etc.
Excision surgery has been the biggest game changer for me. It’s given me so much of my life back. I was on morphine, Tylenol 3, Percocet and more to manage pain. I’ve also tried various hormonal therapies - birth control, Seasonique (seasonal cycles) and Visanne for endometriosis. With strong pain medications, I was even more nauseous and couldn’t eat much so I eventually stopped. With hormonal therapies, I was in even more pain and missed more work than I did with my usual endo pain. My nutritionist speculated that my liver had issues regulating hormones, and both my nutritionist and doctors advised that I stop hormonal therapies completely and focus on a clean lifestyle.
Have you ever reached a point where you had to think outside the modern medicine box? If so, what did you do that helped with the pain?
Oh yes! Aside from working with a nutritionist and a personal trainer, I’ve found low-level laser therapy (using a band of laser lights with concentrated light to target scar tissue and help with inflammation) and medicinal marijuana to be most helpful. The marijuana helped me tremendously with flank pain during kidney infections.
Generally speaking, are you open to alternative therapies such as osteopathic, pelvic floor, myofascial massage, acupuncture?
Yes! I’ve done massage and pelvic floor physiotherapy and seen a reduction in my symptoms like daily pain, pain during intercourse and pain during urination.
What would you tell our readers in order to help them consider alternative therapies?
Talk to others in the endo community to see what’s working for them with similar symptoms to what you’re experiencing, but don’t have expectations that you’ll get the same relief. Everyone responds differently to therapies so what works best for one person, may not agree with you at all. You have to try a few different therapies to see what works best for you, and giving different therapies at least 3-5 sessions will help you evaluate if you’re in less pain or more pain and what works best for you.
And lastly, what would you tell your younger self about pain management?
Even though this feels like the worst thing ever, even though it feels like you’re dying on your periods, there is a way to feel better. Someday, all this pain will be worth it because it will lead you to taking action and advocating for yourself to get a life-changing surgery. You’ll feel better than you’ve felt in your whole life after a proper excision surgery. All of the diet and lifestyle changes might seem pointless when you’re still in so much pain, but I promise that it’s best to nourish your body rather than fight it. Learn to love it, even with its scars, burn marks and incisions.
Anything else you want to tell our readers?
You’ve probably heard this before but this is a reminder to never be afraid to switch doctors if you need to. I switched family doctors twice. I’ve seen countless other specialists and gynecologists. It took me 17 years to finally get the help I needed. Living a life with minimal pain is possible, but it takes finding the right doctor, the right support, keeping strong in your mindset, and loving yourself through it all. You’re a warrior for facing all of this and even if you’re in pain right at this moment, I see you, I understand you, and you’re enough, just as you are.
Photo credit: cover photo by Jenny Jay