Stephanie Sanders is a happy, hopeful 23-year-old woman from Manitou, raised in a farming family and has a love for animals. For the past twelve years, she has suffered from excruciating pain as a result of Stage 4 Endometriosis. The disorder builds tissue outside of the uterus, causing an inflammatory reaction and pain. She was classified with Stage 4 during one of her surgeries where it was discovered the tissue was growing deeper into her body.
Sanders is quick to remind us each person's experience is different, adding other people she knows living with this invisible disease, like herself, often have to put on a happy face, even if their insides are on fire.
Sanders has had three surgeries, all of them outside of Canada, and has been to numerous doctors, and tried many different medications and treatments. In 2019, she received a referral for Lidocaine Treatments at the Health Sciences Centre Pain Clinic in Winnipeg. Due to the pandemic, those treatments only started this fall shortly after the program resumed this August.
She shared the difference the two treatments she's received so far, have made.
"So, now I'm on a pretty strong opioid use, which I've been on for a few years now. Lidocaine infusions actually allowed me to cut that opioid use in half, so even though I wasn't eliminating it completely, just by using that much less, it helped with my brain fog and my fatigue. Those other symptoms of the opioid use you don't think about until you're taking it. Even reducing it by half, I was able to have a clear mind and remember stuff and felt like, 'Oh my gosh, I actually remembered what she said."
She said it was family members who pointed out her improvement, seeing her wanting to go out and to things more and more. Then she received some discouraging news.
"I found out the lidocaine infusions were temporarily going to be closed, two weeks ago I guess, and honestly, I was devastated. I was like, 'What am I gonna do?' I'm terrified for my pain levels to go back up to where they were, because of how little I was able to do, physically, and how much, too, it affects my mental health, because it does play a big role together."
A Shared Health spokesperson emailed the following statement to PembinaValleyOnline regarding the suspension of services for Lidocaine Infusions at the HSC Pain Clinic.
"As HSC Children’s continues to respond to elevated patient volumes associated with the level of respiratory illness in the community, some staff have been temporarily reassigned to support care in high need areas. This includes the pediatric intensive care unit where the most ill and injured children receive care.
These staffing moves, in addition to a recent and unforeseen leave, have temporarily impacted the volume of patients able to be seen in the HSC Pain Clinic. Affected patients may wish to contact their primary care provider to discuss options that may be appropriate for them.
We are actively exploring staffing models to ensure a minimal disruption to service and support improved access for patients at HSC’s Pain Clinic.
We encourage any patient with concerns to reach out to our patient relations office."
At 23, Sanders said she is unable to hold down a job due to the unpredictable nature of her pain. She experiences anxiety and depression, especially when thinking about leaving her house. But she is grateful she's able to work on the family farm from time to time, as her body allows. She hopes for a chance to gain life experience outside her home, and to figure out who she is and what she wants to do. She said, this was not how she wanted to live her teenage years.
"It's hard to watch everybody my age, and all my friends, living a life I want to live when I'm not able to. But, then, also when I am in bed, because of my pain, or not able to hold a job down, it does take a huge toll mentally, because I think of the life I'm missing out on, and what my life could have been like if I wasn't dealing with all of this. The Lidocaine Infusions kind of gave me a glimpse back into that life."
Fortunately, Sanders was able to graduate with her Agriculture Diploma from the University of Manitoba in 2021, noting being able to take courses online, and rewatch classes during the pandemic with her heating pad, was quite convenient for her. It wasn't easy, but she is grateful for all the support she received from people around her to help her through it.
Like everyone her age, she has dreams of what she wants to do with her life.
"I've always loved animals and I've always wanted to have some sort of rescue. So, I think I would probably be either still in school learning about it, or on that path of working with animals. But also, I do love the farm. I think I'd be more involved in the farm as well."
Sanders said, so far she is unable to find a place in Canada to get the life-changing Lidocaine Infusions. She was scheduled for her third treatment this week, but it was cancelled. She is already noticing the change in her pain levels. She considers herself fortunate to have been able to go outside of Canada to get the costly surgeries she has had, but said the doctors and specialized care isn't available for her and other women with Endometriosis in Manitoba or Canada.
As someone living with an invisible disease, she reminds people "We don't know what people are going through, be kind, and treat people like you would want to be treated."
