Tegan’s Endometriosis Recovery Fund
Donation protected
Hi everyone, my name is Leah, Tegan’s partner of 4 years. I’ve created this GoFundMe with the encouragement of our friends and loved ones, many of whom know how difficult of a time Tegan has had over the years leading up to her diagnosis and upcoming surgery for endometriosis. According to the NHS, endometriosis is among the 20 most painful conditions. While pain is subjective, it ranked amongst conditions including arthritis, kidney stones, heart attacks, and stomach ulcers, as these illnesses are known to “leave sufferers in too much agony to perform normal tasks” and significantly impact quality of life.
This fundraiser is being held in hopes to support Tegan as she rests and recovers following her surgery, which is scheduled for March 21st. Your contributions, whether monetary or through spreading the word by sharing this link, would mean the world. I am deeply appreciative of those who have supported Tegan and myself over the years, and we are reminded that community truly means everything in times like these.
—Tegan—
In Canada, it takes an average of between 5-7 years to get diagnosed with endometriosis. Tegan is going on 8 years now between her first hospital visit to today. Tegan’s journey towards diagnosis involved years of hospital visits and walk-in clinics, to which she was repeatedly dismissed and told she was overreacting and that it was “normal period pain”. After years of this, she was finally taken seriously after securing a GP here in Toronto, who referred her for further testing. Several months and invasive tests later — including pelvic exams, multiple internal/external ultrasounds, a colonoscopy, sigmoidoscopy, an MRI, and more — it was confirmed by specialists that Tegan has stage 4 endometriosis, also known as the most severe stage for the disease. The almost decade-long delay in diagnosis prevented Tegan from accessing treatment for far too long, not to mention it has led to the disease likely being much more advanced than it would have been had she been taken seriously from the start.
The ways in which endometriosis impacts Tegan are extensive (to say the least). In the four years we have been together, I have witnessed a drastic change in the once active and energetic person I first met. Today, Tegan experiences constant fatigue alongside chronic symptoms including acute hip/back pain, severe abdominal cramps/pelvic pain, intermittent spotting/bleeding, irregular and extremely heavy menstruation, and further issues related to her bowel and bladder. Tegan is often debilitated by the pain to the point of being unable to leave the house, only finding minor relief with prescribed pain medication and heating pads wrapped around her abdomen and back. As a retired varsity athlete, many of Tegan’s hobbies revolve around movement and physical activity, whether that’s running, hiking, camping, bouldering… Endometriosis has taken those sources of joy from her, and the grief she has been left with is palpable.
On top of these chronic symptoms, Tegan has had to dedicate much of her time and energy advocating for her needs within the workplace, at school, and in healthcare settings. She has faced a lot of resistance where it seems there is a lack of understanding (or lack of willingness) to accommodate her needs, which has only further contributed to the frustration and difficulties related to this disease. As a visibly queer person with invisible chronic health issues, the amount of harm she has endured navigating institutional settings is devastating. I have been there as fertility specialists, ultrasound technicians, and everybody in between have made offhand comments or assumptions about her, including once instance when a doctor questioned why someone her age would be getting a colonoscopy, only to respond “Oh, endometriosis? Well that just sorts itself out”. Needless to say, the medical gaslighting and ableism that Tegan continues to encounter is disheartening.
Despite suffering from chronic symptoms and flare ups, Tegan has managed to maintain a 4.0 GPA throughout her time in the Social Service Worker program and plans to work towards an undergraduate and master’s degree in Social Work, with the ultimate aim to work in end of life care. Tegan previously worked at Sprott House, a transitional home for 2SLGBTQ+ youths experiencing homelessness. Despite how deeply committed she was to her role there, her symptoms continued to worsen and she made the difficult decision to resign in anticipation of her surgery, which was then delayed and rescheduled twice since. I witnessed firsthand how much meaning and fulfilment supporting the community brought to Tegan’s life, and to see endometriosis slowly rip it away has been so disheartening. Because of endo, Tegan has been in a state of constant grief, especially when it comes to grieving the loss of her identity and ability to show up as her full self due to her reduced capacity.
Unless you know Tegan personally, it’s difficult to articulate just how supportive she truly is for others. Her approach both professionally and interpersonally genuinely amazes me, and I hope to see a time where she can extend that level of care once again—without sacrificing her health. Despite how much endo has disrupted Tegan’s career aspirations, she still finds creative ways to be involved in the work she loves. She recently secured a volunteer position with Hospice Toronto which will allow her to pursue a meaningful yet more sustainable approach to supporting the community without the strict confines and (often ableist) demands of a position with a more rigid schedule.
I may be biased, but I am consistently shocked at how she manages to persevere despite the constant pain and symptom flare-ups, but the reality is she shouldn’t have to. We are hopeful that her upcoming surgery will alleviate some of the symptoms so that she can find relief from this pain and continue forward with her dreams. Anyone in Tegan’s life can speak to the intelligent, genuine, kind, and caring person she is, and I only hope she can receive some care in return while she needs it. While mutual aid and community care is not transactional or expected to be “repaid”, I have faith that the support received will be given back tenfold through Tegan’s future pursuits and aspirations.
—Surgery Details—
In late 2022, Tegan was referred to the hospital’s gynecology and obstetrics department for a surgery consult. At the initial intake, we were told that the typical wait time for surgery would be approximately a year. After additional diagnostic imaging, Tegan was slated for a tentative surgery date of October-November 2023. At her second consultation in March 2023, she was told that this estimated date was still to be expected. However, after months of trying unsuccessfully to get ahold of the clinic when her suppression meds stopped working, it was revealed that her case would have to be referred to another surgeon and was rescheduled for February 2024. Along with this new surgeon came an entirely new surgical plan— one that did not align with the proactive approach that Tegan had previously agreed upon, and did not honour her autonomy or her wishes as a patient. Ultimately, Tegan made the difficult decision to cancel that surgery in favour of being referred back to her original specialist, who thankfully was able to reinstate the original surgical plan and reschedule for March 21st.
The reason we are now seeking donations is so that Tegan can take the time that she needs to rest and recover from this surgery. While the surgery is considered to be “minimally invasive”, Tegan’s case is acute and is expected to take at least 6 weeks for recovery. As a part of Tegan’s surgical plan, they will be removing her appendix, fallopian tubes, and possibly the left ovary, as well as multiple endometrioma ranging from 2.6cm-4.5cm in diameter, that were discovered throughout the imaging and tests previously mentioned. In addition, her surgeon will explore whether there is further involvement and tethering between any other organs including her bowels.
—How funds will be allocated—
Rent ($1025/month)
Post-Operative Massage for Lymphatic Drainage ($125 to $175 per session)
Pelvic Floor Physiotherapy ($100-150 per session)
*Also any additional or unexpected costs such as groceries, bills, therapy, transportation costs, medication, etc.
All funds will be directed only to Tegan, as she has not been able to maintain steady employment for over a year due to the acute nature of her condition, and deserves some reprieve from the stress and financial impacts of being chronically ill.
If you’ve made it this far, I would like to thank you again for taking the time to read Tegan’s story. Unfortunately, stories like these are not uncommon, as she is one amongst millions who are suffering from endometriosis. Please see the following resources for more information about endometriosis (*not an exhaustive list, just a few I have found helpful!):
www.endometriosisnetwork.com
Instagram:
@the__endo__space
@surviving.endometriosis
@mybattlewithendo
@theendohood
Organizer and beneficiary
Leah Jones
Organizer
Toronto, ON
Tegan Williams
Beneficiary