We are Tami Ellis and Leah Haynes – the co-founders of the registered Canadian charity ‘Endometriosis Events’. Endometriosis Events raises awareness for the disease endometriosis through our facilitation of a monthly Canada-wide virtual support group; hosting events, and our latest initiatives – political action and educating youth. Endometriosis Events came about when we met and bonded over our similar experiences. We decided that we wanted to work together and create something unique for fellow endometriosis patients; we realized the importance of bringing the endo community and its supporters together where we could learn from each other as well as learn different ways to have a more comfortable life and cope with this diagnosis.
Endometriosis (also known as endo) is a chronic debilitating disease which affects 1 in 10 individuals assigned female at birth. It occurs when tissue, similar to the lining of the uterus, forms outside the uterine cavity forming nodules, lesions and adhesions on various organs including the bowels, urinary system, lungs, etc. Currently, there is no definitive cause nor cure. It takes an average of 7-10 years for endometriosis to be diagnosed and there is very little funding provided by the government towards research. Endometriosis affects patients’ daily lives due to common symptoms such as chronic pelvic pain, possible infertility, cyclic leg pain, excessive ovulation pain and menstrual pain, painful intercourse, chronic fatigue and more. Excision surgery is the gold standard approach to management, along with an integrative approach to care.
We both have been diagnosed with severe (Stage IV) endometriosis. Endo has been found in our pelvic areas, fallopian tubes, bowels and amongst other organs of our bodies. We have both had multiple surgeries and unexpected hurdles we had to face during our recoveries. Our journeys have affected us both physically and mentally. We feel no one should have to experience what many of us, with endometriosis, do. Through our struggles with endo we have been able to help others by creating Endometriosis Events.
As Black women, we have found some of the existing communities isolating and not representative of all those who have this disease. We have set out to change this by creating a safe space where all voices are heard and matter. Our passion, drive, and lived experiences help us to create a platform where we can work together, with our community, to make a difference when it comes to endometriosis care, treatment and support. We focus on bringing a voice to those of us who have been historically silenced and marginalized in the medical space and in endometriosis care specifically.
The endometriosis space tends to be heavily represented by voices of people who do not look like us. For years, endo was seen as a ‘white woman’s condition’. Because of this, our experiences as Black women with this disease are different. We face microaggressions, dismissal and misogyny as people of colour within medicine as a whole. Considering other factors of intersectionality – including gender, age, etc. we deal with a lot of negativity. Many doctors do not believe our pain. Black women with endometriosis are often told our pain is different or that we can handle it better than most. Studies and research are often done on subjects who are not like us. Due to systemic barriers, we do not often see specialists who look like us either.
Our unique experiences need to be considered in the ways we are treated and cared for. It is important that we continue to grow Endometriosis Events, so Black patients’ stories are heard. We need to reach a group in our population, who have felt marginalized, unheard, unseen and not believed during their endo journeys. People should no longer feel invisible and silenced. There were times where we felt alone on our journeys, especially before we met. Endometriosis was presented as a disease that did not affect our population. Even though the Greater Toronto Area (GTA) is a diverse place, we did not feel represented when we explored options for help and support. We felt like we were the only visible minorities, with this disease. That was a difficult realization. When wishing to open up and share about one’s personal experiences, seek help and feel comforted, the space in which this happens needs to feel welcoming and inclusive.
This is why we work to make a difference in the lives of people of colour within the endometriosis community. Our personal experiences allow us to bring an awareness and understanding to this disease and ways in which change needs to happen.
Leah’s Bio/Story:
I have experienced horrible symptoms since the age of 12. I had extremely painful cramps with my period, Mittelschmerz (German for middle pain and the term used for painful ovulation), nausea, vomiting and heavy periods. I missed so many days of school due to pain and an inability to function. After seeing many specialists and seeking help for years, I was finally diagnosed with endometriosis. When I heard the word I was unfamiliar with the disease. I had never heard of ‘endometriosis’ before. Putting a name to what I had been dealing with and knowing it wasn’t ‘all in my head’ was bittersweet. I could now arm myself with knowledge and hopefully treatment, but I did not realize how difficult my journey to care and help would be. My subsequent surgery, in 2017, lasted 9.5-hours and I had a gastroenterologist present along with my excision specialist and gynaecologist. My recovery was challenging as I had two blood transfusions and a longer stay in hospital than anticipated. However, with the help of a combination of seeing a naturopathic doctor and pelvic floor physiotherapist, plus other tools for care, I was finally able to lead a life where I could enjoy myself more: I found ways to better manage my symptoms.
Prior to my most recent laparoscopic excision surgery in 2020, I had a lengthy conversation with my surgeon/specialist. As a patient with severe and extensive endometriosis, on various organs, I was facing the possibility that I may need a hysterectomy in the event of an emergency during surgery. A possible hysterectomy was something I was aware could happen and I am grateful my doctor had a conversation about it prior to my procedure. We talked about my desire to have children in the future, which then led to a discussion about fertility preservation and the options available to patients like me. I was referred to a fertility doctor. During my first appointment, I was happy to hear that this doctor knew about endometriosis and that she was also familiar with different protocols depending on the patient’s specific circumstances. In the end, I opted for egg freezing, where my mature eggs would be retrieved, frozen and stored for future use. I was put on several fertility medications and gave myself daily injections. On the day of my ‘trigger shot’ (a dose of hormones given prior to the retrieval), I was very emotional because I was worried that I was running out of time in the event I was not able to produce mature eggs. I needed my surgery and had a date…there was not much time left if I needed to go through another cycle. Thankfully, the process went well and the team was able to retrieve viable eggs, which I continue to have stored. The entire process was emotionally, physically and financially draining.
Just under two months later, I had my surgery and woke up to the news that things went well and I still had my uterus as no hysterectomy was performed. I am still grateful for the options I was given and appreciate that the conversation, with my doctor, happened; I feel it should be a part of every endo patient’s consultation. I also recognize that while I was able to explore fertility preservation options, some people cannot. The decision has to be best for each individual considering personal choices, finances, circumstances and desires.
I feel this journey has allowed me to become strong and resilient. I also recognize how much endometriosis has affected my life – personal, school, work, relationships….it takes its toll. I hope, through our charity, we can continue to spread awareness and help others who are diagnosed or have suspected endometriosis. Early intervention is key, which is why our work with youth is imperative to our goals of one day having endometriosis diagnosed much earlier in patients.
Tami’s Bio/Story:
I have always had a difficult period. I would bleed for 2-3 weeks, had severe nausea and heavy bleeding. I thought these symptoms were normal and as I got older the pain became worse. I would faint, would bleed during bowel movements and go to the hospital every few months due to the pain.
In 2017 I found out I had an ovarian torsion. I had a huge cyst that twisted my right ovary. While I was getting the cyst removed that’s when I was officially diagnosed with stage IV endometriosis.
I had a few surgeries throughout the years and also tried several medications and natural remedies to minimize my Endometriosis symptoms but nothing worked. The pain was still there and endo came back every time.
There were times I would have my period for 20-30 days and sometimes two months. I was still experiencing nausea, pelvic pain and it was extremely hard for me to keep food down. Endometriosis was taking over my whole life.
In 2022 I made a difficult decision to get a hysterectomy. The surgery was 8-hours long due to the amount of endo and adhesions that were removed. It was a challenging surgery, but it was worth it. I felt like I could finally live my life and be the best version of myself, without having to worry about my period and the horrible symptoms that came along with it.
Although I was happy I wasn’t getting my period, I had no idea my kidneys were slowly declining due to endometriosis. I was diagnosed with severe Hydronephrosis. I had swelling in both kidneys due to a build-up of urine. Both my ureters were extremely narrow from inflammation and adhesions. For 6 months I had bilateral nephrostomy tubes and bilateral catheters put in to drain the urine from my kidneys. I also saw a nurse twice a week to change the dressing and catheter bags and flush the tubes.
It was a scary and exhausting process to go through. I had no idea my kidneys had been affected by this horrible disease. It was difficult for me to focus on my hysterectomy recovery when I was dealing with kidney issues.
Living with endometriosis has been tough. It has taken me on a crazy roller coaster of ups and downs.
It is important for me to spread awareness and provide support to help others on their journey. I hope Endometriosis Events continues to make a difference with advocacy and continues to provide spaces where endo warriors are feeling less alone.
Over the past two years that we have been recognized as an official charity, we have hosted many events (e.g., virtual floral arranging; in-person wellness social; fertility information session; book launch; endometriosis film screening with panel…) and been featured in many online blogs and a Mississauga News community newspaper featured article; been interviewed for CityNews; shared information via a booth at the All About Women Show + Humber River Hospital; had the CN Tower in Toronto, Mississauga Civic Centre clock tower, and Niagara Falls illuminated yellow in March for Endometriosis Awareness Month; started a political action petition around endometriosis with MPP Dr. Jill Andrew – Toronto-St. Paul’s, which will be tabled to the Ontario Legislative Assembly in fall 2023 alongside a rally at Queen’s Park and more. All of these experiences help us to grow and learn more about the disease. We hope we can continue to make a difference in the lives of all people living with endometriosis.
Want to know more?
Check out these news articles
Mississauga News Article:
CityNews Clip:
Endometriosis event highlights gaps in healthcare
PatientVoice TikTok:
https://vm.tiktok.com/ZM2hoM2mX/
Follow their Socials:
Instagram (@endoevents)
X (formerly Twitter) (@endoevents)
Contact Endo Events:
Tami Ellis & Leah Haynes
Email: endometriosisevents@gmail.comWebsite: https://www.endometriosisevents.com/
periods in pain 