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Endometriosis is a painful disorder in which tissue similar to the lining of the uterus grows outside the uterus (or endometrium). Individuals suffering from endometriosis experience irregular and often painful periods, as well as abdominal and pelvic pain. March is Endometriosis Awareness Month and we’ve connected with Tami Ellis and Leah Haynes, the co-founders of an endometriosis charity, Endometriosis Events, to share their stories.
The Diagnosis and Treatment
We were both diagnosed with severe (stage IV) endometriosis during our laparoscopic surgeries. Our surgeons were concerned with how extensive the adhesions were and how it could affect our organs (I.e., bowels, organs of the pelvic area, etc.)
Leah’s excision surgery (surgery to remove the adhesions) took 9+ hours and she had to have two blood transfusions. Leah describes the experience, saying, “I was so used to pain from endometriosis flares. However, the emotional healing (after surgery) was also something with which I had to grapple.”
Since then, we’ve both had multiple surgeries. Tami had both her Fallopian tubes and appendix removed and talks about how hard it was to process the loss of organs.
During a subsequent surgery, Leah was told she may face a hysterectomy. She determined that egg freezing, in order to preserve fertility, was her best course of action. Tami has recently also had a hysterectomy. Although there were many complications, we’re happy with our choices.
The Lessons Learned
Through our diagnoses, we have learned about strength, resiliency and the importance of advocating for ourselves. We feel that there are many misunderstandings and unknowns about endometriosis that make it difficult to come to terms with a diagnosis.
Many people think endometriosis only affects the pelvic area or that it is a “period issue”. However, endometriosis is a whole-body disease and is found in many organs of the body. It does not only affect us physically but also mentally.
There is an important dialogue, which needs to happen around the profound impact endometriosis has on people emotionally—an aspect of healing that is often overlooked, stigmatized and undervalued.
The Emotional Impact of Endometriosis
There were times when we felt alone on our journeys, especially before we met. Endometriosis seemed to be a disease that did not affect the BIPOC population. Even though the Greater Toronto Area is a diverse place, we did not feel represented when we explored options for help and support.
It can feel somewhat like an unwelcoming space when there is no one who looks like you. We felt like we were the only ones with this disease, who were visible minorities. That was a heartbreaking realization. We had bonded over our similar experiences and decided that we wanted to work together and create something different for fellow endo warriors.
Creating an Endometriosis Charity
We decided to create Endometriosis Events, an endometriosis charity, with a focus on facilitating support groups, providing education in schools, and hosting social events in The Greater Toronto Area. We realized the importance of learning from each other, as well as reaching a group in our population, who may have felt marginalized, unheard, unseen and not believed, during their journeys with the disease.
As Black people, we don’t see people who look like us included in medical studies, in the medical profession, or in our everyday experiences. We felt it was important that people no longer felt alone or silenced.
We facilitate monthly support groups online, and it is great to see the cultural diversity, as well as hearing different perspectives about endometriosis. This is how our endometriosis charity, Endometriosis Events, started and we hope we can continue to make a difference this way.
A Lifelong Diagnosis
A few weeks after Tami’s hysterectomy she found out that the endometriosis had affected her kidneys. “My ureters had become extremely narrow due to inflammation. When this happens, your kidneys can shut down. I currently have nephrostomy tubes and a catheter, so my kidneys can drain from the back. I am also waiting for reconstruction surgery of my ureters. It is important to recognize that endo is a full body disease, not just a gynecological issue. And it requires various specialists”.
We wish that people understood the impact endometriosis has on the quality of life of people with the disease. It affects our social lives, work lives, health and wellness. There’s an immense need for more awareness and early diagnosis. Like many other warriors, we lost a lot of our youth to pain and appointments—just trying to “manage”.
We are strong supporters and advocates of mental wellness and exploring a variety of treatment options. We both have a psychotherapist and a naturopath. We’ve also explored acupuncture as a treatment option. Tami has been doing cupping for a few years and Leah has done pelvic floor therapy.
Of course, not everyone can afford to explore all these options, which is why endo warriors need to be made aware of what is out there, to make the best decisions for themselves considering finances, time commitments and comfort levels.
There needs to be an open dialogue about these issues and diseases like endometriosis. We can increase awareness by improving how we talk about health in Canada. Healthcare professionals need better awareness of its impact on people’s lives. By making more youth aware of endometriosis and its symptoms, diagnosis and treatment could be provided sooner.
Medical professionals also need not resort to prescribing the birth control pill to teenagers or encouraging pregnancy as a “cure”. We need to make realistic treatment options available. Surgery may not be the only (or best) option for all.
Endometriosis can be extremely challenging and difficult to navigate. With Endometriosis Events, we wanted to provide respite; a space for healing and growth, and an opportunity to build connections and community.