Written by Ananya Ganesh
Edited by Anirudh Koneru
Published on 12/16/2020
Take a moment and ponder this situation. Even before you start school, you are faced with debilitating health issues, intense stomach aches that affect every aspect of your life. And then imagine, that when you take this to the doctor, the very person who was supposed to listen to you without judgement and offer you a solution, you are met with disbelief and your problems dismissed as lies to get out of school.
While this sounds almost too awful to believe, this was life for Victoria Jackson, an entrepreneur in Toronto, Canada. She first began experiencing intense abdominal pains at the age of five. When she consulted a doctor, he passed her case off as an attempt to get out of school– which wasn’t true.
At the age of 12, Victoria had her first period. It was accompanied by unbearable pain, almost every day, and frequent fainting spells, many of which were random and occurred at events like track meets, or in places like the mall.
When she consulted a doctor, they suggested taking birth control, and Victoria began taking it from the age of 14. Between the ages of 14 and 28, Victoria switched between nearly ten to fifteen types of birth control. When consultants did a more detailed scan of her abdominal area, they found that there were cysts in both her fallopian tubes, but opted to leave them in, and deal with the problem when Victoria had children.
Meanwhile, Victoria’s personal and professional life were being severely impacted. As she aged, the pains caused by her condition worsened. By 24 years of age, the pain became very bad, and by 31, it was unbearable. Victoria was forced to drop out of university because she kept dropping courses. She realized very quickly that she could never pursue a nine-to-five career, and decided instead to partake in her family business as an entrepreneur.
At the age of 28, Victoria decided she wanted kids, and wanted to resolve her issues once and for all. At the very least, she wanted to understand what the problem was, and how she could address it. When she visited a consultant to do a sonogram, they found that as a result of the cysts which had been left in, both her fallopian tubes were blocked and had to be removed.
Determined to look for other options, Victoria decided she wanted to consult a specialist, and began the search for one near her residence. After almost three years of searching, she finally found one, but like so many before, the doctor disappointed her by dismissing her case as something mild. The doctor then told Victoria that the medication she had been on for fourteen years would be lifelong and that her fallopian tubes could not be saved.
Refusing to give up, Victoria decided to look further. She reasoned that, since birth control had done nothing for her condition in the fourteen years she had been on it, there was no reason it should do anything for her in the future as well. She decided to continue the search for a specialist, and eventually found one in America.
In July 2020, Victoria flew to the USA for an in-person consultation with Dr. Nick Kangoasa, a reproductive specialist in Georgia. As soon as he heard her story, he told Victoria to get off her current medication, as it clearly wasn’t working. After conducting more scans, he concluded that Victoria’s ovary was adhered to the wall of her abdomen, and all her pelvic organs were tethered to the wall of her abdomen as well.
Additionally, he found pelvic inflammatory disease (PID), liver complications due to the numerous adhesions, interstitial cystitis, large amounts of endometriosis (for more information on endometriosis, see here) in the intestines, and endosalpingiosis (for more information on endosalpingiosis, see here)
In 2020, Victoria underwent a 4.5 hour procedure.
While her life after surgery has become much easier and painless, the road to recovery was a variable one. In the beginning, Victoria had to deal with extreme soreness, as well as the flight back to Canada. In addition, she also had to deal with recurring urinary tract infections (UTIs). She recovered, and is still recovering very slowly, regularly attending physiotherapy, but is still unable to go to the gym, and not cleared for work.
While Victoria herself was severely impacted by her conditions, she wasn’t alone. Her family and loved ones also had to deal with the pain of seeing someone they cared about in so much pain. For her mother, who had been taking Victoria to doctors ever since she was five, the personal impact was significant.
The rest of her family, who she runs her business with, was impacted as well; as a result of her extreme pain, she had to limit her working hours and couldn’t work full time. Making the decision to go to America during the pandemic was an especially difficult one for her, but once her family understood that she had no other option, they were completely supportive.
Victoria’s experiences with doctors and medical professionals in general was not particularly positive. For 20 years of her life, medical professionals from all over Canada ignored her problems or told her to simply continue with her life. There were even times when the doctor treating her didn’t bother returning her desperate calls after 9 months of being on a medication that was making her bleed daily.
“I know my body very well and always knew exactly what was wrong. However, doctors treated me as if they knew my body better than me and kept dismissing my concerns. This wasted sooo many years of my life.”
Thankfully, in the end she managed to find a doctor who was willing to listen. Dr. Kangoasa specialized in restoring reproductive organs, and was the first doctor who tested her insulin resistance. Unlike the other doctors Victoria consulted, Dr. Kangoasa believed her right away, and was very easy to talk to, answering all of her questions and putting her at ease.
In the last year, Victoria has seen a huge shift in her perspective and outlook towards the world. Before she had surgery and visited her doctor in Georgia, she thought the life she had was the best she could ever hope for, and believed that she couldn’t possibly achieve any more. Since then, Victoria’s views have completely changed, and she believes that there is so much more she can do with her life.
Like other people suffering from rare diseases, Victoria has been a first-hand observer of the impacts of her condition on her lifestyle. The small things that most people take for granted, like being able to complete everything on their daily to-do list, or having a full-time job, or even just feeling healthy for an entire day, were so often impossible for Victoria. As Victoria succinctly put it, “any hour I feel good is the best of my life.”
“Talk about it, and get some conversation going,” she says when asked what advice she has for rare disease advocates, “Ask what people need…people need to understand what the people around them are going through.”
Victoria says the most important thing she has learned from having and living with a rare disease is to trust her gut. There were times when her doctor prescribed medications for her, and when she held it in her hand, she immediately knew it wasn’t right. She never gave up, always advocating for herself, searching for more medications, consultants, and solutions, before finally receiving the care she needed and deserved.
Most importantly, though, she believes that everyone in the rare disease community should trust themselves and fight for themselves. “Stand up for yourself. If you feel something is wrong, always push for yourself…ask for help.”
Thank you so much to Victoria for her strength and bravery in sharing her story as well as her wisdom!
If you were inspired by Victoria’s story and want to learn more about her, check out her Instagram pages:
Her page @speak_endo_toronto helps advocate for endosalpingiosis and endometriosis; this is where she posts about her experiences with her disease.
Go support her personal page @vbalega as well!
Resources
Below is a list of support groups and organizations with resources for those affected by endosalpingiosis.
Organizations:
Facebook Groups:
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Thank you for reading!
Citations:
Jackson, V. (2020, November 14). Personal interview
Jackson, V. (2020, October 3). Google forms interview
Shabbar, A. (2020, August 14). Endosalpingiosis. Retrieved November 18, 2020, from https://shapingfoundations.wixsite.com/shapingfoundations/post/endosalpingiosis
Mayo Clinic. (2019). Endometriosis. Retrieved November 18, 2020, from https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656