Let’s Destigmatize Endometriosis
Meet Alexandra Camara, a mom of two who has struggled with endometriosis her whole life. She created @yellowbowsxo to destigmatize the illness, and provide a safe place for people to learn about the illness.
My Sex Bio: Tell me a little about yourself!
Alexandra Camara: My name is Alexandra, I live in southern Ontario, Canada. I am married to my high school sweetheart and we have two young boys.
I started to be symptomatic with endometriosis at the age of 7, yet it didn’t become apparent until I was 14. I first knew about endometriosis at the age of 9, when my mother was diagnosed. I underwent several hormonal birth control therapies to try and manage my symptoms, with each option working for the short term and then failing within six months. “Dealing with it” became my norm.
By the age of 29 I had undergone two pelvic surgeries with a gyn/ob with the hope of relieving my symptoms, but when they failed, I pushed for a hysterectomy due to the severe suspicion of Adenomyosis. Shortly after my hysterectomy I started to find the endometriosis community online, and my world was turned upside down. There was so much information I had never been told; it was mind blowing.
Six months post-hysterectomy I started to experience thoracic endometriosis symptoms. Thankfully to the online community, I felt far from lost. I found resources, information and education on everything that I needed to know in order to get the best care. Two and a half years later, I underwent my very first proper endometriosis pelvic excision, which was paired with video-assisted thoracic surgery. I had endometriosis resected from both sides of my pelvic wall, behind my left ovary and in the deep right pocket of my pelvis. Endometriosis was also resected from the anterior side of my diaphragm and between my lung and chest wall near my heart.
I am passionate about raising awareness and education in and around endometriosis. I am hopeful with more awareness and education there is a brighter future for the generation coming behind me.
If I knew then what I know now, things would be significantly different.
MSB: What lead you to create Yellowbowsxo?
AC: I created @yellowbowsxo just over a year ago. It was in the middle of the worst I had ever felt in my entire life with this disease. I was suffering so badly with my thoracic endometriosis symptoms and I didn’t know where to turn. I was waiting for my initial consult with my endometriosis specialist, and I was feeling alone and had zero resources or alternative treatments to help me manage this.
I started @yellowbowsxo in an attempt to find others who are struggling with thoracic endometriosis, to find someone or a handful of other people to find ways to manage and cope while awaiting surgery. What it has turned into is something more than I ever could have imagined -- a place for people seeking someone struggling the way they are to make them feel less alone, heard, and understood.
MSB: What is the most common misconception, in your experience, that people have about endometriosis?
AC: There are quite a few misconceptions in and around endometriosis, but to break it down to the biggest misconception would be that it is just a bad period.
It is so much more than just a bad period. It can affect you only during your cycle, it can affect you during your cycle and ovulation but it can also affect you between your cycle and ovulation.
It is not a disease strictly targeted to your period, it affects so much more than just that.
MSB: In one sentence, can you describe how it has played a part in shaping your identity?
AC: Endometriosis has shaped me in ways I can’t even begin to explain; it has taught me to be strong, resilient, brave, patient, and knowledgeable.
MSB: When were you diagnosed? What is the story behind that?
AC: My symptoms started at the age of 7 with recurrent chronic UTIs, which later I found out was most likely due to endometriosis on my bladder. My symptoms started to become apparent at the age of 14 when I started my first cycle. At this point my mom had already received a diagnosis of endometriosis for herself, which made me seven times more likely to have the disease. So between that risk factor and knowing first-hand the symptoms I experienced, we knew what we were up against.
That being said, it still took seven doctors and five and a half years of dismissal to finally get a surgical diagnosis. On average it takes seven to 10 years for a diagnosis, which is usually after a long road of dismissal and heartbreak.
MSB: How does it change your daily life?
AC: Although in some cases it doesn’t change people’s daily lives, it most certainly has changed my life, including my dietary restrictions, activity level, fatigue level, and the ability to have the energy and patience to mother my children.
I recently underwent endometriosis excision surgery. The proper surgical treatment with the proper endometriosis specialist should help give you the opportunity to lead the best version of your life with this disease.
However, in some cases women have endometriosis and present very few symptoms, and often aren’t diagnosed or become diagnosed during another surgical procedure. Endometriosis is diagnosed in stages, similar to cancer. The stages of endometriosis are mainly used when dealing with fertility, as a stage of diagnosis doesn’t equate to the magnitude of symptoms one would have. A patient with stage 1 or stage 2 could suffer greatly, whereas a patient with stage 3 or 4 might not be overly symptomatic.
MSB: How do you see the future of endo and its perceptions changing?
AC: I am hopeful that with the use of social media and patient advocates like myself that it changes A LOT!
We are at a point where the change needs to be made.
We need to stop referring endometriosis patients to ob/gyns and start sending them to endometriosis excision specialists. We need to stop telling people that a hysterectomy and/or the removal of ovaries will cure you. We need to start realizing it is a disease that affects on average 10 percent of people worldwide, that 10 percent is based on diagnosis, and with the average diagnosis taking seven to 10 years, I am almost positive that 10 percent is highly under shot. I am excited for the day when someone says endometriosis, we don’t have to explain what it is.
Thank you for talking with us, Alexandra! Don’t forget to follow her social media.
