When and how were you diagnosed with endometriosis? Were there any misdiagnoses along the way?
My journey has been a long one, starting from age 16, until my current age of 28. My gynecologists first believed I had endometriosis when I was 21 years old. The symptoms were there, but they were hesitant to give me an official diagnosis, which led me to take my health into my own hands.Did you ever feel like your doctors weren’t listening to you, or even worse, gaslighting you?
Definitely in the beginning of my womb care journey, when I was seeking oral contraceptive pills that were recommended to me, only to be denied them. I remember going to several male doctors and their only concern was that I would begin having sex too early because I was 16. I eventually received them after seeing a woman-led gynecology center.“When I was 21, my doctor told me I would have to live with my pain for the rest of my life. The idea that my health is predestined triggered me. I left my appointment in tears, but also determined to take matters into my own hands.”
How has endo affected your life, physically and emotionally?
It has been a JOURNEY that is ongoing. I believe it has made me more empathetic, especially when working with past clients. I’ll share a few experiences: I remember at 16, practically begging my mother to let me take birth control for the pain. Every month I would be greeted with cravings, sadness, and extreme abdominal and back pain so bad it would make me vomit. Like projectile vomit. Which usually meant staying home my first two days. First, for the pain, second for the exhaustion from stress my body was under.
A period memory of mine, and many with this disorder—and periods in general—will understand this next extremely visual portion of this bloody piece… During your period, there are several muscles contracting, moving, and working. Your body is working extremely hard and can be under a lot of stress. In comes the lovely and infamous period poops. It’s like a great release, once your period arrives. Everything comes out. Everything. And if you have endometriosis, which can cause endometrial tissue to grow in your rectum—causing extreme pain—having a bowel movement can hurt. Like hell. Sharp contractions running through every happy hole in your nether regions, making it feel like both a relief or wanting to die. No in between. I accidentally flooded the toilet my first few days in one of my old Bushwick apartments that looked and felt like I was living in some sort of Twilight Zone, Wes Anderson turned Friends episode. To my defense, the pipes were really old. And well—I used a lot of toilet paper. First day period mess. The entire bathroom was flooded, and began leaking to the floor underneath. I mean… That’s one way to break the ice with a house full of boys, right?
Another experience: I remember the voicemail my father left for my high school track coach, explaining that I wouldn’t be able to make it because of how bad my period was, and the amount of pain I was in. I was 17 years old at the time. I remember feeling embarrassed and shocked to varying degrees, but also incredibly proud to hear him stick up for me this way, calling periods normal. I found out the next day that my coach played it outloud for the entire team to hear, humiliating me in front of my peers for missing a meet. I felt ashamed. Weak. Why couldn’t I just be like everyone else? Why was my pain so severe? Girls on my team told me I should just take Tylenol like they do. That I have to be stronger. Why was it such a big deal? In hindsight, I can’t even be mad at them. Being strong and pushing on is something those with vaginas are always being taught. Especially people of color, serving as a trauma response and way of survival. Be strong, put on a brave face, and do what you have to do. Cry later. And trust me—I have.
What treatments have you tried, and what’s been the most useful? How are you feeling today relative to what you’ve been through?
I’ve taken oral contraceptives for five years, before taking myself off of them, adopting a more plant-based lifestyle, learning more about the disease, what triggers symptoms, and listening to how my body reacts to stress, certain foods, etc.
As someone who works in food and nutrition, how have diet and other holistic remedies played a role in mitigating your symptoms? ?
It changed my symptoms completely, which is what inspired me to begin health coaching people with periods and menstrual health disorders. Food quality, stress, and environment all play a great role in how you feel. This is a given, of course. When I was 21, my doctor told me I would have to live with my pain for the rest of my life, and that the cysts in my breasts, a common symptom of menstrual and hormonal related diseases, could eventually develop into cancer. This of course traumatized me, as I lost my biological mother to cancer when I was young. The idea of something being finite, and that my health is predestined, triggered me. I left my appointment in tears, but also determined to take matters into my own hands. I began doing research on endometriosis, and finding women online via Instagram and forums who found healing without the use of western medicine to learn from.
I began my healing process by eliminating common endometriosis triggers like caffeine, meat, and dairy, and incorporated more fiber and plant-based proteins through whole foods into my diet. After one month of following this regime, the cysts completely went away and my PMS and painful cramps subsided. I was in shock. Everything changed about me—from the way I naturally smelled, to my skin health, to energy levels. I don’t follow a strict diet of any sort, but I remain balanced with my food. I definitely notice a difference in my symptoms, however, when I indulge in more animal protein heavy foods. The difference now is that I know how to care for myself when I’m having a flare, instead of shaming myself. My cysts remain gone still to this day after several breast and pelvic exams.
“I remember the voicemail my father left for my high school track coach, explaining I wouldn't be able to make it because of how bad my period was, and the amount of pain I was in. I found out the next day my coach played it outloud for the entire team to hear, humiliating me in front of my peers.”
What advice do you have for someone who might be suffering from endometriosis, or any chronic illness, and struggling to get help? ?
Keep pushing and advocating for yourself, despite what you may be hearing from loved ones, practitioners, etc. Living with a chronic illness is exhausting, let alone trying to convince others to believe in you enough to actually treat you, and treat you well. But you are your first priority. Life isn’t meant to be lived without support, and you deserve healing, however that looks for you.
Is there anything you wish your doctors had told you? ?
1) That birth control pills aren’t the only answer for menstrual disorders or pain. But they CAN be helpful for some people who bleed. 2) Your mental health can be jeopardized during and after. There should be support and education on what to do when/if this occurs. 3) Food and lifestyle changes everything. 4) I wish we were taught more about the rise and fall of our hormones, and how they impact us throughout our cycles. I didn’t know what ovulation was until I stopped taking my birth control pills, and began ovulating again!
Given that it takes an average of 10 years to diagnose endo, what sort of things can we do to help change that? ?
Simply listen to your patients. Take them seriously, and begin treating them from the beginning. This disease is relentless, and can spread and worsen, fast
How can Sollis help with endometriosis?
The sad truth is that when women go to a typical ER with pain in their stomach, they tend to get dismissed as hysterical or over dramatic about their period. From what I understand, the doctors at Sollis listen to us, take our pain seriously, and can get us an immediate ultrasound or CT scan, which can help rule out the possibility it’s just menstrual cramps.
What do you think is the biggest misperception about endometriosis? Is there anything you wish you could help people understand better?
It is an invisible illness that requires patience from yourself and others. There will be some months where you feel little pain and others where you cannot leave your bed. Perfection in how you manage this disease doesn’t exist, and there needs to be a balanced approach to your healing journey so that you can enjoy your life and not become consumed.
Any good words to live by
You deserve to feel and be WELL.
