It’s that time of the month (well, not that time) and I am so excited to present to you my pick for the July 2020 Feature of the Month! Elizabeth K’Mali has stolen my heart with her empowering story of strength and resilience. Otherwise known as @educating_endo on Instagram, Elizabeth started her account in July of 2019 and there is no better way to congratulate her on 1 year of education, than to highlight her on my Feature of the Month Series!
As always, this Feature of the Month Series was started to provide you all with additional resources from other people doing amazing work in the endometriosis community. I love to highlight advocates, educators, organizations, and patients who have taken our community by storm. And so, without further ado, let’s get into why Elizabeth K’Mali is one to follow!
Tell us your name, where you are from, and what inspired you to start your endometriosis platform?
My name is Elizabeth K’Mali and I currently live in San Diego, California. I was inspired to start an endometriosis page on Instagram, because believe it or not, it was through instagram (Jay’s from @Lifeabove_endo) where I found my current surgeons information. Prior to that, I thought I was completely out of options, post hysterectomy.
Do you think the stigmas associated with menstruation impacted your journey to diagnosis?
Absolutely! My parents migrated from India in the early 90s and unfortunately, the stigmas associated with “all things period” in south asian culture is HUGE! [See this TED talk below about the stigmas of periods in India]
I was in debilitating pain since the young age of 15, and even though I’ve had over a dozen failed procedures, it took me over 5 years to get a proper diagnosis and then another 7 years to FINALLY get “proper treatment” (aka my first excision surgery this past February). I don’t blame my parents, they truly did the best they could with what they knew–but they were told multiple times that they had a “dramatic american daughter” and that I was passing out for attention during my cycle.
Can you tell us about Priscilla and why you decided to name her?
I woke up with an indwelling catheter after one of my procedures in November 2019 (bladder/kidney procedure) and I was told I needed to have an indwelling in for as long as the kidney stents/urinary problems continued. I was inspired to name her by a fellow endo sister @taynalivingfree as she named her stoma “Lola.” 🙂
It helped immensely to turn something so shocking into a more “casual friendship” by personifying the catheter (since she’s always with me haha). Even though we (still) have a love/hate relationship, I am grateful that she exists as she is the only reason I am able to void my bladder.
Will you share your journey to motherhood? Any advice for the endo mom’s out there?
I remember the first time I was told I most likely wouldn’t be able to have a child on my own. At that point, I truly did not care–not because I didn’t want to be a mother but because I could not fathom having a child while being in such constant and debilitating pain.
Fast forward through numerous miscarriages, my husband and I finally decided we were “done trying” to have a child on our own and were ready to schedule a hysterectomy (which we later found out, I didn’t actually need). Right before being wheeled into the operating room, my nurse came into the room and said I wouldn’t be having the procedure today as my pregnancy test was positive.
Sadly, my husband and I nonchalantly looked at each other, and proceeded to ask the doctor if we could go ahead with the procedure anyway. Because we had endured so many losses at this point, we truly did not believe I would have a viable pregnancy. However, I was able to carry my first and only baby girl (with relatively few complications, hyperemesis and she was growth restricted due to fibroids), who just turned 4 this past April.
Outside of western medicine, what have you found to be the most effective tool(s) in decreasing your endometriosis pain?
While awaiting excision surgery (by Dr. Iris Orbuch), I was able to attend a holistic health center called Hippocrates Health Institute in West Palm Beach, Florida— with the help of a few angel friends of mine who set up a Go Fund Me. Here, I was able to dedicate 21 straight days of learning new coping skills that I never knew I needed; ranging from a plant based diet to 8+ hours of therapy per day.
Now, do I think diet or therapy alone changed my pain or mindset? Absolutely not. It was the combination of meeting like minded souls who were also on a quest to try their best to thrive even with their illnesses and being able to re-frame the way I dealt with my illness.
What is one piece of advice you would like to share to those who are about to have surgery?
Allow your emotions as much time (if not more), to heal as much as you would allow your physical body to heal. What we grow through isn’t easy–we are warriors, but we are still human.
Name one supplement, herb, or vitamin that you believe can help endometriosis. Tell us how it has helped you.
Having access to THC & CBD truly CHANGED MY LIFE! For over a decade, I was practically addicted to opioids as it was the only time I didn’t feel (as much) pain. THC & CBD allowed me to function at a much higher rate than any other pain medicine was ever able to provide!
How do you start and end each day? Do you have a routine that helps you manage life with endo?
While I was able to physically go into work (I work as a therapist at a prison, thankfully working from home during shelter in place), I was able to make it to 5 AM boxing classes at least 3-4 times a week in order to make it to my 7 AM shift in time. However, since I already work 10 hour shifts, this would make for a very long day, so I started incorporating mindfulness and meditation practices I could do at home into my daily routine.
Even if it was just 5 minutes of allowing the water droplets to hit my head in the shower, or practicing deep breathing while I was driving to work, or waking up a half hour earlier to read a few pages of a new book/ drinking a cup of tea before the rest of the house wakes up. Being able to find a moment of peace throughout the chaos has helped me a ton.
Learning to find time for myself, as well as SAYING NO, is still a work in progress for me to be honest, but having a debilitating illness forces you to prioritize your life. So in someways, I guess you could say I’m grateful for endo.
What do you do to manage stress?
Rely on my support system (internet fam included!). I would NOT have gotten through almost 2 decades of chronic illness without being able to lean on friends and family, truly truly.
Is there something that you always advise against when it comes to Endo treatment options?
LUPRON/ORILISSA! Although some find relief with these medications, I personally believe they were my hell on earth. Also, having a child “just to cure your endo” or having a hysterectomy in order to “cure your endo” —again, neither have personally worked for me.
NOTE FROM MELISSA: Never feel guilty for taking a medication that is right for you. However, always advocate for yourself and receiving full informed consent on all medications and procedures. Lupron and Orlissa are GnRH drugs that have a lot of controversy in the endo community. This controversy stems from the misinformation that physicians are told by pharmaceutical companies, and is rooted in the data that was falsified during its clinical trials. At the end of the day, you are in charge of your body and what goes in it.
I believe in the power of nutrition and finding a diet that helps minimize symptoms. Do you have a favorite recipe that you would like to share?
OHH MY YESSS! I love cooking so much. I actually forgot to mention this as as stress reliever because oh my yesss it is.
My favorite go-to is my mamas spinach curry! All of her veggie dishes are DELISH if you ask me, but it is oh so easy, oh so delicious, and relatively healthy haha.
There isn’t an exact recipe as my parents are very “eye ball all” kinda cooks, but here’s the basic gist:
- Turn heat on medium high, add oil of choice (I use coconut oil), and add a pinch of mustard seeds and salt to oil.
- Leave for about 30 seconds then add ½ red onion, 4 garlic cloves, a bit of ginger, and sautee for about 1-2 minutes (or until onions are soft).
- Then add 2 bunches of chopped spinach and sautee until cooked to liking!
- Add in shredded coconut or scramble in an egg for variety– SO easy, SO delicious!
Where can my readers find you on social media?
@Educating_Endo =) I’d love to meet new warriors! My DMs are always always always open for vent sessions 🙂
Any last thoughts or advice for my readers?
YOU ARE YOUR BEST ADVOCATE. Although we want to believe doctors know more about illness than patients, endometriosis is unfortunately one of those illnesses that you WILL be silenced more than heard. But, with proper education and advocating for yourself, you will find relief. We HAVE to believe in ourselves and use our voices loud and proud–because we matter and so do our future generations.
A Special Thank You!
I want to thank you, Elizabeth, for being so vulnerable in sharing her story with so much honesty. Your story is admirable and I enjoy following your journey and passion for accurate endometriosis education. I also applaud you for standing up to the cultural stigmas that you (and so many others) face. Your daughter has an amazing role model and I pray she will never have to endure what you and so many of of us have gone through.
