Lakia was diagnosed with Endometriosis when she was 29 years old, after suffering with symptoms since the Sixth Grade. Now she’s 30, living in San Diego, and she’s found our little support group. I met Lakia just a few weeks after her diagnositic surgery and she’s recently undergone a difficult decision for her second surgery! Lakia has proven to be an amazing and incredibly strong woman, and someone I am proud to call friend. Her story follows…
Lakia’s Journey: I always thought in my mind that my reality was normal. But what is normal? My first period was in sixth grade. I remember being so excited because I finally felt like a woman! I stuffed my bra everyday, secretly shaved my legs, and wore tinted lipgloss. But that first period felt like a rite of passage. All of the boys will like me now! Little did I know what was ahead…
Every month during school, I would bleed through my pads because of the heavy flow. I was too afraid to get up during every session at school, and didn’t want the attention constantly drawn to me when I had to leave the room with a pad or my purse. Everyone would know… Instead, I would bring jackets and sweaters to school, and keep them wrapped around my waste to soak up the leakage. This became my sixth grade’s self normal. In high school is when I recall the pain becoming unbearable. But, all girls complained about their period. What would make mine different or more significant? When they became irregular, I finally was put on birth control pills. I took 1000mg of naproxen every 8 hours when I was in my cycle as well as the polls through college. The medicine helped with the pain for the first few years, but over time the cramps became debilitating again. After college, I decided I need to give my body a break and stopped all medication.
Fast forward to 29 years old, and I’m living in San Diego. January 2016, the year of 30 kicks off with a vengeance. The worst period of my life- vomiting, debilitating cramps, flooding from bleeding, you name it, I had it. When the bleeding stopped, the symptoms didn’t. I decided to go to the ER after trying to push through it for a week. Diagnosis was a hernia, fluid in my lungs, anemia, and fibroids in my uterus. They couldn’t do anything for me except give me pain meds and send me on my way. For the next three weeks, I visited 10 different doctors, has CT scans, ultrasounds, blood tests, X-rays with not solution. I lost close to 10 pounds living on norcos to ease the pain. In an transvaginal ultrasound, they found a softball sized mass in my uterus. The GYN wanted to operate immediately due to its location. Unfortunately, I was anemic which would likely mean I would a blood transfusion during surgery. I had a month to iron overload.
Surgery is complete. Unfortunately, my GYN was not able to remove the mass as it was attached to my bladder. She drained it and assured me that it would be back. What should have been a laparoscopic surgery became a laparotomy as soon as they went in due to the their findings of severe stage 4 endometriosis. I got to spend a night in the ER. Post surgery, it only took about a week for the pain to return. I was told to start taking two birth control pills a day to help with the bleeding and pain. My GYN said she didn’t feel comfortable operating my endo because it was so complex, so she referred me to another doctor.
He, also after reading my surgical report didn’t feel comfortable doing a procedure, and suggested Lupron and referred me to a gynecological oncologist. I originally agreed to the shot. While I waited to have it administered, I took a month to do some soul searching and listening to my body. It wasn’t right. I couldn’t take the shot. The oncologist agreed to the surgery. He did admit to me that he felt a bit of ethical concern giving a woman who has never had children and only 30 years old a hysterectomy and gave a bit of pushback before agreeing to the surgery.
December 13, 2016- surgery day! I had a full hysterectomy. He wanted to try to keep some, but they were all obliterated by the endo. In the middle of the procedure, he had to call my dad because the disease has spread to my bowels and appendix. About 5 inches of my small intestine, 5 inches of my large intestine, and my appendix were removed requiring that he perform an organ resectomy. He predicted that I would have had to have emergency surgery due to organ failure caused by the endo within the next few months if he had not operated on it that day. My doctor was relieved that I went with my gut, and pushed for the surgery instead of waiting.
After six days of being attached to IVS, living with a draining tube coming out of my stomach, and hour long sleep sessions, I was free!!
I’m in the process of recovering still (2 months post-op), and I never would have imagined that I would feel this amazing! I know I have a long road ahead, with the possibility of the endo popping back up, but every decision made, tear shed and prayer prayed has been absolutely worth it.
Words of Advice for Us: Sisters- two things that are so incredibly important through this whole journey… SUPPORT!- Thank God that a friend found the Bloomin’ Uterus group for me! It’s incredible to have a connection with so many strangers that can relate, mentor and just listen when you need them. And friends!!! My friends and family have completely blown me away with the amount of love, compassion, and time they have spent learning and loving me through this process. My Dad came to every single appointment with me, and I even had over 50 people show up for a going away brunch for my uterus!!! Knowing that you’re not alone is half of the battle! LISTEN TO YOUR BODY- like I said, my doctor wasn’t gung-ho about the surgery, but was incredibly happy we went through with it in the end. A hysterectomy is not the answer for everyone. It’s certainly not a cure. But push, plead, fight for what’s good for you and your body. You deserve it!!
The Last Word: Thank you Lisa Drayton for your positive energy, informative posts, and constant encouragement!!! You are truly an incredible person!!!
If you wish to contact Lakia, you can email her.
I want to send a special Thank You out to Lakia for being brave enough to share her personal story, struggle, and victories with us today. I am so grateful that you found us and that we met, but am especially grateful that you followed your instincts! A second surgery is never easy – ad your decision to undergo the full hysterectomy was a difficult one, but I am SO VERY HAPPY for you! Good for you for pushing self-advocacy!!! Wishing you a continuous good recovery! I will walk proudly beside you on March 25th! Yours, Lisa.
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.