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My Year of Tenacity, Patience, and Perseverance: Monae' Smith's Endo Story

My Year of Tenacity, Patience, and Perseverance: Monae' Smith's Endo Story

Where do I begin? My name is Monae’ Smith. I’m 25 years old, and I’m a second year graduate student in the Doctor of Physical Therapy Program in my state. My endo story started last year on March 21, 2020. My program had just started acclimating to online-learning due to COVID-19 and I was living with my mom and stepdad at my family home. 

That night I was video chatting with my boyfriend when I felt this sharp pain in my groin, my abdomen, and right under my chest. The pain was an easy 10 out of 10 on the pain scale and I immediately hunched over in a fetal position until it stopped. Prior to this night I never had any pain in this area except for cramps during my menstrual cycle (which were always pretty bad) and I always felt like I was bloated no matter how active I was. 

So, I spoke to my boyfriend and my mom about the pain that kept coming. It felt as if I was being stabbed with a knife and my abdomen muscles would start spasming at the same time. This went on for about an hour; it was 1 AM on a Saturday night and I just wanted the pain to end. My mom suggested that I go to the emergency room because the pain was not changing, and it felt like it was getting worse (like that was possible). But I was hesitant because I don’t like hospitals, and with the pandemic just starting, I did not want to risk getting sick. 

I decided to wait it out for another 30 minutes until I just could not take it anymore. I went to my local emergency department. They hooked me up to an IV, gave me a low dose morphine, took my urine sample, and then did a pelvic exam (which was extremely painful). Even with the morphine I was still in a lot of pain, but I could finally get comfortable enough to sleep. Finally, they ended up doing a CT scan and an internal ultrasound and that’s when they found the scar tissue and an ovarian cyst. 

Two days later, I followed up with my OB/GYN and he told me that the ovarian cyst is about the size of a large tangerine and there was what looked like scar tissue around my reproductive organs. I worked with my doctor to try to relieve pain and reduce the size of the cyst with birth control pills and pain medicine, neither of which worked. Eventually my doctor opted for laparoscopic surgery to remove the cyst and investigate the root cause of my pain. My doctor was pretty sure I had endometriosis prior to the surgery but laparoscopy would help to confirm. 

The day of the surgery, my doctor said the surgery should be a simple 30-minute procedure. No big deal, right? Wrong. Turns out my surgery ended up taking almost two hours. The ovarian cyst was simple to extract but the major problem was lesions all over my reproductive organs, bladder, rectum, and part of my large intestine. He said he tried to get as much as he could out but there was so much that he did not want to risk compromising major organs. It was during post-op follow-up that my OB/GYN officially diagnosed me with stage IV endometriosis. He put me on a medication called elagolix, a gonadotropin-releasing hormone receptor antagonist. This drug basically lowers my estrogen levels to slow the growth of more endometrium scar tissue that causes me pain. 

After some time of recovery and taking this new medication, I noticed that I was STILL HAVING PAIN. I still could not exercise like I used to or sit on the floor, and sitting crisscrossed was near impossible. I was having pain urinating. I knew enough from school to know that this was not normal, and I suspected that this had everything to do with my endo. I spoke with my advisor from school and discovered that a specialized form of physical therapy could help with the issues that I was experiencing. I got my referral, went to PT, and discovered that it was the best decision I ever made in my journey! 

I learned that I had a mild diastasis recti and pelvic floor dysfunctions along with endometriosis which exacerbated the pain. In PT, my therapist taught me techniques to relieve/reduce pain such as using my hands to create cupping motion to move the scar tissue. I was also able to strengthen my core and pelvic floor while learning carrying techniques to further reduce pain with movement. 

I believe that physical therapy changed the game for me and gave me hope that I can have a great quality of life even while dealing with a chronic disorder like endo. This past year has truly been a trial of tenacity, patience, and perseverance that has shaped me in more ways than one. I am encouraged by the ways I have overcome many obstacles thus far in my journey with endo and I am hopeful for the next chapter to come! I often think about the future and wonder what it will be like for me: will I ever have children? Will the intense fetal-position pain come back? Will it be difficult to conceive and carry a child? Will new or worse symptoms come as I get older? To all these questions I pray for the very best, leave fear behind, and walk forward with hope one step at a time. 

Please note that I was going through diagnostic testing, trips to the ER and doctors’ appointments, and surgery all while enrolled in graduate school… not easy at all. I actually thought that I would either drop out or get kicked out because I was going through so much behind the scenes and completing my work was very difficult. I was so blessed to not only pass and do well in school, but also have the support of my program’s faculty, staff, and classmates during this time. 

Monae' Smith resides in Cleveland, Ohio where she was born and raised. She is studied as an undergraduate at Hampton University in Virginia  then returned home where she now continues her education as a student physical therapist. She was finishing up her last two semesters of her first year in the graduate program when she began to have symptoms in March 2020. She managed to triumph in school while battling constant abdomen/pelvic and back pain. After laproscopic surgery and Women's health physical therapy later that year, she finally feels somewhat back to normal. Monaé is now able to manage pain with abdominal massage techniques given by her PT. In her spare time, Monaé enjoys going for walks in her neighborhood,  reading, praying, painting, singing, exercising, and cooking. She attributes her positive outlook on this journey to God and the many family and friends who have supported her through this fight. She believes that this battle with endometriosis is an opportunity for her to share her life and encourage others who are suffering as she is!


 

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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.