Longevity is powered by Vocal.
Vocal is a platform that provides storytelling tools and engaged communities for writers, musicians, filmmakers, podcasters, and other creators to get discovered and fund their creativity.
How does Vocal work?
Creators share their stories on Vocal’s communities. In return, creators earn money when they are tipped and when their stories are read.
How do I join Vocal?
Vocal welcomes creators of all shapes and sizes. Join for free and start creating.
To learn more about Vocal, visit our resources.Show less
After almost ten years of painful menstruation, constant UTI symptoms, and no answers, I started on my Endometriosis journey. On Thanksgiving 2016, I started experiencing new sharp and twisting pain. I went back to the surgeon I had chosen for exploratory surgery a few years before and told him now is the time. I have Stage 4 Endometriosis with Chocolate Cysts (Stage Three) causing Deep Infiltrating Endometriosis lesions. Along with these DIE lesions, I have spots of endometriosis all over my pelvic cavity ranging from Stage 1 severity to Stage 4 severity. These multitudes of lesions and stages had started to severely impact my mobility and daily life. The FDA approved drug Depo-Lupron or "Lupron," is my last choice and I am starting it soon.
So let me tell you about myself!
I am a senior in college and hold many roles (daughter, sister, S/O, etc) and jobs. I am the Vice President of my college's Chronic Illness Support and Awareness Club, mostly owner training my service dog, and nanny for three children, some of whom are also chronically ill. I am studying to be a social worker and look forward to the day where I can help patients like myself get the helpful advice I never received.
A few things to know about me before you continue reading:
Lupron Chronicle posts will be highly medical, yet understandable for lay people and newly diagnosed. This means talking about blood, guts, and graphics. Topics will be trigger warning-ed for such content either at the beginning of the post or right before the context.
Nothing you can say will scare me. I have almost died on multiple occasions, been in death's neighborhood, and helped raise a nonverbal autistic teenager with a traumatic brain injury causing mental and personality changes. Nothing. Will. Scare. Me. (Including your horror stories, those I like to make lessons out of, so send them my way!)
I will not be naming doctors I have had bad experiences with, only positives. If private messaged or otherwise contacted, that could change. I will only post positive doctor visit reviews and recommendations or referrals. I do this to only positively impact your healthcare outcomes. Any advice I offer is to add positivity to your experience with healthcare professionals, and to minimize negative visits and treatments.
My Endo Intro
From the beginning of my period, I have had symptoms ranging from emotional, physical, and neurological — you name it, I have had it. My periods were irregular, but when I did have them, they were excruciating. Pain management was minimal, treating the actual endometriosis, but I found supplemental care for my other symptoms that, at the time, we did not know were related.
For example, it has only been added to the list of endometriosis symptoms this year, but my main symptom was dysuria in the absence of infection. This means I had painful and burning urination without an infection/UTI. In addition, I had the most pressure-filled and heavy sensation in my abdomen that trickled down into the peritenium (the spot between your labia and thigh). Kindly referred to as "The Ball," it along with burning were always my complaints.
Fast forward to Thanksgiving 2016. I wake up and it's a three ice pack kind of day, a day where if it wasn't a holiday I would be running to the ER. My mom is a doctor...an OBGYN...so I knew this was "girly" type pains, even though my period was medically paused by using NuvaRing continuously. So I threw on ice packs and made a mental note of where my emergency pain medications, and anti-nausea medications were (Zofran and T3 - Tylenol with Codeine left over from my wisdom teeth.)
Disclaimer: I was never lucky enough to have pain management directly for Endometriosis-related pain. Something commonly used is a low-grade narcotic called Tramadol, so before you ask, no I did not have any, yes I am aware T3 is a narcotic, and no I do not take any form of narcotic pain medication regularly.
After driving with an ice pack on each ovary and one between my legs to calm the burning sensation, we arrived at our Thanksgiving lunch. I needed pain meds, because the pain was getting worse, despite the seat heater being turned to the highest setting, and I was using the ice packs.
I make it through the holiday, but my mom and I went into the surgeon's office at their next available appointment. I was booked for surgery on February 15th, 2017.
On February 15th, 2017 I found out I had Stage 4 Endometriosis with every type of Endometriosis lesion known to medicine. I did not just have Stage 4, I had all 4 stages at once. The surgery worked and I went home that night and "The Ball" was gone right away from what I could tell, and when I went to pee I had zero pain. I even refused post-op pain management, because all I wanted was a hamburger and to watch the rain. My daily pain was gone and the post surgical procedure pain was nothing compared to it. My mom looked at me, saw the difference, and knew that we had made the right choice. Now to get the doctor to prescribe the best available medication to manage the condition better, Lupron.
He (the surgeon) would not. He was afraid I would be allergic... There have only been six reported cases of status anaphylaxis to Lupron, out of millions taking it and with FDA approval. I shared those facts with the surgeon and instead I was treated like a woman in a car dealership. I have not gone back to my surgeon, because he felt a nose spray with a similar ingredient to the Lupron would work. He must have forgotten in my allergy history that I have asthma and restrictive lung disease on top of Endometriosis and at least 6 other major conditions. The spray would not be appropriate to use and would do more harm than good likely.
Now, where to get a perscription for Lupron? Who did I find to help me? How is my life now? What has happened since February?
You'll find out in my next post.
As always, with love and extra spoons,
(Spoons refer to Spoon Theory for Chronically Ill patients)