I didn’t know how much my life would change after receiving expert excision surgery for my endometriosis pain and symptoms back in early June of 2019 (June 4th to be exact and yes, I will probably remember that date forever).
A part of me was hopeful, I wanted this surgery to work and at least minimize some of the chronic pain that had turned me life completely upside down the previous year. I had done so much research in Nancy’s Nook (a Facebook group dedicated to self-directed learning on endometriosis) after my first laparoscopy in late December 2018 confirmed endometriosis. Unfortunately, that surgery didn’t really do much for my pain, and created a new pain symptom. Nevertheless, I tried to find new ways to manage this disease that had finally been found and confirmed via pathology.
That alone was validating. The pain wasn’t all in my head – I had a disease that’s nearly impossible to find without surgery.
Not having a diagnosis for weeks, months, or years is torture.
The torment never stops when you’re stuck waiting for answers. The tests never stop, the questions never stop, the #Anxiety never stops. Most importantly, the pain and symptoms don’t stop. Nothing ever stops – until you finally get your answers.
Or so I thought…
Call me naive, but I really believed that once I received my confirmed diagnosis of #Endometriosis, things would start to get better, not worse. Once I had my answers, I could create a plan for my pain and symptoms then get back to living life as once before this nightmare started. My new chapter of putting all this behind me would finally begin.
For a lot of us with chronic illnesses, that's simply not how it always goes.
Yes, you read that right.
My chronic illness has changed my life for the better – in some ways.
When I was diagnosed with endometriosis, I was so relieved to put a legitimate disease name behind all my health problems after going several months without any answers. It was validating. I wasn’t crazy, it wasn’t all in my head, I had a disease that’s hard to find without a laparoscopy surgery.
Since then, I have been trying to accept that I have an incurable disease and let me tell you, that is one tough pill to swallow. You feel such a mix of emotions when you find out you have a chronic illness and that it will be a part of you for the rest of your life.
However, it is crucial that you find the blessings beneath your curse.
I recently took some time to reflect on my situation and really evaluate everything from when I first started having chronic pain and symptoms up until now and here’s what I realized:
It all started back in July 2018, out of nowhere I had a sudden onset of symptoms that happened at my workplace, a commercial printer that offered direct marketing services. The work environment often had strong fumes of inks, toners, cleaners, and more in the air. This is what led to my first doctor thinking I developed a work allergy, which may have been triggering a vasovagal #Syncope reaction, and she recommended finding a new workplace. As a precaution, I took time off from work to see if my symptoms subsided being away from the workplace.
They didn't, and unfortunately, they got worse. Much worse.
My lower abdominal pain hit me full force, and I could only find slight relief by using heat methods, such as a heating pad, a hot bath, shower or my incredible microwavable flax bag my boyfriend's mother made me and has been a godsend gift. My bowel movements were all over the place and painful at times, which no one wants to hear about or enjoys talking about. I felt so sick and nauseous that I struggled to eat, my stomach would bloat so much it would hurt and after eating my abdominal pain would get even worse. It was a terrible experience, and this doesn't also include the ongoing headaches, sore neck, after driving I would feel even sicker and almost dizzy, lower #BackPain that made it hard to sleep, and sudden fatigue episodes that would hit me like a brick and literally have me struggling to keep my eyes open for an hour or more.
To My Significant Other,
I’m so sorry that I must put us through this. Getting #Endometriosis was never part of my plan for us, and it has drastically changed my life, some perspectives, and our relationship.
It makes me feel horrible and sad that I can no longer be spontaneous because my daily pain/symptoms vary too much. There are times where I know I will need to fight through it, regardless of how bad they are, but there are some days I just need to rest and take it easy.
I wish I could go back in time and do things that I was hesitant about, like taking more vacations or weekend getaway trips to the city, heck even walking our dog more! If only I would have known or had clues, to know what lied ahead for me; I think I would have lived differently.
I miss you, terribly.
It will shortly be coming up on a year since I started having all these health problems and began a whole new journey that I wasn’t prepared for and did not expect at all.
My #Endometriosis hit me like a train and knocked me off my feet for several months and still restricts me to this day. During those months of being #Undiagnosed, I experienced the worst #ChronicPain of my life with other daily symptoms that would not ease up, no matter how much time, medications, or rest I gave you.
We're officially kicking off our "Meet Your Endo-Sister" series with the owner and writer of the Understanding- Endo blog, Sara. This post provides a quick snapshot of Sara's endometriosis journey so we can continue to build awareness and help other women understand that symptoms and diagnosis time vary greatly from woman to woman.
"You should always lead by example, which is why I filled out my own form to share my endometriosis snapshot journey with you."
Endo-Sister Name: Sara T. - Blog Owner & Writer of Understanding Endo
Current Age: 30
Age You Were Diagnosed: 30
How long did it take you to get diagnosed with endometriosis? Under 1 year - I know, I am one of the rare and lucky ones!
Was your diagnosis confirmed? If yes, how? Yes, my Stage II endometriosis was confirmed via laparoscopy surgery and pathology report in January of 2019.
A lot of women with endometriosis or those who suspect they have endometriosis want to know what other women experience with this disease. It greatly varies from woman to woman, which is why I think it's hard to diagnosis endometriosis in the first place and why it takes well over five years. This series will provide endometriosis snapshots so you can understand just how complicated endometriosis can be.
Today is an exciting day, ladies!
After some hard work and pushing through some bad pain/symptom days, I have finally completed a Google Form that will help provide us a snapshot summary of our sisters with endo, which will include their symptoms, along with other helpful information that will help spread awareness of endometriosis and hopefully teach other women who are struggling to find a diagnosis quicker by understanding how endometriosis affects woman differently and why it should be considered.
As I receive each form submission, my heart goes out to every woman that hits submit.
"I wish someone would have told me that anxiety is natural and will likely develop as I searched for answers to what was going on with my body."
When you get sick, you go in to see your doctor when things don’t improve after a specific amount of time. Everyone is different, some people will wait a couple days while others wait a week (or longer) before going in to see their doctor. And that’s fine, no matter where you fall on the timeline.
When you go into the doctors to explain what’s going on and they cannot give you a direct answer on why it’s happening, that's when anxiety slowly starts to infiltrate your mind.
Our Mission: Spread Endometriosis Awareness
Our goal at Understanding Endo is simple: We want to help you learn more about endometriosis.
Do you want to be heard?