Happy Endoversary!
Most people don't look forward to surgery, but I was absolutely ready for it on June 10, 2016.
As a child, I regularly complained of stomach cramping. I got sick easily and had a wide range of food and air born allergies. As a result, my parents knew there was something wrong with me, but they couldn't put their finger on what was going on. They took me to multiple specialists and I had numerous procedures to test various theories.
No one ever asked me if I had heavy periods. Even if they had, I likely wouldn't know how to answer the question.
This went on for about 10 years. I slowly developed a fear of doctors and resolved to throw away all of the pills they prescribed me. None of them were working anyway.
By this time, I was married and had been living on my own for several years.
In 2016 I experienced increased, daily pelvic pain over the course of several months. My periods were getting longer and had become excruciating.
Intercourse left me sore and achy, so I mistakenly thought my symptoms were related to a UTI. My husband grew worried because I was bent over most days, not wanting to move.
My symptoms weren't new, they were just getting worse.
My pain was fairly high, so I went to an InstaCare over a Saturday. I described my symptoms: "I have brown discharge, I am peeing a lot, and have pelvic pain." I told the doctor I thought I had a UTI because that is what I was diagnosed with repeatedly in the past with the same symptoms.
The doctor prescribed me the medicine, and said he wanted to run a test. A nurse later came in and told me I might be pregnant. I was markedly upset because I had been doing nothing to try to conceive. I declined the pregnancy test.
She told me she would call me in a few days with my test results for infection. I began to take the anti-biotic. None of my symptoms improved or changed. Then I got the call from the nurse.
"You don't have an infection." She stated. There was silence on my side because my heart had dropped into my stomach. "You should probably take a pregnancy test." The nurse said, and hung up.
Panicked, I took a trip to the grocery store to pick up a pregnancy test. I remember the stupid look on the cashier's face when I went through the line.
I went home, and took the test privately......Negative.
I was truly puzzled by the result. "If I don't have an infection, and I'm not pregnant----what is going on!?"
So I began the long and frustrating journey to understand what was happening to my body. I Googled my symptoms, and all of the results pointed to Endometriosis.
My next step was to call my mother and ask about any history of gynecological illness in our family. I was both angry and surprised when my mom said, "Oh yes. I have Endometriosis." (The emotions related to that conversation are a story for another time.)
I set appointments with OBGYNs to have examinations and recommendations on next steps. None of my doctors were willing to perform the diagnostic surgery. They all told me to go on "the pill". I was so exasperated that none of these doctors were willing to give me a definitive answer.
They couldn't explain how to manage my pain and they didn't want to say, "You have Endometriosis," for fear of being sued.
I was at my wits end, and quite literally ready to kill myself. I began contemplating the ways I wanted to die. Fortunately, I had a friend who had recently been diagnosed with Endometriosis herself. She must have been inspired because she added me to a small Facebook support group for women with Endo.
Desperate for sympathy and some sign that someone out there understood me, I reached out to the admin of the group. She offered her love and recommended a doctor to me.
I reluctantly scheduled an appointment with him thinking he would be like all the others. The nurse escorted me into a small office where Dr. Aagard held consultations.
My mind raced as I sat by myself in the office. I couldn't help crying. Tears freely flowed even before the doctor came in the room. I was in so much distress that Dr. Aagard said, "If you all you want is to know, then we'll do the surgery." I left his office feeling elated that SOMEONE had listened to me!
The picture above is pre-op. Post op was horrific. The first thing I remember was being wheeled down the hallway and Dr. Aagard saying, "We found a large Endometrioma on her left ovary. She has Endometriosis."
I responded with sobs equivalent to those that a wild banshee might make. "I knew it!! I never want to have children!" I felt that in many ways the medical community had failed me. And on top of that, I had to deal with the shoulder pain from the gas escaping my body.
I was extremely upset, but I also felt validated that all those other doctors didn't believe me when they should have. My recovery started that day, and continues to today. As I reflect on the years of pain I experienced with no answers, I recognize that the Lord had a hand in the outcome. I learned a great deal of patience in having to actively wait. This quote from Dieter F. Uchtdorf summarizes what God helped me understand:
"Patience is not passive resignation, nor is it failing to act because of our fears. Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!"
Happy 2 year Endoversary to me! What do you do to remember the day you were diagnosed?
As a child, I regularly complained of stomach cramping. I got sick easily and had a wide range of food and air born allergies. As a result, my parents knew there was something wrong with me, but they couldn't put their finger on what was going on. They took me to multiple specialists and I had numerous procedures to test various theories.
No one ever asked me if I had heavy periods. Even if they had, I likely wouldn't know how to answer the question.
This went on for about 10 years. I slowly developed a fear of doctors and resolved to throw away all of the pills they prescribed me. None of them were working anyway.
By this time, I was married and had been living on my own for several years.
In 2016 I experienced increased, daily pelvic pain over the course of several months. My periods were getting longer and had become excruciating.
Intercourse left me sore and achy, so I mistakenly thought my symptoms were related to a UTI. My husband grew worried because I was bent over most days, not wanting to move.
My symptoms weren't new, they were just getting worse.
My pain was fairly high, so I went to an InstaCare over a Saturday. I described my symptoms: "I have brown discharge, I am peeing a lot, and have pelvic pain." I told the doctor I thought I had a UTI because that is what I was diagnosed with repeatedly in the past with the same symptoms.
The doctor prescribed me the medicine, and said he wanted to run a test. A nurse later came in and told me I might be pregnant. I was markedly upset because I had been doing nothing to try to conceive. I declined the pregnancy test.
She told me she would call me in a few days with my test results for infection. I began to take the anti-biotic. None of my symptoms improved or changed. Then I got the call from the nurse.
"You don't have an infection." She stated. There was silence on my side because my heart had dropped into my stomach. "You should probably take a pregnancy test." The nurse said, and hung up.
Panicked, I took a trip to the grocery store to pick up a pregnancy test. I remember the stupid look on the cashier's face when I went through the line.
I went home, and took the test privately......Negative.
I was truly puzzled by the result. "If I don't have an infection, and I'm not pregnant----what is going on!?"
So I began the long and frustrating journey to understand what was happening to my body. I Googled my symptoms, and all of the results pointed to Endometriosis.
My next step was to call my mother and ask about any history of gynecological illness in our family. I was both angry and surprised when my mom said, "Oh yes. I have Endometriosis." (The emotions related to that conversation are a story for another time.)
I set appointments with OBGYNs to have examinations and recommendations on next steps. None of my doctors were willing to perform the diagnostic surgery. They all told me to go on "the pill". I was so exasperated that none of these doctors were willing to give me a definitive answer.
They couldn't explain how to manage my pain and they didn't want to say, "You have Endometriosis," for fear of being sued.
I was at my wits end, and quite literally ready to kill myself. I began contemplating the ways I wanted to die. Fortunately, I had a friend who had recently been diagnosed with Endometriosis herself. She must have been inspired because she added me to a small Facebook support group for women with Endo.
Desperate for sympathy and some sign that someone out there understood me, I reached out to the admin of the group. She offered her love and recommended a doctor to me.
I reluctantly scheduled an appointment with him thinking he would be like all the others. The nurse escorted me into a small office where Dr. Aagard held consultations.
My mind raced as I sat by myself in the office. I couldn't help crying. Tears freely flowed even before the doctor came in the room. I was in so much distress that Dr. Aagard said, "If you all you want is to know, then we'll do the surgery." I left his office feeling elated that SOMEONE had listened to me!
The picture above is pre-op. Post op was horrific. The first thing I remember was being wheeled down the hallway and Dr. Aagard saying, "We found a large Endometrioma on her left ovary. She has Endometriosis."
I responded with sobs equivalent to those that a wild banshee might make. "I knew it!! I never want to have children!" I felt that in many ways the medical community had failed me. And on top of that, I had to deal with the shoulder pain from the gas escaping my body.
I was extremely upset, but I also felt validated that all those other doctors didn't believe me when they should have. My recovery started that day, and continues to today. As I reflect on the years of pain I experienced with no answers, I recognize that the Lord had a hand in the outcome. I learned a great deal of patience in having to actively wait. This quote from Dieter F. Uchtdorf summarizes what God helped me understand:
"Patience is not passive resignation, nor is it failing to act because of our fears. Patience means active waiting and enduring. It means staying with something and doing all that we can—working, hoping, and exercising faith; bearing hardship with fortitude, even when the desires of our hearts are delayed. Patience is not simply enduring; it is enduring well!"
Happy 2 year Endoversary to me! What do you do to remember the day you were diagnosed?
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