Podcast Episode #32- My Journey with Endometriosis, Emergency Surgery and what God has taught me about Pain

How Endometriosis has impacted my life after an emergency surgery, diagnosis and another surgery 2 years later. God has taught me a lot about pain, and dependency on Him.

“911 what’s your emergency“?

 I’m sure the call went something like, “A lady has collapsed, and is having trouble breathing”. You never think someone will need to call 911 on your behalf.

I was super healthy and only 31 years old, I definitely didn’t expect what was about to happen.

Caroline

how it all started

We call it my “Burst Day”.

My hubby and I were traveling home from New England after touring with a Cirque show. He drove the 26 foot truck and built the show and I did costuming.

This drive home was different than other drives on tour. We were making a pit stop in Tennessee for a cousin’s wedding, where my husband was to officiate.

We hit considerable traffic driving through New York City. As soon as we were over the George Washington Bridge into New Jersey, we exited to use bathroom and get some coffee.   

The emergency

While in the restroom I quickly realized I wasn’t feeling well. The onset of a pain was quick and excruciating. This caused me to have trouble breathing, I figured I’d better get out of the stall before I passed out. 

I texted my hubby and let him know something wasn’t right, and I was coming out. He asked what I wanted him to do but it was hard to communicate. Despite the fact I couldn’t really breathe it was hard to realize how bad off I was. Not wanting to over react, I told him we should just wait, maybe I needed fresh air.   Being outside didn’t make any difference. My hubby began researching nearby urgent care facilities.

I prayed,  “Lord, I don’t know what to do….help“!

Immediately a man walked up and let me know he was an off duty EMT. He said there were many good hospitals in the area and encouraged me not to hesitate to call 911.   Pausing only for a moment he said,  “I’m calling 911”.

The peace I felt in the moments even before the ambulance arrived was unexplainable. I felt so close to God and just trusted He was in control. If it was time for me to go to heaven, I was ready. 

The ambulance arrived and I was rushed to the hospital.  Tests were ran, I was given morphine and it barely took the edge off, no answers.  My white blood cell count was so high they decided to admit me.   

Still no answers

In the morning I still thought, maybe we would make it to the wedding after they figured it out. However, my hubby confirmed it wasn’t going to happen

I tell you, I pray everyday for God to guide my steps, this wasn’t what I had in mind. 

My body was going into toxic shock, they couldn’t really see why.  After suspicions it had something to do with my reproductive organs they brought in the leading OBGYN. He ran more tests and informed me they needed to operate immediately. 

We were so Blessed, some of our dear friends the Rainey family lived in Manhattan 7 miles from the hospital. They came as soon as they could and sat with my hubby through my surgery.

26 hours after being admitted I was rushed to surgery on a gurney. I flew down the hall bursting through the doors, just like they do in the movies, I heard:

You will keep him in perfect peace, him who’s mind is stayed on You because he trusts in You.

Isaiah 26:3

I thought,  I remember reading this verse but didn’t remember memorizing it. 

It’s incredibly sweet how the Lord brings to mind His Word, right when we need it. It has only confirmed what I’ve been taught since I was young to hide God’s Word in my heart! You do that by consistently reading the Bible.

Endometriosis diagnosis and surgery

They found I had an endometrioma, a cyst caused by endometriosis. The cyst was filled with old blood and was the size of a grapefruit, inside my right ovary. The cyst had burst rupturing the ovary and filling my body with toxic old blood.

The surgeon cleaned out all the old blood. The old blood is what caused me to go into toxic shock. He also repaired the ovary.

We learned I’d be in the hospital for at least a week. Our sweet friends took my hubby home with them, so he could shower and eat a good meal.

Thankfully my hubby was able to visit me easily everyday. The Rainey’s home was right next to the bus station with a direct bus to the hospital.

Recovery in the hospital

The next morning, hubby told me there was a window with a view of New York City. It was located at the end of the hall, I was still to weak to walk further than the bathroom. This became a goal for to gain enough strength to walk to the window, and see beautiful New York.  

I was on oxygen, extremely weak and still in a lot of pain from surgery. My body was also healing from the toxicity it experienced.  It was a new feeling for me to be so dependent on the hospital staff and my hubby.

I wasn’t the only one in pain

Despite how Endometriosis had impacted my life, others around me were hurting too.

My first roommate, separated only by a curtain, was quite loud and demanding. After my husband arrived one morning, she began to threaten the nurses by throwing things, this was so stressful.

Over the loud speaker they called a code and two very strong men came in to help dissipate the situation. My hubby urgently requested I be moved to another room. The curtain separating us was not enough to deflect flying chairs or other medical objects. 

I found out later she was having her legs amputated, my heart broke for her. It touched me to see the care of the nurses who loved on her despite her yelling and throwing things at them. 

Recovery progress

Slowly through the week I would walk a little further, at first only making it to the door.

They let my hubby help me shower when I was strong enough to make it there. I wept as I got a real first look at my swollen body, and scars. My hubby just told me I was beautiful. 

The day came where I could finally make it to the window and see New York City. There it was shining like a beacon of hope! NY is a very special place to me. My Grandparents grew up there and loved it, I’ve always felt it is part of me.

Release from the hospital

Even though I was being released, endometriosis was still impacting my life and would in many ways continue to.

After my time recovering in the hospital, they informed me I couldn’t travel or fly for a few weeks. My hubby had to return the truck to Las Vegas, with the show stuff in it. 

Our dear friends took me to Dr appointments on slow walks and fed me as I was healing. I’m so grateful they provided such a peaceful safe place to be and heal.    

Beauty in the hard

The impact Endometriosis has had on my life, while hard has been also good. Here are some of the things I’m grateful for:

• I was “still” long enough to see how God miraculously worked everything out.

• The EMT at the rest stop who called 911 for me.
• The hospital was in a suburban area of New Jersey, the truck could be parked free with no parking restrictions! Had the “burst” happened just an exit before we would have been in NYC, good luck finding parking. The day before we would have been in the middle of nowhere, hours from any medical facility.

• My Doctor, ended up being one of the top OBGYN’s in the country

• The hospital was in such close proximity to sweet friends who welcomed us.

• While recovering I got to soak up sweet time with my dear friend and her precious miracle baby.

Insights God gave me along the way

Our society isn’t known for their ability to rest, and I was no exception. This forced me to be “still”,  I can’t say it was easy. Being so helpless and having little control over my healing, was obviously a lesson I had to learn.

I had read Scriptures that said:

• Be still
• He leads me beside still waters and restores my soul
• Take my Yoke upon you and learn of Me, for I am gentle and lowly of heart. Then you will find rest for your soul

  I’m grateful God allowed me to walk through this journey. Being truly dependent on Him, having no choice but to stop gave me better understanding of these scriptures.

7 years Later

Today it’s coming on 7 years since what we like to call , “My Burst Day.”

I’m reflecting how endometriosis has impacted my life. The original writing of this blog post was done 2 years ago, and I’ve learned so much since then. You can hear more about that in the Podcast.

As comical as it sounds we actually celebrate my “Burst Day”. We want to remember where God showed up tangibly. Where despite pain and uncertainty it only drew us closer to His heart. 

The lesson of being still

Even now I can’t say I have “being still” mastered.  The busy and tyranny of the urgent continually presses in hard. 

God showed me being still doesn’t mean to become a couch potato and binge watch TV all day. God actually calls more of me in seasons of “stillness”. 

He wants me to choose to be intentional with my time and affections. Prioritize my marriage and care of our home, to be present and love on the people around me. Leaning into Him, with an expectant heart until He reveals my next assignment. 

Pain has purpose

Endometriosis has definitely continued to affect my life.

Some for the hard, my first emergency surgery with diagnosis, then a second surgery, clinical trials and various medications.

While most days I feel no pain, I work out and live a so called normal life. I’m sometimes derailed on the days I experience the pain. I sit with a heat pad, ibuprofen and Tylenol and wish I didn’t have too.

I’m human I want to control the situation, it’s a facade to even think I can. This has caused me to greatly depend on God, to come back to sitting still at His feet. Taking a deep breath, and trusting whatever needs to get done will.

Trusting God and moving forward

How has Endometriosis impacted my life? It’s taught me we will experience all sorts of physical issues this side of heaven. God has shown me He walks right alongside us through it all! Pain and sickness in this world isn’t a sign God isn’t good or has turned His Back on us. Rather, though God allows us to experience the ugly of this fallen world, we can rejoice even in our suffering. It reminds us we can’t walk this life alone. In need we draw closer to His heart and get a foreshadowing, we taste a piece of heaven.

Like Paul wrote to the Corinthian church in 2 Corinthians 12:7-10

And lest I should be exalted above measure by the abundance of the revelations, a thorn in my flesh was given to me, a messenger of satan to buffet me, lest I be exalted above measure. Concerning this thing I pleaded with the Lord three times that it might depart from me. And He said to me “My grace is sufficient for you for My strength is made perfect in weakness”. Therefore most gladly I will boast in my infirmities, that the power of Christ may rest on me. Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.