The Thief Called Endometriosis

I woke up without an ovary Friday October 25th 2019.

It was gray, cloudy, and on the verge of rain but with the contrasting joyous riot of fall color on every tree across the mountains.

I lay in a hospital bed fuzzy, floating, and keenly sad.

While the anesthesia claimed me, I gave up something I had not chosen to sacrifice.

It is a bizarre sensation to go to sleep whole...complete and wake up with such a loss.

I have been robbed, and yet I must be thankful and happy it is gone. Because what was the alternative? Living with a festering ovary that the doctor described as oozing chocolate syrup?

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In the surgery room, I remember the nurses recording the time, 9:24 AM, and then the anesthesiologist placed the mask on my face and told me to take some deep breaths. I think I got three breaths in...

My next conscious moment, which could hardly be described as conscious at all with the fuzzy head, blurred vision, and heavy limbed constriction, they were asking about my pain level and scooping ice chips between my lips for my dry throat. Then there was the sensation of jerky rolling.

We were on the way to my recovery room, and I peeled a lid open by chance catching a clock on the wall showing 3:00 PM. I remember thinking that can't be right. What's wrong with the clock?

But no the clock wasn't broken.

An exploratory laparoscopy that was supposed to take barely an hour turned into a five and a half hour long operation.

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S. slipped in to the recovery room almost as soon as they locked my bed in place. He took my hand and murmured soothing nothings for a while. I could tell though something was wrong. The air felt heavy.

In the end, he was cursed or blessed with breaking the news to me that the surgeon had found significant Endometrial lesions and a completely contorted, damaged left ovary that had to be totally removed. Tears immediately rolled down my face, and I welled up with this extreme sense of loss and sadness.

For one brief moment, I wondered if he was making some kind of twisted joke. The removal of my ovary was exactly the fear that I hadn't fully allowed myself to realize or voice as a possibility. My gynecologist had assured me she wouldn't remove it, just the cyst - had said it was the most remote possibility.

Sometimes you are that remote possibility. That 1 in 10.

I know most people diagnosed with a chronic disease must feel this way at first. Not a "why me" but a "can't be me" disbelief. I knew Endometriosis was a possible diagnosis even the most likely culprit when I went in for the laparoscopy, but I never imagined it could be this severe.

The joke is I'm only diagnosed with a "moderate" case. Ha - moderate and still down an ovary!

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How do you find gratitude for something stolen from you?

I've still got another one after all. Pregnancy is still possible, but now it is a trickier battle I never anticipated. I always thought I was fertile. Like most women, I never figured I'd have any problems getting pregnant. Sure, it was this prideful assumption based on absolutely no reality, but in my mind it was rock solid truth. So it's not just a stolen ovary but a stolen certainty.

Isn't it bizarre how an unwanted pregnancy, that you're scared to death of while young and unmarried, becomes the most desirable thing in your life within the time span it takes to switch off a light?

The thing is when I was in the pre-op room surrounded by other surgery patients and encased in those filmy hospital curtains, there was this mother with her newborn baby recovering from a c-section. I couldn't see them, but I could hear the infant's tiny squalls and their attempts to get the infant to latch on to the mother's nipple for breast feeding.

It actually made it hard to relax and get in the "zen" moment before my surgery, and I was actually kind of annoyed that recovery patients weren't in a separate space.

There was a lot of shushing and sweet babbling...a few frustrated gurgles and squeaks...then you kind of felt this collective sigh as mother, baby, and nurses all relaxed because contact succeeded. It was this intimate moment that I eavesdropped on so unexpectedly and without choice.

Now a few days into my recovery and dealing with my diagnosis, I keep playing that moment over and over. Hearing those gurgles and feeling that palpable elation even several beds away and a curtain between us. All I can wonder is what if that's as close as I'll ever get to that experience.

Can coincidences be cruel?

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I have so much to be thankful for: a loving support system; two great doctors who really listened to me and respected my experiences...my pain; the fact we got in there and found out what was going on before I lost both ovaries.

I know it could be so much worse. I know that there is still hope and possibility. I know that I am essentially unchanged as a person, as a woman, as a potential mother. But there is this overwhelming sense of loss for something I hardly appreciated in the first place, especially, given the pain I had endured over the past few months.

There are so many questions.

There is a relief too! I should have a reprieve from the pain for a while at least. There is relief knowing what is actually going on with my body and in having an explanation. There is relief in justification.

But there is still fear.

And I can't be thankful my ovary is actually gone.

Endometriosis is the thief, and it has stolen more than just my ovary and easy fertility. It's stolen days and weeks where I suffered debilitating, inexplicable pain. It's stolen my energy, my positive attitude, my sanity, my certainty.

There were urgent care and emergency room visits. There were doctors who didn't take me seriously and then there were doctors who listened when I said something was wrong! It took a year and four months to diagnose this disease. I was told it was extreme gas...regular menstrual pain....my IUD...cancer...appendicitis...and kidney stones.

When Endometriosis was mentioned it was largely fleeting and there were no serious consequences attributed to it. I did my basic research on it. I thought I understood what the disease was, but I didn't go far enough. I didn't connect with any groups or women who actually have this disease. And I so wish I had. I put off a laparoscopic exam when I shouldn't have!

So lovely peonies, that is why I am sharing my story with you all. If this post reaches just one of you experiencing symptoms of Endometriosis, it will be worth it. Please have yourself seen about. Find a doctor who will listen.

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I woke up with just one ovary Wednesday November 13th 2019, and the loss is easier each day.

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What is endometriosis?

It is a chronic and painful disease caused by Endometrial lesions growing outside of the uterus on reproductive organs and other organs in the abdomen. Endometrium is the lining of your uterus, which sheds each month with your period. When that occurs the lesions may also grow, break down, and shed. This causes inflammation and pain.

An estimated 1 in 10 women have endometriosis.

Watch this video for the best explanation!

Most Common Symptoms:

• Painful periods
• Pelvic pain in between periods
• Pain with sex
• Heavy periods
• Spotting between periods
• Infertility

My Symptoms:

• Extreme bloating
• Sharp painful cramps during my periods
• Sudden and severe episodes of pain between periods that were absolutely crippling
• Fatigue
• Moderate to heavy periods that lasted up to 8 days

If you are experiencing any of this or if you have Endometriosis and want to talk with me in more detail about my symptoms or my surgery, please feel free to reach out to me! I would love to talk with you: penderandpeony@gmail.com or IG @penderandpeony!

Additional Resources:

For general information:

Speak Endo

The Endometriosis Association

Endometriosis.org

Johns Hopkins

Support, Treatment, & Coping: Real Women with Endometriosis

Do You Endo - This is my personal favorite!

"Eating For My Endo"

Endometriosis News

Vital Health Endometriosis Center - Informative videos and medical terms/treatments explained!

Instagram: @doyouendo, @speakupspeakendo, @vitalhealthendometriosis

Please share any resources you've found valuable in the comments. I will update this list as I learn more!