The Harsh Reality Of Endometriosis
“By middle school, I had my first period. By junior high, I had been hospitalized for severe pelvic pain. By high school, I was addicted to pain pills. And so it goes for a person with endometriosis.
It was nearly a decade of doctors, ultrasounds, hospitalizations, and ruptured cysts when I hit my breaking point. I was 21, a senior in college, when I arrived at a pre-op appointment full of hope.
‘Actually, we think it’s a hernia.’ Weeks before the doctor said an ultrasound for the stabbing pain in my lower right abdomen confirmed it was a cyst but on my left side. I found that odd, but didn’t care because I was finally getting treatment that wasn’t birth control or narcotics. But when the doctor went on to say they were no longer planning surgery and wanted to run more scans, I lost it.
I held myself together until I got in my car and then called my dad in tears. ‘I know you think I’m making this up by something is really wrong,’ I sobbed. My dad told me he’d call me back so I drove down the highway, tears streaking down my cheeks, coming to the realization I woke up sick one day with no hope of ever healing.
‘Call Paige Partridge,’ my dad said when he returned my call. He had consulted his legal partner who recommended the gynecologist. I called immediately, only to be told there was a four month wait. The tears came again as I called my dad.
Receiving Validation For My Pain
After my dad called in a favor, I saw Dr. Partridge the next week. As I sat on the clinic bed, I didn’t even try to hold back the tears. ‘I think I’m going crazy,’ I told her through sobs. She was kind, gentle, and performed the ultrasound herself – the first time I didn’t have to wait for a technician opening.
‘Do you see that on the screen?’ I stared at the black and white blob – the same one I had been staring at for months that I was told was nothing.
I nodded. ‘That’s a seven-centimeter cyst. That’s the size of a grapefruit.’
I cried harder. For the first time in nine years, I had validation for my pain and heartache. It was November 3rd, and with Thanksgiving coming up, I was hopeful for a surgery that would bring relief.
‘So can we remove it over Thanksgiving?’ I asked, the bittersweet realization that my pain was real, already healing my soul.
‘No,’ Dr. Partridge said. ‘This has to come out tomorrow.’
Onset Of Endometriosis Symptoms
When I was 12 years old, I was 45 minutes into a four-hour deep sea fishing trip with my dad, my brother, and my papa, when my dad noticed a stain on the bench where I had just been sitting. I hurried to the bathroom to confirm that the stain was from my first period. Cue ‘You Came in Like a Wrecking Ball.’
Like most girls my age, I relied on Midol to help with period cramps, but it never seemed to help. I figured that was normal, something I will never let anyone else believe. When I started bleeding for more than 10 days at a time, I went to a primary care physician who recommended I see a gynecologist.
By the time I hit high school, I had been hospitalized for pelvic pain more than once and it always followed the same pattern.
Come in with pelvic pain. Get a CT scan. Find out a ruptured cyst is causing the pain. Get released with narcotics.
I was the one who discovered endometriosis, realized it explained all my symptoms, and brought the diagnosis to my doctor. She agreed to start treating me with birth control, but never recommended surgery.
Mental Health Struggle
While the narcotics helped with the physical pain, it was easy to slip into using them to help numb the emotional pain that went with an invisible illness on top of high school emotional turmoil. Luckily, I had a boyfriend who supported me and loved me through it.
Though once I started birth control and gained some weight as a result, he’d make sure I was aware of my body changing, going as far as saying ‘I could love you again if you lost the weight.’ Sometimes I wish he had been kind enough to just leave me instead of adding to my depression and anxiety. But then again, the Vicodin helped numb that pain, too.
The summer after high school I had my wisdom teeth removed. My mom took control of the pain medication for that surgery and after not having unlimited access to the pills for several months, the physical pain became excruciating, and so did the emotional pain. By my junior year in college, I was on antidepressants and seeing my gynecologist every few months. She’d change my birth control, recommend alternating Tylenol and ibuprofen, and then send me on my way.
My college boyfriend wasn’t as supportive of my medical issues as my high school boyfriend, though he wasn’t ugly about my weight, so I guess it was a tossup. By this time, I had internalized I was too hard to love, and each morning woke up with the intention to not eat, sometimes succeeding and other times caving.
If I could lose weight, get physically healthy, and not have mental health issues, then I would be easier to love. So when my college boyfriend told me he didn’t want me on antidepressants, I took that as an opportunity to prove I was able to achieve one of those goals.
When I called my college boyfriend, who now lived five hours away, to tell him my new doctor was performing surgery the next morning, he became upset because we were supposed to celebrate his dad’s birthday that weekend. Shockingly, we’d break up within the week.
My First Endometriosis Surgery
After my surgery, Dr. Partridge showed my parents a picture of the cyst she removed. She also confirmed my pain was endometriosis.
My best friend, Mallory, came up to the hospital after my surgery. She hung out with my family and I until I was released from the hospital. She’s still my ride or die, 10 surgeries later.
The surgery brought relief for some time. I started dating my husband, graduated from college, and moved to the Dallas area. The pain returned and I saw a few doctors, but I stayed away from the pain pills, and nobody recommended surgery.
Labor & Delivery
We got married in July 2010 when I was 23 and started trying to have a baby in October 2011. I knew there was a possibility that endometriosis would prevent me from conceiving, so on Mother’s Day 2012 when I realized I was late, the happiness that came with those two pink lines was overwhelming.
My son was born in January 2013 and his sister wasn’t far behind in April 2014. Because both my babies were cesareans, I was told for my health and safety I could not get pregnant until my daughter was three. While I had some nerve damage from my second cesarean, the pelvic pain stayed minimal until 2016.
I went to my OB who delivered both my children, but she didn’t know much about endometriosis. I found a doctor who did and when they went in laparoscopically in 2016, he confirmed that the endometriosis was still growing.
I had surgery in 2016, 2017, and twice in 2018. By then, we had moved to Tulsa, and I was seeing a new doctor. We had tried Lupron, which most people in the endometriosis community will tell you to avoid, but I was desperate.
It didn’t work so she performed surgery in the summer of 2018 to remove an ovarian cyst. She said there was still endometriosis growing and it was on my bladder. She recommended a hysterectomy, but I didn’t feel that our family was done growing.
My husband and I decided I would go off all my non-pregnancy safe medications and we spent the next several months trying to get pregnant. I still had severe pelvic pain and at one point had been on several rounds of antibiotics because my ultrasounds kept showing inflamed fallopian tubes. By December, I needed another surgery to remove a growing cyst, and my doctor kindly but firmly told me without removing my ovaries, those would not stop.
My husband and I decided the third child we desperately hoped for and that I continuously prayed for was not meant to be. I was standing in line for a ride at Disney World in February 2019 when I scheduled my hysterectomy.
Getting A Hysterectomy
Because I have an incredible support system, friends came from Arkansas, Texas, and Colorado to my Hysterectomy Party, a bittersweet farewell to the organs that had brought me children but were no longer capable of bringing more.
I had my sister-in-law make me a shirt that said ‘Here to Cancel My Monthly Subscription’ to wear to the hospital for my hysterectomy. My other sister-in-law French-braided my hair so I wouldn’t have to worry about it the morning of surgery.
When the reports came back after my hysterectomy, it showed that my fallopian tubes were full of endometriosis, which explained the inflammation as well as our inability to get pregnant. They call it ‘secondary infertility.’ I know how lucky I am to have this disease and be able to have two healthy, beautiful, strong children. I also know it’s by the grace of God that I had my almost-Irish twins when I did because by the time we tried for baby number three it was too late.
What I thought was the end of my journey was not – in 2020 I had another surgery which confirmed the endometriosis in my pelvic walls and floor, as well as my bladder was continuing to grow. By this time, I’d been diagnosed and treated for interstitial cystitis for two years.
I went back and forth between my gynecologist and urologist, but by the end of 2020, I was able to find a Nancy’s Nook approved specialist just two hours away and had my first excision surgery in March of 2021.
In October 2022, I was told I would need surgery again. I broke. I sobbed in the front seat of my car, wondering why I gave up on my dreams of growing my family just to continue to have pain, health issues, and surgery.
Why did I put my family through all these hospital stays, medical bills, and time off work, just to continue fighting the same battle? Why do people get to go on to have three, four, or more children, especially the ones who don’t even want to grow their families, and that possibility was taken away from me? And the guilt of having these feelings brought more tears.
As of today, I’m less than two weeks out from my next excision surgery. I am happily on antidepressants, which my husband fully supports. I have Xanax and use 3Chi gummies for my anxiety.
I take medication for my migraines, for my menopausal hormones, and for vitamin and mineral deficiencies. But I’m not addicted to the pain pills anymore, though I do use them post-surgery.
I hope and pray that this surgery is my last. But I’ve had these same hopes and prayers so many times before. I’m currently in the process of having bylaws approved to start my own non-profit to help people experiencing endometriosis get access to medical care.
While my journey has been difficult, I have always had access to medical treatment, always had the financial means to pay for my procedures, and always had the support and love from my family and friends. Everyone deserves that, so I am accepting that my third baby is going to be my non-profit.
I have fought and will continue to fight for people experiencing this disease, and my hope and prayer is that by the time my daughter reaches puberty, that I have laid the groundwork so she will not need nine laparoscopies and eleven procedures to treat her pelvic pain.”
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