The Edge
The first time I heard the term “endometriosis” was in 2003 by my gynecologist. I was 20 years old and suffered from very painful and heavy periods, sometimes causing fainting spells, vomiting, diarrhea, and days of being bed-ridden. My cycles were extremely abnormal - ranging from 26 to 38 days. I even suffered from ovulation pain and bleeding, known as mittelschmerz - a German word for “middle” and “pain”.
After trying two forms of oral birth control, my doctor suggested an exploratory hysteroscopy to rule out endometriosis. However, following the procedure, she found no sign of disease.
After ruling out the disease, I was told to just try new forms of birth control to help level out my monthly cycles. Over the next several years, I tried at least two more forms of oral BC, which produced uncomfortable side effects, such as weight fluctuation, loss of appetite, headaches, and libido change. I even attempted the innovative birth control patch that was supposed to be an even easier form of birth control. That one was the worst of all! Every single month, when first applied to my hip, I would vomit for two days straight. I would have such intense diarrhea that I would pass out on the toilet. I distinctly remember driving to college one day and having to pull over on the side of the road to throw up next to a warehouse. I then picked myself up off of the dirt road, took a sip of water, and walked right into my 8:30 am music theory class.
“I accepted that this was my new normal: I was just fine if I “only” suffered for half of the year. ”
After 6 years of this, I decided that birth control just wasn’t for me and began the ever-so-dangerous form of BC labeled coitus interruptus, or as we so lovingly refer to as the “pull-and-pray” method.
Don’t judge. You’ve done it too.
When my husband and I began trying to conceive, I approached my midwife with the worry that “something was wrong”. My cycles were becoming even harder to track, therein making it difficult to know WHEN I was ovulating or WHEN I was supposed to get my period. This resulted in many months of thinking I was pregnant because I was over a week “late” every month. And, we all know what stress does to our cycles and our bodies in general.
My midwife suggested I read the book Taking Charge of Your Fertility by Toni Weschler and it single-handedly changed the way I viewed my body. I no longer felt like an uninvited guest to my own cycle. I literally took control of my cycles using FAM (Fertility Awareness Method), a natural approach to tracking and maintaining my cycles.
““Your menstrual cycle is not something that should be shrouded in mystery.””
Over the course of the next 8 years, I became pregnant 5 times. Three of those times produced my beautiful, loud, healthy boys. But two pregnancies ended in first trimester miscarriages. Every pregnancy was extremely difficult on my body. I bled through the first trimesters, was hospitalized for preterm labor between 20 and 26 weeks, and inevitably put on bed-rest for two-thirds of each pregnancy. It should be no surprise that all 3 of my boys were delivered by c-section, given the many complications.
“I don’t believe my body was ever meant to carry a child to term and I had to fight like hell to do so.”
In 2019, which I so affectionally refer to as The Beginning, my gynocologist found a growth inside of my uterus. It was benign but still worrisome and she planned on a partial hysterectomy to help prevent future regrowth. We scheduled it for March of 2020. March. Of 2020. The month the world shut down. The year that all elective procedures were canceled.
It wasn’t until my surgery in April 2021 that my gyno formally diagnosed me with endometriosis. And at that point, I was already stage IV: the most severe form of endometriosis that had already spread to all of the organs in my abdomen, including my cervix, ovaries, bladder, and intestines. In fact, during that surgery, she was unable to remove my cervix (standard protocol for partial hysterectomies) because it was fused to my bladder.
Endometriosis causes scar tissue, also called adhesions, that basically act like super glue - “sticking” organs together as well as attaching them to the wall of my abdomen.
Knowing my condition was worse off than she originally anticipated, my doctor closed me up, knowing another surgery was inevitable. She was also aware that this form of detailed surgery was a bit out of her scope and referred me to a gyno-oncologist surgeon who was better experienced at elaborate surgery.
“After transferring to my new surgeon, I underwent 2 more surgeries... a total of 3 surgeries within a 16-month timeframe.”
I was told that each surgery “went according to plan.” In fact, my 3rd surgery, a bilateral oophorectomy, removed both of my ovaries (the last of my reproductive organs), which would put my body in permanent, irreversible surgical menopause. So at the age of 39, I was experiencing symptoms that a 45 or 55 year old woman would experience, but at a rate much quicker than that of a woman who transitions into menopause naturally and gradually.
The hot flashes, night sweats, and insomnia were uncomfortable but manageable with a lot of fans, light-weight clothing, melatonin, and a very patient husband who paid upwards to $650 a month for our insane electricity bill - all so I would feel more comfortable.
What I was NOT expecting was the sudden and drastic shift in my hormones. Or rather my LACK of hormones. Picture your worst case of PMS or postpartum depression… with no end in sight. Most women who undergo surgical menopause are encouraged to begin some form of HRT (hormone replacement therapy) to help “even out” their body’s response to hormone fluctuations. HRT is known to help alleviate the physical menopausal symptoms and even aid with the depression and anxiety that creeps up as well.
“However, endometriosis FEEDS on hormones and without a 100% guarantee of regrowth, I was strongly urged not to begin any form of hormone therapy.”
At my 4-week post-op appointment, I mentioned my heightened anxiety and mood swings to my doctor who reminded me that this was one of the mentioned side effects we had discussed and simply increased my dosage of Effexor (my mood-stabilizing anti-depressant). I also mentioned that my menstrual-like cramps had returned (which is slightly hilarious given the fact that I HAVE NO UTERUS) so she also ordered a follow-up pelvic MRI to make sure that she hadn’t missed anything in surgery.
Well, about a week after my 3rd surgery, my husband lost his job. His whole company dissolved. Which meant that our medical insurance dissolved as well.
That MRI she ordered would now cost us $2300. With an immediate hold on our influx of income came an immediate hold on any unnecessary spending. And even though my husband encouraged me to go ahead and schedule the MRI (and my amazingly sweet and thoughtful mother-in-love even offered to pay for it!) I decided against it. Because SURELY removing all reproductive organs had SURELY put an end to this terrible and quick-spreading disease. So I pushed the thought out of my mind.
“It wasn’t until the evening of Tuesday, October 4th, that I knew something needed to change. Or else I might not make it.”
After a very difficult and painful pelvic floor physical therapy session that morning, followed by a very long day of taking my son to therapy and teaching 6 students back-to-back, I was worn out. After putting the kids to bed, I immediately laid in bed complaining to my husband of how tired I was. And not just physically tired; but emotionally, mentally, spiritually. I had been tested and stretched and pulled to my limits. I felt like a burden on my husband, my family, my friends, and our finances. I felt like I couldn’t be the mother I knew my boys deserved, as I was in and out of bed. And I couldn’t be the piano teacher I wanted to be, as I kept canceling due to surgery, appointments, or days of feeling unwell. I felt like I was failing in all aspects of my life.
I told Dan that I was going to bed, but first I had to take my nightly pills. What he didn't know is that I had already taken my pills.
I don’t know what came over me but I marched right into the kitchen, grabbed my bottle of 300 mg gabapentin pills and emptied the entire bottle into my left hand. I was just about to swallow no less than 25 or 30 pills at one time when, out of nowhere, Dan grabbed my arm and screamed, “Christine! What are you doing?!” I remember saying, “Ouch! That hurts!” as he had grabbed me so fiercely and quickly and then had to pry open my fingers.
“I will never forget the sound of those pills falling to the ground. ”
I have no idea why he followed me into the kitchen. Maybe he sensed something was “off”. Or, what I would like to think is, the Holy Spirit told him to follow me. To not give up. To not stop trying to protect me. And I will forever be grateful for that.
After crying myself to sleep that night, I awoke the next morning to him sitting in bed next to me. When I opened my eyes and saw him looking at me with such concern, I again began to cry and said, “I don’t want to die.” And I knew then that I had to fight. I had to fight for myself. For my husband. For my kids. I had to fight against the darkness I had again found myself in. I had to fight against this disease that wasn’t necessarily fatal but that threatened my quality of life.
I became my own advocate. It was finally clear to me that my doctors - the medical professionals I had trusted with my life (time and time again) - were human. It was possible that they had made some mistakes along the way and it was possible that they didn’t know enough about this terrible disease to “fix” me.
So I began to research. And read books, such as: Surgical Menopause: Not Your Typical Menopause and Cleanse to Heal and Beating Endo: How to Reclaim Your Life from Endometriosis. I joined Facebook support groups with other women who struggled with both endometriosis and/or surgical menopause. I completed a 3-day detox cleanse to reset my digestive system and detox from all of the meds I’d been forced to take over the years. I began walking sometimes up to 4 miles per day (both for my physical and mental benefit). I began working with a licensed nutritionist from Australia who specializes in endometriosis and the foods that help and hurt me. I began a cognitive behavioral therapy workshop to Retrain My Pelvic Pain. I began to reach out to my amazing support circle and forced myself to be vulnerable and share about my very embarrassing and scary night that could have claimed my life. As guilty as I felt sharing it, I knew I needed the accountability of friends checking in on me to make sure I wasn’t close to the edge again.
Most importantly, I began to choose my own doctors. I stopped relying on referrals by other medical professionals but began to research doctors who were referred by other Endo Warriors like myself! I read the reviews, reached out to former patients. And even went as far (literally!) to meet with a gynecologist in Denton, TX, who specializes in endometriosis. Literally, it is ALL he does. He stopped birthing babies years ago when he began to see the epidemic that is endometriosis, claiming the quality of lives of so many of his patients.
It was within that 3.5-hour consultation that he was able to explain the source of my pain: the ultrasound showed that both my bladder and my bowels were again adhered to the wall of my peritoneum. He asked me very pertinent questions, suggesting that he knew how this disease was affecting my daily life. He addressed my pre-term labor with all 3 of my boys, the potential reasons behind it as well as the potential cause of my miscarriages. He was even able to explain WHY the medications I was taking might be the cause of my suicidal thoughts.
Friends, he gave me HOPE. He explained how the way he does surgery is quite different than all of the surgeons I’ve encountered in the past. From his da Vinci robotic assisted excision laparoscopic experience, to his use of placental membranes as an adhesion barrier to help reduce the chances of adhesion recurrence. From his overnight hospitalization protocol, to his “second look” philosophy in which he “goes back in” around 5 days post-op to search for and fix any adhesions that have already begun to form.
No, he didn’t promise that this surgery would “cure” me. And I’m thankful for his honesty. He can’t promise I won’t go through another procedure… or two… but he did say he would be as thorough as need be to help prevent future complications.
Though the thought of yet another, and even more invasive and painful surgery is right around the corner, I have a good feeling about this one. Well, more than a good feeling. I have HOPE. That maybe at the end of this procedure, my quality of life might return. The me that’s been dormant for far too long might show her face again. And I’m praying that it’s an even truer and more vibrant version of myself than ever before.
