Mother’s Day is a haunting reminder of my endometriosis and hysterectomy at 24. On a day when I want to show love to all of the wonderful moms in my life, I find myself isolated and alone because flowers and a “Mom” balloon send me into a tailspin of selfish grief. It’s easier now that I’m in my forties and it’s a distant memory, but some years are harder than others, even after all this time.
The Family curse
I knew I had an aunt and great-aunt who had hysterectomies in their twenties, although I never knew why until the family curse fell onto me. There were warning signs before the end, but in a story too familiar to anyone with the disease, they were ignored and I was told to put them out of my mind.
One day I suddenly realized that I hadn’t had a period for over six months. I was 15 and not sexually active, so I didn’t think much of it until it stretched out to nine months when I finally made an appointment with a doctor. After an awkward but professional pelvic exam, he said I was perfectly normal and girls can be irregular shortly after puberty, and it will fix itself after a while.
It didn’t.
I was plagued by irregular periods and pain in the days leading up to it and for the first few days as my cycle began. The pain started to get worse the longer I went without a period, but I didn’t think much of it because so many of my friends had similar complaints. As it turns out, my survival strategy of instinctively finding neurodivergent friends meant many of them had similar issues. Neurodivergent people seem to be more prone to several chronic conditions, including endometriosis. Then one day, the pain became constant and I was months away from a life-altering surgery.
What is Endometriosis?
Endometriosis is a chronic disease with a strong genetic component, characterized by the lining of the uterus, or endometrium, found outside the uterine environment and in other areas of the body, typically the pelvis and abdomen. It affects about 6.5 million people in the US, or approximately 10% of the population. Pain is its most common symptom, along with infertility in nearly half of sufferers. About 12% will require a hysterectomy in order to alleviate symptoms.
It can take many frustrating years to get an endometriosis diagnosis. The average person experiences symptoms for 7-10 years before getting surgical confirmation. We’re told, “You can’t can’t really be in that much agony; some discomfort is normal.” Whether it’s intended or not, there is an unspoken message: “Stop being such a drama queen and suck it up.” Pain is a tricky thing: everyone’s tolerance is different, and those who live in constant pain often don’t look as if they’re in as much pain as they truly are. This leads to doctors not believing our symptoms or stories, or trying less effective treatments because we aren’t as distressed as they think we should be. This delay leads to more adhesions, unnecessary pain, and loss of fertility as the disease progresses.
Although most people with chronic illnesses have at least one doctor horror story, this is more of an exception than the rule in my life. My own gynecologist throughout this was a wonderful doctor, and I’m grateful for him. Most of the doctors I’ve known have been kind and compassionate people who dedicate their lives to ease the suffering of others. They are also frustrated with how insurance companies hinder treatments with red tape and denials.
The diagnosis is confirmed with a laparoscopic surgery to see the adhesions within the abdominal cavity. My first surgery was scheduled pretty quickly, where my diagnosis was confirmed, along with a damaged ovary glued to my uterus, the probable cause of my irregular periods. They lasered the adhesions they could find, closed me up, and set me on my way to recovery. The procedure was quick with minimal restrictions for a week or so, and finally having a name for my pain was a relief. At last, I learned that this disease is what led to my aunt’s hysterectomy by the time she was 27. I suspected I had a similar fate awaiting me, but both my doctor and I were determined to find a solution that would allow me to keep my fertility, such as it was.
Starting treatments
We discussed my options: hormonal birth control, GnRH medications like Lupron to mimic menopause, and the potential for more laparoscopic surgeries to remove more adhesions.
Fortunately, there are a few newer medications on the market, particularly GnRH drugs that have fewer side effects than Lupron. Emerging therapies targeting inflammation, new surgical techniques, nerve growth, or even the microbiome are also on the horizon.
It seemed sensible to me to start off with birth control pills, as it works for many people with endometriosis, due to a suspected link with progesterone resistance. Each brand is slightly different, so I set in for the long haul of trying different brands until we found one that worked.
Armed with my new birth control and vicodin prescription (this was before the opioid epidemic took hold of the country), we started looking for that magical cocktail that would bring my life back to me. By this time, the pain was constant and horrific. My life began to shrink as I stopped going out with friends, afraid of a sudden attack of more severe than usual pain. Going to classes and work became difficult, especially standing in my sculpture class when all I wanted to do was double over and cry. I found some relief with heat patches during the day and heating pads at night, but it would only take some of the edge off. We kept trying different brands to find The One, but nothing seemed to really work, and a few made things worse. Finding the right cocktail of drugs to treat endometriosis can take some time to figure out, so I accepted that this was part of the process. We added antidepressants to the mix to help with the emotional aspect of dealing with this disease and I white-knuckled my way through the days.
I was still in pain as the agony turned from weeks into months. Sleep was a relief. It became easier to forget when I was asleep, only to wake up to the angry ball of pain in my abdomen and thought “Oh, God. Here we go again.” I took vicodin as prescribed, although it didn’t do more than take a little of the edge off. We were only beginning to find out how dangerous this could be, and while I was grateful for something more effective than Tylenol, I was not happy going through withdrawal in the hospital after my surgery.
I had a negative reaction to a progesterone only birth control pill, and I was leery of the depo-provera shot. This was before the lawsuit, when the treatment was relatively new to the market. Instead, we tried Lupron after another failed laparoscopic surgery to remove more adhesions. No change. I was still in pain, so as a last ditch effort and a final hoop to appease the insurance company, we tried the depo shot.
It didn’t work, but at this point, it wasn’t a surprise. My doctor and I both knew where this was headed.
“I don’t want to do this”
Midterms had just ended and I had gone in for my monthly excruciating pelvic exam and consult. I sat in his office, and we looked at what treatments we had left. I was exhausted, heartsick, and desperate for relief, knowing what was about to happen.
“I don’t want to do this,” he said to me, his face full of sadness and resignation.
“Neither do I,” I replied as we scheduled my surgery in early December, days after my finals ended. I was 24.
One of the scariest things I have ever done was walk into a hospital. I knew I needed surgery, but I hated it. I felt as if my body betrayed me, and this was my last and final effort to gain some control over my life and go back to some semblance of normal. I signed the papers, changed into a gown, and waited for a surgery that would change my life. I could only hope that this last drastic move would finally give me the relief I so desperately needed. I trembled like my dog does at the vet as they wheeled me into the OR where a kind nurse put a warm blanket over me as the anesthesiologist put me under.
Surgery was the easy part
As it turned out, major abdominal surgery hurt less than my daily pain. I surprised the nurses after I stopped taking morphine about 24 hours after surgery because I didn’t feel I needed it, even though it hurt. For the first time, the constant burning agony blooming across my left side and throughout my abdomen was gone. It was a relief I never dared to imagine. But it came at a heavy cost.
Many people have children in their mid-twenties, and my friends were no exception. While I struggled to accept the fact that I would never be able to have my own, those around me began their own exciting journeys as parents. The first one was born a little over a month after my surgery. My family welcomed my niece just six months later. At a time in my life when most of my peers were worried about finding love and starting families, I was trying to survive, not knowing about the brutal fallout from years of trauma from this and other life events that was about to hit. I felt as if I was on the outside looking in, isolated and alone with no one who really understood what it was like. I looked for others like me online, but found little meaningful support. My aunt understood like no other, but it was hard to put into words and we both struggled to process our experiences and the other traumatic events surrounding our hysterectomies. To this day I can’t watch anything related to pregnancy, birth, and babies in general, but it’s easier now than it was.
I consider myself lucky. I didn’t have a doctor demanding I keep suffering because I was too young. He never insisted I delay surgery just in case I wanted to get pregnant and have a child. I didn’t have to get permission from my non-existent husband. I didn’t have to wait years from the onset of my first severe symptom to diagnosis and treatment. I have a loving, supportive family who were able to help me every step of the way. The insurance company fought a little, but there was relatively little drama from that. I was fortunate that it was covered by insurance. I am so grateful for my doctor, who was so kind and more importantly, believed me when I said I was in pain.
For others, their story isn’t as straightforward. It’s important to advocate for yourself. You know your body and when something isn’t right. Tracking symptoms can be very useful for helping your medical team find the right diagnosis, and helping to manage symptoms and side effects. I prefer something along the lines of a bullet journal spread because it lets me spot patterns more easily, but apps or a spreadsheet are equally useful. Carving out time and space for this as part of a daily self-care ritual has made enormous changes in my quality of life.
I don’t regret my hysterectomy. It was the only thing that actually helped me. My life now would be impossible without it. Yes, I paid a heavy price, but it was worth it to be free from the constant agony those two years brought me. The experience leading up to it left me with some heavy scars, but one worth it in the end.
Let’s support each other. What has your experience with endometriosis been like? What have you found that works?
Amy Writes Things 