When I was 20 years old, I thought I was pretty healthy. I had asthma growing up, but most of the symptoms had died down with age. I needed to take a puff or two of my inhaler before I went on runs to prevent wheezing, and popped pills in the spring and fall for seasonal allergies, but other than those few things I was normal. I didn’t get sick very often, which was fortunate because I was working my way through college and didn’t have time to spare.
On a Saturday in January, a week or so before the spring semester was due to start, that all changed. I worked at a call center and I asked my supervisor to take a few minutes off the system to visit the restroom. I barely made it there before I collapsed. The pain in my abdomen was unbearable. I couldn’t stand upright, and I don’t know how long I was curled up on the bathroom floor before I finally found the strength to sit up again. Even when seated I had to hug my knees to my chest to keep from crying out in agony. My entire midsection felt as though it was one giant raw nerve.
The owner of the company I worked for drove me to the hospital and called my parents because I hurt too much to speak. The first thought on the ER doctors’ minds was kidney stones because of the placement, but they wanted to do an ultrasound to make sure. They loaded me up with a morphine drip, which allowed me to uncurl enough to be examined. I still felt like my insides were being scraped out like a Jack-o-Lantern, but I felt like they were taking my pain seriously.
I was sent home with Vicodin to manage the pain until I could see my regular doctor on Monday. I was told I had two fluid-filled cysts on my left ovary which would likely burst on their own. The doctor warned me that the fluid bursting would hurt terribly, but that I wouldn’t need further medical intervention. On Monday I was referred to an OBGYN who could do an ultrasound to follow up since I was still in incredible pain. I was warned that if the cysts didn’t burst that they might twist, and that a twist would be more painful than natural childbirth.
…Something to look forward to.
At the OBGYN they did a new ultrasound, and when the Nurse Practitioner returned after reviewing the results I could tell something was wrong. She had lost some of the enthusiasm and warmth that had comforted me when I shook her hand earlier. She took a seat across from me and put a hand on my shoulder. “They were wrong in the ER,” she told me, “You don’t have two, fluid-filled cysts on your left ovary. You have three, solid cysts on your left ovary. They are the size of tennis balls, and these won’t go away on their own.” She paused to inhale, while I held my breath. “They might be malignant.”
I did what many 20 year old women would do when told by a stranger that they might have cancer. I began to cry.
Good News & Bad News
I had an emergency surgery to remove the cysts and my badly damaged left ovary. The pain I had felt in the days leading up to the surgery was severe, but there is something more traumatic about hurting because there’s a gaping hole in your abdomen. A few weeks after the operation, I found out that the cysts weren’t cancerous (a relief), but instead I had a chronic pain condition called endometriosis. I had an advanced case. I had three tennis ball-sized cysts and more growths all over my abdominal cavity that the ultrasound hadn’t picked up.
Endometriosis (endo, for short) affects one in ten women in the world today. The condition has recently come into the spotlight because of actress/writer/producer/super woman Lena Dunham and singer/songwriter Halsey, but until I got the biopsy results back I’d never heard of it. When I did more research, I realized I had been a textbook case. I’m writing this article just before March begins because it is Endometriosis Awareness Month. My hope is that sharing information about the disease will reduce the needless suffering of other women.
Some of the symptoms of endo are awkward to talk about due to social taboo, or are perceived as normal by patients who simply endure their suffering rather than seeking relief. Since the only way to definitively diagnose the condition is by laproscopic surgery, patients can be misdiagnosed for years before finding any semblance of relief.
- Severe Cramping During Menstruation
Although cramps during periods are certainly expected (there’s an entire industry of relief dedicated to this fact), there is a limit. Regardless of your pain threshold, if your cramps and abdominal pain during menstruation keep you from performing basic tasks or makes you nauseous, you should speak with your doctor about it. This symptom is one I ignored for years, thinking my pain was normal, and I paid the price for waiting.
- Pain During or After Intercourse
This symptom is one I never discussed with my doctors, friends, or family before my diagnosis. I attributed abdominal pain to a lack of lubrication, position, or any number of factors within my control. My dismissal of this symptom and insistence that it was simply an error rather than an issue meant years of unnecessary suffering.
- Heavy, Irregular Periods
Prior to my diagnosis, it was nothing for me to have 10–14 day periods which were severe enough to merit wearing overnight capacity pads and tampons at the same time to prevent leakage. The “bulk” packages would last two months, if I was lucky. Before I began treatments, I ruined more underwear than most people buy with unexpected bleeding outbursts. Don’t be afraid to discuss the severity and texture of your flow with your doctor.
Years prior to my endometriosis diagnosis, I had a sleep study done. I was perpetually exhausted, despite a regular sleep schedule. If I sat for too long, I would fall asleep. After the study, doctors were concerned that I might be developing narcolepsy. Despite a lack of treatment from the sleep specialists, my condition improved enough that the medication was not necessary. What changed? They began treating my endo. Patients with endometriosis frequently report devastating fatigue similar to that experienced by late stage cancer patients. It’s part of why, in addition to their agony, many endo patients struggle to perform regular activities.
- Painful Urination or Bowel Movements, Especially During Menstruation
Endometriosis is tied closely to the female reproductive system. The proximity to the bladder and bowel mean that many endo patients have a host of digestive issues. As with the pain associated with sexual contact, this pain might occur after the urination or bowel movement once pressure is relieved in the abdominal cavity.
Have Some (or all) of These?
The important thing to keep in mind when visiting your doctor is that it is okay to talk about any of the above symptoms or others you are experiencing. No one wants to talk about their period, or about discomfort they might feel after sex or a bowel movement — it’s awkward. Before the appointment, it might seem like the conversation might be more uncomfortable than the pain you’re dealing with, so it’s tempting to ignore the symptoms.
Although there isn’t a cure for endometriosis yet, medicine has made a variety of advancements which make the condition tolerable for many women. As with any condition, early detection is ideal, so if you or a loved one experience any of the above symptoms pass this article on. Let them know they are not alone, and that they should speak out.
Want to Help?
- Donations to the Endometriosis Association will help spread awareness of the condition and help fund research toward a cure. Donate here.
- Donations to the World Endometriosis Foundation will be put towards research for a cure, and finding out why this debilitating invisible illness occurs. Donate here.
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“Endometriosis.” Symptoms. Accessed February 28, 2016. http://www.mayoclinic.org/diseases-conditions/endometriosis/basics/symptoms/con-20013968.
“EPublications.” Endometriosis. Accessed February 28, 2016. http://www.womenshealth.gov/publications/our-publications/fact-sheet/endometriosis.html.
“Facts About Endometriosis.” Endometriosis.org. Accessed February 28, 2016. http://endometriosis.org/resources/articles/facts-about-endometriosis/.
“What Is Endometriosis? The Endometriosis Association.” What Is Endometriosis? The Endometriosis Association. Accessed February 28, 2016. http://www.endometriosisassn.org/endo.html.