I had been waiting weeks to hear from the doctor at my university. I was in my fourth year of my bachelor of science in nursing, my fifth month of marriage, and my ninth year of excruciating pain with menstruation. I had approached the available physician on campus regarding debilitating pain with sex. Pretty much every aspect of being a young woman was not going as I had planned. I spent six weeks assuming my pain must be, once again, normal, when the doctor’s office called me. I needed to come into the clinic as there was something abnormal on my ultrasound.
Ever since I began menstruating at thirteen, I had extreme pain with my periods. With this pain, I also experienced abnormally heavy bleeding, violent mood swings, and crippling fatigue. Initially I thought this was normal and that the pain, bleeding, and exhaustion would plateau as my cycle regulated. By age fifteen, the pain kept me home from school three to four days a month, and I would be changing an overnight pad every two to three hours over the course of my period. My life revolved around my period and the pain that accompanied it. Two weeks prior to menstruation I would begin to experience cramping in my lower abdomen that would gradually worsen to the point of fainting. This pain was deep and unrelenting, radiating from my lower abdomen to my lower back, up my sides, into my hips, throughout my pelvis, and down my thighs. My heating pad was my constant companion, along with ibuprofen and acetaminophen. Alongside all of this was constant digestive issues, largely diarrheal. I always attributed this as a response to stress throughout high school, as my mother had similar symptoms when she was my age.
As menstruation began, the pain would intensify, along with heavy bleeding. This combination often led to fainting (and getting my driver’s license suspended once, but that’s a whole other story). By the twelfth grade I was fainting from pain around every two to three months. I began to seek help when I was fourteen. No one else I knew was completely incapacitated during their period or struggling to hang on throughout the rest of their cycle. No one in my sexual education class mentioned that cramping and extremely heavy bleeding during menstruation were abnormal. What I understood to be true was that pain with menstruation was normal, to be expected, and furthermore,accepted, because I was a woman.
My first experience seeking help was with my family doctor. I was fourteen. I asked if there was something that could be done regarding my heavy bleeding and unmanageable pain. She told my mother to leave the room and suggested I have an STD panel done. I explained that I did not feel that was necessary as I was not sexually active. She then suggested that all I could do was manage the pain pharmacologically with naproxen. When I asked how this medication works, as I did not want to be taking any hormonal medication, she said that if she wanted to become a biochemist she would have, and I could research naproxen and let her know the next time I saw her.
Thus began the uphill and ongoing battle of doctor’s appointments, disbelief, and being told that hormonal birth control was my only option to reduce bleeding and control pain. At no point did one physician suggest a diagnostic test, and at no point did any physician suggest that something may be wrong with my reproductive system. My parents struggled with infertility, and so this hung at the back of my mind. Because of the continuous stream of doctors telling me that this pain was acceptable, normal, and manageable with the right hormonal and pharmacological treatment, I often shoved this family history to the side. .
In my fourth year of university, I was newlywed and newly-sexually active. Pain with sex was often manageable but at times completely debilitating. When I sought care for this, I was again told that I must receive an STD panel prior to them pursuing any other diagnoses, despite the fact my husband and I were monogamous, and despite the fact that I had a startling history of abnormal menstrual symptoms. When the tests came back negative, I requested that an ultrasound be completed to confirm that I had no structural abnormalities. I was told that they would not perform any diagnostic testing with no clinical indication. I was met with hostility whenI asked if my pain was not an indication that there was something wrong. As I am sure you have guessed, they called me back weeks later, post ultrasound, and there was something seriously wrong.
As tears rolled down my face (more like poured, it was not pretty), the doctor explained to me that I had endometriomas on both ovaries. She also explained that I had benign cysts on both ovaries as well. The doctor explained that if I wanted to have children, I would need to consider a treatment plan sooner rather than later. I was twenty-one. As I faced this initial loss of potentially not being able to have children with my husband, many other losses began to settle on my heart. Why had no one believed my pain was real? Should I have pursued other options sooner? Had I not always known that something was wrong? Had everyone not told me that the pain I was experiencing was normal?
As I continued to seek care in my northern Canadian community, I quickly realized that my endometriosis and chronic pain was not considered urgent. And it really did not matter if it was urgent or not; there simply were not enough care providers, and it would be a wait time of ten months to see a gynecologist. Fortunately, I only had to wait six months as I was eventually put on the urgent list after ending up in the emergency department with a burst ovarian cyst. While I completely understood that there were more important and urgent cases that needed attention, it did not feel any less urgent to me. I had just found out that I could possibly never have my own children, and that my ovaries were slowly being suffocated by endometrial-like tissue.
Upon seeing the gynecologist and fertility specialists in my community, I received good news and bad news. After yet another humiliating and somewhat painful experience of being naked below the belt in front of a physician, I received the news that my tubes were in fact open, and my blood work was normal! However, the only management option I was given (that they felt was appropriate, of course) was to remain on hormonal birth control until my husband and I were considering conception. At twenty-one and aware that my body was created to ovulate monthly, I often asked if this was a safe potentially long-term option; and always received the answer that of course it was okay. I had never planned to be on birth control long-term; I had only been taking it as a contraceptive that I thought I could stop taking at any time. However, birth control was now something I had to take to possibly preserve fertility. This is not something I wanted to pursue for mental and physical health reasons. I asked the fertility specialist at what point would they consider performing excision surgery for pain management as this was my primary concern. I was told that they would never consider surgery unless I could not get pregnant. While I understood this from a fertility specialist, I felt that yet again my pain and overall health were being dismissed. My potential fertility is important to me, and I do acknowledge that this is not the case for every woman. But to hear yet again that my pain was not a primary concern was crushing.
As I continue to seek options today, I really do not know what I am going to do. I have sought care from a naturopath, a pelvic floor physiotherapist, and my gynecologist. Every day I worry if I am suppressing my ovaries too much and inhibiting ovulation forever or if my ovaries are slowly dying in the clutches of endometriomas. I wonder if I will be able to manage my pain. I wonder if I will be able to have sex without pain. I wonder if my husband and I will be able to have children of our own.
As I continue to navigate life with this disease, I have been asking myself what it means to have endometriosis. I feel as though my body is no longer my own; I went from never having anyone see my vagina to multiple doctors and ultrasound technicians knowing more about my body than I did. I grieve the loss of a pregnancy that is not highly monitored and planned. I grieve being able to just have sex without thinking about the possibility of pain. I fear how I will continue to manage the pain I experience daily. I fear coping with this disease for the rest of my life.
Despite this grief and fear that completely consume me on some days, I have also learned that I am resilient. I can answer for the thousandth time that actually I’m not sure if I can even get pregnant so no, I don’t know when I’ll be having kids and I still am able to laugh it off. I can advocate for myself and my health. I can pursue other avenues to support my health and manage pain outside of the paradigm of Western medicine. I can push through bad pain days and wake up the next morning. I can also nourish my body and rest when I need to. I am strong. Do I still cry after the majority of my doctor’s appointments? Definitely. Do I still cry into the night acknowledging the fear and grief that plague my mind and heart? Of course.
The most important thing that endometriosis has taught me is that I am not the only one who is suffering from this disease. 1 in 10 women worldwide suffer from this chronic illness, and that statistic only includes those who have been diagnosed. It takes an average of seven years to be diagnosed. This devastating condition has also given me great conviction to share what I cope with so that women know they are not alone in their physical, mental, or emotional pain. Most importantly, I am willing to be open about my illness so that women will seek care if they are experiencing endometriosis-like symptoms. I hope for all of us too not only seek help, but to continue to boldly advocate for ourselves and our health because unfortunately our pain is not often taken seriously.
While this disease has threatened to overtake me, it has not. Grief and fear are no longer enemies; they are occasional companions. As much as I try to stay positive, it can definitely be draining, especially when the majority of people respond to my illness with ‘just stay positive, and your chronic illness will magically vanish!’ As research continues, I will keep hoping for a cure and for better treatment options for all those suffering with endometriosis. Most importantly, I will keep advocating for my health because I deserve care that acknowledges that my pain is real and that it matters! And yours does too.
Meaghan Recollet is from a small city in northern Ontario. She lives with her husband, cat, and their new puppy. She is a young nurse who loves to learn and is passionate about women's health. She loves to read in her spare time, connect with others, and walk at their conservation area.
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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.