Personal Narratives

17 Years of Pain: My Journey Living With Endometriosis

This article was written for The National Association of Nurse Practitioners in Women’s Health newsletter. To view the originally published article, please visit their News & Press page here.

“My name is Alexandra (Ali) Low and I am a Labor & Delivery nurse, Forensic nurse, student Nurse Midwife, student WHNP, and was a 2023 NPWH Student Ambassador. Aside from my professional life, I suffer from endometriosis, and I would like to share my experience living with this disease and the chronic pelvic pain it causes.

Endometriosis is incapacitating. It infiltrates every aspect of life, affecting work, school, and relationships. Though many people across the world suffer from it, there is little known about why it occurs, how it spreads throughout the body, and how to best treat it. When I was 10 I had my first period which started my journey of this debilitating pain, not being believed, and fighting for answers. Endometriosis is a medical condition where endometrial tissue, from the innermost lining of the uterus, the endometrium, grows outside the uterus. It causes a slew of symptoms, and each person may experience a different collection of symptoms. For myself, it causes pelvic pain that interferes with nearly every aspect of my life, dyspareunia, abnormal uterine bleeding, excessive menstrual bleeding, irregular menstrual cycles, and gastrointestinal symptoms. I was told this was normal by several providers and that I should just go on oral contraceptive pills (OCPs) and that would be the panacea for my symptoms. I was only 17 at the time and did not know any better, so I listened and began taking OCPs. They did not stop the pain, but it did help the bleeding and irregularity of my cycles.

In my early twenties, the pain increased. I experienced several ovarian cysts rupture which were confirmed via pelvic ultrasound. This prompted me to try again to find an answer to the pain I was experiencing on a near daily basis. When I went to my provider, now over 10 years after I initially experienced this pain, I first heard the word “endometriosis”. It was a mere mention, nothing more. As I began researching on my own, everything started to click. The pieces of the puzzle I was discovering fit perfectly. All the symptoms I read about matched with my own experience. No additional tests were performed other than, yet again, another pelvic ultrasound. I later learned that endometriosis is typically not seen on any imaging, unless there are cysts present or the endometriosis is severe. I had also discovered that the only way to diagnose endometriosis is via a diagnostic laparoscopic surgery. This information should have been given to me by my provider. During this time, I met with several other providers, trying to find one willing to perform the surgery in hopes of achieving a diagnosis and excising the endometriosis if identified. This is when things began to take a negative turn. With each new provider, I was continuously not believed. I was told to see a gastrointestinal doctor, a therapist, and that my history of sexual assault (I was raped in college) caused my pelvic pain. Though a history of trauma can cause this experience, I had been in therapy consistently since that happened to me and it did not explain the plethora of other symptoms I was experiencing. My pain was simply not believed. I started to feel like I was crazy. I was being conditioned to accept and ignore the agonizing pain I endure on a near daily basis. Imagine suffering and having several people tell you that it is in your head. After awhile, you start to believe it. So, I looked for support in social media groups with survivors of endometriosis and though I did not engage frequently, I read countless posts with experiences similar to mine as well as numerous negative encounters in the E.R or with their providers. This scared me and was the reason I had never gone to the E.R. for an exacerbations of pain. That is, until 2023.

In June of 2023, I experienced the worst pain of my life, what I know for a fact now was an endometriosis exacerbation. I tried nearly every pain medication, including narcotics, none of which alleviated the pain. Due to the uncontrollable pain, my provider recommended going to the E.R., since it was after business hours and we needed to rule out anything emergent such as ovarian torsion, appendicitis, or a ruptured ectopic pregnancy. Maybe you can guess where this is headed, but little did I know, this would be one of the worst experiences of my life. When I arrived, I was clear from the beginning, that my pain was a 9/10. In truth, I wanted to say 10/10 yet feared my pain not being believed, again. Afterall, by now I had read countless posts on social media about those like me visiting the E.R. and their pain not being believed on top of my own experiences with providers thinking I was making it up. I was not offered any medications for my pain for several hours and spent most of those hours alone in the room I placed in. As a nurse myself and former emergency room tech, I understand that emergency rooms are often chaotic, and nurses are stretched thin. There is a national nursing shortage. However, it unacceptable to leave a patient sitting with that level of pain for several hours. At some point my nurse finally came in and took a set of vital signs. My blood pressure and heart rate were extremely elevated. I brought this up to the nurse, advising that these were not normal for me, and objective manifestations of my severe pain. This concern was brushed off. I was then placed in a wheelchair and sent off to get yet another pelvic ultrasound. How many is that now? As I mentioned, I am a survivor of sexual assault. I warned the ultrasound tech that I may shake, and my teeth may chatter, my trauma responses, and that would be okay to continue unless I say “stop”. Halfway through this procedure, I started to shake. Instead of asking if I needed a break or if I was okay, the tech asked me if I was “a virgin”. I cannot even begin to discuss how disrespectful, embarrassing, and unnecessary this question was. It could be an entire article on its own. This question also had no bearing on my case and should not matter. Trauma informed care was not provided. After this traumatic experience, I was left alone in a wheelchair, in the hallway, for about 45 minutes. At this point, I lost it. I began to cry, still in pain and now suffering alone. After returning to my room, I was told my ultrasound was normal, not surprising. A new nurse then came in, started an IV and finally, several hours later, I was given morphine and Toradol. After administering these medications, my IV infiltrated. This occurs when the medication, or fluid if there is an infusion running, leaks out into your tissue. The medication cannot be adequately delivered at this point. This is when I first told the nurse that I, myself, am a nurse and expressed concerns that my IV had infiltrated. It was also causing me pain on top of the “uterus on fire” like pain was suffering. I had also shared with her that these medications did not improve my pain. She brought back a second dose of morphine, did not replace the IV as I advised and requested. So, the medication given through a failed IV. As expected, it did not improve my pain. In summary, this experience was traumatic, and had me feeling incredibly disappointed in my nursing colleagues. We are taught in nursing school that pain is subjective and considered the “fifth vital sign”. Therefore, the only way to know your client’s pain, is to ask them and then believe them when they tell you what it is. It is unacceptable to leave a patient’s pain at a 9/10 for several hours, question their virginity which is antiquated and sexist, ignore their concerns, and not believe them. These encounters violate the ANA Nursing Code of Ethics that promote care for the whole person and patient safety and advocacy (ANA, 2015).

Two weeks ago, on December 19th, 2023, it was finally confirmed through surgery that I do have endometriosis. At last, I was given an answer and it felt validating. After years of my pain being brushed under the rug, told it was normal, blamed on my history of sexual assault, and blatantly ignored, I no longer felt crazy. It was one of the most freeing experiences of my life. I have my Family Nurse Practitioner and surgeon to thank for finally believing me and helping me facilitate diagnostic and excision surgery. They made me feel heard and seen.

Unfortunately, my story is not unique. 1 in 10 people with a uterus have endometriosis (WHO, 2023) and most of us experience a 10-year diagnosis delay (Yale Medicine, 2022). This means that the majority of endometriosis clients wait at least 10 years to receive an answer for their pain. In my case, it was 17 years. My hope and prayer in sharing my story is to shine a light on the real experiences those of us with endometriosis and as to encourage medical professionals who care for clients like me, to believe the pain rating we tell you. As a future Certified Nurse Midwife and Women’s Health NP, I plan to use my experiences and those of my fellow endo warriors, to advocate for more federal funding for endometriosis research, improved education across the board for any healthcare provider, and spread awareness of the suffering we endure in terms of our symptoms, how we are treated in healthcare, and the ramifications of these encounters.”

Alexandra Low, BSN, RN, IBCLC, SNM/SWHNP

References

American Nurses Association. Code of Ethics for Nurses. American Nurses Association. (2015, January). https://www.nursingworld.org/practice-policy/nursing-excellence/ethics/code-of-ethics-for-nurses/coe-view-only/

World Health Organization. (2023, March 2). Endometriosis. World Health Organization. https://www.who.int/news-room/fact-sheets/detail/endometriosis

Yale Medicine. (2022, August 11). Endometriosis. Yale Medicine. https://www.yalemedicine.org/conditions/endometriosis