Having endometriosis is scary and not often talked about. While every woman's journey is different, this is mine. My goal is to share some insight on what it's like to have endometriosis and to help others understand what it's like to have this condition.
First things first. What is endometriosis?
Defined from Mayo Clinic: Endometriosis is a condition in which cells similar to the lining of the uterus, or endometrium, grow outside the uterus. Endometriosis often involves the pelvic tissue and can envelop the ovaries and fallopian tubes. It can affect nearby organs, including the bowel and bladder.
Please remember that I am not a medical professional, and it's crucial to seek medical advice if you resonate with any of the symptoms described. My journey with endometriosis began in 2020 when I started noticing symptoms that were initially attributed to my ulcerative colitis by my doctors. However, I constantly felt there was something else at play.
I experienced extremely painful menstrual cycles that coincided with significant ulcerative colitis flare-ups. These episodes occurred about twice a month, both during ovulation and my menstrual cycle. The pain was so severe that I often found myself lying in the fetal position in the bathroom, as it was the only place where I could find some relief. By the time I managed to get to the emergency room, the episodes would often have already subsided. This cycle of intense pain and subsequent physical exhaustion went on for about a year, making it extremely difficult for me to work. Most people were not aware of what I was going through. I was juggling three jobs and attending college at the time.
One day, as I was sitting on the couch, a commercial came on—the kind we often laugh at, the ones that list a plethora of symptoms and suggest you might have a specific condition. Normally, we kind of laugh at those infomercials, but this was the first time I sat there and thought, "Hey, I actually have every one of those symptoms." I was experiencing severe menstrual cycles and extreme pain during ovulation. I was also incredibly anemic and constantly struggling with fatigue. The cramps in my abdomen were so intense that when people touched my stomach during a flare-up, it was as hard as a rock. Additionally, I was dealing with painful bowel movements. Realizing that something didn’t add up, I decided to schedule an appointment with my ulcerative colitis doctor. However, the initial reaction from the medical professionals was one of skepticism, primarily because of my young age.
I was 22 at the time, which made me hesitant because all my research indicated that these symptoms were more common in women in their late 30s, 40s, and 50s. My ulcerative colitis doctor suggested that I discuss the symptoms with my gynecologist while continuing my current medication. They also prescribed a steroid to help manage the condition. Despite this advice, I still felt something was off. I've always enjoyed food and never had any issues with it until recently, around the time these symptoms started to escalate. I ended up consulting three gynecologists, but all of them dismissed my concerns, saying I was too young for the condition and insisting that the only way to diagnose it definitively was through surgery. Due to my age, they were unwilling to take that risk. As a last resort, I researched and found an endometriosis specialist in Gilbert. I decided that if she thought there was nothing significant, I would give up my pursuit of a diagnosis. However, if she believed there was something worth investigating, I would take it as a sign to continue.
During my consultation with her, I explained all my symptoms. She ran a couple of ultrasounds and discovered cysts on my ovaries. Based on these findings, along with my symptoms and where I was in my cycle, she recommended proceeding with the first part of the diagnostic surgery.
This is where things got interesting. Before this, I was unaware of the various stages of endometriosis and the different approaches to treatment based on its severity. The diagnostic process starts with an initial surgery, commonly involving two incisions. Through these, doctors examine the affected area to confirm the presence and severity of endometriosis. If minimal endometriosis is detected, they can often remove it during this initial procedure. However, if the endometriosis is more severe, difficult to reach, or deeply rooted, they will close up the incisions and schedule a more extensive second surgery to address it properly. For the second surgery, doctors make five incisions and attempt to remove as much of the endometriosis as possible.
I had my first surgery in May 2021 and the second one in June 2021. After the second surgery, I was informed that they had successfully removed all of the endometriosis, which was quite severe. Although it wasn't affecting my upper organs, it had spread all over the lining of my body. Additionally, they removed a large cyst and extensive endometriosis surrounding my right ovary, ultimately rebuilding it. They assured me that all the endometriosis had been successfully removed and that I shouldn’t face significant issues in the near future. However, they mentioned that I might need another surgery in about 5 to 10 years.
In January 2024, while at work, I suddenly felt extreme pain in my right ovary. The sensation was unmistakable, and I knew instantly that it was my right ovary. Initially, I hoped it was just a pulled muscle and thought the pain might subside with time. However, the discomfort only grew worse, to the point where walking became nearly impossible. I could almost feel a physical protrusion. Concerned by the worsening pain, I scheduled an appointment with my gynecologist. An ultrasound revealed a large cyst on my right ovary—so large that it was bigger than the ovary itself.
The concern was immediate: my gynecologist advised urgent surgery due to the risk of ovarian torsion, which could cut off circulation to my ovarian tubes and potentially land me in the ER in an even worse situation. I was referred to a specialist for endometriosis, but scheduling an appointment proved difficult. Each day, the pain became increasingly unbearable, yet I received no response from either my gynecologist or the referral, and there seemed to be no urgency to expedite the surgery.
Desperate, one morning I decided to call my former endometriosis surgeon, who had been excellent in the past. The receptionist informed me that she was booked out until May. Overwhelmed, I broke down in tears and pleaded for the soonest possible appointment, asking if they could at least send a message to her in case of any cancellations. She knew me well and agreed to send her a message, stating that it was the best they could do. To my surprise, the very next day, I received a phone call informing me that my surgeon wanted to see me as soon as possible. She had rearranged her schedule out of serious concern for my condition. I was immensely grateful. Upon examination, they immediately determined that I required extensive surgery. The issue was that she did not have any available openings for an extensive surgery, which requires an entire day. The earliest she could possibly fit me in was May, with the option of performing two smaller surgeries instead. However, the very next day, the office called and informed me that, by the grace of God, someone had canceled their extensive surgery scheduled for the next week. They asked if I could make it work, and of course, I said yes.
I didn't know what to expect going into this next surgery. I was really confused because I had been told I would be okay for at least 5 to 10 years, but I had barely made it to two. While I knew my endometriosis had worsened, I couldn't predict what the outcome would be from this procedure, which was allotted the maximum time in a single day. After the surgery, the doctors informed me that my endometriosis had returned more intensely than before. It had spread up into some of my organs, and they had to remove my appendix because the tissue had wrapped around it, effectively suctioning it off. The endometriosis was dispersed all over the walls of my body, and there was a large cyst on my right ovary. This cyst was so big and filled with endometriosis that they couldn't differentiate between the cyst and my ovary. They decided to pierce and drain the cyst, which allowed them to identify what needed to be removed and subsequently fix my ovary.
Thankfully, they ran scans on the cyst to ensure there was no cancer, and the results came back negative.
I'm sharing this journey because over time, I've come to realize three lessons that could be incredibly valuable to everyone. These insights stem from a mix of challenging and eye-opening experiences, and I believe they can offer guidance and perspective.
- You know your body better than anyone else and understand your own feelings. If you sense something is wrong, seek medical help, but don’t settle for the first diagnosis like I did with the first three doctors I consulted. Only persistence led me to the proper care I needed—who knows where I'd be otherwise. Remember, age does not limit the validity of your symptoms. Whether you're young or old, every symptom is important. Don't hesitate to seek professional medical assistance until you are confident that you are receiving the help you need and deserve. Your health is a priority, and it's essential to advocate for yourself.
- Endometriosis affects not only your body but also your mental and emotional well-being. The process of making difficult decisions to improve your quality of life while facing the possibility of infertility is incredibly challenging. I personally understand this struggle, as I have been told by multiple doctors that I won't know if I can have children until I try, and even then, there are significant risks.Becoming a mother has always been a dream of mine. I have had moments of profound sadness and uncertainty, feeling inadequate as a woman and guilty for prioritizing my own health. However, I have come to realize that my worth is not defined by my ability to have children. My value lies in who I am as a person, the love I share with those around me, and the positive impact I can make on their lives. You deserve to live a pain-free and healthy life. Remember that your worth is intrinsic and not tied to your ability to bear children. Advocate for your health and well-being because you are worthy of a life filled with care, love, and respect.
- You're strong, but even the strongest among us can't do it all alone. If you're like me, you value your independence and prefer to handle things yourself. However, dealing with medical conditions, especially during flare-ups, episodes, or post-surgery, teaches you that it's impossible to be strong all the time. This experience is humbling and highlights the importance of having a reliable support system around you—people who make you feel safe, comfortable, and who understand how to assist you in various states. It’s crucial to acknowledge that you don't need to be strong every moment of every day. It's okay to cry when the weight of everything becomes overwhelming. It's okay to ask for help when something is unclear. It's okay to seek a second opinion when you feel uncertain. Understand your own strength, but also recognize when it's depleted and reach out for support. Remember, true strength lies not in the absence of vulnerability, but in the courage to seek help when you need it. Embrace your resilience, but also allow yourself the grace to lean on others when necessary.
That's my journey so far, and it's far from over. If you're reading this and finding some of it resonates with you, know that you're not alone. If you're experiencing similar symptoms, seek out a medical professional who will listen and take you seriously.
Remember, both you and I deserve a happy and healthy life—so let's advocate for ourselves and get the support we need.
