Hi everyone, I’m Melissa, an outdoor adventurist who loves to write, ride through country roads on the back of my husband’s motorcycle, sip green tea during my morning devotions, pray with others, camp, hike, travel, and spoil my black lab.
I recently had a conversation with a close friend about “little victories” that changed my outlook on life. A little victory for one person might look something like: getting a workout in, meeting with a relative for lunch who you’ve been trying to catch up with for a year, or maybe you just got through your shift at work and that was a victory in itself. Since being diagnosed with endometriosis, I’ve gained a new perspective on life and how I want to live it. What most people don’t understand is that a day without pain or any symptom of the disease for that matter is a little victory for us “Endo Warriors.” And for many, that might actually be a BIG victory.
Though my true “diagnosis” of endometriosis didn’t come until June of 2018, other than my regular horrid periods, my struggle with complications of this disease started when I was in college. It was my junior year of nursing school. Not stressful at all! [Note my sarcasm]. I remember studying for finals and my period was due that week. I vividly recall sitting in my chair during the diabetes exam, when a terrific wave of nausea came over me that was also accompanied by epigastric pain. A sharp, stabbing sensation right between my ribs underneath my diaphragm. To make a very long story short, this was the first time I ever noticed pain in my upper abdomen, versus my normal lower pelvic cramping during my cycle.
Fast forward two months after surgery and my epigastric pain was back and worse than ever! If I hadn’t given you the clue earlier of how much ibuprofen I was taking to survive my periods, maybe you wouldn’t have guessed that I eventually had an EGD [a non-invasive procedure that should have been done BEFORE my gall bladder was removed!] and was diagnosed with “severe erosive gastritis.” The ibuprofen I had been taking all my life for my unbearable period cramping, literally ate away my entire stomach lining. If you’ve ever heard of someone getting a stomach ulcer, it was like that, only my entire stomach lining, without any actual perforation. A couple months of medication to fix this problem and wa-la, improvement! “And don’t ever take ibuprofen again,” my GI doctor said in a stern voice. Little did he know, I was told by another professional provider to take as much as I needed to survive my periods. Hmm…
So, in May of 2018, we placed our hopes, dreams, and desires in God’s hands and officially tried to conceive. As anyone who has tried or is trying to conceive knows, the timing of this whole process is a nightmare! We tried to conceive in May, and literally the day after we tried, I began to get this gnawing, dull, cramp in my left pelvis. My heart began fluttering, “is something happening already?!” Oh, how naïve. This dull cramping lasted for two whole weeks, every single day, up until my dreaded period [the first month of devastation—‘What?! I didn’t get pregnant on the first try?!’]. But then, something new happened. The cramping continued after my period. Nothing major, just a dull cramp. Nevertheless, a new symptom for me. But, on June 13, 2018, I was working a day shift and around 0800, this crushing pain came on through my whole pelvis like I’ve never experienced. I remember caring for a surgical patient who was asking for pain medication. As I was standing at their bedside, pushing an IV pain medication, I was literally dripping beads of sweat, hardly able to stand up straight, and about to pass out from this excruciating pain. I didn’t hide it well. I thought my uterus was literally ripping in half. I ended up leaving work, allowing the pain to subside [I am always hesitant to go to the ER as I am a nurse and know the process] and within a few days, getting in with a new OB doctor. Two ultrasounds later and a phone call the day after my appointment—“You have a golf-ball sized lesion on your right ovary and I think we should take you in for surgery. You may have endometriosis.” My doctor had gone through all my past records and treatments for suspectedendo before. However, he reassured me that this time if it was there, he would know it. I trusted him and we proceeded.
June 29, 2018, I was diagnosed with stage 4, severe endometriosis. “Chocolate cysts” as doctors call them, covered my whole pelvis. My uterosacral ligament had a thick layer of endometriosis that had to be scraped away. Both ovaries were engulfed in endo cyst tissue, but thankfully saved—my doctor knew we wanted to have children and taking one of the ovaries would have reduced our chances by 50%. There was “staining” on my bladder and colon, meaning the endometrial cysts were touching my bladder and colon, not yet invading but eventually would have if not been removed. The large lesion on my right ovary was an “endometrioma” which is basically a very large mass of endometrial cells all in one clump. The staging of the disease is based upon cyst involvement—how much tissue is there that shouldn’t be. My surgery lasted 2 ½ times longer than expected in order for my surgeon to meticulously carve away all the disease. My doctor shared that endometriosis is found in 1 out of every 10 women, but due to my young age and the severity of disease found, my case is closer to “1 in 100.”
After surgery I was taking my first walk in the hall with my nurse, but I hadn’t yet been told the news of my diagnosis. We were strolling in the direction back to my room and she says, “Aren’t you the patient with the severe endometriosis?” What?! After being left alone to my husband and mom, my mom shared the news and I burst out into tears [y-ouch did that hurt my incisions!]. This diagnosis ‘automatically’ decreases our chances of conceiving by 30-50% [I put automatically in quotes because I believe in a God of miracles!]. For whatever reason, [scar tissue, endo tissue, etc.] the body just has a harder time conceiving, and to top it off, it was found I have a retroverted [backward] uterus. Another hurdle. My mind immediately starts spinning. I had read some detailed information about endometriosis prior to my surgery date. Let me just say this, don’t read into everything you read, thinking that will happen to you! I instantly filled up with fear thinking that I’m going to get ovarian cancer now [a higher possibility in women with endometriosis], not be able to have children or a family, will have health issues the rest of my life, etc. Thankfully I recovered wonderfully from my surgery and was surrounded by an amazing support group who were gentle and graceful with me. Never did I imagine that such a physical diagnosis could become even more emotional in nature. My experience has given me great insight as to how my patients could be feeling after some of the things they are enduring in their journeys.
Since the removal of my endometriosis, [just to be clear, endometriosis does not have a cure and though the abnormal tissue is removed from surgery, the disease still remains and may return] I have still struggled with complications and common symptoms of endo—I have had periods that have been some of my most painful periods ever, GI symptoms—nausea especially at night, vomiting out of nowhere, constipation, diarrhea, painful bowel movements, painful sharp urges before bowel movements, burning epigastric pain that I have already been dealing with from the bile reflux and gastritis, gas pains, ENDO BELLY [look it up if you haven’t]—urinary frequency, fatigue, headaches before my periods, weight fluctuations, mood swings, anxiety, dizziness [if my coworkers ever wonder why I’m always checking my BP and sitting down], mental exhaustion, iron deficiency [due to heavy bleeding], restlessness, painful intercourse, and infertility. All this information is very personal and shared as a means to spread AWARENESS about this unspoken disease! So many women are struggling with pain, thinking it’s “normal” and it’s NOT! It took me 6 doctors, 2 surgeries [possibly soon-to-be 3], 2 non-invasive procedures, countless office visits, numerous pokes and prods, endless nights of crying and PAIN, in 7 years to get my answer!
Two types of surgeries exist for endometriosis. Ablation or “laser” surgery and deep excision surgery. I recently read a book by endometriosis specialist, Dr. Tamer Seckin called, “The doctor will see you now.” 9 months after my diagnosis and I had to find out on my own what “deep excision surgery” is. Never heard the term before. Though not exactly described this way, my nursing brain came up with the analogy of an iceberg. Imagine an iceberg. Ablation or laser surgery burns off the top of the iceberg. The problem is, there is still a mass under the surface we cannot see that could just continue to grow back (above the surface) and cause issues all over again. Deep excision surgery is literally cutting out the endometriosis. Going “deep” [hence the name “deep” excision] below the surface, chipping away at, and cutting out the iceberg below. After reading about this and discovering that when the doctor of my first surgery described his process as “cauterizing” a possible lesion, a light bulb went on. Did he do laser surgery on me?! I trudged down to my clinic, signed a release of information to retrieve my records and operative reports for BOTH of my surgeries (2013 and 2018). Sure enough, ablation. Worse, even my recent surgery with diagnosed stage 4 endo, the surgeon did another ablation surgery.
In March I attended the 3rd annual MN EndoMarch in Minneapolis. I was SO encouraged by all of these empowered women joining together to fight against endo and spread awareness! As the panel of physicians sat on stage and explained the necessity of deep excision surgery versus ablation surgery, my heart just dropped. Why didn’t my physician do deep excision surgery? The short answer—he probably has never done it. He’s not specialized in it. So my hope and desire is to transfer my care to one of the physicians who was present at the EndoMarch and pursue a deep excision surgery for pain relief and possible increased fertility chances. All in all, there is so much work to be done with this disease. I want to be an advocate for myself and for other women who are enduring endometriosis. We deserve to KNOW what is going in our bodies, let alone be treated with the best care!
Countdown to the 2019 Minnesota Endo March