Marixsa is a fellow blogger and Endo advocate. She was diagnosed when she was 28 years old. Now 33, her story is a heartbreaking, yet encouraging, one. Almost two decades of suffering without a diagnosis, being told she was exaggerating, living in fear of intimacy, missed diagnoses (not misdiagnosis…but literally doctors not seeing her Endometriosis while in surgery), followed by a myriad of additional surgeries, emotional rollercoasters, fertility treatments, and miscarriage. Although scarred, Marixsa is truly a strong and beautiful Warrior, rich in faith and determination. She continues to fight, for herself and for other EndoSisters. And I hold her among my heroes.
Marixsa’s Journey: Like so many women, endometriosis affected me years before I was diagnosed. It’s been quite a journey, which is why this section is so long. Here’s where this road has taken me:
Teens: I first got my period at age 12. I remember during the obligatory fifth grade “girl talk” in school that menstrual cramps were discussed, and the idea of pain every month scared me at that young age. Ironically, that fear may have later helped prepare me for what I didn’t know I would endure in my teenage-hood and young adult years. Because cramps? They became a formidable enemy. All through my teens I suffered from severe menstrual cramps. It reached a point where people actually accused me of exaggerating them for attention. This was coupled with the fact that, because my mom died when I was very young and my dad raised me, he was ill-equipped and ill-informed on how to handle a menstruating teenager. I recall cramps during my teens that were so intense I was literally paralyzed in bed one or two days a month. My period was irregular back then too, which meant I never knew when pain would strike. I missed a lot of school as a result. Back then, I didn’t know all of this wasn’t normal
At age 15 my dad finally made me an appointment with our family doctor for debilitating cramps. I’ll never forget my elation about having someone who could actually help and would finally listen. My hope was short-lived, as I disappointedly left the office when the doctor himself also suggested that I was amplifying my symptoms.He dismissed my concerns and sent me home with a prescription for extra strength ibuprofen. I never returned to that doctor again.
Marriage: Fast forward to age 21 when I got married. Although my period had finally pretty much regulated itself, painful cramps continued to dog me: they caused me to miss work, to lose a job, to decline social activities, and to generally miss out on so much of life. During our honeymoon, sex was so painful that I couldn’t do it without bursting into tears. What could have been a beautiful, romantic honeymoon turned into a tear-filled week. I didn’t know it then, but painful sex, or dyspareunia, frequents endo sufferers.
Surgery # 1: After six months of ongoing dyspareunia I went to see my gyn. She did a cervical scrape (ouch!) which showed irregular cells hanging out in my cervix. Further testing revealed a large dermoid cyst on my right ovary. It had a solid filling as opposed to being fluid-filled. After surgery to remove the dermoid, I awoke in the recovery room to find the operating doctor standing over my bed. He explained that the laparoscopy incisions were too small to remove a dermoid (dermoid cysts are solid-filled cysts as opposed to fluid-filled; as a result, they must be retrieved carefully and intact to avoid content spillage) and he’d instead had to cut me open with a laparotomy. He’d had no choice but to remove my right ovary as well, as the dermoid had grown around and over it, basically swallowing the ovary whole. I’d gone into surgery informed that these were worst-case scenarios, but I didn’t expect them to actually come true. I was 22 years old and didn’t fully grasp the impact of losing an ovary. My incision became infected and resulted in a long, ugly scar lengthwise down my belly button. In addition, I had four laparoscopy incisions from the doctor’s repeated failed attempts at laparoscopic removal.
Surgery # 2: A few years later I mysteriously developed a keloid in my belly button. It grew so large and so quickly that it also herniated my umbilicus. The keloid literally grew outward from my belly button and filled the cavity. I couldn’t sit down, stretch, exercise, etc. without intense pain. I had another surgery—a second laparotomy—to repair the hernia and remove the keloid. Basically, the keloid had developed because the doctors who performed my first surgery didn’t clean up after themselves and now uterine lining was trying to grow outward from my belly button: it was like endometriosis on the outside of the body! I lost my belly button and added another 3-inch abdominal scar to my collection. I was 25 years old.
Surgery # 3: Two years later during a routine gyn appointment I complained to my doctor about continuing dyspareunia, painful menstrual cramps, heavy periods, and ongoing ovarian pain. At this time, my husband and I had unsuccessfully been trying to conceive, or TTC, for about 5 months. A blood test and ultrasound showed a massive cyst on my lone remaining ovary and high CA-125 counts, which is a blood test used to test precursors to ovarian cancer. The doctors feared the cyst was cancerous and a reproductive oncologist surgeon, or ROS, used low transverse abdominal incision this surgery, which is the same incision used in cesarean sections, to remove the large cyst and surrounding smaller cysts along with a very small portion of my ovary. This surgery—while more intense recovery-wise—was the “best” one as far as surgery goes. Why? Because someone finally looked, someone finally tried to get to the bottom of things, and I was finally given a diagnosis, an answer to so many years of confusion: stage IV endometriosis. Severe stage four. I’ll never forget when the ROS told us that mine the worst case of endometriosis she’d ever seen. My insides had been all kinds of stuck together with adhesions. Organs that should never normally be in proximity to one another were intricately glued together and the adhesions ran thick and deep. The ROS cleaned out all the endo she possibly could and sent me on my way. I spent 3 nights in the hospital recovering and boasted a 6-inch incision to my scar collection. I was 28 years old.
Surgery # 4: Only thirteen months later, I found myself back on the operating table. All of my symptoms had returned, another ominous cyst was overtaking my ovary, and my CA-125 markers were way too high. Once again, they feared cancer. This time around I elected to have a reproductive endocrinologist, or RE, perform the surgery. I went in for a 45-minute robotic-assisted laparoscopic procedure and came out of the O.R. four hours later. Eerily similar to the prior year’s surgery, the RE diagnosed me with severe stage IV endo and—just like my ROS—said it was the worst he’d ever seen. He also removed another small portion of my ovary during surgery. The endo was so widespread that my RE was forced to give me an episiotomy to remove an adhesion that had stuck part of my rectum to my uterus. Recovery was slow and painful and I spent 2 nights in the hospital. I was 29 years old.
Infertility Treatments: This same RE performed an antral follicle count on me post-surgery. Fragility-wise, my eggs at that count were the age of a 33-year-old’s. When my regular gyn read the RE’s report he felt validated to tell me for the third or fourth time to just go ahead and have a hysterectomy. As always, I refused. Despite his ominous predictions of a future that involved infertility, more surgeries, and pain, I wouldn’t throw in the towel. Once recovered, my husband and I went back to TTC. After two more years went by with no luck we consulted with a new RE. I had a battery of tests done, all of which showed that I was ovulating normally and that no cysts had returned. My RE considered that I suffered from a syndrome known as Luteinizing Unruptured Follicle Syndrome which was contributing to our infertility. Eventually that syndrome was ruled out and it was decided that our inability to conceive was due solely to my endometriosis and weirdly-shaped uterus.
He wanted me to have another endo cleanup surgery; I immediately declined. Against my RE’s advice we tried IUI. It failed: IUIs for women with endo are generally unsuccessful. Not long after I switched practices to a new RE and we jumped right into IVF. My Anti-Mullerian Hormone, or AMH, score was very low and showed my egg quality was that of a much older women. Donor eggs were suggested; we declined and opted to use my own eggs instead. I responded poorly to the IVF stimulation medications and took massive amounts of them in an attempt to produce as many follicles as possible. My RE retrieved 13 matured eggs from my ovary, 9 of which fertilized with ICSI. Out of those, 2 made it to embryo status. One of these embryos was transferred into me and the second one went to the Big Freeze. The transfer was successful and I was, at long last, pregnant.
Loss: Only 5 weeks into the pregnancy, after unfounded scares of tubal pregnancy and bicornuate uterus, I was diagnosed with a blighted ovum, essentially meaning the embryo died in utero and was reabsorbed back into my body. The empty gestational sac, however, continued to grow as in a normal pregnancy. I elected to have a natural miscarriage. At 11 weeks I miscarried naturally for the second time. I was 33 years old.
Today: The journey continues even now. While all of these things related to endometriosis may have happened to me, they do not define my life. I refuse to become consumed with a disease: I don’t think of myself as “having” a disease but of navigating through a disease. All of these scars serve to remind me that I still have hope! Where I’ll go from here isn’t clear to me right now. If my FET fails this spring I’m considering another laparoscopy surgery to clean up any endo that may have come back. And if the past is any predictor of the future, then it has come back. All I can do is to do my best and believe God for the rest. He is bigger than this disease.
Words of Advice for Us: Never give up! Pain is not normal, whether it’s pain from cramps, during sex, or just in general. Talk to your doctor about your concerns, and if he or she doesn’t or won’t help you, keep on seeking until you find someone who will take you seriously. Treat yourself well and take it easy if you must. That said, try not to let this disease consume you or your life. You are stronger than it is. Last, keep seeking the Lord. If you are stronger than a disease, how much more is He? Prayer works!
The Last Word: Just a big Thank You to Lisa for all of your devoted hard work to this website and to helping fellow endo sufferers find answers!
Thank you, Marixsa, for being so bold to share your journey, struggles, heartbreak, and strength with us today. May your story inspire countless others to continue their fight. I wish I could be there to hug you right now…
And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.