In May 2022, I received an official diagnosis of Stage 1 endometriosis. Finally an answer to my many years of pain and suffering that I experienced for nearly a week every month. After being blown off by my regular ob/gyn for two years, despite calling their office every couple of months complaining of pain so bad it literally made me nauseous and almost resulted in several ER trips, and after being told that I was “fine” following after several normal ultrasounds and bloodwork, I finally had enough. I expressed concern that my pain could be due to PCOS or endometriosis, and that I wanted to start trying for kids sooner rather than later due to my age. I had to fight just to get blood work done, because the only answer my doctor gave me was, “If you start trying to conceive and can’t get pregnant in six months, then we’ll do bloodwork and evaluate.” Over the past year, I had seen a few friends post on social media about their struggles and journeys with endometriosis, so I started researching the disease.
In 2021, I shared my story in the Pharmacist Moms Group (PhMG), which provides a wealth of information from women pharmacists all across the country. I desperately hoped I would get some suggestions or any information at all about the possible cause of my pain. One pharmacist asked if I had ever heard of a NaPro (Natural Procreative Technology) doctor. This question was absolutely life changing. NaPro physicians specialize in reproductive and infertility disorders. They also typically recommend that their patients who experience issues do a natural cycle tracking method called the Creighton Model Fertility Care system. This led me to start working with a local Creighton practitioner who is absolutely amazing and truly took the time to listen to my concerns. She also suggested I go for a consult with one of the two NaPro specialists in Steubenville, OH or in Camp Hill, PA.
I scheduled my first consultation for October, 2021. During the first visit, my doctor really took the time to listen to my concerns, started the process of ruling PCOS out, and proceeded to give me several options on next steps. I was amazed when he did a quick physical and right off the bat said, “you have some shading of the skin around your collarbone. That’s common in people with insulin resistance.” Sure enough, two weeks later the glucose tolerance test he ordered that I have done showed that I have insulin resistance. I’d spent nearly five years telling my regular doctors that I was having trouble losing weight despite intense exercise and diet modifications, and nobody ever thought to test me for glucose intolerance because my fasting blood sugar was always in range. I was diagnosed with high blood pressure and sleep apnea, which are both also weight-related. I also stopped birth control at his suggestion since I had been on it for nearly 18 years with little to no pain relief and terrible off-cycle cramping.
The Creighton charting method can tell a lot about different gynecological and fertility disorders. PCOS was ruled out but the terrible monthly pain persisted. I had another consultation with my doctor in the winter of 2022 to discuss getting a diagnostic laparoscopy in the spring, since laparoscopy is the only way to confirm an endometriosis diagnosis and determine staging. I scheduled the procedure for 5/4/22.
The surgery went extremely smoothly. I was not nervous at all about the surgery itself because I knew I was going to be in excellent hands. I was not sleeping well the entire week prior to surgery due to anxiety about what I was going to find out via laparoscopy. Were my reproductive organs and fertility going to be affected if I had endo? Would I need to do IVF or pursue other routes for having a baby? Would it be stage 2 or 4 endo and would have to do another surgery later in the summer or fall? Would I have to take more time off of training? Would it be something worse than endo? Or what if it wasn’t endo that was causing this pain?
The surgery itself was about two hours long. Most of my anxiety about the surgery was not the procedure itself, but that I would find out I had to go through this again and/or my fertility was impacted. I was told that if my surgery was stage 3 or 4 I would have to have another surgery later in the summer to properly remove all of the endometriosis.
My husband gave me the report from my doctor as soon as I was in the recovery area and said mine was a diagnosis of stage 1 endometriosis. Many small spots were removed from all over, and a half-dollar sized lesion as well as another slightly smaller lesion were removed from my left side, near my rectal area. My fertility was not negatively impacted at all from the endometriosis. My reproductive organs were all completely normal, with the exception of my left Fallopian tube which was constricted and had to have a stent placed in it to open it up. Apparently, this was not related to the endo—it could have been from a previous infection. My doctor told my husband it typically takes one to three menstrual cycles for the pain to resolve. I was so happy from hearing this news, but I didn’t cry because I was still coming off of the anesthesia and pain medications at that point.
Also, everything made so much more sense given that during my monthly cycles, most of my worst pain was on my left side! I also would have monthly pain in my left knee, left parts of my back, and even the left side of my jaw.
I was up walking around the same day after surgery. I had a small incision under my belly button, a pinhole below that, and about an inch long incision above my pubic area. I even went to watch my nephew’s soccer practice that same evening! I just felt like I did a million sit-ups, and the pain was moderate for a few days after surgery; it felt more like being sore after an intense workout. I was actually back to my powerlifting training and light cardio one and one half weeks after surgery!
Ten days after surgery, I had my first menstrual cycle. I did not have the typical extreme premenstrual pain at all. I did have one day of pretty bad pain near the end of my cycle that completely resolved the day after.
My second cycle was last week (about seven weeks after surgery) and I just had mild to moderate cramping that I would not consider to be painful—just uncomfortable and easily managed. My other symptoms like severe menstrual migraine and mood swings were also significantly decreased.
That evening after my surgery, I’d broke down in tears of joy to my husband because I not only finally had an official diagnosis, but also because I’d learned that my fertility was not impacted. I fully came to the realization that I wasn’t crazy or making this pain up, a feeling I’d been made to feel for the past few years. My persistence in pushing for answers on my own when I was brushed off for years finally paid off. I began researching and educating myself on this disease and reaching out to other women I knew who had struggled with this disease. I wanted to share my story to help other women who were in my situation to demand answers and find healthcare professionals who will truly listen to your pain and help you find solutions.
Kelly Jones is a clinical pharmacist currently employed by OptumRX. She graduated Cum Laude from Duquesne University Mylan School of Pharmacy in 2011. She enjoys spending time with her wonderful husband Don, pitbull Bullet, pitbull/German Shepherd mix Luna, and cats Jinxy and Pixie. Kelly also loves spending time with her family and friends. She also enjoys olympic and powerlifting training (hoping to start competing!), fitness, half marathons, Pittsburgh sports, shopping, music, and concerts. She also loves to travel with her husband and experience different types of food, cigars, wine, and craft beer.
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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.