End of the Line for My Journey to Endometriosis
It’s three days before Christmas when I pull into the uneven, sloping parking lot at work. The sky is cloudy and waiting to drop freezing rain on what’s supposed to be the most wonderful time of the year, but my racing heart and wandering thoughts were not a result of the Christmas spirit. I tried my best to reign in my emotions as I walked into work.
Two minutes before as I sped down I-75, my phone rang with an unknown number on the screen. I answered it in case it was the call I’d been waiting two days for…it was.
My gynecologist’s nurse, who I had emailed two days before, picked up when I answered. This might be dramatic, but it was one of those moments where it felt like my heart stopped as I waited for her to tell me what my doctor said. She goes over what they decided in regards to my email about being in pain for the past three weeks, despite being on the birth control pills he prescribed. Their suggestion was to go ahead with laparoscopic surgery to look for signs of endometriosis.
Endometriosis. What is it? It’s when tissue or cells similar to the endometrium tissue that lines the uterus is found outside of the uterus. It can be found in so many places in the body - including the lower back, which is where mine is believed to accumulate. It’s not life-threatening, but the pain can be very debilitating and can diminish quality of life for many women.
kaldascenter.com
This post is going to be very different and extremely personal, but I wanted to share this with you all. It involves my continuous journey to find a diagnosis for the chronic pain I’ve dealt with for nearly 11 years. This is something I’ve been wanting to talk about since starting this site, but it never really felt like the right time until now. For one, it requires a vulnerability I’m not used to and a huge amount of emotional fortitude. Second, I wanted to be closer to getting a diagnosis before sharing so that I could be as accurate as possible.
Since about the age of 14 I’ve had chronic and excruciating pain in my lower back and pelvic area that occasionally leaves me bedridden and without the ability to walk. What started out as a subtle and burning ache slowly turned into an intense stabbing pain.
After living with this pain for so many years and no answers, I finally decided to take things into my own hands and figure out what it was. I researched hundreds of conditions and illnesses everyday for about 3 months, and I kept coming back to endometriosis. It wasn’t until Feb. 1, 2022, when my cycle came on and I woke up in excruciating pain that I had my confirmation that it was most likely endometriosis. Next step was to get a doctor to believe me and confirm a diagnosis.
“The only way to obtain biopsy-proven confirmation is through surgical pathology: this typically means via the minimally invasive procedure known as Laporoscopy.”
What happened next is still unbelievable. I had already scheduled an appointment with a gynecologist in Atlanta two months in advance, and on the way there I nearly totaled my car when a tire came tumbling out of nowhere right into my car. To be honest, I probably would’ve dodged the tire easier if I hadn’t been driving in pain. So I had to miss my appointment and schedule one with a doctor in my hometown. On the very first visit, he confirmed my thoughts immediately that it was probably endometriosis. However, the only way to officially diagnose endometriosis is through laparoscopic surgery.
Living with this condition has been difficult and the hardship is multiplied when you throw in hypothyroidism and POTS (postural orthostatic tachycardia syndrome). I initially found out my thyroid was underactive in that first visit to the gynecologist to talk about endometriosis. The hypothyroidism was an unexpected curveball for me. However, the POTS is not new. It is also something I’ve struggled with for over a decade. It was triggered this year by a viral infection. That was also another unexpected curveball.
“The U.S. Endometriosis Association reports that people diagnosed with endometriosis are six times more likely to have an under-active thyroid.”
Making various doctor’s appointments, keeping track of new medications, documenting symptoms, and trying to live a normal life at the same time sometimes makes me feel like a juggler about to lose control of all the balls. There are cures and simple treatments for thyroid disease and POTS, but endometriosis has no cure and the treatments don’t always work. That makes it the hardest condition to manage and juggle.
Trying birth control to treat it for the past 10 months has not worked. Before Christmas I contacted my doctor to let him know the birth control treatment had not been working. That’s how we ended up here waiting to hear back from the insurance and the doctor to know the cost of the surgery and schedule a date. It’s looking like the surgery may happen at the end of January or sometime in February.
I’m praying no more pandemics or run away tires get in the way of me finally getting the confirmation and treatment needed. It’s been a long 10 years with this condition, but I feel like I can see the light at the end of the tunnel. Sort of. As I mentioned before, there is no cure for endometriosis. However, it will be a relief to finally have an answer as to what’s going on inside my body.
If you’re reading this and you also live with endometriosis, don’t be afraid to reach out and say hi! If you’re just part of the chronic illness club I welcome you too, as I know many of you have felt the same emotions, frustrations, and challenges that I have. My hope is that others reading this might feel that someone else understands what they go through and know they are not alone. Support was not something that I had growing up with my pain, so please share because the Endo awareness needs a boost right now!
There will be more updates as the journey continues so stay tuned to find out more!
Sources
Know Your Endo: An Empowering Guide to Health and Hope with Endometriosis, Jessica Murnane, April 27, 2021. Amazon link to book
