When I was in my late teens into my early 20s, I faced a journey unbeknownst to me that 1 in 10 women will and have faced. That statistic is only growing and increasing. I faced a plague of cramping—severe leg and abdominal pains that would sporadically show up and shoot across my limbs. It started like this and then went away every so often throughout the years only for me to be hit by what felt like a severe invisible illness.
In 2018, when I was 25, my world turned upside down. I had these severe aches and pains in my lower abdomen that would come on and in a matter of an hour, I would be fleeing my marketing agency office on my lunch break to visit the nearest hospital in Mount Pleasant, only to find out I had a severe UTI that had now struck my kidneys. This continued into my 25th year without any further insight from the medical team I had been seeing. I hopped across Charleston to see various doctors to learn what was happening and understand why these monthly UTIs were coming on.
It was when I left a doctor’s appointment at MUSC, where I was told by a PA that “I drink too much water,” that my family and I had enough. We had known me to be a solid water drinker and a mostly healthy eater, so this just fueled the fire inside me to find out the cause of my misery. I remember looking over at my boyfriend (now husband, Zach) and telling him I feel like I am dying and have something seriously wrong inside of me going on. He just reassured me that we would seek the proper help and keep pushing for answers.
There are an array of various cruel events in life that occur to some of us and not being able to figure out what is wrong with you is at the very top. To be so ill, feeling like a burden, confused and perplexed about symptoms, missing out on events with friends because I must be whisked away to the ER, is something I would never wish on anyone. I remember vividly an occasion when I was at Saltwater Cowboys on Shem Creek with girlfriends and Zach and I had one drink and immediately knew I had to leave.
My kidneys were suddenly killing me and that UTI feeling began and increased within half an hour. We got in the car and Zach drove me to the ER in Mount Pleasant. To say this wasn’t one of the most difficult chapters of my life would be a lie. It also served as a reminder of who stood by my side, understood who I am and that me leaving an event or cancelling to rush myself to the ER was never in my wildest dreams something I wanted to do.
Among the agony of IVs, painkillers and the physical pain, my soul felt sad. I missed being social, running around town like every other 25-year-old, enjoying the small things in life and trying to keep my career afloat.
I visited a handful of doctors, but it was my fifth doctor who would be my saving grace. He was a real testament to the definition of diagnosing patients, an honest doctor who was questioning the possibilities, listening and actively asking questions to further understand why I was such a unicorn in a sea of zebras. I had recently just completed a few weeks of check-ins and a few vaginal ultrasounds. Nothing showed abnormal on the ultrasounds. My ovaries were great, fallopian tubes were clear and good and my pelvic region didn’t suffer any present signs of nasty tissue.
Thus, at last, my mother spoke up after she had been digging for the past few years to find answers on simple Google searches. She landed on the term “endometriosis” and asked my doctor, ‘Could it be this?’ She informed us that is could, but that we would have to do a laparoscopic procedure to see if endometriosis was present. Sure enough, it was! My pelvis was, in her own words, “studded with it,” and it was embedded into my pelvic wall. I heard the words “chronic illness” for the very first time; I will never forget realizing that I was that 1 in 10 being diagnosed. I’m a believer though, and where God gives pain, he also gives purpose.
While this journey is never over as endometriosis has no cure, there are treatments and options including lifestyle changes to help maintain it. A handy heating pad, trusted endometriosis surgeon and a solid support system who respects your lifestyle changes and journey is key to getting through this first part of diagnosis. Endometriosis has not been heavily researched, funded or even respected in the medical community, and it is one that has many (including me) to fight to change the narrative. There is no cure.
In past decades, a hysterectomy has been said to cure endometriosis. However, recent history has shown this to be incorrect. Also, as technology advances, we can progress and provide better patient outcomes and provide honest reporting and data collecting to see the patterns over decades.
Pain can subside post-surgery and it is recommended to find a trusted endo-certified surgeon to do a lap then excision surgery to remove the tissue as much as possible. Endo also can fuse organs together—I think of it as a “sticky tissue” where it can travel throughout your body and stick to other organs. It has been found on every organ including the bladder, brain, lungs and, more recently, the eyes (ocular endo).
Endometriosis is a full body condition with tissue that is similar to the inner lining of the uterus that grows outside of the uterus. It can affect vision, energy and memory, and can cause consistent pain across the body, food intolerances or “triggers” as we call them, and diseases and disorders including lupus and PCOS.
It is not quite known yet why endometriosis occurs in some women and not others. Regardless of income, status and zip code, endometriosis has and can affect anyone with a uterus. Doing yoga or eating cleanly will not cure it but will certainly help you manage the bloating, pain and fatigue that comes with it.
If you are dealing with unique and confusing health issues and your story sounds similar to mine, you are not alone, and my heart goes out to you. Please listen to your body and fight for answers. We have lost many in our endo community through mental struggles with this physical pain and to the condition itself. Endo complicates your total body day to day and thus can result in death. Several years ago we actually lost the very founder of our Facebook global endo group to complications from endometriosis. This is a very serious invisible illness and one that needs to be discussed more. Awareness can save lives and fertility!
For those who have endo, I am honestly proud to say I am part of an unfortunate group of wonderful people fighting for answers, better patient treatment and outcomes and to bring knowledge (because it is power) and funding for a cure. #EndoWarriors
To learn more, please reach out to me at [email protected] to keep the conversation going and hear about what I did next to help my body, suggested by doctors in Charleston and across this country who specialize in endo and help us fight this fight against chronic illness.
By Jeanne Everett Giroux
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