It all started back in July 2018, out of nowhere I had a sudden onset of symptoms that happened at my workplace, a commercial printer that offered direct marketing services. The work environment often had strong fumes of inks, toners, cleaners, and more in the air. This is what led to my first doctor thinking I developed a work allergy, which may have been triggering a vasovagal #Syncope reaction, and she recommended finding a new workplace. As a precaution, I took time off from work to see if my symptoms subsided being away from the workplace.
They didn't, and unfortunately, they got worse. Much worse.
My lower abdominal pain hit me full force, and I could only find slight relief by using heat methods, such as a heating pad, a hot bath, shower or my incredible microwavable flax bag my boyfriend's mother made me and has been a godsend gift. My bowel movements were all over the place and painful at times, which no one wants to hear about or enjoys talking about. I felt so sick and nauseous that I struggled to eat, my stomach would bloat so much it would hurt and after eating my abdominal pain would get even worse. It was a terrible experience, and this doesn't also include the ongoing headaches, sore neck, after driving I would feel even sicker and almost dizzy, lower #BackPain that made it hard to sleep, and sudden fatigue episodes that would hit me like a brick and literally have me struggling to keep my eyes open for an hour or more.
As we started doing tests and lab work, everything was coming back normal. Now people think that’s great, but when you physically feel so bad inside, it is devastating to get this news after each new hopeful test or scan or blood draw. I did it all – an upper GI Scope, my first colonoscopy, an abdomen/pelvic ultrasound, an MRI of my brain, a CT Scan of my abdomen and pelvic area and more.
Around early September, it was time to change doctors. The one I currently had wasn't being proactive enough for me and didn't seem to think there was anything wrong with me because my test results were always normal, minus a Vitamin D deficiency we caught, and at this point I lost about 30 pounds without trying and all my pain and symptoms weren't decreasing at all. Around October, I was doing super bad, and in a weird way, I felt like my body was failing and shutting down. I had no energy, I could hardly eat so I tried to push fluids, and even struggled trying to cook dinner or do simple tasks like unloading our delivered groceries.
When I changed doctors, I went to a recommended Nurse Practitioner, and I cannot even begin to tell you how much that changed things for me. She listened to me, she believed me, she questioned why I had blood in my urine consistently from July but had no signs of a UTI, and that's what ultimately led to a breakthrough. She wanted to re-do a pelvic exam, even though I just had one back in April 2018 and everything was normal.
That pelvic exam was the most excruciating and intense pain I have ever felt.
In an instant, I was in tears, breathing heavy, and even swearing like a sailor on the exam table. My N.P. did her best to do her thing and get cultures, but I know I did not make it easy – my cervix was severely inflamed and bleeding. She immediately put me on antibiotics and recommended referring me to a gyno as this may very well be a clue to all my symptoms and because she was very concerned with a spot on my cervix she saw.
Thankfully, I listened to my mother who urged me to set-up an appointment with a gyno at once, rather than being stuck waiting for a referral. My first consult with my gyno went incredibly well, he listened to me, asked questions and did a quick exam. From there, he suggested I had #Endometriosis and that honestly took me by surprise because I did not realize the full scope or range of symptoms that endometriosis could cause since I was taught endometriosis was just having really bad and painful periods.
After learning my options, I decided to set up a laparoscopy surgery because I wanted answers – definite answers - and with endometriosis, surgery is the only way to get them. The day finally came, December 26, 2018, I was so nervous because I have never had surgery before, not even a broken bone before.
When I finally came to after the surgery, I wanted to know if he saw any endo – and my family said no. I was heartbroken. He did take a cervix tissue biopsy, along with another tissue sample. Waiting for those results was awful. It also took me longer than I anticipated to bounce back from my surgery and then I had to wait – knowing my doctor had my results, but I had to wait for the call.
Finally, on January 7, 2019, I got a call from their office’s lab results line. My cervix biopsy was fine – whew, what a damn relief! The other biopsy though confirmed endometriosis – wait, what? Did I hear that right? I thought he didn’t see anything? I confirm what she said, and she agreed, the biopsy confirmed and showed endometriosis.
I hung up the phone and cried. And I mean, ugly cried!
A part of me was so relieved to finally have an answer and knowing I can start a treatment plan and try to manage this problem that had cost me so much for the past seven months, such as: my inner peace, my sense of being, my worth, my job, my independence, my social life, my limited visits with family and friends because I wasn't feeling good enough to visit, and more.
And another part of me was sad; it wasn’t going to go away, the debilitating pain could return, there could be a risk of #Infertility or difficulty conceiving. I would likely need to make life adjustments and deal with all the emotions of having a #ChronicIllness, which is hard. The sense of relief I felt was unlike anything I've ever felt though. I had an answer, we found the culprit and what was going on with my body and that is an incredible and empowering feeling. A feeling I hope everyone can experience.
So, to all of you, my #Undiagnosed warriors, keep fighting!
Stand your ground, don't let people get to you when they think it's all in your head because tests cannot find anything, you know your body better than anyone, and we are constantly learning about new diagnoses. I know it's hard, I know you're going to get #Anxiety and maybe depressed, I know you're going to want to burst into tears when you hear your test/labs/scan came back normal, but you're not alone. I believe you, and you need to hang on to that to keep fighting and trying to get answers.
Let me say that again – you are not alone, and I believe you.
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