Am I a Hypochondriac?
Throughout my life, most of my discomfort and pain could easily be explained away. Teething turns into growing pains, growing pains get tangled with surges of hormones, which are eventually followed by the start of the first of many years of menstrual cramps.
Am I just unlucky or being punished?
By the time I was 14, I felt like I really had to be the most unlucky person to exist or God was punishing me. Each year, I felt worse and each year I was also told I was being over-dramatic. By my senior year of high school, I was known to be a very sickly person but my family still refused to believe any of it. I missed at least one day each month of school because of my period. I would get lightheaded, have a hard time moving around, get really pale in the face, and sometimes blackout! I lost my gallbladder that year, too. I begged my mom to take me to the hospital and when she finally did, I was set up for surgery a week later because it was failing.
I was in pain every day
Two years after that, I constantly felt like I was coming down with something and complained of some sort of pain every day. At that point in my life, I had spent 20 years of my life being told I was a crybaby and that what I experienced was normal so I brushed it off. My periods were only becoming worse though and I started needing to seek out help. Whenever I would cramp, I would have to drop into a squat and wait for the pain to pass. It felt like nothing ever took the edge off. Doctors suggested birth control. I spent that year and part of the year after trying 2 different forms of it. Neither helped and both only gave me more issues. My body reacted horribly to them.
I've asked... and asked... and asked for help
Then in 2019, I tried again for help. I went to the ER sobbing because I started bleeding heavily for the 3rd time that month. Could I possibly have 3 periods??? What’s going on?? There I was dismissed, made fun of, and talked down to. Was there anything actually wrong with me? Was I creating my own problems? I saw a gynecologist for the first time after that. That’s when I first heard, “endometriosis”. I went home and googled a lot about it. While the multiple “periods” a month continued, I continued to see gynos almost monthly! Sometimes a couple of times a month! The same advice was given, “why don’t you try an IUD? It will only be localized hormones and could stop your bleeding completely.” It didn’t answer the burning question of what was wrong and I didn’t know if I should accept a solution to one symptom or not. I got a second opinion instead. From there, I was offered surgery by that general gyno or “a pill that can cause temporary menopause”.
I found help in an endometriosis support group
I decided to join an endometriosis support group on Facebook to do some research. What I found really surprised me! So many people hurt and dismissed by doctors daily. Continually misunderstood or just completely ignored. It seemed like the “cure-all” was birth control or medically induced menopause. Ridiculous! But there was also hope. “Surgery?! Why surgery??”
I found through other women’s experiences and testimonies that something called “excision surgery” was the holy grail of treatment and diagnosis currently. I also found so many symptoms so relatable to what I was going through. Too many symptoms to be just a coincidence. BUT WAIT! Could I possibly be making up all these symptoms in my head?? Could I just be wanting attention? Could this all be from me wanting there to be something wrong? What if I did get surgery and there was nothing? Would it be something else or just confirmed to be all my imagination? These questions swarmed my mind like an angry storm of wasps!
I finally felt heard
My husband speaking ease and peace of mind to me, “you don’t make up your pain. You don’t fake your bleeding. You can’t even walk sometimes. It’s worth looking into.” I finally got up the courage to look into a support group for endometriosis specific to the state I live in to find a surgeon. Someone who was an endometriosis specialist who practiced excision for removal. I landed upon one only 2 hours away! After a lot of prayer and talking with my husband, we decided it was worth trying. From there, I met with the specialist’s nurse, discussed my problems, and began to set a surgery date. I finally felt listened to. I finally felt believed!
I finally, after all this time, got answers...and was believed
March of 2021, under the care of a very skilled surgeon and her team, I had both scar tissue and endometriosis removed from my body. I was diagnosed with Stage 1 endometriosis and Interstitial Cystitis. She carefully spent time explaining it to my husband along with photographs taken during the surgery then repeated it all back to me once I woke up in post-op. It was so alleviating to hear I wasn’t making it up! It was something to almost celebrate! Finally, I had an answer to my pain and constant battle! But wait, there also isn’t a cure or true treatment yet. It’s a chronic illness. I’ll have it for life. This will always be my life now. I know it’s not all in my head now and I was never making it up, but what do I do now? All this hard work and all this battling for what? What will my life look like now? Will it even be any different?
Having an answer has helped me cope with symptoms
Thankfully, I am now about a week or so shy of 1 year since my diagnosis and surgery. My overall symptoms have been much easy to cope with compared to prior to my diagnosis. I now have a straight answer about what’s going on inside of my body and have been learning of ways that I can aid in reducing my symptoms. It’s so bittersweet being diagnosed. I have found hope for the future by advocating for endometriosis awareness and look forward to participating in future studies for treatments.
Why I speak up and advocate now
I find that dedicating a part of myself to speaking up and speaking out about my experiences can have an impact not only on how I live but how others do as well. Education and awareness are huge components when it comes to invisible and chronic illnesses. No one should have to suffer like I did just to find answers. I’m trying to do my part to prevent that from happening to future generations. It’s not all in your head. Only you know your body and what you feel. You are in charge of your own body. Take charge in caring for it! Speak up for yourself and demand to be heard! Advocating for yourself is the bravest and best thing you can do for your health.
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