Being retested for a disease whenever a new physician didn’t believe my diagnosis of fibromyalgia or psoriatic arthritis was frustrating.
Each time they wasted my money and time by reordering all the same tests, that wow, surprise, had the same results. Thankfully, they would accept their own results and move on.
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The F word!
My diagnosis of fibromyalgia has been more problematic. In fact, it almost cost me my life.
Soon after receiving my diagnosis of fibromyalgia, I began having abdominal pain. I began seeing my gynecologist way more than I ever did while pregnant with my daughter.
When I mentioned my diagnosis of fibromyalgia and he said, and I quote “That’s not a real disease.”
Believe it or not, his thinking that fibromyalgia wasn’t a real illness actually helped me for the first two years. Because he didn’t believe in it, he pushed my insurance provider to approve an exploratory surgery when all tests came back showing nothing wrong.
That surgery revealed that I had endometriosis and an extremely large ovarian cyst. The cyst and adhesions had pulled my bladder, uterus, and left ovary towards my sidewall. In addition, they not only pulled my left fallopian tube towards the sidewall, but it had also adhered and embedded itself into it!
The pain and symptoms returned within a year. Thankfully he still didn’t believe in my chronic illness and agreed to perform a hysterectomy. That surgery revealed a belly full of adhesions and a bunch of ovarian cysts.
In addition to what was found in the prior surgery, adhesions were also pulling my rectum towards my sidewall. So far so good, right?! In fact, you may be wondering how this led to me almost losing my life. Less than six months later, the pain on my left side returned and……..
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I was horrified when the pain returned. My OBGYN had removed my uterus, ovaries, and fallopian tubes. I had also had an appendectomy prior to the hysterectomy. There wasn’t anything left that could be causing the pain that I was experiencing.
I returned to my gynecologist who after hearing about my pain, decided to blame my pain on fibromyalgia!
The very disease he adamantly denied the existence of became an easy way for him to get rid of a complicated patient.
Over the course of two years, I went from one surgeon to another. Not one would consider that I could still be experiencing problems from endometriosis or that it was possible that something went wrong with my hysterectomy.
One after the other opened my chart, without running any tests or performing any type of examination, and blamed fibromyalgia.
You may be thinking, wait a minute, those doctors believed that you had fibromyalgia! I will never know whether they really believed that I had it or not, but I do know that they knew very little, if anything, about the disease.
When I would explain that had never been one of my fibromyalgia symptoms, they would just say that they heard it was a symptom of it.
If they didn’t blame fibromyalgia, they told me that it was all in my head and that they would happily refer me to a psychiatrist. Then they would close my file and leave the room…….
Two years, twenty surgeons, not one was willing to help me. Each and everyone blamed an illness they knew little to nothing about and had denied until it became an easy scapegoat.
These men made me doubt my sanity, made everyone except for my husband and children think that I had lost my mind.
Friends and family believed that I was depressed, addicted to opioids (why else would someone go to the emergency room as much as I did), or that I wanted surgery for attention.
The funny thing about the last thing is that all those who didn’t believe me never helped out during the prior surgeries. In the meantime my pain increased, I became weaker and sicker.
Long story short, surgeon number twenty-one finally believed me and agreed to perform surgery. What he found shocked me, the attending nurses, and the surgeon himself.
I had adhesions everywhere. He had to scrape from my cervix up to my diaphragm. He also found that a large portion of my left fallopian tube had been left behind during the hysterectomy. It was infected, covered in endometriosis, and was embedded into my sidewall. Not only was it embedded into my sidewall, but there was also evidence of how it had adhered and embedded to other areas of the sidewall and was pulled out by adhesions.
If that wasn’t enough, my bowels were being strangled by adhesions. But according to my original surgeon and 20 more, it was either fibromyalgia or in my head……..
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My saga doesn’t end here. But the point of this post isn’t to share the entire story, but to demonstrate how if any of those surgeons had believed in or had any knowledge about fibromyalgia, I wouldn’t have had to suffer the way I did.
I have always despised my diagnosis of fibromyalgia and will continue to until doctors choose to learn more about it. The ignorance of 22 surgeons almost cost me my life. As the surgeon who found the mess informed me, having my bowels strangled like they were would have killed me.
It doesn’t matter if a physician believes in fibromyalgia if they are not educated in it.
Have you ever been told that your disease isn’t real by a doctor?
Have serious unrelated symptoms/illnesses been overlooked because of your diagnosis of fibromyalgia or another disease?
The damage I suffered continues to haunt me and put my life at risk. Don’t let the ignorance of one or twenty-one doctors put your life in danger. Had I given up, I wouldn’t be here to share my story with you today.
2 thoughts on “I Don’t Believe in That Disease”
I’m so sorry this all happened to you. It happens to so many of us and creates real life threatening situations and PTSD that can get so bad it’s impossible to go to a new doctor or visit an ER. It’s unconscionable and I’m so glad you kept pushing for answers. We all deserve to be treated with kindness and dignity and have our medical concerns addressed.
Thank you. The PTSD that has stemmed from this is awful.