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Tag Archives: misdiagnosed

I Don’t Believe in That Disease

 

 

 

 

 

 

 

 

 

I used to think having to be retested for a disease whenever a new physician didn’t believe that I had it was frustrating.  I can’t tell you how many times I was told by a new doctor that they didn’t believe my diagnosis of psoriatic arthritis from another physician.  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.

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.  During one visit 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, it had 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 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 his 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 even 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.  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, there was 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……..

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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 other 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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Sentenced to Death: When a New Pain is Dismissed Because of Your Chronic Illness

Sentenced to Death:

When a New Pain is Dismissed Because of Your Chronic Illness

By: Cynthia

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I’ve lost count of the number of times a new health issue has been dismissed by medical professionals.  They have blamed my chronic illnesses, weight, depression, and any alternative treatment that wasn’t their idea or prescribed by them.  Today I am going to share a few examples of how the healthcare system has failed me time and again what needs to be done.  Not every new health issue was life threatening, but there was still a death.  In all these examples a portion of my life was murdered because of the time I had to spend seeking answers and help.

  1. Pain and immobility in my right knee.  For eight years doctors blamed my weight and lack of exercise. Final diagnosis? Loose cartilage and bone fragments that were getting caught in the joint.  Surgery was needed to fix it. No amount of weight loss or exercise would have made a difference.
  2. Botched hysterectomy.  For TWO years, the pain that I was experiencing from what would later be revealed as gross negligence by the surgeon who performed my hysterectomy was blamed on depression, lack of exercise, weight, and fibromyalgia.  Not only did I lose two years of my life, I also drained my bank account having to go from one surgeon to the next, a total of 21.
  3. Adhesions strangling my bowels.  Last year I spent NINE months getting nowhere with my physicians who all wanted to diagnose me with gastrointestinal issues but couldn’t because each test came back negative.  Refusing to perform surgery their only answer was to give me morphine, which I refused.  No drug was going to solve my problem.  When I asked to them about ultrasound therapy, I was told that it wasn’t a known therapy within my healthcare provider’s plan and that they wouldn’t be looking into it.  Thankfully in March a chronic pain buddy shared how using PEMF therapy with Oska Pulse had helped her recover from her latest endometriosis surgery.  I decided to perform an experiment to see if it would help release my adhesions.  Praise God it worked!  Soon after I began using it daily my bowels were released, I no longer suffered from bouts of adhesions ripping from my sidewall or internal organs, and gone were all of my GI issues.  I have no idea how much longer my internal organs could have sustained the torture and damage that was taking place, and thanks to my Oska Pulse I didn’t have to find out.  Fast forward to Aug. 22nd 2017 when I shared how PEMF therapy resolved my issues from last year with my physician.  Doctor’s response?  “Oh that is nice”!!!!  Seriously, she addressed me like I was a toddler showing off the macaroni necklace I made in preschool.
  4. GI issues.  Last year while dealing with example number 3, my symptoms included many gastrointestinal problems like nausea and diarrhea.  Most doctors blamed my diet, some suggested I needed a psychiatrist, and one blamed medical marijuana.  Again, ALL were WRONG!! As you read in example number 3, they were all symptoms of having my bowels strangled by abdominal adhesions.
  5. Abdominal muscle ripping and swelling.  Currently my doctors have decided to fixate on a mole that ripped.  It is not the problem, it was the result of the swelling and ripping of an abdominal muscle.   This new pain, which is nothing like having adhesions ripped from my sidewall or internal organs, and struck like lightening on the morning of Aug. 2, 2017.  Instead of ordering anything beyond the removal of the mole, which the dermatologist deemed fine, nothing is being done to figure out what damage has been done or is going on.  Instead I have been told to wait and see where my pain level is in a few weeks and to come back if it gets worse.  Seriously?  How much worst does it need to get?!!

 

My question is this:  HOW MUCH WORSE DOES IT HAVE TO GET!!!!!??????!!!!!!!

Seriously??!!! Do I need to be on the verge of death?  That’s exactly what happened to someone I love dearly.  Her complaints of abdominal pain were dismissed as chronic pain at every ER and doctor visit.  The true nature of her problem wasn’t discovered or addressed until it came dangerously close to killing her.

THIS IS NOT HEALTHCARE!

IT IS A DEATH SENTENCE!

I have lost faith in the medical community.  It doesn’t even matter if they would be able to treat my current condition or not, they aren’t even willing to figure out what’s wrong with me and so many others.  I am once again forced to self treat myself and seek alternative therapies, but this time is different because I am not sure what the issue is.  If at the very least they could provide me with a diagnosis, I could use that information in my research.

Doctors take an oath to do no harm, yet that is exactly what they are doing to me and others who suffer from a chronic illness, depression, or happen to be overweight.  It is heartbreaking to think that the people we are supposed to trust to heal or care for us are the ones doing the most damage.

Will my new pain kill me?  I have no idea.  How can I when I don’t really know what is wrong? All I can do is guess…..  One thing it has killed is the life I worked so hard to achieve, one in which I was using my wheelchair less and less and had hope of someday not having to use it at all.  Until the source of pain is found and addressed I must make adjustments to how I live. I have to figure out what if any physical movements can be done without increasing my pain or causing more damage to that muscle.  How much pain can I handle, how far can I walk, sit, or stand for again?  How much longer is it going to take me to recover from outings?  Rest assured, this is the only aspect of my life that will be changing.  I still plan on traveling and whooping it up at Disneyland, no amount of pain is going to keep me from living passionately or purposefully!!!!

In the meantime I am have begun treating it with Oska Pulse.  Will it help?  I don’t know, but I am definitely putting it to the test!  Be sure to subscribe to my newsletter to receive updates on my progress.  Whether it helps with this issue or not really doesn’t matter.  What does is the improvements I have experienced in relation to psoriatic arthritis, fibromyalgia, and endometriosis.   Click here to read about those improvements.  I can’t imagine going through this if I was constantly flaring from my other conditions too.

So what needs to be done?

Doctors need to LISTEN, LOOK, AND KEEP LOOKING!!!

Doctors need to STOP GIVING UP

Doctors need to STOP WAITING FOR SIGNS OF DEATH

Doctors need to THROW THEIR PROTOCOLS OUT THE WINDOW! They need to be anatomy detectives!  I am not saying that I expect them to be able to cure every condition or disease, but for crying out loud it shouldn’t be too much to expect them to find the source!!!!

I want to hear from you!

Have you had a pain or condition ignored or dismissed because of a chronic illness, depression, or weight?  How much time from your life did you lose?  How much money was wasted on useless tests to rule out unrelated problems or as each doctor passed you off onto another who was just as unwilling to help?  Did you ever get the help and care you needed?  If so, was if from a medical professional or did you have to take matters into your own hands? I want to hear from you!  Share your experience in the comments or click here to share as a guest Diva at The Disabled DIVAS.

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