Tag Archives: surgical errors

Why I fear doctors, hospitals, and test results

Why I fear doctors, hospitals, and test results

 

 

 

 

 

 

 

 

Why I fear doctors, hospitals, and test results

Since my first chronic illness diagnosis in 2001, my life, that is my chronic life, has been nothing short of a nightmare.

I know my body well.  In fact I know better than any test or doctor.  Not to sound conceited, but not one test or scan has ever shown the destruction that has been taking place in my abdomen since 2003.  NOT ONE!! However, my theories have been validated in surgery and each surgery was proved necessary.

Before you suggest that my fears aren’t warranted, I need for you to understand something…… I do not have White Coat Syndrome, where patients experience a higher blood pressure reading when at the doctor’s office, it goes way beyond that.  My fears and phobias stem from incompetent care.  Not from just one doctor or surgeon, I am talking double digits!!!

In case that is not enough of an explanation, here is a list of some of the reasons I fear doctors, hospitals, and test results……

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Fighting the white coats

countdown 11 white coats.png

I feel like I have been at war with white coats (doctors) for my entire adult life. Some of the battles were minor in comparison to the ones that put my life at risk, but nonetheless, each and every one of them drained me both physically and emotionally. Oh let’s not forget about how they drained my bank account. Second, third, and twenty first opinions aren’t free! Neither are the repeat testing that the new doc orders just because he doesn’t want to accept or look at the results from the prior tests.

My first battle lasted 8 long years. I had loose cartilage in my knee that would jam into the joint. When this happened, I couldn’t put pressure on it. Yet with each ER and doctor visit I was told to rest until the pain went away, then to exercise and lose 10lbs!!!! Knowing that I would be told to stay off it until the pain subsided each time, I ended buying my own crutches. It was easier and less expensive than having to continue renting them from the pharmacy. Finally after falling down a flight of stairs a doctor took my complaint seriously and it was later fixed with surgery.

book cover web

My luck appeared to change soon after my knee surgery. When I went to my OBGYN with complaints of severe pain with every other cycle, he quickly scheduled an exploratory surgery when tests weren’t conclusive. And thank God he did, because I had a massive cyst that had adhered not only to my left ovary, but also to my fallopian tube, uterus, and bladder. To top it off it was also adhered to my sidewall and was pulling all of those organs to it as well. In fact my fallopian tube and uterus also had to be released from the sidewall. A year later a visit to the ER while on vacation resulted in an emergency appendectomy and later when the pain I had prior to the exploratory surgery returned my OBGYN scheduled a hysterectomy.

At this point I fell into a false sense of security. I truly believed that doctors listened and would do whatever possible to help their patients. That was until the pain that triggered the exploratory surgery returned after my hysterectomy. From that point I was told that it was all in my head. One doctor who prior to my hysterectomy told me that he didn’t believe that fibromyalgia was a real disease, later blamed my pain on it. Throughout a two year period I saw 21 doctors before finding one who would take my pain seriously. The others either blamed my chronic illnesses or told me that they would be happy to refer me to a psychologist.

To be honest, I did reach a point where I began believing that maybe I was losing my mind. If it hadn’t been for the mess that was finally revealed in surgery, I probably would have had lost it. Later I would continue to battle adhesions. They became an ongoing problem even after all the endometriosis was removed. Little did I know that this battle would later give me the strength to once again fight for my life.

Surgical scarring continued the spread. They would adhere to my organs and abdominal lining. Then they would rip from them and create more scar tissue. Until 2 years ago I believed and was told by my doctors that the only way to deal with them was thru surgery. But because I had had so many abdominal surgeries (8 by the last time they were strangling my bowels) I couldn’t find a surgeon willing to perform my 9th abdominal surgery.

At the time I felt as though I had been issued my death sentence. They gave no other options other than being offered the equivalent of end of life pain care. Not ready to give up, I continued my quest to find a solution. When I heard that ultrasound therapy had been known to break up adhesions, I quickly asked my physicians if we could give it a try. But my HMO quickly denied it, saying it wasn’t a common practice within their network and they would not pursue or cover it.

*Disclosure: I am not a medical professional and am not issuing medical advice.This post includes affiliate links. Meaning that at no additional cost to you, I receive a commission when you make a purchase through my links. The proceeds earned fund the giveaways I host in The Disabled Diva’s Fitness Buddies and Disneyability Group on Facebook.

 

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Thankfully I soon discovered pemf therapy. By running treatments on my abdomen, I was able to relieve the pain that my doctors swore nothing could be done for! Within days my pain went from excruciating to mild. Within weeks it was completely gone!

I wouldn’t be here today had I not fought the white coats. I would be dead or unable to function from severe abdominal pain had I believed them when they said nothing more could be done.

The white coats have failed me. Seeing how many people aren’t able to achieve a decent level of pain relief, I’d say they’re failing them too.

I don’t gush about pemf therapy because I’m an affiliate with Oska Wellness. I can’t stop talking about it because it literally saved my life. I’m an affiliate with them because I’m able pass on a savings of $55 when my promo code DIVA is entered at checkout.

It’s a good thing that I’m stubborn. Otherwise I wouldn’t be here to celebrate my 50th birthday. Learn from my experience! Never give up and don’t be afraid to look outside or in my case inside the box!

Countdown Days 10, 9, 8

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My Abominable Abdominal Adhesions

adhesionsAbdominal adhesions began wreaking havoc in my life back in 2004 after having surgery to remove a giant cyst.  Some, myself included wanted to blame the type of surgery performed for the adhesions, being that prior to having laparoscopic I had two C-sections without developing adhesions.  But in my case it wasn’t the type of surgery, it was what was found.  Even after two abdominal surgeries, no adhesions were found, instead my surgeon discovered a giant ovarian cyst that had adhered itself to my left fallopian tube, left ovary, uterus, bladder, and left side wall.  Also adhered to my side wall was my left fallopian tube.  It was the scarring from having the cyst and fallopian tube removed from my side wall that set off this storm of adhesions that would forever change my life.

Within months after this surgery the pain and pulling that I had felt on my left side had returned.  I tracked the pain cycle as I did before. Because it was the same, my doctor and I began discussing my options, one of those being a hysterectomy.  Because I had a toddler and a teenager at home, I decided to put the surgery off until summer when I wouldn’t have to worry about running the kids from one activity to the next.  My husband and I even planned our two week summer vacation for the day after school let out so I could have surgery after and spend the rest of the summer break recovering.  What we didn’t plan on was my having to have an emergency appendectomy while on vacation in another state.  My hysterectomy was postponed to give my body time to heal before going under the knife AGAIN.  Summer break was over by the time I had recovered from my appendectomy and the pain caused by my adhesions had reached a new level.  In addition to the pulling pain my uterus began contracting.  To be honest I wouldn’t have minded being in “labor” if I were actually giving birth, because at least I would know that it would end.  But there was no end in sight and the pain continued to worsen.

Realizing that I could not wait to schedule my surgery around my son’s school schedule I agreed to have it done right away.  This I do not regret.  However I do regret the type of hysterectomy that was performed and would never advise anyone else to have it.  That however is another story that I will share later.   During my hysterectomy my surgeon discovered multiple cysts and a spider web of adhesions. They showed me pictures of the scarring on my side wall that adhesions had created.  The multiple scarring locations explained the ripping sensations that I would feel and why I would experience relief now and again.

Sadly the adhesions returned with a vengeance a few months later.  To make things worse my original surgeon and approximately 20 more refused to deal with the problem.  The original surgeon stated that he took care of the issue and that my pain must be unrelated.  The other surgeons insisted that it was in my head or blamed it on my Fibromyalgia.  It took two years to find a surgeon who believed that adhesions were the cause and was willing to help.  A few admitted that it could have been adhesions but refused to help me.  By this time I was experiencing severe diarrhea, nausea, and was vomiting.  The cause of this was discovered in surgery.  My bowels were being strangled by the adhesions.  But this wasn’t the only thing that was discovered.  This surgeon revealed that the surgeon who performed my hysterectomy had left a mess.  A large portion of my left fallopian tube had been left behind.  It was infected, covered in adhesions, and was also embedded into my side wall.

My hopes of this being the end was shattered when my pain returned just a few short weeks after surgery.  The one difference was that main pain site was lower than before.  The cause was ovarian remnants that had embedded themselves into my side wall lining and my cervix which my original surgeon and I had agreed to keep during my hysterectomy.  A few months later surgery was performed to remove my cervix and lining.  Once again I felt hopeful of living a life with only pain from psoriatic arthritis and fibromyalgia.  Silly me……

While this surgery relieved me from the side pain, it ended up increasing my pelvic pain.  During the surgery my surgeon sliced a set of nerves when removing my cervix.  This left me with permanent nerve damage in my pelvis and left leg.  My surgeon also used sutures that I had told him NOT to use and ended up having a reaction.  Because he used the same sutures internally I had to endure yet another surgery to have them removed.

Since then I have learned to work around and just deal with the pain that my adhesions cause.  Approximately two years after my final surgery and at least twice a year my adhesions attack my bowels and I have to deal with the diarrhea, nausea, and vomiting.  Most spells only last a few weeks, however this year each spell has lasted for over a month.  It is getting worse and I know the time to do something is coming near.  I have been lucky that with exercise and riding fast rides at Disneyland, I have been able to loosen my adhesions without surgery for close to six years.  Unfortunately nothing I do seems to be helping at this point in time.  Thankfully the ripping from my lining, mainly my side wall and area near my belly button, has been in full swing for the past two weeks putting an end to the nausea, vomiting, and diarrhea that I had been experiencing for the month prior.  The bad part about this is that without those symptoms and no longer having my bowels under attack, all medical tests performed show nothing wrong.  While I am used to never having what is wrong with me show up in testing and only being discovered in surgery, my new doctors are not.  So we continue to play the test this and that game until they agree to surgery or are forced to as my physical condition plummets during one of these episodes.

I am not a fan of surgery.  I have had ten in my life time and have no desire to every have another, but losing months to nausea, vomiting, and diarrhea isn’t ideal either.  Unlike my past surgeries, this time I would have no fantasies of living without abdominal pain afterwards.  I know the adhesions will return and I have survived the past six years with a pain that is just as intense as it used to be.  What I do expect is to gain a few years of not having my bowels attacked.  I can live with pain.  I have known nothing but a life of physical pain for over 15 years, but I can’t deal with the nausea, vomiting, and diarrhea.  On the other hand, I hesitate to push my doctors to perform surgery because of all the errors that have been made in prior surgeries.  The errors mentioned in this post are only a few that I have to live with.  To be honest I am terrified that the next error will be worse than the rest or fatal.  I also realize that I need to get past this fear, because if my spells continue to increase in length and severity they could also cause permanent damage or kill me.  I feel like I am living a case of damned if I do, damned if I don’t.

I would love to hear from others that suffer from abdominal adhesions.  How do you deal with them?  What is the longest amount of time that experienced relief and why?  Is there any hope for people like us?

I am currently seeking relief from the extreme pain that my adhesions are causing.  Just like my past experiences, I must go through a bunch of tests to prove that they are the cause of my digestive issues.  Follow my quest by clicking here.

Wishing all my spoonie friends a day filled with smiles and gentle hugs!

The Disabled Diva

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