#1/15 The Agony of how I found out

It first became apparent something was really wrong when riding in an ambulance to hospital with suspected appendicitis.  That painful agony earned shots of morphine before we could begin the journey and ongoing doses once I reached the hospital.  I had heard all about the dreadful pain of appendicitis and now I seemed to be living it. 

Suddenly this is like ground hog day.  A year and six months has passed since my first trip to the hospital and now I'm on my fifth trip.  Another case of suspected appendicitis.  I'm scratching my head wondering how it is such time has passed and once again I am smacked up on morphine in the back of an ambulance.  

There is a mixture of emotions, including guilt that I am wasting precious sponsorship donations to the St Johns Ambulance with my need to be attended to in this manner.  Who thinks of something like that in such a moment.  You do, when your health and hormones are completely out of wack.  It's been building up with each week feeling awful, night sweats, tired and sickly.  Frequent ground hog day trips to the General Practitioner have presented nothing. Ground hog is a meaning given to something that is repetitive, and so it had become this regular occurrence of painful agony. 

In Accident and Emergency as I wait, concerned about what may be happening for me this time, the Doctor indicates he requires a psychological assessment using the assistance of the Crisis Assessment Team from Mental Health Services. My blood results and scans appeared normal. In other words he suspects I am faking my symptoms.  He has not observed me before in this condition or any condition.  But he has determined from reading my file that I have previously been admitted a number of times to A & E with no outcome. For him this is enough to think I could be a total nutter wasting precious hospital resources. I must admit that after three hell days in bed suffering in agony it would be fair to say I most likely looked at least a little bit nutty.  I did not however expect to be referred to the CAT team.  

Goodness knows how, probably by panicking, but somewhere through the haze of morphine I remembered my General Practitioner wrote a letter.  I was meant to carry it with me at all times in case I had another episode or was found unconscious.   I sought the help of a friend who had to come and collect my house keys and went to my home to gather the letter and prescribed medicines. Once this letter was read by the medical team it became apparent that again nobody here could give any answers to what was happening to me.  The CAT team assessment was deemed unnecessary and therefore did not go ahead.  I was referred back to my General Practitioner.

For a moment I would reflect having arrived at this empty confusing lonely place of pain.  It became more obvious to me now that I had to be a part of the solution not just present myself as the problem. I had to work as an investigator for myself and extract information from somewhere until I found the answer.  It was not an easy observation, the last thing I felt like doing was more.  What had been and continued to be a physically painful battle was now becoming emotionally painful.  The very people I needed help from just suggested on some level that I was likely to be crazy! The hospital, a place that holds all the resources to help me, has just sent me away.  Modern medicine and expensive holistic medicine have provided no answers and little relief over the last year. And believe me, a lot of money has been spent at appointments with a holistic general practitioner as well as purchasing different natural medicines.  Typically funds are not being earned while medical expenses have severely increased.  I sense my life is being impacted negatively on all levels as I live more frequent moments being debilitated. Some would call this a dark place to end up. That would be true, but I ended up too busy searching around for the light switch or a candle and a match stick to ever remain thinking there.  I have a loving family and friendships that date back to a place where I can be myself who, if I took too long had no issues being a shining light to me, bless them.  It did not matter how hard it was. What mattered was I had to dig in and establish why it had become that hard.

I really thought about it, the area, the frequency, the when, what, how. I realized it was not just one type of pain or one type of nausea.  It was various types of pain and various types of nausea.  It was when I walked, when I sat down.  I felt stabbed violently or cut severely.  It came on dramatically all of a sudden and went again or it stayed for days.  Lots of vomiting.  Migraines.  It hurt to do certain movements.  I kept feeling as though I was coming down with a cold or on the verge of the flu.   My monthly cycle was very heavy dropping out in large clots and adding more pain.  I was constantly sick and in agony from day 21 of my cycle until day 8 of the following cycle.  Extremely tired, like I was fighting in a continuous battle to survive.

Going back to my GP this time I requested a referral to see someone different, a specialist in gynaecology. Putting my investigative hat on, the only other organs in the area of my appendix is the reproductive system and the bowels.  So, having dealt with enough crap up to this point gynaecology seemed easily the preferred first choice of the two.  I expressed I was not going to let this go on without pushing for more answers and that also meant stepping up and trying different options.  My GP agreed with my new motivated approach.  I was referred for another ultrasound of my abdominal area and I booked a private appointment with a gynaecologist.

I had a scan one day and two days later I was with the gynaecologist.  For the first time something had actually shown on the ultrasound.   It turned out to be a cyst almost 4cm in diameter on my right ovary.  That result and hearing the rest of my problematic symptoms meant surgery. At that point the specialist emphasized it was impossible to correctly diagnose what may be happening without performing investigative surgery and of course removing the cyst.  The cyst was there for sure, but he could not determine if all my illness was just from a cyst or what type of cyst it was.  He prescribed Tramadol pain killers and nausea medication explaining that I will need them while working knowing I was due to fly out to the pacific islands for a week as an investigator on a fraud case. After that trip I could fully stop working and begin preparations for surgery. 


A laparoscopy was performed where the surgeon makes three small incisions rather than cut across your abdomen. It was a very quick surgery of about an hour.  Once coherent the surgeon explained to me that I had a cyst known as a chocolate cyst full of blood, as well as small lesions found on my pelvis side wall.  That what I had was the result of a disease. A disease called Endometriosis. 

There was little information given other than a name and knowing it was not the type of disease that could be terminal.  In fact, it would be fair to say no education or awareness of the disease was presented to me at all.  However, for obvious reasons any efforts at this time were better focused on recovering from surgery.  But the questions rolling around in my mind during the 6 week recovery as to what it was were relentless. 

I really had no idea even after having a diagnosis what I was facing, nor what I would be up against. My hopes of surgery putting an end to these issues were not going to be my cure after all.  Life was not going to go back to normal for me after my initial recovery.  A lack of information would lead me to search for a new surgeon.  Ahead of me would be major surgeries, heavy medications, learning to manage, specialists’ visits, a mountain of education, change, and a whole lot of perseverance.  Little did I know back then that the disease would develop into a severe case causing my abdominal organs to fuse together. 

Next Blog  #2/15  What is Endometriosis?


Up and Coming Blogs 

#3/15  Plenty of questions, where to link for answers, #4/15 Choosing your medical team,  #5/15 Attitude versus aggressive disease, #6/15 Pelvic pain & nausea, #7/15 Diet & exercise,  #8/15 Medication, treatments and mind control, #9/15 Find your own pace #10/15 Gone Rampant, #11/15 Surgery & recovery,  #12/15 Moving forward debilitated or not, #13/15 Relationships, family & friends, #14/15 Other things happen, #15/15 Living beyond Endometriosis