I haven’t been taking many pictures or posting many blogs and that is because of some recent health issues. As you guys know I am always vaguely mentioning my health but I today we will discuss what I mean by those occasional comments. I am a big advocate for patient education and healthcare so maybe by me sharing my story I can help someone just a little. It is so frustrating when people look at you like you are a cry baby or weak. No one can see the scar tissue or the inside of my stomach so they don’t understand the pain that I feel. Sometimes I hide how bad I hurt so that people aren’t judging or misunderstanding me. I have been accused of faking it, playing victim or over reacting and that makes me so upset even by doctors in the begining. Sometimes people get upset with me because I turn down invitations to go out to eat, or I won’t eat at their gathering and I try to explain it is nothing personal, but sometimes they don’t understand. I wish we as people would really pay attention to how we treat each other, because we do not understand what others are going through. My own health issues is why I always tried to be so understanding and compassionate when I worked in the medical field. We do not know the journeys that others are traveling, so we shouldn’t hate on them.
First back in 2000-2001 when my kids were very little I started having these pains in my lower right abdomen and went to the doctor many times during that year for a myriad of things: I had ovarian cyst – the doctor said give it time to work it self out if it gets worse take the pill or do surgery. Then they said I had Endometriosis – never did anything more just gave me pain pills. Then one ER doctor said I had appendicitis but after test, he said that I didn’t and sent me home with pain medicines. This went on, test after test, doctor visit after visit, ER visit after ER visit. One trip to the ER with a CT scan put my body over the edge and it decided I would not have any more IV Dye in my system, I had an antiphalatic reaction and literally almost died, but they didn’t see any sign of appendicitis on this visit either and sent me home, they literally discussed if I was addicted to pain medicines and my response was … I have bottle after bottle that you guys have given me with every visit STILL sitting in my cabinet if you want them back, I was furious to say the least and this made me not want to go back to the doctor. I would literally lie in bed with pains for days but then I would be fine again which is why they really thought it was related to my cycle. But eventually I became so sick (TMI WARNING) that I was having liquid come from both ends, I literally laid in the bathtub, this caused a few trips to the doctors where they did labs and gave me fluids, but all my labs were normal so they sent me home with instructions for gastroenteritis. That evening my ex and I had an argument (it wasn’t a good relationship) – he made a comment that he hoped I died, well that was all it took …. No one was going to get the pleasure of me dying (I know very dramatic but it is how I felt). We went to the ER, I was determined to get better, I would not give him the pleasure of me dying, I would not leave my kids behind, I would get better for them. The ER was shocked at how bad I looked and after a few test they realized my BP was bottoming out, my potassium was deathly low and I was rushed into the back with tubes inserted everywhere. Two days and a bunch of test later (including fluoroscopies, scans, blood work, etc) they still didn’t know what was wrong and this one amazing surgeon walked into my room and looking back I swear he reminds me of the doctor off of the show House. He was cocky but nice, he was investigative and concerned. He said something about me being his zebra in what he called a black and white career, he said doctors are so clear cut and text book that sometimes they miss things. And that sometimes some peoples bodies are so strong that they fight and hide things very well (all my labs and scans were always normal, which is why they always missed my appendix). He asked for permission to just do a exploratory surgery into my abdomen, I agreed because by this point I was knocking on deaths door. I woke up from surgery and the doctor was in my room shaking his head, he told me that I had a guardian angel because he didn’t know how I was waking up or even there to begin with. The only thing he could conclude was that around my period my bloating would push up against my appendix causing it to “leak” but my body would fight it off the best it could and I would be fine again, until it couldn’t fight anymore. He said that there is a dispute in the medical community about whether “chronic appendicitis” was real and this is the only way he could explain the normal labs and scans and why everyone missed this even him for the first few days. He continued to explain and apologize for my open abdomen, he tried to make a clean cut but unfortunately the damage and severity of the surgery it wasn’t so pretty. My stomach was cut from my belly button down, and was open, it had to be healed from the inside out because my entire cavity was engrossed with adhesions and the poison from my dying appendix. He removed it and most of the scar tissue that he could.
I healed and recovered but those adhesions caused me years of pain and problems, especially around my monthly visitor. I had another surgery in 2007 because they thought a had a 8-19 cm cyst but it was really scar tissue, so the doctor saved my ovary and cleaned out as much scar tissue as possible, but on all my records he noted that there was still massive amounts of scar tissue and that if future surgeries were required then they would have to go in on one side or the other due to the midline was nothing but a wall of scarring. I still have problems with my iron and potassium levels at time, which could be due to all this or not.
In 2010-2011 due to some life situations I was so stressed that my appetite was non existent and I lost 40 lbs in a matter of weeks. Basically I was doing a crash diet even though it wasn’t on purpose and if you read how bad crash diets are, well I caused my body a lot of undue problems for a stupid situation. But I couldn’t physically eat, if I tried I would throw up and no it wasn’t an eating disorder, I just wasn't hungry. But basically this caused my gallbladder to basically quit working and it was removed. On the report they noted scar tissue present but not the cause – OMG on my gallbladder !!!!
But now, it seems as if I can’t retain or absorb the nutrients that I need and I get sick very easy from eating. I am sure I have more doctors visits in the future to try and figure this out but for now I just deal with it and take many supplements and vitamins. I have been tested more recently for everything from Crohn’s to Celiac and many other stomach issues, but no one has went back to the consideration of Endometriosis and we cannot find out why I get so sick. I literally have episodes where I can eat something and 30 minutes later I am in horrible pain and have horrible bouts of diarrhea. The pain still comes and goes and I have had scans to keep an eye on the scar tissue and monitor the pain. I worry all the time that what if they miss something major because they blame everything on my scar tissue, what if I end up with ovarian cancer but it is ignored because they don’t want to do another surgery to remove the scar tissue until it’s too late.
I have learned that if I cut out most processed foods that I get sick less, but not completely better. I try to go gluten free and eat more fresh fruits and veggies. I am not perfect at this and I love my “cokes” but I have learned to cut back on the bad stuff, I know we have to give ourselves a little room for error. I also do a little yoga (I am still a beginner) and I try to walk at least a mile daily because I feel that being active does help with the pain.
I found out recently that I have a mass on my left ovary and we are pretty sure it is scar tissue, so I will be going to Jo’burg to speak with a doctor about my options. I don’t want to fly home because then Justin would have to leave work for weeks to help take care of me after the surgery. So I will keep everyone up to date.
May 1 Update: I didn’t get a chance to really see what my options were because after visiting the doctor a few times I got extremely ill. I started with a fever, I felt like my body was on fire but it is winter here so we figured it was the flu because I didn’t have any other symptoms. The doctor calls us in some antibiotics but the fever still doesn’t go away and my symptoms don’t change: fever, exhausted and weak. We decided to go to a local doctor and they do an ultrasound but the look on the doctors face told me that something was wrong and he basically told us he didn’t want to do anything and that we needed to get to the doctor in Jo’burg now because the mass had changed in size and was “HUGE”. So we head to Jo’burg.
Once we arrive they do scans and you can see the look on the doctors face that something wasn’t right. They admit me due to the fever and to monitor my symptoms. Later in the night my fever must have skyrocketed because everyone freaked out and they were putting cold rags on me, the put a fan to blow directly at me and removed my covers. Next thing I know the doctor was back and the anethesiaologist was both there talking to me but honestly it was all a blur. I just remember the nurses looking so concerned as they wheeled me into the “theater” / operating room. I woke up the afterwards to find out that they cut me using my old scar. I didn’t understand what was going on but the doctor made a comment that if I wanted to get pregnant I still had my right ovary and I wanted to cry – what did that mean, what happened??? I was too weak and ill to ask questions. Justin was there and the nurses were too, everyone was checking on me and everyone looked so worried. After a few days of trying to heal and walk, I started throwing up and on that Saturday they decided to transfer me to another facility because I wasn’t getting better and because they were not staffed on the weekends. I was transferred to another hospital, they did test and scans and determined that I had ileus and just needed more rest. I started feeling better and after 3 or 4 days they released me. I was only at home for two days before I started throwing up uncontrollably and had to return to the hospital but because of how bad I was we went to a closer one. I was there for maybe a week and had round the clock antibiotics (2 different ones). Again I started feeling better and they released me. Again I was home for a few days and then I started getting high fevers, so back to the hospital we went and again I was there a week. The doctors couldn’t figure out what was wrong with me. They literally tested me for every parasite, infection, disease and condition but yet found no explanation for the fever. The only thing that they could do was a blood transfusion (b/c of my lab work) and put me on a strong antibiotic and pray at this point. I had two physicians – 1 gyno and 1 physician and then we had a wound specialist as well because part of my surigical site hadn’t healed properly. After a week and only low grade fevers they decided that maybe I was doing better and to send me home. If I came back they would reopen me and search for a possible reason for the fever, but thank God… I am still home, I am struggling to heal and rebuild my muscles but I am home and I am alive!!!
Some days I question “why me”, “why do I keep having to go through this?” but I know that I am not the only one that has been through this, and I also know some people have had it worse then me which is why I am so grateful to be alive and able to have a normal functioning life (for the most part lol). My path and my experiences have made me who I am and for that I would not change anything.
I appreciate all of the prayers, thoughts, love and support that I received during my times of both good and bad.
Keywords: Expat, Family, Health, Oophorectomy, SouthAfrica, Travel, appendicitis, chronicappendicitis, femalehealth, ovariancyst
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