Preparing for battle
Prior to living with my chronic illnesses, I never feared or worried about doctor appointments. If something felt odd, I made an appointment, the doctor diagnosed it, and then he fixed it. Oh how I miss those days. I am fortunate that since my first chronic diagnosis, many of my health battles only took 6 months until my doctors took them seriously, but it’s the ones that have taken longer that strike up an anxiety attack whenever I need to make an appointment.
My worst experience was during the two years it took to find a surgeon to listen to me when I was experiencing abdominal pain after my hysterectomy. Some listened, then ran tests, but would throw their hands in their air and give up once my tests came back normal. Others would blame my chronic conditions without running any tests. The worst were the ones who told me that my pain was all in my head and that I needed to see a psychiatrist. There was one appointment in which my abdominal pain had made itself visible. I had a lump that was visible and hurt like heck when touched. I lifted my shirt to show the surgeon and he refused to look at or touch it. Instead he kept his focus on my chart and ignored me as he recommended that I see a psychiatrist.
Having symptoms dismissed and being treated like I was out of my mind has forever changed how I view the medical community. Sadly, doctors weren’t the only ones to doubt my sanity. With the exception of my husband and children, everyone else in my life at that time believed the doctors. There were times when even I questioned my sanity. After two long years of leaving one doctor appointment after another in tears, I finally found a surgeon who not only listened to me, he also believed me. He not only found what he expected, which was that adhesions were strangling my bowels and pulling on my bladder, he also discovered a slew of errors that had been made during my hysterectomy. I will never forget hearing the news when I woke up in recovery. I wanted to go the hospital rooftop and shout out “Who’s crazy now??!!”
After that experience I had hoped and believed that it was a once in a lifetime event and that I would probably never have to go through anything like that again. WRONG. A few years back I went through an agonizing year and a half as I fought to get my doctors to listen to me about the pain in my sacrum and coccyx. The most disturbing aspect of these situations is that in both cases it wasn’t until I completely lost my cool and pretty much acted like a lunatic during a visit to get someone to listen to me. I hate that it took being driven to the point of losing all emotional control for someone to think “hmmm she must really be in pain’. It’s ridiculous!!! It is also the reason I despise going to the doctor for anything. I only see one when I have exhausted all natural remedies. Unfortunately, not all health issues can be dealt with in this manner and I have had to accept that I am currently in need of medical attention.
You see, prior the surgery that revealed the hysterectomy errors and the havoc that adhesions were creating, I would suffer from a particular set of symptoms. During that two year period, I would feel tugging, pulling, and ripping inside my body. What was explained to me later was that the adhesions were attaching themselves to my organs and sidewall, then pull them, adhere to my sidewalls and later rip from my sidewalls. After a while I began to experience digestive issues along with it. Looking back I am thankful that I only had to suffer with the abdominal bloating, diarrhea, nausea, and vomiting for less than 6 months. Because of the ripping, my symptoms come and go, that is until they would twist something else or pull tighter.
Following my last abdominal surgery (that was my eighth one), the adhesions returned shortly afterwards just like they always did. However, knowing that it would take years to get someone to help me, I just dealt with the pain. Thankfully the extreme spells of pain were short in comparison to what it was prior to my last surgery. Sometimes the ripping sensation would last for a few hours and other times for days. At its worst the nausea, bloating, diarrhea, and vomiting would last for a few weeks. I didn’t realize how lucky I was until my abdominal pain and what appeared to be digestive issues escalated to a new level.
A year and a half ago I went from having short spells to having all the symptoms present for three months straight. Realizing that this was not normal I went to my doctor. While he ignored my suggestion that adhesions were the cause, he did want to run tests. This gave me hope. That is until I realized that all of his tests and suggestions to remedy my pain were all directed at digestive issues which were only symptoms, not the cause. After months of receiving one negative test result after another, the pain subsided and I gave up pursuing the real issue. Part of why I gave up was that I was experiencing relief and just wanted to enjoy it. Another reason was that I was exhausted. Exhausted of telling one doctor after the next the same thing over and over and getting nowhere.
After a short reprieve the symptoms returned. Not wanting to waste my own time and energy, I decided to ride the spells out and told myself that if it went beyond three months I would seek help from my doctor. Each time it would last for a month or two, and then it would give me a break. That is until this past December. In December the ripping, bloating, vomiting, and diarrhea became more intense and it has yet to stop. As I reached the sixth month mark of living in agony, I finally accepted that it was time to begin the battle of finding a doctor who will help me. I know this won’t be easy. I even accept that they are going to want to run a bunch of useless tests. The reason I call them useless is that everything that has ever been discovered during my surgeries has never, ever, shown up on any test. Not one MRI, CT, Ultrasound, etc. ever showed the fallopian tube that was left behind, the ovarian remnants, that my stomach was being twisted, or that my rectum or bladder were being pulled where they didn’t belong. This may sound crazy, but that isn’t the only reason I distrust medical testing. There was one instance in which the surgeon was reading the results of my MRI to me and I had to stop him when he shared that my appendix looked great. I interrupted and suggested that he either had the wrong test results or someone incorrectly read my scan because I had my appendix removed five years prior!!!! Instead of looking into the matter, this surgeon took offense, suggested that maybe I was confused and argued with me. To his credit, he did apologize after surgery revealed the real problem and my appendix was nowhere to be found. Knowing that this is what I will be dealing with, I finally made an appointment. I don’t want to have surgery. It’s been eight years since my last abdominal surgery and I had hoped to never have to go under the knife ever again in my life. This is why I have dealt with extended spells for longer than I would normally deal with. If I am lucky, surgery will provide some relief and I will go another eight years before reaching this point again.
Some wonder why I don’t go to the Emergency Room when the pain escalates. Again, that would be a waste of my time. They will do what they did in the past, run useless tests, give me pain meds, and send me home. Since I treat my pain with medical marijuana, I have no need to waste 8-12 hours at the ER. If only Emergency Rooms were like the ones on TV, where they don’t stop until they figure out the problem.
I begin this next battle on July 20th. Part of me is expecting the worst. I expect to go through unnecessary testing and having to keep pushing for many months or maybe years until someone helps me. On the other hand, I am praying that my doctors will listen and that it won’t take my inner lunatic coming out to get their attention. I also am praying for strength to keep fighting. I have said this many times and I still believe it to be true: While my chronic conditions are not terminal, they will kill me. They are the reason doctors dismiss serious issues that are unrelated.
I plan to blog about this battle as I go through it, if for no other reason than to show how frustrating it is to get the real medical care you need when you have one or more chronic conditions. I do however have a favor to ask of you. If you sense or read that I am considering giving up this battle, speak up and remind me to keep fighting, because if my intuition is correct, if my abdominal issue isn’t dealt with, in time it will kill me. Now I am not claiming to be smarter than any doctor or surgeon, but I do know my body and have been proven correct with each surgery. With that said, I want to share my prediction of what will be found. Here is what I think is going on based on past symptoms and surgery outcomes: I believe that abdominal adhesions are making my life a living hell. They are pulling and ripping from my sidewalls, ribcage, and pelvis. They are pushing either my stomach or intestines into my ribcage. Either a portion of my intestines, stomach, or adhesions themselves have adhered or become embedded into my inner lining. The reason I believe this is that I can feel a mass, just as I did when the fallopian tube that was covered with adhesions had embedded itself into my sidewall. All of what I am experiencing goes beyond experiencing physical pain. It is interfering with my digestive system, making it impossible to eat some days. Whatever is going on in my belly is beyond exhausting. Because I have gone so many months without relief I am physically weaker than normal. I never realized how much I depended on my core to keep myself from falling or to just be able to sit up. With the turmoil that is going on inside of me, I am finding myself toppling over more than ever before.
As I finish this post, all I can think of is that it is just heartbreaking that I am not the only one who has experienced this type of incompetence from the medical community. I also want to remind others to not give up fighting. We know our bodies better than any doctor and we must not be afraid or intimidated into giving up. Click here to read the next step of my battle, Round One.
Wishing you a day filled with gentle hugs and many reasons to smile,