This is part of a series of posts chronicling my quest to receive relief from abdominal adhesions.
When did it become acceptable to not help patients? When did drugging them become the go to plan? When did doctors start giving up on patients, just because their condition is not easy or text book? Why aren’t they willing to give my internal organs a break? Why are they willing to allow my condition to shorten my life, when they can do something to prolong it? These are just some of the questions that are swirling through my head after experiencing one of the most emotionally and physically draining weeks of my life.
I have stayed quiet online since arriving at the ER on Monday afternoon. The events that took place in the ER as well as the rest of my week that consisted of online messaging and phone calls with my network’s member services, doctors, and nurses, caused my head to spin. In addition to an increase of pain and newer symptoms, I was dealt one blow after another.
Going to the ER was both a mistake and a blessing. The mistake was expecting them to help. They didn’t want to help and made that very clear. Instead all they wanted to do was provide pain medication. They didn’t care that I was (and still am unable to) eat any solid food without severe pain. I can clearly feel the area in which my general surgeon, DR T. and I believe to be where adhesions are causing a kink in my digestive system. When I eat solid foods, everything becomes lodged in that area and I feel like I have a watermelon stuck inside my intestines. The pain is a little less when I eat softer foods, more like having a cantaloupe lodged inside of me. Even smoothies induce pain, but instead of feeling like there’s a watermelon or cantaloupe inside of my intestines, it feels more like a peach. No matter which level of pain I experience, none of them are ideal. They also indicate that there is something wrong. Instead of continuing to search for what was increasing my pain and creating an inability to eat without pain, the ER doctor gave up after running one useless test. His answer was to send me home with heavy duty pain meds in which I refused. Those of you, who have been long time followers, know that I treat my other chronic conditions and pain with medical marijuana. I understand that not everybody has that option, nor is it the right choice for every patient, but it is the best option for me. Surprisingly, most of the doctors and nurses that I have seen in the past four years have been nothing but respectful of my choice. That is until now. This physician was adamantly anti-marijuana and he didn’t hide his opinion of it. I left the ER with the same pain as I arrived with and was still unable to eat without pain. Wait a minute, where’s the blessing in this visit you ask? Before going to bed, I messaged both my primary and general surgeon to let them know that I went to the ER because the pain and my symptoms had increased and changed. Because of this progression and the ER being of no help, I inquired about the specialty surgeon’s referral. It was time to fast track our plan of ruling out other issues. Did my doctors jump into action or offer assistance? Was that the blessing? Read on…..
Tuesday morning, I called member services in order to ensure that my physicians saw my messages. I needed to see someone. That afternoon, a nurse from the general surgeon’s office left a message saying that no referrals were going to be made because my tests so far had not shown a reason for my pain!!!!! Hello!!!!!!!!?????? We expected them to have negative results because they were conditions that we were ruling out!!!!! The whole point of them, according to the general surgeon was to rule out everything possible so we could get clearance for an exploratory surgery which is the only way to discover adhesions and the mess that they are creating. I was livid. Tears began to fill my eyes, but it was her next comment that caused them to pour down my face. “Your pain is intractable, (meaning there is nothing that can be medically done for it), and you should go to pain management for pain medication. And since you refused pain medication at the ER, I don’t know what you want us to do.” Doesn’t know what I want????!!!!! I thought it was very clear what I wanted. I want the problem found and dealt with. I am 99.9% sure that the cause is adhesions. And how dare they right me off by saying all they can do is keep me comfortable by drugging me when cleaning them up with surgery WILL help, even if only temporarily???!!!!! It has been 8 years since my last surgery to clean up my abdominal spider web. Within months the ripping from my sidewall returned and I endured it, because that pain was never 24/7. I didn’t complain or request help until they started causing pain and problems with my bowels without relief.
I immediately called member services and requested to see my general surgeon ASAP. I needed to know what happened to change our planned course of action. I was told that the soonest appointment was in three weeks. Without any other suggestions of whom I could see or talk to, besides going back to the ER, I hung up on her and broke down. What kind of nightmare was I living???? Not one to give up without a fight I altered my plan to get the help I desperately needed. Thankfully I have all of my past medical records. I was upset and my eyes were puffy and swollen from crying. I couldn’t find my records and decided that I needed to medicate heavier than normal, go to bed, and wait to look for them with a fresh pair of eyes in the morning.
Sure enough my records were just where I thought they were, I just couldn’t see them with the mental state that I had been in the night before. Going through them to pull out the most pertinent records that not only show my history with adhesions, but that would show my doctors that I have reasons to believe I know what is going on inside my abdomen, I found something interesting. In all my years not one physician ever mentioned my having endometriosis. They always spoke of my adhesions, but that is all they called them. Anytime I inquired about how they came about, I was told they were caused by surgical scarring. Well to my surprise, something stood out as I looked through my records; I was diagnosed with endometriosis in 2008. I sent the surgical findings of four of the six surgeries I had regarding adhesions, to the general surgeon and my primary. I asked how could they deny what is happening to my body based on my records.
The next day, my primary responded and said that he was putting me in contact with a nurse advocate. Later that afternoon I received a message from her stating that she didn’t understand the problem because there was a referral for the gynecological specialist. Minutes later, she messaged me again saying that she was wrong, there wasn’t a referral after all and that she would be calling me in the morning.
This nurse is an angel. Without her detective skills and willingness to search for answers I wouldn’t have an ounce of hope left in me. She discovered that my general surgeon DID put the referral through, but that the head of gynecology REFUSED it. This was the blessing. If I hadn’t gone to the ER, I would have no idea that the plan that Dr. T and I had agreed to was no longer happening. She also found out why he hadn’t replied to the message with the records. It was still unopened in his email box because he was on vacation. She then explained my options.
1. Go to pain management. Seeing how I medicate on my chart and that I had refused pain meds earlier in the week, she politely asked, “Is it safe to assume that pain management is not an option you would wish to try?” She was right.
2. Get a second surgical opinion. I agreed to this option. Dr. T may not be willing to fight for my life, but maybe another surgeon would be. I have an appointment set for Tuesday the 4th.
3. Self-refer myself to the gynecology department. I also agreed to this. I have an appointment to see an OBGYN who specializes in pelvic pain this Wednesday. My hope and prayer is that this physician is no stranger to adhesions and the damage that they can do. Most of all I pray he will be willing to fight for me.
In addition to those appointments I also have a colonoscopy that had been scheduled weeks ago this Thursday. Part of me wanted to cancel it, but I know it needs to be done whether it shows anything or not. If they find nothing it rules out more GI issues. If they do find something, then they prove me wrong, but will know how to treat me. What I am hoping they will see is this: I hope that the area that is presumed to being squeezed by adhesions will be obvious. If the adhesions have a tight enough hold, the scope should prayerfully see a narrowing in my colon. To be honest, I don’t care which outcome comes to pass, just as long as it leads the way to my obtaining real help and not being told that all I can look forward to is a life filled with heavy drugs. If my condition doesn’t kill me the drugs will.
What frustrates and saddens me the most is unlike my other conditions, which are also painful, this particular problem could end my life. Adhesions could do more than strangle, twist, and pull my internal organs. They could grow through them or rip them. Not only that, but how long can a person’s body go on when they have to wait 24-48 hours after eating a “small” meal (more like a few bites of food), to be able to eat again without increasing their pain beyond the level the prior meal caused? The worst is being told that there is nothing they can do, when there clearly is. Exploratory surgery is the only way they are ever going to find out what is going on. Never in all my years have one of my cysts or any adhesions and the trouble they were causing ever discovered from a test or scan of any kind. Is my provider willing to risk my life just because their tests aren’t explaining my pain? I guess we’ll find out.
It has been a long time since I experienced such an emotionally dark week. I cried and continue to cry every day. Some days I sob and others I just allow tears to flow down my cheeks. I am taking life day by day and will figure out how to continue to do what I love no matter how bad my condition gets. This means that you will see posts about me visiting Disneyland. Just remember that my going to the park doesn’t mean I am better or healed, it means I just really wanted and needed some Disney Therapy. As for the pain, I will learn to live with a higher pain level, as I have done time and time again. Until I am able to find a physician to help, I will continue to find ways to make sure my body is getting the nutrients it needs to live. I will also continue to cling to my faith and draw comfort in the fact that I am still alive. I will continue to make adjustments. I tearfully accepted that I wouldn’t be able to join my family and friends at a conference this weekend. Part of me wondered if I should have pushed through the pain and fatigue. However, my pain and exhaustion level proved that I made the right decision.
My mask has cracked. I can no longer pretend that I am fine or that I am not afraid. Thankfully I can also see the joy and good in my life. So don’t let my tears and sometimes dark thoughts be mistaken as signs of giving up. Not only do I refuse to give up, I also refuse to give my conditions permission to keep me from living a full and meaningful life, no matter how long or short it may be.
Here’s to hoping my next update will have some better news!!!
Wishing that even during your darkest days, you are able to find even the slightest sliver of joy,