I Rant

Rant 4: Rate Your Pain on a Scale from Female to Male

Have you ever noticed that women are less likely to have their pain treated properly? Cause I have! Not only is our pain taken less seriously than our male counterparts, but we are also treated less often. How ridiculous is that? I always thought that my doctors knew best and that maybe my pain wasn't as bad as I thought it was and that I was just overreacting to it and being a wuss. Imagine that! Someone told me that I was feeling pain wrong and I believed them. Hilarious. As if they could feel what I was feeling just by looking at me. My history with pain began at a very young age, and so did my history with doctor's telling me that it wasn't as serious as I made it out to be. 
Since about ten years old I have suffered from migraines and chronic headaches. My head pretty much is always at a two or three on my pain scale most days. I remember going to my doctor about them and all he had to say was "it's normal for you to experience some headaches as your hormones fluctuate" as if my menstrual cycle was all to blame for my head problems. So I began to ignore them as best as I could and it just became a regular part of my life. When I was thirteen I began getting migraines that were debilitating to the point where I couldn't walk without help because of the pain. I went back to my doctor and again he told me that they were normal and blamed my stress level for my pain. I was told to relax more often, and given antidepressants to help with that. Not surprisingly my headaches and migraines didn't go away. With no change in my condition I stopped taking the pills since they were giving me horrible side-effects and I was not depressed at the time. I started taking Advil and Tylenol daily to help manage my pain in high school. I was then told by my doctor that me taking the pills was actually making the pain worse, and that I should only take them when the pain was really bad. Sounds fair right? Except my pain was really bad every single day that I took them. I told my doctor that I was in pain and taking daily pills for it, and his response was to tell me that I wasn't actually in a lot of pain and that I shouldn't need the pills. He wasn't listening to me. 
Then I started to experience hand tremors as well as bleary vision during migraines. These symptoms started at around age fifteen or so, five whole years since I first reported my chronic pain. I was brought to the hospital by my mother because my hand tremor wasn't stopping and she was concerned. Just by chance Doctor Bob a neurologist at the hospital walked by and saw my hand. He quickly brought me into the examination room and was excited for a new neuro case. He ran some tests and even brought in the Chief of the hospital to take a look. They sent a recommendation to my doctor and ran some tests. I was given a CT scan with and without iodine for contrast, my results were then sent to my family doctor. Upon visiting my family doctor he skimmed through the scan and didn't seem to listen to the minute long audio that went along with the scan. I remember him saying that "such a short dictation usually means everything is fine and I can't see anything that looks out of place" those words were most likely meant to reassure but I remember asking to listen to the audio and being refused that request. After the CT scans that were done at the request of Doctor Bob, I was then sent for an EEG. The EEG results were negative, and since my hand did not shake at all thought the test it was a void test. My doctor took the test results to mean that everything was fine, and again I was given the diagnosis of mild stress and prescribed anti-convulsants at a low dose to stop the tremor. The tremor subsided by itself and I was able to go off of the pills. My doctor never ordered any more tests and just left it at that. A year later I found myself in a walk-in-clinic talking to the doctor on call about new pain symptoms. I had sustained a concussion years prior and now was experiencing shooting pains in my skull as well as down the left side of my face. They would come and go and when they were gone I was left with a tingling sensation in the affected area. The doctor at the clinic diagnosed me with trigeminal neuralgia at age sixteen. Sixteen is very young to be diagnosed with trigeminal neuralgia as it usually affects people over the age of fifty, fifty! Neuralgia is also incurable, and a life-long illness that can only be eased if needed.  My doctor was told about the diagnosis and seemed content that I did indeed have neuralgia at only sixteen. The next year while doing yoga I noticed a lump in my neck, a large lump and some smaller ones above it. Pressing on the lump brought pain with it  and a funny feeling in my head. Once again I found myself sitting in the doctor's office explaining my symptoms. Now the list of symptoms seemed to prattle on. Chronic headaches, bad migraines, hand tremors (as well as unexplained weakness in my dominate hand  which was the one with the tremor), great vision changes (since my first visit at age ten I had my prescription changed at least twice a year), neuralgic pains and now a lump on the back of my neck that hadn't been there before. My doctor looked at the lump and rolled it around, when I told him it hurt when I pressed it he told me I had been pressing too hard and that there was nothing to worry about. He said that it was just a lymph node that happened to be in a different place and that it was totally normal. Just like all my symptoms were totally normal. I asked if it were possible to have a biopsy done since I was worried that it was connected to my other symptoms and feared that it was either a cancerous growth or a cyst that was causing my other symptoms by compressing blood vessels. My doctor brushed me off and told me that I was overreacting. Years passed since that appointment and I avoided going back to see him with any of my symptoms since I figured it was all normal. Then sadly he passed away and I was without a family doctor for about year while they figured out which patients were being transferred to which doctors. By this point I was twenty, ten years since I first reported my chronic pain, and the idea of having to explain my symptoms all over again to a new doctor was daunting so I put it off. I put it off and just managed my normal symptoms alone by taking over the counter pain killers and avoiding anything that would trigger my head. Until last year that is. When I was twenty I noticed that my lip had begun to twitch at certain points but I dismissed it as just normal twitching. At age twenty-one I still had the twitch and it was getting worse, it had begun to last for longer and was more pronounced. I started to have what I have decided to call "Episodes" where my lip would twitch to the point where it would no longer be under my control and I would have a strange feeling in my head. My co-workers at the time called it "stroking out" when it would happen at work and they threatened to call an ambulance more than once out of fear that I was actually having a stroke. I reassured them that it was just a twitch and that it was normal. However, I began to think about my symptoms harder and reevaluate if they were indeed normal for a twenty-one year old. I kept putting off going to see a doctor, fearing that they would just say that I was overreacting again, or chalk it all up to stress. I put it off until I had an Episode so bad that I had to leave work and drive myself to the hospital. My lip had began to twitch and the muscles were now cramping and not letting my lip rest normally. It looked like I was doing a "duck face" but not intentionally and it hurt so bad I was in near tears. A migraine then started and I ran to get my phone.  I was not able to speak clearly and texted my boss to come in an replace me. As soon as my replacement arrived I drove to the hospital and was fast tracked, as they feared I was having a stroke. Once inside an exam room I was asked a bunch of questions and they ran some basic tests to see if I was having a stoke. I was not. The doctor at the hospital gave me a literal handful of medications, both pain killers and muscle-relaxants and put me on an IV line for fluids. It took another hour and a half for things to go back to normal. The doctor then told me that I was to book an appointment with my new family doctor as soon as possible. That was in January 2019, mere weeks after my twenty-second birthday, the start of my twelfth year with my pain symptoms. I met with my new doctor and he listened to my symptoms and seemed to be worried that nothing had come from the past tests and that no one seemed to know what was wrong. He then asked if I was sexually active and prescribed me a birth control. Now birth controls have some nasty side effects and are not recommended for women who have a history of migraines, strokes, or blood clots. So I thought it was weird that he prescribed birth control during an appointment that had been made due to neurological issues. Not only did he prescribe hormonal birth control but he prescribed CBC (continuous birth control) which would make it so that I only had a period every three months. Now there are lots of different studies about birth control and migraines with some different outcomes. Some say that it is safe and others say that people who experience migraines should not take the pills. I decided that I would not take my pills for fear that my symptoms would worsen. 
My new doctor then sent me for more scans, repeats of the scans that I had gotten years ago, CT scans with and without iodine for contrast. I go to do blood tests first and then the hospital was supposed to called and schedule the scans. That was in January and I didn't get the scan until late March because the hospital had lost my referral and never called me for my appointment. Once I got the date for my scans I was relieved and went in knowing what to expect. I was heartbroken when I was told that they would only be doing one scan without iodine and not both of them because "the radiologist doesn't think it's needed for your case." Some random person who I had never met had decided without consulting me or my doctor that I didn't need a scan. I was furious but decided to trust the hospital and get the scan, so at least that way I would be able to bring something to my doctor. I get the scan and am given more excuses about how I don't need the iodine. Lots of "it's okay sweetie, I get headaches too" and "I am sure it's nothing", words that were meant to comfort but did anything but. I knew at that point that something wasn't, isn't, right. What is happening to me isn't normal and they are not just headaches, headaches don't happen daily. I am not supposed to feel joy when I have a pain free day, I shouldn't be avoiding hanging out with friends because it might trigger an episode. I am twenty-two and my pain is not normal. 
So I go back to my doctor's office and I speak with the Physician's Assistant about not getting both the scans done. She is mad at the hospital and reassures me that she will send another request as soon as the results from the first scan comes in. A week later I have an appointment for another scan, the one I should have had in the first place. I go in for this scan, ready to finally get this over with so that I can figure out what is wrong with me. I get called in and as I am walking to the room the technician mentions that it will only take five minutes, I stop and ask if the scan is with iodine. She tells me it is not and that the referral didn't mention iodine. I refuse to get the scan done (again) and leave fuming mad.  That was earlier this month and I have been trying to contact my doctor's office to speak to someone about the scans. Someone is lying to me about what is going on, since the first scan I was told the radiologist vetoed the iodine request and the second time (same exact request form) I was told my doctor didn't request iodine. So far all I have been able to do is make an appointment with my doctor for mid May to discuss the scan and see if he can give me the correct referral, or at least sort out the mess at the hospital. I have been trying to get these two simple tests done since January 2019 and now it is April 19th 2019.  It has been twelve long years of trying to find out what is wrong with me, an it isn't over yet. 

Now why do I think that the reason why I have not received proper care and treatment is because I am female? Because my pain was dismissed as something to do with my menstrual cycles, I was told flat out that my pain was not as bad as I said it was (with literally no proof that I was indeed exaggerating), and most of my symptoms were greeted with a "don't worry sweetie it's normal." Also when reporting my symptoms my current doctor thought that it was more important to cover birth control options )as I am a twenty-two year old sexually-active female) than it was to address my chronic pain. If I had been a cis-male I am confident that my problems would have been more seriously looked into as there would be an absence of menstrual cycles, and my pain would have been taken more seriously. There is an amazing article in Reader's Digest (May 2019 print edition, page 28) titled "Why Women's Pain Is: Dismissed, Undiagnosed, Undertreated" written by Jill Buchner that explains why women's pain is often over-looked while male pain is treated promptly. I also believe that if I were a cis-man that my migraines would not have been chalked up to stress, nor do I believe that my reproductive health would have been as aggressively brought up during an appointment that was about a neurological episode I had sustained. 

I will keep you all updated about my health condition and let you all know how my appointment goes on the 13th of May with my doctor (my bet is that the first thing he brings up is the birth control pills and my lack of taking them).

Until then I wish you all the best of health,

M. Alice