Author’s Note: I feel it’s relevant today to start off with a bit of a trigger warning. I am going to write about the frustration I have felt over the years being a female patient in America’s medical system. This will include descriptions of some of the abuses some of these doctors have done as well as at points talk about “female problems” i.e. hormones, menstruation, and oral contraceptives. But if you can stomach all that you can join me on this journey of discovery and healing. If not I’ll still give you a heads up to the paragraphs you may wish to skip.
Lately my fatigue has been so bad it’s been wrecking my focus and really altering what I am capable of accomplishing during the day which was already pathetically small amount. I noticed I had stopped going out because I couldn’t stay awake and focused for long enough to really drive anywhere and all the things I was doing to keep myself engaged in life and my brain stimulated were also falling one by one along the wayside. And as a result of my world getting smaller and smaller I became quite malcontent. Something needed to change so I took a quiet moment to myself, took a deep breath, and accessed how I could move forward in life again.
What I came up with was an uncomfortable solution. Maybe it was time to try searching for answers again in a place that I had learned to massively distrust – the medical establishment. I’m not one of those crazy antivaxxers or conspiracy theorists, I’m just someone who spent their teen years being told I was crazy by specialist after specialist after specialist when they couldn’t immediately diagnose my very real physical problems. I get it. I was a teenager. With ovaries. And probably all sorts of confusing emotions. I can see how that could completely fuck up scientific testing and thought. Female hysteria is some sort of dark magic the last time I checked but really… it’s pretty psychologically damaging to be constantly invalidated and accused. And to top that off by the end of my little run they were trying to trick me into taking anti-psychotics by telling me they were antibiotics. Obviously there’s no record of this because that’s completely fucking illegal and I’m sure they didn’t note it on my charts but Jesus Christ, Google was a thing then! What did they expect would happen, I’d just take mind altering drugs without a single question and suddenly be OK?! I flipped out on my mother, tossed the trash bag full of experimental drugs they were testing out on me, and refused to go back. By then I was an adult and no one could force me.
To say I have some trust issues and severe doubts would be a massive understatement. However it’s been at least fifteen years since I have gone willfully to the doctors on my own accord without some emergency or bureaucratic necessity to do so. This was a big step and one that came with a walloping dose of anxiety but I’d heard people speak highly about this particular physician as he was a holistic immuno specialist who’d diagnosed three different acquaintances with things like Lyme and other rare weird ailments. It had to be worth a try.
If I’m honest it took me over a year to work up the courage to call and oddly, even though there’s normally a six month waiting list, I got in two weeks later. It was too short a notice to get all my medical records together which are apparently on microfiche somewhere and in addition to this I learned my insurance would not be covering any of it should I chose to go through with it. This was going to hurt financially hardcore. The initial visit, with no tests or anything would be $440. Later I’d learn some of the blood tests were up to $500 a pop. I was already balling my fists in anticipation.
I decided I would just have to do it anyway and so off I went. Everything seemed to go wrong that morning. I forgot my cash in advance, embarrassingly had to borrow my mother’s credit card (I brought her for emotional support this first time around) and the GPS decided to fuck around and add an additional half an hour to my drive. It was morning and I was a fucking mess anyway, getting there five minutes late was not helping!
Still. I got there. And I got in. And I tried my damn best to remember what the hell I was here for. I feel like I did a pretty shit job – between it being a stressful morning and the fatigue I feel like I may have stumbled and forgot a lot. OH WELL. It was going to have to do. The doctor listened intently to everything I had to say, wrote a lot of notes, asked a lot of questions, and seemed genuinely interested.
What I was not expecting was that he was so intent to know what was going on with my hormones. He asked if I ever had a hormone panel done. Nope. The last specialist I chose to see was a hormone specialist (endocrinologist) and she refused to even take a drop of blood from me. She wrote me off and sent me home without doing anything, and as crazy as it sounds I think she did so based on her forming an immediate dislike of the flamboyant way in which I chose to dress that day. If you think male doctors are the worst try going to some of these women doctors and adding a heap-load of judgement on top of their diagnoses.
Today’s doctor expressed annoyance that I had been tested for so much shit and yet some of the simplest damn things – a hormonal panel and food allergies were not done at all. I shrugged. What could I say. In the world of merchandise the customer always knows best. In the world of medicine the patient would always come in second fiddle to the doctor’s own ego. That’s just the way it goes.
“So no one has linked any of these issues together?” Nope. And I had issues throughout my entire digestive tract – My esophagus was inflamed with EOE, my stomach was slow to empty for no apparent reason, my gall bladder made stones so bad it had to be removed, my liver tossed in Gilbert’s Syndrome, my intestines were the part of my body I have been complaining for years are what hurts (but intestines CAN’T hurt!) and this wouldn’t be complete with a touch of IBS from the other end. How can all these things be separate?! But he wanted to know more – what about those knees that have been KILLING me this year, what about all those other achy joints. Fuck if I know. Probably a separate issue… but he even so he seemed to think the hormones could be linked too. NO ONE HAS EVER SAID THIS TO ME. And yes, I have been asking about it!
In fact I was stupefied by the next spiel because without me asking he answered every question I ever asked my gynecologists without getting a real fucking answer. So here’s the too much information paragraphs (two) of this article – feel free to skip them! Basically all the women in my family have had HORRIBLE menstruation, so bad that everyone older than me going back three generations have eventually had to get hysterectomies. Think super irregular periods, clots large enough to look like alien life forms, cramps that include everything from the bellybutton to the knees. Just real nasty shit. That’s why when I got my first period it was less than two years before my mother brought me to the gynecologist who put me on The Pill. I was on it for years. Being on them was almost as bad as being off them. I got fed up, asked for other options, was told they were still the best so after taking them for more than half my life I just stopped, flushed them, never went back. I do not regret this decision.
“Being put on oral contraceptive is one way to deal with it.” I looked on a bit stunned. According to my gynecologists that was like the holy grail. They acted like I was insane to want options. “It takes the ovaries out of the equation, tells them to stop doing their job for a month at a time but I find a lot of these women have uteri that do too good at their job. Because of too little progesterone in their system their uteri create too thick of a lining which means clots and cramping.” He thought I was deficient in progesterone and had too much estrogen, something my gynecologists kept denying – and in fact kept treating in the exactly opposite manner by feeding me more fucking estrogen in The Pill. And yes I fucking asked. You know, I never had faith in male doctors dealing with any of the women’s issues but… this guy may have changed my opinion on that! He suggested a hormonal panel be taken during a specific part of my cycle and said I could try over the counter progesterone cream that, “Might even help with things like insomnia and anxiety” (two thing specifically didn’t mention I struggled with. Was trying not to look like the nutcase my medical files claim me to be.)
He then said I needed to get a ton of food allergies checked out. $15 per test unless I could get my regular physician to order it. I opted for that because with this came a test for Lyme that was $350 upfront, $500 if I paid after the blood was sent in. So now I have to go find a doctor in my home town that’ll play ball… believe it or not this has been an issue in the past. Doctors don’t tend to like it when you walk in asking for specific shit. I don’t know what else was on that paper – I haven’t been able to look at it yet.
He listened to me talk about the horrific assortment of birth defects that I had with animals I had tried to breed over the years, actually fucking listened. He didn’t know what to say about it but he at least didn’t pass the buck like every other doctor, veterinarian, and environmentalist I mentioned this too. Cleft pallets, deformed limbs, infertility, hydrocephaly, exencephaly, cyclopia… you name it! He asked what I thought was causing this. Well…. there’s nitrates in my tap water and I wouldn’t doubt if there’s mold fucking everywhere… One thing at a time. He said we’d wait to see what the hormone, food allergy, and lyme test said before moving on to harder things… i.e. mold. I’m OK with that. We discussed the idea that everything might be related… or might be separate but it was too early to tell. This guy spoke with a flattened affect and a deadpan expression like I used to back in the day. Back then I loved this way of communicating, now that I have learned to be more socially normal I found it slightly irritating (as there were no tells as to what he could possibly be thinking, I’d have to actually just take his word for things. The horror.)
I was then sent home with some B-12 shots, a kit to take a stool sample to test gut flora, and a stack of blood test orders I’d have to organize. At least those came with today’s note to help me convince my regular doctor when I find one. I was to come back in a month and speak to someone else here to let them know of my progress, but only if I had lab test results from the blood tests, and in six months I could see the same doctor again to see if anything more needs to be done. WHEW.
This may be a long haul. It may drain me more financially than I am really capable. And in the end it may not accomplish anything. I could be diagnosed with nothing yet again or I could be given a diagnoses I can do nothing about. It’s all possible but I continue forward in the hope that I can find something from this experience to help steer me in the right direction. I am not foolish enough to be looking for a cure but I’d be happy with something that can at least ease some of these symptoms so I can get on with my life. I want to get back to writing, traveling, sculpting, drawing comics, moving forward… all the things that make my life worth living! And all the things that might get me out of this fucking Love Canal house!
And that’s been my day. I went home and was EXHAUSTED. I hit the bed and scarcely moved afterwards, before finally falling into a nap. Currently it’s bedtime and I am shocked and pleased I was able to write this all out in once stretch (which has not been the pattern these past couple of weeks – maybe it’s the B-12 kicking in…)
If you’ve read this whole article I must say congrats! And thank you for taking this journey with me!
All the photos included here have been taken by me.
