Posts Tagged ‘patient’

hysteriaHysteria: A Surgical Fantasy was made for Dames Making Games Feb Fatale 3 Killer Interfaces in 2015. It is a part of a series of art works about my experiences as a patient. It was my first finished Construct 2 game, and my first controller. It is a crocheted uterus and fibroids, with a knitted endometrium layer. Fibroids are tumors that grow in the uterus. (Note: the Uterus is not to scale, but the fibroids are to scale.) Wire is woven into the fabric to create a giant circuit. It is a prototype based off the board game Operation with a tablet interface to view your score and ending.

Fibroids can be placed in various Velcro areas,  including pockets to represent my understanding of submucosal fibroids. I’m told that cutting the fibroid from the Velcro results in a very visceral sound that discouraged a few players because it was a little too much bodily horror.


Players are given real surgical tools  (scalpel, hemostats and forceps) which are connected through wires to a Makey Makey. If the tools touch the wire woven into the uterus, it connects the circuit and the patient suffers damage, lowering your score and eventually botching the surgery. This game over is represented by a LEGO surgeon burning medical records in a recycling bin with the caption “This never happened.” The goal is to remove the fibroids while touching the uterus for the minimal amount of time.

The score is represented by a stop motion animation of red LEGO bricks which represent blood loss. 2016-12-28


Your ending is determined by your score. The lower score, the better story scene, the higher, the worse scene.  All of the LEGO stories are from my heavy menstrual bleeding and fibroid treatment. These range from some of my worst stories, such as the image above which is about me trying to explain how much pain I am in, no one believing me, and my post op nurse telling me a joke to soothe me while I am hyperventilating.  It turns out I am resistant to painkillers and general aesthetic. I did tell the anesthesiologist this resistance runs in my family before my surgery, but I guess he needed to prove me wrong. I was painfully right.  Another is how the operating table was set up wrong when they wheeled me in, the earlier ones are typically times when my treatment was decent.



(C/N – medical error, suffering helplessness, loss of bodily autonomy)

(I also use a bit of medical jargon to list procedures.)

I became fascinated with fibroid removal surgery when I needed mine out in 2012. I watched laparoscopic, open laparotomy, hysteroscopic surgeries. I was told about endometrial ablation, Uterine artery embolization, robotic surgery, hysterectomy,  etc. I wanted to pick the perfect surgery for me. A Fellow explained an open laparotomy to me, which I explained to him what I had watched and that it seemedsoopink a little too much with like a 10 inch opening.

The Fellow and I discussed that I didn’t want to use the fibroid shrinking drugs**. They make the surgery easier because the fibroids are smaller. I didn’t take them because short version: Bad side effects (depression, menopause, mood swings, increased sex drive, hair loss, hair gain, etc) and too expensive. The Long version could be an entire essay.

I picked the laparoscopic surgery as that is what my surgeon was famous for and it had the shortest wait time and recovery time. I was promised I’d be out that evening and back at work in three days. I felt like I had picked something that was good for me.


But, the surgeon misrepresented what he did. He told me it was laparoscopic, with two incisions instead of three. He needed a bigger second incision for more elbow room, and I didn’t think the one inch he gestured was a big deal. He implied there was a second hole in the belly button for the camera, but there wasn’t or at least I didn’t find it. He didn’t switch because I didn’t take the shrinking drugs, he actually doesn’t do laparoscopic surgeries, whether he stopped because morcellation has fallen out of favour, I don’t know.  What he actually does is single incision mini laparotomy, which is closer to 4-5 inches, rather than the 1 inch we agreed on. ‘Out that evening’, really meant a two night stay, and back at work, well, I took two weeks off… Later I found he wrote mini laparotomy on all my records, but in the visits he always talked about a laparoscopic surgery.  A Mini laparotomy comes with a different set of recovery times and complications (it can be similar to a laparoscopic surgery), all of which I was uninformed of and was never entirely explained until 8 days before my surgery, rather than the three months when we agreed. His excuse was that it all was just an incision and I was making a big deal out of nothing. He told me he couldn’t give me an estimate for recovery or really any information because he didn’t know (this is when you drop your surgeon), I would apparently learn when I woke up. A nurse would tell me I’d need 6 weeks off, why she knew and he didn’t, I don’t know.

I had waited for 8 months due to various mistakes, I agreed to a surgery I didn’t want because I had 26 -28 day period (This means I had 2-6 days of non bleeding), where I would lose a liter of blood on day 2 and it would leak out of me for the other days. I was in constant pain because of cramping (as result of a mistake) which the fellow compared to a similar pain as labour. I was afraid I would die from blood loss if I waited longer. I already had mini strokes and possibly  two micro heart attacks from anemia, so worrying about dying or going into hypovolemic shock wasn’t illogical. I agreed to this surgery, because I couldn’t face another 8 months.  (I have a lot of thoughts on this, but those can be separate papers. )


Actual advice I received from a GP.


It was my body. I had the right to be informed about my choice. I wasn’t. That was taken away from me. It made me feel like my body wasn’t mine. My say, or my life didn’t matter. I don’t even refer to it as mine in the present tense, which means I still feel that way.

People argue with me about this and say well it saved you, so you should be glad. They helped you, you should be grateful. Doctor’s have stressful lives. “You are the 1%.”  I know doctors who yell at servers because they got the wrong salad dressing and I apparently should be grateful for having a surgery  that permanently changed my body that was misrepresented.  I should take solace that because it’s uncommon or unusual, it’s acceptable. I’m just insignificant collateral damage. Those thoughts weigh on me.

At one point I intended the game to be educational to allow patients to understand the surgery. To feel in their hand what was being removed. To see what had grown inside them. To be a participant in their healthcare rather than an unconscious non-person that their healthcare provider talks over or gives a lesson to their students rather than explain to person this is happening too. I’ve read a lot about shared decision making and patient engagement and I have a hard time believing it exists. This was an attempt to put myself as a patient back into a position of power where my body belonged to me.


I use to be an engaged and excited patient. I wanted to see my own uterus. I wanted to see and touch those fibroids. I wanted to excel at being a good patient. I exercised and ate right to make myself healthy as I could be for surgery. In the beginning it was fascinating story.  The scientist in me loved the idea of medicine. I had surgical fantasies.  It was gonna cure me, and my life was going to be better. I don’t have that idealistic view anymore. What I didn’t know is that surgery changes you. Sometimes for the better, other times it’s for the worse, and other times it’s a lateral switch from one form of suffering to another. Healing doesn’t take six weeks, it can take months or years. Now I’m terrified of all of that stuff and deeply distrust medicine. The entire process drove me ‘mad’. I ended up with PTSD, which in the past was known as shell shock, or in women, hysteria…

Did it work? I’m still a bit terrified of my own creation and only recently started to negotiate possibly trying a new treatment, but I still don’t believe what the doctors tell me. I’m not anti-medicine, it’s just hard to trust people who have performed the wrong surgery on me, let me be awake, basically consistently offered the wrong treatment, humiliated and shamed me,  performed the wrong tests, breached my confidentially, appended my medical records,  fed me the wrong medication, etc and generally treated me like human garbage. As I have said on a committee, I’m not a success story, you don’t get PTSD because it went well.

I made this game an open surgery, so I could redo my own surgery over and over. This terrifies me and fascinates me. My hope was that eventually I could have the choice I didn’t get or at least reprogram my brain to not think about it all the time. That maybe if I was better fantasy surgeon I wouldn’t have all the side effects I have now. If I was better imaginary doctor, I wouldn’t have been awake.  That I could finally have power over my own body and so I could finally see the thing that caused me so much suffering. And maybe if I could trust someone else do it, that maybe one day I could get the correct surgery.



I’m still unimpressed by the medical students and doctors who don’t know what a menstrual cup is and seemed to be grossed out by the idea of it.

** I didn’t get a hormonal IUD either because first I was told it would save me from surgery, I was stupid to want surgery, they wouldn’t do surgery on me, then I was told the IUD wouldn’t do anything, that I needed surgery, surgery was my only option,  and that they didn’t put IUD into childless women, and then again told I didn’t need it, and then told later I really needed to get that IUD (all of this from the same office by the surgeon and one of his residents)…. it’s hard to make a decision when you get conflicting information.


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Copied from my Facebook

Nov 17 is the closing date for feedback on this draft for heavy menstrual bleeding (HMB). Canada has an usually high rate of hysterectomy and patient care is very inconsistent for HMB. You lived experience, advice could go on to change the lives of millions of patients.

You may share this status.

I was one of the patient experts on this draft.

I am not an HMB success story. I was treated for it. It took 6 years for me to get help for the issue. Along the way I was shamed and humiliated. I spent years bleeding though pads, menstrual cups to the point were I ended up with regular mini strokes from anemia and what I think might have been a micro heart attack. I was 29. While waiting for surgery I spent 8 months with a 26-30 day long period, (I had if I was lucky 6 days off) where I would lose about a liter of blood over that period of time and 70% of it on a single day. I ended up with PTSD from my symptoms and terrible care. I was treated like I was over reacting. My case is also complex because part of my care was interrupted by a medical error, which no one wanted to acknowledge.

This standard will give patients options to control their bleeding while they wait for surgery. I proposed a self assessment tool because sometimes if you’ve had it for so long, or your whole life you might not know until you are anemic. (The self assessment tool is not included, but do mention it the feedback because if it’s demanded they will make it) These changes will help millions of patients.

Please, your thoughts will be helpful.

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This coming week is Patient safety week.

I started to post my advice under the hashtag #asklistentell

Here are some of my tweets, yes I did see the spelling errors after I hit tweet. Embedding tweets doesn’t seem to work, so I’ve pasted them as they appeared.

Patients ask questions. Doctors Listen. e.g when I tell you that resistance to anesthetic runs in my family, don’t be surprised I’m awake

When I tell you about my heavy period, maybe don’t advise I get pregnant right way.

When I tell you I won’t remember to take BC pills everyday, maybe offer something else like an IUD or depo provera.

Patients if you doctor refuses to answer your question, interrupts you, to tell you to “trust me”, Get a new doctor

If you are scared to ask a question, bring it in on a piece of paper and bring a recorder to save the answer.

If you’ve been teased or are dismissed, get another opinion. e.g I had a gyno laugh in my face about sexual pain.

The best appointment I had, I was prepared and had researched what I wanted. ‘s standards are useful information.





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