Disney menstruation movie

Enjoy!

Pressure

"Ok, you're here for an ultrasound, to re-evaluate the cyst?" the woman at my gynecologist's office asked me. I told her yes.
"But the pain's been better, right?" she said.

It's times like this I want a needle scratch sound effect. There was nothing in my history with that office since my last appointment, or in that day's interaction up to that point, which would suggest resolution or improvement of my pelvic pain.

How do you respond to that?

A timely article

Since I was just writing about compliance (to medication regimen), Medea, and Large Marge, this seems to be an appropriate reading for the day. I'm supposed to be writing a lecture on hypothesis development and testing, but ow.

And my attention is less than razor sharply focused.

I've gotta say, after looking over the abstract, I find myself quite curious about the "pictorial blood loss chart" used in this study.

Also, I can't help wondering - where's the imaging man? Here I am looking at stuff on muh-muh-muh-My Mirena (see, it's not just the Macarena it fits with - it's a quite musically handy word) and finding a long term study on side effects of the blasted thing and it seems they didn't collect data on ovarian cyst formation in women using The Device.

Can I get a hearty wtf?

BYOF

According to my GYN, the ultrasound was read wrong. Or done wrong. Turns out it wasn't Medea after all. It turns out this cyst is on my right ovary. And so I need a new name - Large Marge.

Marge is big and the whole thing is displaced, now sitting behind my uterus (which is, on account of it being tipped backwards, sitting on top of my bowel). I can't imagine there's much room back there. Poor gals. They're all crammed in like sardines in a can, like clowns in a car, like adjunct faculty in a storage closet turned office.

We'll look at it in one month, says my GYN, and at that time we can decide what to do. "In that case," I told him "I'll save my barrage of 'why do I keep getting these friggin cysts?' questions for then."

What's the lesson from this? BYO Films and not just the report. I think I knew this already, but as with so many other lessons in life, I have a less than steep learning curve.

What I need

I never, ever imagined there would be a point in my life where I'd be wishing for hemorrhoids...

I got a call from the GI doctor's office with my results of the various scans - probably Medea and not much else is my guess. The call came right in the middle of the second two hour lecture I was giving today, which ended at about five PM. Yes. Of course. Hey, at least it wasn't Friday.


I realized while I was thinking about the above and my health in general this evening that what I think I need most right now is this...

...because you can never have too much "Box of Kittens"


Update: Medea has been declared a 4.8 cm simple functional cyst who needs attention in the form of more pictures in something like 6 to 8 weeks. I can't help wondering if my mirena should be implicated as a suspect in Medea's recent waxing.

Also, now that I've written the phrase "my mirena" I have the Macarena song in my head... "Aaay, my Mirena! Yikes!"

While I'm on the topic of a medical remix of the Macarena, do you think the scrubs the guy's wearing in this macarena tutorial are a fashion statement or an indication of his profession? The digs, foolishness, and time for the recording certainly help make the case for 3rd year med student.

ready for her close up

Medea just can't get enough camera time it seems. There she was, a big round dark blob on the ultrasound image, now essentially the entire ovary which is a bit of a new look for her. She needs to go on a diet.

I'll wait for the report before jumping to any conclusions about the ovary to Medea ratio. From what I understand, round, dark, and regular is good - well good as these things go. I'm having this all faxed to the GYN and I'm seeing him in two weeks so we can talk about Medea and her recent enlargement then.

I gotta say, the folks at the imaging facility I went to for the CT scan and ultrasound were really nice. Aggressive prep aside, they were genuinely pleasant and human. Always a good thing.

my little "friend"?

I think I should name the cyst on my left ovary. "M" names spring to mind. Martha? Or maybe Medea, seeing as it's caused me some trouble. Yes. Medea it is.

I suspect Medea's at it again. I had a pelvic and abd CT on Wednesday because, well, because I'm bleeding. Very lower GI bleeding in fact. Oh ok, I'll stop pussyfooting about. I've been bleeding out my butt and not a little. I can't imagine how that must be for guys who bleed out their butts. As a woman, I am somewhat used to seeing that much blood in the toilet now and then. Granted, knowing that it is coming from the wrong side is problematic, but I imagine the whole visual would have to be more shocking for a man. At the insistence of my new primary and my sister, I finally made an appointment to see a new GI doctor. They seem ok.

The rectal exam showed no fissures and no 'rrhoids (as a friend of mine used to delicately call them), but I had a very painful external pelvic exam. This is not unusual, I explained to the nurse practitioner who did the exam. I've been having daily pelvic pain for a couple of years now. I wear lose pants and skirts. It helps. And providing it's not the dropping me to my knees pain that sometimes flares up, I can deal more or less. Currently, I am assured as I settle into my IUD, I'll feel better. It's better, but it still hurts.

The nurse at the GI office was feeling a little uncertain about the pain. I don't think my adding in things like "hey you have diarrhea every day for 2 years, you're probably gonna bleed out your butt" reassured her.

I was really expecting the CT to be negative. I truly was a bit taken aback when the GI doc's office called on Friday (of course on Friday) to tell me that the GI doc wants an ultrasound for a "pelvic cyst". I said "Uh, is it gynecological?" The woman on the phone was evasive.

While I am not 100% satisfied with this response, I do understand the need for it. Imagine if the call had gone like this instead:
"Hey Ms. Hygeian, this is GI doc's office calling. Your CT showed a pelvic mass. Oh don't worry, it's probably not a tumor but the doctor would like you to have an ultrasound to make sure, ok?" That would alarm most people. And I get that.

However, if this is Medea, I don't think we need to give her more face time than she's already gotten. She's been there for a while. Medea's been such a pain in the ass, or rather side, that at my pre-lap appointment in May, I told my GYN to please take the whole friggin' thing, ovary and all, if it looked even a little ugly. I was told they like to leave as much as they can, the whole thing if possible. Apparently Medea didn't look too ugly to them, and so she remains. At several pelvic exams before and in the one since the surgery in June, someone has always remarked "hey you've got a cyst on your left ovary." And every time I say "Yes, this seems to usually be the case..." (or similar).

The lack of alarm from the GYN people seems to suggest that Medea is nothing to be concerned about. Right? Not that I know it is Medea, but I do strongly suspect it is. I think I also hope it is. Because while the diarrhea and pain suck, the thought of a mass which is not Medea sucks a lot too. I do realize that telling myself it is Medea is a way of making myself feel better about that concern. I'm quite aware of that. But I'll take my strange comforts where I can get them.

Medea has freaked some folks out in the past. I had a pelvic exam many many years ago at a primary care doctor's office. She felt Medea and sent me off for a stat ultrasound. Within minutes of the exam, I was careening down the highway chugging as much water as I could get in.

So when I asked "Is it gynecological?" on Friday, I was asking "Is it Medea?" because I'd like to put them in touch with the GYN if it is and they can chat about whether or not I really need this ultrasound. Because ultrasounds kinda suck a bit, and really, who needs unnecessary suck? Not me.

While all the online stuff says ultrasounds are not painful, I think that they should add the caveat that drinking and holding that much water for an hour is at least quite uncomfortable. Add in a cold waiting room and it can become painful, not necessarily highly but quite unpleasantly. It's going to be a lot of water. This imaging place has very ambitious preps. I am to drink 48 ounces of water an hour before the ultrasound and hold it until the exam is over.

So....we'll see on Tuesday. Or rather, they'll see on Tuesday. I'll probably know on Friday (again).

pain in the ass

I read an interesting post over at Musings of a Dinosaur called Drug Seeking in Primary Care. In it, the writer discusses encounters with different types of pain med seeking patients. He makes an excellent distinction between "the patient legitimately seeking to form a new doctor-patient relationship for management of a chronic condition requiring controlled substances" and what are traditionally called "drug seekers" (but which more properly could be called "drug scamming addicts").


While looking over the responses to his post, I came across Cathy's Place, and her recent post describing a visit to her doctor's office where they had recently hung a sign in reception stating "Do Not Ask for Pain Medication". Cathy's initial response to the sign is similar to what I think I myself would experience were I to find myself face to face with such a notice. Reading her post made me consider how pain has been handled in my medical history.

Here's a patient perspective on just some of the problems presented by "drug seekers" (that is the "drug scamming addicts" kind). They take up time and resources which should more appropriately be used for patients who have a legitimate medical complaint or concern. Their habits, narcotic and interpersonal, can serve to establish or confirm any underlying health care provider approach of doubt or suspicion of patient complaints and patient interactions. In short, their behavior creates risks for compromised care of all patients.

But Cathy's post raises an interesting point. Given the acknowledged dangers (for providers and patients alike) of creating or feeding a narcotic addiction, it seems the general tendency would be towards caution - either zero tolerance type caution of a type the "Do Not Ask for Pain Meds" sign suggests or sensible discretionary caution, as seems to be described on Musings, where long term pain medication can be approved but only in limited circumstances, such as when a continuing, confirmed painful condition cannot be otherwise treated. And yet this is not the case. Not by Cathy's experience and certainly not by mine.

My own recent experiences with this come from both outpatient and ER care. I'll go with the ER one first.

I have migraines, had them since I was in my 20s. They had been mostly menstrual, and I had been taking Frova in what is apparently an off label manner premenstrually to keep them at bay. Last summer, they changed in frequency coming any old time of the month and sticking around for days. I made an appointment to see the doctor for a reassessment, and he increased the frequency of the medication. Then they changed in character. In addition to the photophobia and over sensitivity to sound, I had tingling in part of one hand, near blindness in one visual field of one eye, some creepy cognitive changes, and one episode of vomiting. I took my migraine meds and rested, waiting. It seemed to abate some a few hours later, so I got up and started making dinner. The usual dull rotten feeling of the pain came back and brought with it a novel sensation of a series of sharp lancing pains in the occipital/temporal area which were so intense they left me gasping for breath. I went to the ER. I went because I have the misfortune to have studied stroke patient case histories in my grad neuropsych courses, I'm over 35, I smoke, and I have a family history of cerebral vascular disease. Hence, I felt the smart thing to do was to make sure this wasn't something worse than a migraine.

In the ER, I got an IV, and antiemetic, and an offer of pain meds. They offered morphine I think, but remembering something about this possibly raising intracranial pressure, I asked for something else. I can't remember what they gave me, not morphine but possibly also not something which was a non-narcotic. What I didn't get was any imaging, which I found a little troubling.

Then there's the GI doctor. Good old fired GI guy. I came to his service under one of his colleagues after diarrhea and post-prandial intestinal cramping cost me about 20 pounds in less than a year. For a while, levsin and loperamide got the symptoms controlled enough that I was finally digesting the food I ate, regaining weight, and not in so much pain. Then the symptoms started getting worse again. I started losing weight. I went for a re-evaluation and ended up with the now fired GI guy. Fired GI guy's response was to prescribe Ultram. "Isn't that addictive?" I asked. "Oh no" he assured me.

Meanwhile, he worked me up as if I were a 50 year old man and found nothing which would explain the symptoms. Had I remained under his care and his recommendations, I would have been taking Ultram for the pain, a higher dose of loperamide and levsin for the the diarrhea and apparently quite rapid transit of food through my gut, something else for the nausea that I inevitably had when on a higher dose of levsin and loperamide, and possibly another drug for to increase my appetite so I would want to eat more even if eating anything caused pain and nausea.

Now to me, these treatment plans and decisions don't sound like they come from people who are worried about perhaps unnecessarily creating a drug seeker. The ER doc? How about a head CT? I know at the weetiny-ville community hospital I went to that night they may not have been able to do an MRI that night, but a CT could have happened. Instead I got "treat it and beat it". The GI doctor never took into account that endometriosis might have been causing or exacerbating an underlying irritable bowel. Rather than allowing himself to think of my whole body (or even proximal organs) in an attempt to find (and treat) a probable cause for the symptoms, he retreated to a diagnosis where the only option is to treat the symptoms.

In both of these cases, I went in looking for answers, looking for identification either to rule out something terrible or to ultimately (hopefully) treat of the cause of the symptoms. In both cases, happy drugs were the only answer I was offered. Sometimes the only choice is between the lesser of two harms - harming someone by allowing chronic pain to go unchecked or harming someone by making them dependent on a narcotic. This choice should be a last resort, one weighed only when other means or options have genuinely failed.

What I'm realizing in thinking about these cases in the context of the drug seeking patient issue is that too many times I've not had the assistance of doctors in ensuring that we've exhausted the other options. I've managed to skirt treatment which could result in my being labeled as or in my becoming a drug seeker (in the nicer or less nice sense) only by being a total pain in the ass - that is only by insisting on a higher standard of practice than these doctors were willing or able to give.

Gynecological diagnosis III

Continued from Gynecological Diagnosis II

The gynecologist I saw in 2002 specialized more in ob than gyn. After the lap, she told me she had left several sites of endo during the procedure. She told me she did not feel confident attempting removing them, particularly the one on my right ureter. She put me on birthcontrol pills, said to come in for a follow up a few months later.

A month later I called to talk about trying a new pill since the ones she prescribed were giving me morning sickness (no really). I was told she had left her practice.

Soon after that, I caught Lyme Disease. Bad luck and geography conspired against me I suppose - I had just moved to a county with the highest per capita Lyme rate of my state. I had the big old bull's eye rash and all. I mention it because it becomes relevant.

I eventually found another gynecologist through word of mouth and MUCH internet research. He does not do obstetrics, which was what initially interested me in him. I saw him in late January of 2003.

We tried progesterone, but to everyone's immense surprise, it gave me breathing trouble. At the time we didn't know it was the progesterone doing it. No. I had no idea it was even a possible effect of the medication, although I recall thinking once or twice "hm, that started in February, and I started the progesterone not long before that". But the breathing problem had not started suddenly. It came on gradually and worked its way up to where I could not talk or walk more than a few feet without feeling like I couldn't breath. I felt like I was drowning, like I could take breaths but wasn't getting enough air anyhow.

The chest X-rays showed "mild hyperventilation" and that was it. The new PCP I had dismissed it. I use that word a lot in this, I know. But it is an accurate word. Dismissed is what I felt, and dismissive is how he was. He knew I had had Lyme Disease, and I think - even though I showed him the picture of my rash and the western blot results - he approached me with caution because I continued to complain of fatigue, headaches, and strange pains in my hands and feet. It never crossed my mind these were symptoms of Lyme. I had in fact asked him to check my thyroid level since all three of my paternal aunts had thyroid disease. I figured fatigue, you know, could be thyroid. What I certainly wasn't thinking was refractory Lyme, or post Lyme, or chronic Lyme, or anything Lyme. However, it seems he thought I might have been simply by having "LYME" in my history and the temerity to not be feeling well in his office (it was my first appointment...shoulda known then and there). This made me someone to approach as if I were an idiot or crazy. Or a crazy idiot.

The breathing problem got to the point where I would have to break up lecturing to catch my breath (one of my jobs as a grad student is to teach undergraduate classes, discussion sections, and labs). I was in the midst of talking to some fellow grad students at school one day when the usual breathing issue started catching me up. I stopped and took a few breaths, deep ones as usual. Then a gulp. I didn't feel right. Then I felt like something kicked me in the chest, a hard sudden jerk and a sucking feeling. According to my friends, I blanched and then fell over. I only remember the feeling, disorientation, and then being on the ground. The whole thing happened really fast with all of the parts coming in rapid sequence.

I called the doctor and he said to come down to his office.

When he came into the exam room, he was in a mood. He was gruff and dare I say, cranky. We spoke about the breathing and he reminded me he had already done a chest film and it was clear. He brought up the issue of "somaticizing". I said "so you think I'm a hypochondriac?" He said, with irritation, "that's a lay person's term". I got pretty pissed off at this point. "Well I'm a lay person, so that's the word I use. They're roughly equivalent though, right?"

We went on like this for a while. At one point, he actually raised his voice. I raised mine back. He told me he "didn't believe in chronic lyme disease". I had never mentioned the words "chronic lyme disease". I had never even heard the phrase "chronic lyme disease" until he said it.

He ordered an EKG and stormed out of the room. While the tech applied the electrode patches, I started sobbing.

Prolonged QT interval. Nothing much.

On the way home, I was in an extremely dark mood. I was never certain if this was the progesterone or the "not chronic Lyme" (which turned out to be neurolyme, confirmed by a spinal tap - sometimes the oral antibiotics don't work, but that's another issue) but during that time period, I would get extremely angry. We all get angry, I'm sure no exception. This was different. It felt like I couldn't come down out of it. I was an experienced angry person and I had spent a good deal of time and money in therapy working on how to deal with that. By the age of 30, while I still got pissed off, I also could usually get myself out of it. During this time, I couldn't. I could only wait.

I was enraged on the ride home. When it finally dissolved hours later, it left me depressed and cold feeling. It's a simplification to say I "got over" how the primary care had treated me. I got over it enough. Sometimes I still think about mailing him an envelope full of ticks and then calling him and yelling "hey, what's that about chronic lyme now you a**hole!?"

I think what helped pull me up out of the emotional hole I was in was that I honestly wanted to be well, I had an extremely strong urge to be better. The fatigue was not ok. The developing other stuff like joint pain and headaches were not ok. I took these as being signs of stress (not neurolyme) which would improve when I had addressed the more pressing issue of the breathing. I can't do much if I can't walk and talk, right? So I went to a cardiologist, a pulmonologist, and I did research on my own.

In the end, I'm the one who came up with the answer. It turns out this hormone is used as a respiratory stimulant. As I understood it, it works at the central nervous system level, so you wouldn't see any changes in the tests my doctors did - except perhaps evidence that I was breathing too deeply, too much. Essentially I was hyperventilating all the damned time because my brain was stuck sending out signals there wasn't enough oxygen.

When I first saw a few articles (peer reviewed articles) about this use of progesterone, I asked the pulmonologist, a very nice fellow, about it. "Could that have any effect on what's going on here?" I asked. He assured me that it is used for sleep apnea to stimulate breathing, but not at my dose. I'm still not sure he knew what my dose was. It wouldn't be the first time a doctor misread a chart.

I felt certain it was the progesterone only after October. In early October, it was like the progesterone stopped working all at once. I had been on IV antbiotic for a month over the summer for the Lyme. During that time, I kept on taking the progesterone. I took it faithfully since it wasn't for birth control but for pain and endo control. I had no periods and very little pelvic pain during that time. But then BLAM. I was out in Michigan, where I had lived for some time, visiting friends. And I got a period - the first one in over 6 months. The flow was heavy and the pain was unbelievable. I had to leave a restaurant in the middle of a meal after nearly passing out. I spent the evening in my hotel room in searing super strong ugly pain.

I came home and told my gynecologist. And we stopped the med. Within about a month, I was breathing free and clear. I take this as empiric evidence that the hormone was the cause of the breathing problems. I wanted to send all my doctors a bill.

By December of 2003, I started to have GI problems again. Intermittent at first. I thought it was stress. I saw a GI doctor who recommended more fiber. In Spring 2004, I had another poop/puke/pass out, this time at dinner at a faculty member's house. That definitely topped boyfriend's parents' bathroom for most horrible place for this to happen. I started having diarrhea frequently. That GI doctor left for California. I saw another one in his practice, who said to stop the fiber.

As it turns out, and I'm skipping ahead here a bit, I had done something very, extremely dumb which may have had something to do with this return of the GI issues. I don't like to admit it, but it's part of the story so here it is. After stopping the first progesterone therapy in mid October of 2003, I had started a different progesterone type medication at my doctor's order. I was on it for less than a week when I started bleeding and bleeding and bleeding. This was not spotting. This was a torrent. So we stopped that too.

And then I avoided the Gynecologist.

That's the stupid part.

(to be continued...)

Gynecological diagnosis II

Continued from Gynecological diagnosis I

At the office the day of the follow up appointment, the receptionist said "routine exam?" I said no, it was not routine. I started to tell her the short version of the hospitalization story but she had shut the window.

A few minutes later, she opened it and said "The doctor had an emergency call to labor and delivery. He should be back soon." Over an hour later, I was ushered into an exam room. The nurse handed me the paper gown and told me to get changed and wait up on the table for the routine exam.

"I'm not here for a routine exam" I practically growled at her. "Oh, well, uh, ok" she said and left the room fast, understandably looking a little on the defensive from my rotten attitude and tone. It wasn't her fault. I knew that. But I was still pissed off.

After she left, I sat in the corner fully clothed, glowering and waiting for the doctor. When he arrived, he looked puzzled not to see someone on the exam table, sunny side up, waiting for him. He scanned the room quickly, finding me sitting in the corner. I saw his eyes shift a little once they found me. They took on a focus, an aspect that isn't usually there in the "routine exam" context, something personal. If life had sound effects, his would have been this.

He said "So what's going on?"

We went over why I was there and I explained I was NOT having ANOTHER pelvic exam unless it was necessary and I didn't see why it was necessary so he was going to have to tell me what the HELL was going on first. At his suggestion, we adjorned to his office. He sat behind his desk and used words like "endometriosis" and "ovarian sites" and "small amount of blood in the cul de sac". I had some idea of what he was talking about, but nowhere near enough to understand even what questions to ask at this point. He concluded by telling me that I probably would never be able to get pregnant. I realized even at the time this was an incredibly irresponsible if not plain old stupid thing to say to a 19 year old sexually active young woman.

Then he wrote two scripts and sent me on my way.

Back in my dorm, I called my mother. I read her the scripts and she told me they were for a diuretic and a psych med. I threw them out without filling them.

It's many years later now. I'm 35 and I just had my second laparoscopy. The first one, in 2002, confirmed the endo diagnosis.

In Spring of 2002, after exhausting the resources of my primary care physician (I found out over a year later that he'd been dealing with his own personal case of refractory Lyme Disease - which was why his office kept canceling his appointments at the last minute) and after having lost my patience with my grad school infirmary's health care providers, I finally went to my regular routine Ob-Gynecologist. She was one of the very few left practicing in my area due to a combination of the region being somewhat rural and the apparently quite high malpractice insurance costs in the state.

I wasn't certain it was gynecological at first. Having had a history of both GI and GYN problems, I guess I made the same mistake my doctors had made in the past. I assumed pain between my pubic bone and diaphragm was probably GI. Especially when that pain came with a heavy dose of nausea.

What lead me on the 2002 trip through the GI/GYN maze and eventually to that first lap was that I'd been sick for nearly 2 months. I had persistent pain in my right side, sort of in the middle. That's an odd way to phrase it, isn't it? But I say "middle" because the issue of latitude (so to speak) came up when the infirmary's nurse practioner ordered an ultrasound.

"A pelvic ultrasound," the infirmary nurse said on the phone "for right upper quadrant pain." Although I could only hear her side the conversation, I knew enough from calling in these test myself what kind of hell she was getting from the radiology department's scheduling clerk on the other end.
"Well, it IS a pelvic ultrasound!" she said into the phone. I said "not when the pain's above my belly button it's not..." She ignored me.

The nurse practioner and I hadn't hit it off. My opinion of her immediately sunk after she asked me "How much work are you missing because of the pain?" "I'm in pretty much every day, but I find myself walking to my building looking for where I can stop and puke if I need to. I mean, that's like how I get from the garage to the building, one trash can and bathroom at a time. I feel bad all the time, every day, and sometimes I feel even worse."
She said "It can't be that bad if you can get up and go to work."
I answered "I'm a PhD student working as a research assistant. I don't GET sick time. I have to go to work, so that's not a valid measure."

I've found that doctors and nurses really don't take that kind of tone or response very well. I resolve, every now and then, to find ways to temper my tone in such situations. I won't temper the terms, but I could at least try on the tone. Unfortunately, when I'm not feeling well, I'm not at my best. And when I'm not at my best, it's hard to implement that resolution.

The nurse eventually managed to order an ultrasound which would cover the areas of interest. She sent me off saying "it's probably just a stomach flu".

The ultrasound showed nothing. My follow up appointment with her ended with a diagnosis of "stomach flu". I left and made an appointment with my gynecologist - an appoinment which couldn't be scheduled until several weeks from then.

In the meantime, the pain persisted. Three things about how I felt concerned me deeply. One was where the pain was. It had started in my pelvis - quite acutely one day at breakfast. I was at Bickford's. I remember very well. I was eating an omlette, which I didn't make it through. I have occasion to look back on the days before that breakfast as the last few days I felt genuinely GOOD.

When the pain started that day, it was central and in a sort of column up, starting about 2 inches over my pubic bone but stopping abot an inch or so below my waist. Genuine pelvic pain. After a few days, it radiated up and around my side, nearly into my back, and there it had remained for months.

The second this that concerned me deeply was that I felt so baaaaaadd. I was constantly nauseous and run down, like I had the flu. I had an elevated temp, never reaching the standard for a fever but high for someone who's normally hanging out in the high 97 area.

And lastly, I was starting to fall behind in my school work. I would have liked to be as dismissive about this illness as the infirmary nurse, mostly because I was getting tired of feeling like the chronically sick girl. When the hell was I going to get better? It was very frustrating, it wore on me. It made me cranky and a little sad. I had never been a super active person, but I enjoyed walking, it was not unusual for me to take a five mile walk on a day off. Also, I was typically a rather animated and energetic person. And I am smart, verbally quick, and usually somewhat funny. I like to socialize. But it's hard to be your walking, energetic, smart, chatty, funny, sociable self when you feel so run down, sick to your stomach, and in PAIN all the time.

I had no idea pain could be so exhausting.

The day of my appointment with my gynecologist, I was in an immense amount of pain. I'd been taking ibuprofen in doses even my mother the old battle axe nurse would have disapproved of (she tended to see the maximum doses on most OTC meds as mere suggestions - except for acetaminophen), but I was barely able to lie flat on the exam table.

My gynecologist said she thought it might be the endo but that she couldn't be sure without a lap. I said, somewhat to my horror, "then do the lap." I needed to know and I needed this fixed. I could live like this, but I certainly wasn't going to be able to live well like this. I was 30 years old and, despite the occasional, isolated, and those days quite rare acute pain/poop/puke/passing out episodes, I was pretty darned healthy.

I took a stats exam the day we decided to do the lap. I did not do well on the stats exam. I ended up taking an incomplete in the class. This was not unheard of, but I had done very well in Stats I, and to take an incomplete in Stats II was something of a mark of shame in graduate school. Especially in my program, which was heavily analytical.

(to be continued)

Gynecological diagnosis I

"Mittleschmerz" the old man who sat on the edge of my bed said to me "literally means 'pain in the middle' or midcycle pain." He was explaining this the morning after the alleged "mittleschmerz" hit me.

We were in my college's infirmary. I had spent the night there, medicated but still in so much pain that my legs were constantly moving and I would drift off only lightly then wake up in a cold sweat, crampy and feeling like I had to urgently evacuate from both ends. I'd make a staggering walk across the cold floor to a restroom where I sat hunched up on a toilet, gagging and crying, and then I'd return to bed when it felt the spasm had passed. I was just barely 19, at college, and sick. This sucked.

It all started when I was at work. I had been accepted the year before at a university my parents could not afford but which was one of the more prestigious universities I had applied to. So when I got in, my parents wouldn't hear of my not going. We had all the usual loans a working class family sending a kid to an overpriced college had. In addition to the loan money I am still paying off (18 years later), I was approved for work study. This meant working two on campus jobs in addition to my outside job in order to afford books, food, and phone service. Frequently, I went without phone service.

My outside job was a part time evening weekend shift job as an inpatient clerk (aka "unit secretary") at one of the hospitals in the NW Boston suburbs. It didn't pay much during the semester, but it allowed me to pick up overtime shifts on holidays and breaks, which I did often. I floated to and worked per diem on many floors aside from my own, the inpatient surgical unit. Oh, this was back when there were inpatient surgical units. These days, most of the procedures we housed pre and post op patients for would be performed on an outpatient basis in a day surgical clinic. But this was the roaring 90s, barely even. This was the day of pre-op chest x-rays and EKGs for everyone, routine metabolic labs, and post-op care which included not going home until your pain, eating, and elimination were all well under control.

One of my work study jobs was at the very infirmary, where I now lay with this old man leaning over me, a too thin blanket and my growing annoyance between us. At the infirmary job, I pulled charts and made appointments, handled the front desk, learned (to my great horror) which of my friends were and which weren't using condoms, and refered patients to outside medical facilities. The last one I did with great enthusiasm. It was a necessary service since all of the very few actual MDs we had on staff were only part time and worked what seemed like erratic hours. The appointments filled up far in advance. For gynecology, we routinely booked well into the next semester. Fortunately, we had a roladex which had the names and numbers of several area doctors, gynecologists included. I worked with many of them at the hospital clerical job since so many of our inpatients were gynecological patients. I once asked one of the older nurses "hey how come so many of our patients are gynecology?" in all innocence. She laughed ruefully, then announced my question to the other nurses at the station. They treated me as if I had asked "where do babies come from?" Only when I was about 15 years older did I realize the full reality of why most of the surgical patients were gynecological patients, or possibly vice versa.

My third job was the one I was at the night the pain that won me a stay in the infirmary hit me. I worked for the campus safety escort service. This is the service that runs the shuttles and employs students to work in pairs at various locations around campus to walk with students who do not want to walk alone at night. My co-worker that night was J____, a sort of fluffy superficial young woman who lived on my hall. J____ had pulled strings to get us to work together, something I was supposed to be thankful for but which I was finding difficult to handle. My shift was at the library, and due to the general attitude of safety and privilege among the undergrads at my university, I got to spend most of my time at the library shift sitting at the library instead of walking anyone anywhere. This was ideal since it meant I could read. Except when J____ was there. When J____ was there, it was more talk than study.

When we finally got a walk, I was happy for the break at least from the chatter and what was becoming a stuffy late evening library feeling. We set out, J_____ and I wearing our little vests which marked us as safety escort walkers, walkie talkies attached to our belt loops of our pants. We were in charge. Except when I doubled over in pain a few yards out. I started retching into the bushes and J____ called in a request for another walker. The dispatcher was swamped and told us to sit tight and wait. J____ was sensible enough to decide she wouldn't put me through a wait. The poor girl we were walking looked horrified. She and J____ ended up walking me to the infirmary, half dragging me at times down the hill and into the pit where the infirmary buildings were clustered.

When we got to the infirmary, the doors were locked. There was a sign directing us to a side entrance where we stood and waited after J____ rang a bell. A nurse appeared in the doorway, holding the door just open enough to peek out like a frightened old lady checking her door at 2 AM in a bad neighborhood. Jenn explained our situation and the nurse grilled us there on the doorstep. "How much has she had to drink tonight?" she asked. "What? Nothing! We're working!" J____ huffed, personally offended now. Finally, the nurse let me in, shooing J____ and the other young woman away. The nurse was curt but efficient. She gave me some pain meds after checking my vitals, then showed me to a bed where I was left for the night.

Which brings us up to the morning with the doctor on my bed.

"'Mittle' is German for 'middle' and 'schmerz' is the German word for 'pain'" he told me in what I could only hear as a condescending tone. "Isn't that more of a description than a diagnosis?" I asked, incredulous that something this horribly wrong feeling could have suddenly happened to my body but didn't warrant an investigation more thorough than this...which I saw even then as a dismissive pat on the head. He explained very briefly that it was normal for some women. I pondered a life of this as a normal state of affairs. I was 18. I had no idea what that would be like. I know now.

The doctor gave me a dose of donnatal and discharged me. I walked back to my dorm alone. My dorm was at the bottom of another hill, a hill which at least one student took on his face at the start of each semester. I remember walking the long way around to avoid the hill, but feeling like the ground was tilting in a sickening way as I walked over it. It was relatively flat going, but my feet slipped and dragged in response to the messages from my brain that I was going up, down, and sideways. I finally made it back to my room. I recall looking in the mirror and seeing myself, pale, dark circles under my eyes, and very very high looking. I looked closer. My pupils were huge. I called my mother, the nurse. "Donnatal has bella donna in it" she said. "That's why your pupils are big. Do you have someone there? Do you need to come home?" Home was the last place I wanted to be, as much as this sucked, home always sucked more. "No, I'll stay put. Get some sleep, you know?" I told her with as much good feeling confidence as I could muster. My belly still hurt pretty bad, except now I felt looped.

About two years later, I had three more experiences like this in rapid succession. The first was at my then boyfriend's house, when I locked myself in the bathroom of his parents' house because the cramping and bowel urgency was so horrible I couldn't be away from a toilet. I pooped, puked, and then passed out. I woke up shaking and sore, having hit my head on something on the way out.

The next was on a train home from dinner in Boston with a group of friends. There was no bathroom, just the long commuter rail trip north from an overly rich dinner which I'd only been able to eat a very little of before feeling suddenly and badly full. I lay on the floor of the train crying, going in and out of consciousness, puking, and (according to one fo my friends) looking green. "Honestly," this friend told my mother at breakfast a few days later "I've never seen anyone look that color!"

The last one landed me in the hospital. My then boyfriend (the same one whose parents' house I had passed out in about a month before) and I had had a huge fight. It was around valentine's day. I threw a vase of flowers at him, slammed the door to my room, and then got hit with that same horrible pain. I made my way to the women's room and went through the usual toilet routine. Nothing. Just pain and feeling like I had to GO, but nothing. The pain got worse. I made my way back to my room to find my boyfriend looking for more argument. He saw me and the angry hostile look evaporated. "My god are you ok?" he asked. "No..." I grunted and climbed into bed.

Some time later, the campus EMT team was called. This crack squad of health care providers consisted of pre-med college students, some of whom were in fact EMTs but most were kids whose entire medical experience thus far consisted of working as volunteers on the ward where daddy admitted most of his patients. One of these kids was taking my blood pressure. I had passed out after vomiting into the trashcan, at least I think that's what happened because leaning out over the trashcan was the last thing I remembered before waking up to feel a cuff on my arm and hearing a young man's voice asking someone "hey, the top number's getting higher and the bottom one is dropping. What does THAT mean?" "I think it means I'm going into shock" I said. The boy noticed I was awake, leaned in, and yelled into my face "HOW MUCH DID YOU HAVE TO DRINK TONIGHT?"

I tried to explain how much soda and water I had had that night, thinking in my somewhat muddled state that he was asking about my fluid intake. It became clear he wasn't when he repeated the question adding "WHAT ELSE DID YOU DRINK?"

I knew at this point that these kids were trouble. Well intentioned, but pretty much only there for first aid in cases of mild ODs, acid freakouts, and alcohol poisoning.

Finally the real EMTs showed up. We had a short argument about what hospital I could go to. They wanted to transport to the nearest and I wanted to go where I and my mother worked - mostly because the closest had a reputation as a wreck of a place where negligence was part of the daily practice. My mother worked in the ER of our hospital and would bring home stories of people dismissed and discharged from the ED of the more local hospital and who ended up admitted through our ER within one day.

The EMTs were having none of it. I thought if a patient was conscious, he could request to go to a particular hospital, but they argued my insurance would not pay for this luxury. I insisted. We argued. It was solved by a quick phone call to my father, the junior low level insurance executive. The folks in my now rather crowded dorm room stood around waiting while I made the call. My phone was shaped like a bright red high heeled shoe. God, in retrospect this is a truly odd scene.

"Dad, does our insurance cover transportation to the other hospital?" I asked him after very briefly explaining what was going on.

I am still sort of amazed at how much charge I took that night. I think I had to, but I think part of what necessitated it was that since adolescence, I have felt like I am the best person to be in charge of any such peer based emergency. I was the kid who didn't drink or get high but hung out with the drinkers and stoners. I was the girl who had the first aid supplies, the condoms, the extra tampon, the saftey pins, the scissors. I came equipped.

I think my friends, having learned this is the way it would be with me, tended to step back and wait for me to do what needed doing even when I sincerely was not in a position to do it. So my needing to run the room that night was in part my own fault. I'm nearly 20 years older now and I like to think I've gotten at least a little better at letting other people be in charge, but I am by no means good at letting others be in control of my body and my medical situations - even when it is necessary.

My dad, confused but knowing not to argue, said "yes, it'll cover it" that night and we were on our way. Sort of. I refused to be carried down the stairs on a stretcher. We had some more words and finally they very reluctantly walked me down. I made it to the outer doors, sat on the stretcher, and lost consciousness.

I came to fighting and slapping at what felt like someone trying to suffocate me. In reality, it was just the emergency technician trying to put an O2 mask on me. As we passed the doors of the ambulance bay, I heard my mother's voice saying "well they called in a 20 year old with acute pelvic pain from your university and I thought 'that's probably my daughter'" She was charge that night, as she usually was. She'd been a nurse manager, head nurse (back when they were called that), staff nurse, and nursing supervisor at nearly a half dozen different Boston area hospitals since the 1970s. She's worked on burn units, one of the first transplant units, and emergency departments. I dislike her as a person, but she's an extremely competent and very well qualified nurse.

My mother took me as a patient that night and got me settled in a room. I had an ultrasound and was admitted to the GI service rather promptly. I'd been seen by a Boston pediatric GI group for something like 8 years at that point, so the natural assumption was that this was GI related. However, the ultrasound showed evidence of a ruptured ovarian cyst. As soon as that result came in, the GI service dropped me faster than you could say "endometriosis". They left me without diet or med orders. Finally an on call doctor from my private gynecology service called in a few reluctant orders. When he came in to see me the next day, he sat in a chair across from my bed and explained about the cyst. He explained very minimally, telling me I should schedule a follow up appointment to talk about this with my regular gynecologist when I was discharged.

continued