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)