Inexplicable Pain, Part 1

It has been almost a month since I’ve written and it hasn’t been because I don’t have anything to say, but because I am afraid to write what I have to say. Writing things makes things real. At least for me it does, and I have spent the better part of my life trying to believe that the now daily pain I feel is all in my head. And since it was all in my head, I saw no need to blog about it or even get help for it. That is, until the pain got so bad I just needed someone to cut something out of me. I needed someone to permanently remove whatever hideous and hellaciously angry part of me was causing so much pain that merely breathing sometimes exacerbated the problem.

Unfortunately, the doctor I finally went to see will not remove any of my angry organs. That bastard!

Over the course of the past fifteen years I have seen more doctors than I care count, to try and get answers about the stabbing pain on my right side. I remember exactly the day I first felt this pain. The summer before my junior year in high school I was 17 at cross country camp in New York with two of my friends. We were stretching before our run when out of nowhere came this searing pain in my right side. I doubled over in agony and was sent to the nurse who told me that I may have pulled something or maybe it was my appendix, we’d wait and see. While I was at camp the pain eventually subsided and was more or less forgotten about until the next month and the next month and the many, many months after that when it kept returning, always on my right side.

When the pain would return and when it would intensify, so too would the pain of my periods. Now, I don’t ever recall having “easy” periods since I started menstruating at 13, but they certainly became more painful with age, especially in college. It got to the point where I had such intense cramps I would curl up in a ball in bed all day, my tears as useless as the over-the-counter pain meds I tried furtively to numb myself with. Sometimes even without a period, I would get debilitating pain, again, always on my right side, which would come out of nowhere. I remember running through the woods one day in my early 20’s when a pain on my right side so fierce knocked me to the ground without any warning. All I could go was double over on the ground and wait for it to pass.

For over a decade since then, I’ve seen doctor after doctor, most of whom told me it was “in my head” or “the burden of being a woman” or “that’s just what happens when we menstruate” (which ALWAYS was said by a male doctor and left me wondering when the hell the last time he menstruated was!!). The few family members and friends I told about the pain over the years didn’t know what to do or they too told me it was all in my head, part of being a woman, nothing to worry my pretty little head about. Sometimes I believed them. Most times I didn’t but what the hell was I going to do? No one seemed to take me very seriously, especially since the pain would come and go, lessen and worsen, sometimes seem to disappear altogether for months or two at a time, only to return with a vengeance later on.

The doctor I was seeing at the time believed that my periods were the source of my “frustration” and prescribed birth control pills to get everything under control. My first negative experience with birth control pills occurred within the first few months of taking them. I was a freshman in college at the time and I was irregularly sexually active. A mere few months on the pill led to a weird tingling sensation on the left side of my face which appeared out of nowhere during a math exam. The tingling sensation spread down the left side of my face to my upper left arm until that went numb. From there the sensation slowly traveled down my lower left arm and eventually throughout the entire left side of my body to the point where I had trouble using my left hand, speaking, feeling my left foot or even thinking clearly. Finally, scared out of my mind, I had my sorta boyfriend take me to the emergency room. The ancient male doctor who finally saw me, without doing any medical exams, lectured me about how I was having symptoms of a stroke and how stupid could I be to keep taking these pills when they could, literally, kill me. I was too stunned and afraid to tell him why I was really taking these pills, although I did immediately stop taking them.

After that incident, other “more knowledgable” doctors and gynecologists prescribed different types of the pill which weren’t supposed to have the same side effects, and while it is true that I didn’t stay on them long enough to experience stroke-like side effects, I had a variety of other problems which caused me to go off them.

For awhile I relied on condoms, but I had problems with them too. It seemed like most (but not all) of the time when my partner used a condom I would get anything from a mild irritation in my vulva to a full out burning, acidic forest fire inside my vagina, the pain of which could last for a day or two. I discussed this once with my mom (yes, with my mom) and she suggested waiting until I was more aroused to have penetration and if that didn’t work, switching brands of condoms (I’d already tried quite a few and generally they all caused some negative reaction) and if that didn’t work, she suggested trying lube. No one ever suggested that I see a doctor about this (although given my past experiences, I doubt that it would have helped much anyway!). And anyway, condoms didn’t always cause such burning irritation, so when things were fine for awhile, I’d go back to telling myself what I was feeling was all in my head.

Once, while on charity care in New Jersey, (because even though I was working two jobs I didn’t make enough money to afford my own health care and neither job provided part time people with insurance) I sort of got a smattering of answers about my pain which refused to go away. The charity care doctor I saw initially told me that my pain “was part of being a woman” and saw no reason to pursue medical treatment. However when the nursing assistant tried to perform a routine gyn exam, I almost jumped off the table from the pain of her trying to insert the just the tip of her finger into my vagina. I fought back tears as she left the room, presumably to let the doctor know that something had to be done.

Reluctantly the doctor ordered an ultrasound to see what the hell might be wrong with me. He told me it might be an ovarian cyst or endometriosis, though he still seemed to think the tests were a waste of time and taxpayers’ money. Despite feeling that way, he did strongly suggest that if I have endometriosis, I really should consider getting pregnant because that would stop my periods (and presumably my problems) for at least 9 months…longer if I breast feed or had more kids. My highest paying job at the time was $6.50 an hour, never mind the fact that I never, ever want to have kids, and this was what the doctor thought was the best course of action for me?

The ultrasound revealed that I had a cyst on my right ovary (at least that wasn’t in my head!) and Doctor Charity Care begrudgingly consented to giving me a laparoscopy to remove the cyst.

Finally, on September 12, 2001, I had the first surgery of my life. The procedure revealed that the cyst on my right ovary had ruptured prior to surgery so that should not have been the cause of my current pain. It was also discovered that I had endometriosis; which I had suspected and attempted to discuss with the doctor when I first met him and he immediately dismissed. He told me they removed all the endometriosis they could see but since they weren’t expecting to find any in the first place, there was no way to tell, without further surgeries, if anything remained. At any rate, he “assured” me it would likely come back in a few years anyway, as long as I kept getting a period. Again he recommended the “cure” of pregnancy (which I later learned can often make endometriosis even worse!) as a means of “keeping the endometriosis at bay” since there is no cure for it.

Since I refused to get pregnant, this began years of failed treatments, increased pain, several new doctors and an increasing sense on my part that maybe this was really all in my head.

Over the years, when I was somewhat believed, doctors prescribed a plethora of birth control methods aimed at controlling my periods. I was on several types of birth control pills (both regular and progesterone only), even after the disaster I experienced in college because each new gyn “assured” me that this pill would not cause the same, or even similar side-effects. None of the pills worked for me since I appear to be unable to tolerate extra doses of estrogen.

From there I was prescribed “the patch”, which I thought was a miracle, since I had been able to use it longer than any form of birth control pills. That is, until the day I leaned over to pick something up off the floor of the nursing home where I was working and I felt an intense tightness in my chest followed by sharp shooting pains in my chest and down my left arm. Although I had tried to ignore the tightness in my chest that I was increasingly feeling on my drive into work that morning, even I wasn’t foolish enough to ignore these symptoms. My doctor diagnosed these symptoms as warning signs of a heart attack and ordered me to stop using the patch. I was twenty five at the time.