Sarah Ramey - The lady’s handbook for her mysterious illness : a memoir

Dear Reader,

There may exist a graceful and elegant way to begin ones gynecologic and colorectal memoir, but it never does spring to mind.

Let us start then with a story. We can travel back to where it all began, and for a moment leave the particulars behind. That sounds much nicerlovely evenconsidering it all began so many years ago with a cool, luxuriant swim in Walden Pond.

I remember it well. The heat was heavy, I was a summer student at Harvard with no air-conditioning, and Walden beckoned for the reasons it always will. Though I suppose the busloads of tourists beached on the imported sand should have sounded some instinctive alarm when I arrived, they didnt. I walked right on past and made my way to the side of the pond where the water was still and the snorkelers out of sight.

I remember walking into the water. I remember floating on my back. I remember the coolness and the peace and the poetry of the place, and I remember feeling like I couldnt ask for anything more.

The next day in the emergency room, I had quite forgotten all of that.

A urinary tract infection, known as a UTI, is a very painful but easily treatable infection of the urethra. Most people describe it as peeing broken glass, and I would have to agree with most people.

But my ER doctors patted me on the back as they ordered up the standard antibiotics and I bounded off to the pharmacy, clutching my prescription, counting the minutes in the twenty-four hours they told me it would take to go away.

Fifty-six hours later, I was back in the emergency room. It had not gone away.

In fact, it did not go away for six months. How strange, the college physician said as he took my history. I had never been sexually active, which made things particularly challenging, both diagnostically and emotionally. I was a senior in college, and it was my time. I even had the right person picked out.

But the UTI stayed. We joked and called it my PUTI, or permanent UTI, and I laughed along with the rest. But in private, in the bathroom, I was profoundly unamused.

This prologue is typical of women like me. A simple and innocuous medical eventoften with a gyno or gastro tiltthat should have resolved simply, but didnt. She thinks it is just another one of lifes ups and downs, when in fact Up is about to become a distant memory.

There is a secret society of sorts that no onenot even the membershas heard of. We dont look alike, we dont dress alike, and were from all over. There is no secret handshake, no meeting place, no cipher.

We are the women with mysterious illnesses, and we are everywhere.

When I went home for Christmas just outside of Washington, D.C., my parentswho are both top-notch physiciansmade an appointment for me to see Washingtons preeminent, top-notch urologist.

Dr. Damaskus said I seemed like a nice, normal young woman who would probably like to get back to the business of being able to pee and have sex freely, and he saw no reason why he couldnt make that happen. He determined I no longer had an active infectionand then proposed a procedure, to be done right there, that day, in the office. As he described it, he would insert a small instrument into the urethra, rip it, and this would solve the problem.

I frowned.

But Dr. Damaskus assured me it was the only option, should I want a normal life againthe gentle ripping, he explained, was more of a light stretching of the tissue, and it would interrupt the muscle spasm and break the cycle of pain. He handed me a paper gown.

Im almost nostalgic for my navet. I took the gown, steeled my nerves, saddled up, and put my feet in the stirrups.

The procedure began benignly enough with a small swabbing of topical lidocaine, but in the next step a device not unlike a very small car jack was inserted in the urethra and then ratcheted out several notches until the urethra, as promised, tore. It was a blinding pain that no amount of lidocaine would dull. He peeked over the paper blanket and asked if I thought he had gone enough notches. I was crying too hard to do anything but nod. He went one more notch.

Dear, patient reader, I have not forgotten about you, or our purpose hereor the cautionary voice in the back of my head whispering something about too much information. But I think this history is important. So before we move out of this reverie, let me come quickly to the end of the beginning of our story.

That night, after Dr. Damaskus sent me hobbling back on my way, intuitions warning bell finally took up its low, steady thrum. I sat silently through dinner, and put myself to sleep early. Something was not rightsomething flulike, but menacing, was starting to bristle. Everything hurt, not just my urethra. My ears hurt. My teeth hurt. I fell asleep, my hands clenching and unclenching of their own accord.

When I woke, I was on the floor, quaking with rigors, drenched in sweat, and making a very bad noise. My mother was calling the hospital and dragging me toward the car. It appeared I had become septic, an infection of the bloodstream that would have ended badly if my mother werent such a top-notch physician. We were at the hospital in minutes.

I was not witness to the miraculous save, but I heard all about it when I woke up. Top-shelf, nuclear-grade antibiotics pumped into me by the gallon, and it seemed like every doctor at Sibley Memorial Hospital came to sit by my side, making sure the doctors daughter pulled through. I was extremely well taken care of. I was going to live. It would all be all right.

By the next day, everyone had gone back to their private practices, wishing me well, which I very much appreciated. The only problem was (and I hated to be a stickler)I wasnt all right. I was still aching all over, badly, even though the infection was gone. I had a fever every afternoon, and intense pain all down my legs. The broken-glass pain was starting to radiate out to the surrounding muscles in the vagina, rectum, and bladder. My bowels seized up and stopped working. I itched.