Polycystic- but Not PCOD Enough

It's a strange thing when radiologists get hold of you. You have to do prep work. For some procedures it involves wolfing down barium shakes, or during the procedures getting that stuff in the other end. You may have to drink a gallon of water prior to being 'observed'. You may need to take off underwear, stand against a board and flatten your breast into the pizza dough shape you'd see at Domino's. Or you might have to dislocate the joints that pop out- just to see if they're as twisted on the inside as they are on the outside. Prep work is important for those charts, x-rays, MRI's, CAT Scans, and sonograms. If you do the prep work incorrectly, the results may be skewed.

For several years, my doctors were convinced the dismenorrhea I experienced was due to age. Teens always have weird periods. Then they were convinced it was due to birth control options- and for years I was put on pills designed to regulate that monthly destruction. In my later twenties, a doctor looked me straight in the crotch and said, "You have Polycystic Ovarian Syndrome. I'm going to fix this." She was eager to solve the issues that plagued me for a majority of my life, and she would be hardcore and House MD-like about it. But first, she had to send me to a radiologist.


It was a fairly no-nonsense procedure. I walked in to the office, drank about 6 glasses of water, and had some young lady who was at UCLA Medical School wipe a wand around my abdomen. I looked up at the screen and could see what looked like the Scrubbing Bubbles in the advertisements. She laughed at me and said, "Oh, they always look like that in people your age." But she said that the radiologist was the one who had to tell me what was going on.

I never heard from him. The doctor did. She called me the second she heard. "I have news. You DO have PCOD, but it's a bit small. I still think this is the problem." At the time, I was experiencing great bouts of depression, fatigue, and horrible cramping. What was known for certain was that one of the fallopian tubes appeared rather shriveled and the ovary was more like a sprig of pansies than any golf ball sized object that you see in text books. It was a broken box, if you will. The likelihood that I would ever conceive was reduced substantially with only one part functioning. From that moment on, I convinced myself, if I would ever want a child, I would adopt.

Flash forward to eight years ago. It's been about ten years since the last big sonogram, and revelation that I was a barren wasteland of womb-anity. I had to switch birth control pills every few months because somehow my body adjusted fairly quickly and went right back to its sneaky little plan to make monthly errands torturous and humiliating. My great doc in Hayward said she wondered if there wasn't anything more to the PCOD diagnosis that was mentioned in passing a few months before. So, I again was sent on to the scanners.

This time the little martians had settled in where the bubbles once were. I had "cysts" but didn't seem polycystic. If the word implies multiple cysts, then it would seem I WAS polycystic- however...the official diagnosis placed these little weird shapes in a specific location, and mine were appearing in other locations. Just a river of bumpy-lumpy-weird-little-white-spots on the tubes and ovaries. None appeared to be in the spot where SHE thought PCOD patients had them. Beats me. I thought those were pretty much the organs of choice.

Two years ago, I had one more doctor try to determine why I was having weird monthly cycles, weight gain, skin issues, swelling in my ankles, and oh yes- cramps that would blind forty-four ace pilots in a single twinge. I met with one more young medical student who was eager to laugh at the little scubbing-martian-bubble-head thingies. This time, she said, "Legally, I can't tell you what this says, but it appears to be PCOD, as your doctor things. And did you know you have both ovaries completely wiggled up like prunes? You must have awful periods." She's going to be a good doctor, I think.

In 2005 I weighed 123 in January, and 152 when I got married in April of that very same year. Thirty pounds appeared in a matter of three months, and no one was sure why. The only thing the doctors seemed to be convinced of- "Oh, yes, you have several cysts, but it's certainly not as many as anyone with PCOD would have. It must be something else causing this." And, "It's not Cushing's", or "It's not your thyroid." Somehow my body was doing all the things that these issues would make happen- yet none of this was related to any SYMPTOMS because the TESTS weren't showing up with the correct ranges to be diagnosed that way. It would take several more years for the numbers to catch up.

There is a serious flaw with a medical system that is so afraid of malpractice issues that offering possible hope is out of the question. Yet, this is exactly why doctors are telling you and me that they cannot find answers. It's a complete stab into the "do no harm" oath. Yet, so many of us are looking, feeling, and becoming ill and progressing in our illnesses because numbers are far more important than individual experiences. The fact is, I do have PCOD, and it's not as severe as other cases seen. The tests have shown progressive, continual changes that have been the result of a tentative approach.

Today's questions- What do you believe doctors are telling you that isn't the full story? What do you feel like when you are told you are PROBABLY one diagnosis, but you show signs of another diagnosis all-together? What can we do to educate these professionals regarding our symptoms, rather than our numbers?