COLLEEN & SCOTT ADAMSON
We began to notice a pattern, with the pneumos happening at the beginning, middle, or end of my period.
Problems of CF That are just for Men/Women
The Joys of Being a Woman!–Autumn 2002
BY COLLEEN ADAMSON
I really don’t know why I have weird medical problems. Don’t you hate it when you are on the “must see” part of the medical student’s rounds? “You have to stop and talk to her; she has this rare problem…” Spastic esophagus, nose running while I’m eating (very embarrassing if you can imagine, but that’s a whole other article!), etc.
My latest weird problem is related to a female issue: menstruation. I first noticed a problem about two years ago, two years after my bilateral lung transplant. I became short of breath, and I could hear and feel air roaming around somewhere in the vicinity of my lungs (and not in a good way either). And I was in pain too, not good. I was really scared because I had no idea what was happening to my new lungs. After getting an X-ray, my transplant doctor, Dr. Steven Nathan of Fairfax Hospital here in Virginia, diagnosed me with a pneumothorax (I’d only had one prior to this one, five years ago). Dr. Nathan, asked me if I had fallen or hit myself somehow, but I hadn’t. We were both stumped as to how this lung collapse had happened.
Dr. Nathan decided to put me in the hospital, and tried putting me on 100% oxygen first, to see if that would resolve the pneumothorax. Luckily it did after a few days, and we thought that was the end of that. Until it happened approximately a month later, and then a month after that, etc. We began to notice a pattern, with the pneumos happening at the beginning, middle, or end of my period. This lasted for approximately six months.
We have all read articles on the apparent link between menstrual cycles and the severity of one’s asthma; that the asthma seems to get worse during a woman’s period. Well, I apparently had another link: catamenial pneumothorax. That’s what I was diagnosed with, after these pneumos seemed to keep happening every month around the time of my period. My doctor described it as having endometriosis around the lining of my lungs. Nothing else seemed to trigger it; it would happen when I was just sitting at my desk at work typing, or at home when I was cooking. I could feel it too, and it was really weird. I could feel and hear the bubbles moving around the outside of my lungs, and when I lay down on my back at night, the bubbles would “rise to the top”. It sounded like I was percolating really. My doctor even checked into my donor’s medical history, but didn’t find anything related to my problem.
So it was a really weird thing to experience, but it was more annoying than anything else. For example, I occasionally have to travel for work, requiring me to ride on an airplane. Of course, if I was having one of my pneumos, I couldn’t fly due to the cabin pressure possibly making the problem worse. So, horror of horrors, I had to coordinate my trips with my menstrual cycle, and therefore also with my young, male boss! You can imagine the dialog: Male boss: “Hey Colleen, can you fly to San Diego on the 12th, coming back on the 16th?” Me: “No, that’s the week that I’ll be having my period. How about the week after that?” How’s that for a workplace conversation? And of course, even after all of this coordinating, there would be problems, like my period coming early or late so I couldn’t fly anyway. We did take this into stride, and got past the embarrassment to find the humor in the situation, but I did miss a few great trips, including a trip to Boston for a friend’s wedding. It was also amusing to see my coworker’s reactions: “You have a lung collapse?? And you are here working?? Are you crazy??” In actuality, the pneumos weren’t too painful, and working took my mind off them, so I was happy to be at work and not resting at home.
Once we decided that I had catamenial pneumothoraxes (these are very rare, with there only being about 100 reported cases of it), we started thinking about how to stop them. The obvious, least evasive, non-surgical (who wants another surgery, right?) answer was to stop me from having a period using birth control drugs. So I got a Depo-Provera shot (no estrogen), which is a birth control drug that lasts for three months. Well, not only did that not stop my pneumos, but I began to get terrible migraines too. So I only had that one shot. Next we tried birth control pills (containing estrogen), which I had to be talked into, because I really didn’t want to have to take another pill, being on so many as it is. But I did want to be able to fly again, so after a few months, I decided to try them, and I’ve been on them now for about a year, with success. My gynecologist thinks that the estrogen was the key to stopping my pneumos, and I’m happy to report that I haven’t had a pneumo since I started taking the pills!
I wonder what my next weird medical problem will be??
Colleen is 33. She is a Director of USACFA. Her email address is: cadamson@usacfa.org