Menopause: How I Got Here A Cautionary Tale

CA, USA

51

In my mid to late 30s, my period started to change. It became longer, heavier, and more painful. When I discussed this with my doctor, she said I was probably entering perimenopause, and that it seemed normal. So I went on with my life, dealing with the worsening of something that already made me extra anxious, and tried not to worry too much. In my mid to late 40s, I occasionally experienced exceptional discomfort — a kind of bloating I didn’t know was possible — in my abdomen and up so far into my chest that it would pop my first rib out of place on my right side. My chiropractor was the only person who could bring relief by resetting the rib, which would get rid of that pain. The first time I really noticed this happening was when my wife and I were traveling from San Francisco to Ventura for her cousin’s wedding party.

I was miserable the entire ride, miserable when I tried to sleep, and absolutely no fun at the party as I sat inside her aunt and uncle’s house moaning in pain. (Mind you, the aunt and uncle are an RN and a physician.) I don’t like to make a big deal of things, so I didn’t want to go to the hospital. After two or three days, the pain and bloating passed — and a day or two after that, my period started. That’s when I realized this might be connected to my menstrual cycle. But it was so strange: why would my chest hurt and my rib pop out of place? This happened a few more times over the next few years, though never as badly as that first episode — until…

Two years ago, on a Friday, I was doing a walkthrough with a contractor at work. I was out of breath and generally feeling off. I left work early, stopping at the grocery store on the way home. I parked as close as I could to my house, but had to stop twice to catch my breath on the 40-foot walk to the door. My wife was on a road trip on the Olympic Peninsula, and I was home alone with the dogs. When we spoke that night, I told her I wasn’t feeling well but didn’t want to make her worry, so I didn’t elaborate. Sleeping that night was difficult. Lying on my right side hurt. Lying on my left side hurt more — it felt like my heart was squishing my left lung. Lying on my back also hurt, so I propped myself upright with a pile of pillows. I finally fell asleep like that but woke every time I rolled onto my side.

The next day, Saturday, I was in even more pain. Something was very wrong, but I was scared. I had a feeling that if I went to the hospital, I wouldn’t be coming home that night. Who would take care of the dogs? So I stayed home, struggling to breathe, dizzy and in pain. I called in sick on Monday, and on Tuesday I picked my wife up from the airport. I was dizzy but drove anyway. When I picked her up, I asked her to drive us home. She knew something was very wrong and made me call the Kaiser advice nurse. The symptoms I described didn’t seem to alarm the nurse too much, but she got me an appointment the next day. My wife went to work, and I went to the doctor. The doctor listened to my chest: “Deep breath. Again. Deep breath.” I was trying, but she couldn’t hear anything. Apparently, that’s a bad sign. I was sent for chest X-rays. When the X-rays were done, the tech asked, “Are you going directly back to your doctor now?” I said yes, and he replied, “Ok, good.”

I’ve had a LOT of imaging done over the years, and X-ray techs are not supposed to say anything diagnostic. I started to worry. Back with my doctor, she asked how I was feeling. I told her I wasn’t great, but better than Saturday. She asked if I had driven myself there. I said yes. Then she asked if I thought I could still drive. I said, “Yeah, I don’t see why not.” That’s when she told me I needed to go to the emergency room immediately. Did I need an ambulance? Could someone come get me? Now I was worried. I told her I would drive home (ten minutes away, at most), and my wife would take me. I called my wife, and when she got off work, we went to the ER. Once admitted, a flurry of doctors came in and out. A tall white male doctor asked me questions. I told him I’d had something like this happen before, just not this bad, and that once my period started the pain subsided. He said, “Impossible. There is no way this is related.”

I was admitted to the hospital for six days. Endless testing and imaging followed. With every doctor I saw (most only once), I repeated my belief that this was somehow connected to my period. Most didn’t really listen. They hooked me up to a vacuum to drain fluid from my chest cavity. My right lung was fully collapsed, my left partially collapsed, from a build-up of pleural fluid. The fluid was reddish brown. Masses clogged the microscopic vacuum tubes. Things didn’t add up. The immediate diagnosis in some doctors’ minds was Stage 4 lung cancer — since pleural fluid is a sign of that. But something in me knew it wasn’t cancer. By day three or four, after continuing to push my theory, they sent me for abdominal imaging. When the results came back, I wasn’t shocked — but I think some doctors were. They found a five-inch mass in front of my uterus. Some doctors were convinced it was cancer, that it had spread to my lungs. Another team wasn’t so sure. I was discharged after six days and scheduled with Gynecological Oncology.

Two weeks later, I had a hysterectomy and oophorectomy. And boom — I was in menopause. When the biopsy results came back, the diagnosis was endometriosis. The “mass” was my ovaries, fused together and surrounded by endometrial growths. Somehow, endometrial tissue had also escaped into my chest cavity, causing the pleural fluid build up.

At least, that’s how I understand it. All I know is: it wasn’t cancer and I was right. It had to do with my period. Take that, ER doctor! Sure, I probably would have gone into menopause soon anyway, but as with most of my medical issues, I stumped the doctors and became a lesson for medical students. Chapter 2 of my story would probably be about the worsening of my ADHD, my increasing inability to find words, names, and places when speaking, my worsening insomnia, and the crazy hot flashes. But after this story? Honestly, I don’t have the energy. Thanks for reading.