Pausing for Six Months

Six months ago, I started having abdominal pain every day. That kicked off a six month period of chasing down a diagnosis and, ultimately, treatment. I saw my primary care doc, an ER doc, a urologist, my gynecologist, a GI doc, a second GI doc, and a psychiatrist. I had three CT scans, two endoscopies, one colonoscopy, two X-Rays, and two ultrasounds. My veins were poked at least monthly for blood tests, and I’ve given more urine samples than seems reasonable. I even gave a stool sample. That was loads of fun, no pun intended. I never got to meet Dr. House, but I was hoping to.

My symptoms were indicative of many possible diagnoses, and no certain ones. I had abdominal pain every day, all day, to the extent that I took four Vicodin every day. I had occasional nausea, loss of appetite, and some weight loss. I had slight diarrhea, and fairly significant (to me, at least) fatigue. (But that could have been the four daily Vicodin, I suppose.) Friends and family tried to guess at my diagnosis. Doctors admitted they were stumped. Every test conducted came back negative or (and this drove me crazy) “unremarkable.” Each doctor told me I should be happy that I didn’t have something seriously wrong with me.

I was. I was thrilled to pieces that they didn’t find cancer or a baseball-sized tumor. That was great. But what I did have was pain that affected my quality of life. I went on medical leave from work. Without a diagnosis, I couldn’t get my full salary. I was extremely fortunate to have stellar health insurance and an employer who wanted me to take time to get better. But making less money just caused more stress. And I still had pain, plus a new narcotic habit. (I joke about the “habit.” I don’t think I was ever addicted, but I guess that’s hard to say. When I finally got off of it, I had no withdrawal and no trouble leaving it behind.)

OK, so to make a short story long, I eventually had new symptoms. That’s what always helps House, too, you know. It’s the new symptoms that come up in the 40-45 minute mark of the show that helps him and his team figure out a medical mystery. My new symptoms were bleeding between periods and pain during sexual intercourse. The night I first felt that, I thought my husband had introduced some new painful trick into our act, something that included knives. (When I realized I was just having new pain, I got so distracted by the hope of a diagnosis that I had to remind myself we were in the middle of something.)

I had done so much research on-line during my months of pain that I knew which symptoms suggested which internal conditions. I knew that night that pain during intercourse often pointed to endometriosis. I called my gynecologist the next day, and had an appointment within days.

Dr. N is now my heroine. She listened to what had been going on for the past five months. I had seen her in January, so that we could cross gynecology off of the list of possible culprits. She did a pelvic ultrasound, Pap smear, and basic pelvic exam. My symptoms back then were mainly gastro-intestinal, and we checked her off my list of specialists. But when I saw her in early April and told her what had been happening, she said “Someone needs to take a look inside of you, and I’m willing to do it.”

She thought there was a ten per cent chance that she would find endometriosis during the diagnostic laparoscopic surgery. But she also thought that just the act of opening me could help rearrange things enough that the pain could go away.

I’d like to point out at this point that my PCP had been counseling me that “one day, you’ll just wake up and the pain will be gone.” My GI doc referred me to another GI doc, who didn’t even return my calls. And my shrink? He told me I’d made up the pain to somehow punish myself. So Dr. N saying that she would take a look inside to see what was actually going on? A breath of fresh air.

I had a pre-op appointment where my husband and I got to ask any questions we had. Then surgery was scheduled for a week later. It was to be out-patient surgery, taking anywhere from 45 minutes to 2 hours. At the end, we would know if there was anything in there that was causing problems.

I remember the pleasant sleep I was put into in the Operating Room, where Dr. N promised to look “extra hard” to see what was causing the pain. I also remember waking up in the Recovery Room to find Dr. N standing over me, smiling and holding my hand. I was groggy and tasted medicine and had a sore throat. But I croaked out, “What did you find?”

She smiled even bigger. “We found endometriosis.”

I felt ten times lighter, smiled at her and said “I love you.”

Then I cried to myself for the next ten minutes, until they brought my husband in to see me. We were both stunned. For five and a half months, I’d had daily pain. Our quality of life had deteriorated. Our faith in doctors had been eroded. Our sex life, our social life, and our financial stability had all changed. I was depressed, not sleeping well (I was a stomach sleeper, and that was, remarkably, one of the hardest issues I faced) and unsure of my mental health. I had started to wonder if the shrink was right. Then Dr. N took away the pain and told us we’d be fine.

I had a few days of post-surgical pain, and within 5 days, I was sleeping on my stomach.

What a long, drawn-out story. At least it had a happy ending.

But here’s the thing we’ve learned about endometriosis: it’s not curable. It’s totally treatable, but the work Dr. N did during surgery wouldn’t do the whole job. She burned off six spots of endometriosis. But there could still be more that could cause me pain.

So Dr. N, who I trust implicitly at this point, has suggested that we do a course of treatment for the next six months. The treatment is a drug called Lupron, and it will put me into menopause. Now, I haven’t told you this yet, but I’m only 33 years old. I wasn’t banking on hot flashes and mood swings for another 20 years.

I have my first shot of Lupron tomorrow, and another in three months. I plan to write throughout the treatment to catalog my symptoms, reactions, and experience.

That’s the basics of my health so far. Check back in to see how menopause in my thirties goes.