When I was seventeen years old I was in bed with my first serious boyfriend. It was the school holidays, his mum was at work and we’d been fooling around at his house. I was naked from the waist up and lying face down on the mattress with my elbows propping my body up. I looked down and noticed something dripping out of my left breast. I was alarmed and quickly put my bra back on.
When I went home I told my mother (thankfully I’ve always felt I could be very open with her) and she took me to the doctor. I was shocked and upset when I found out I was leaking breast milk. The doctor thought it was the contraceptive pill interfering with my hormones and changed me to a different pill. After a couple of months the problem went away. End of story, or so I thought.
When I was in my early 20s the problem came back again. This time switching contraceptive pills did nothing to stop it and I was forced to wear nursing pads inside my bras. On the positive side, at least I was single. I went to see an endocrinologist. They did a CT scan and found what they thought was a pituitary adenoma. But when I had a follow up MRI it came back clear. So the endocrinologist ran a whole bunch of blood work that also all came back clear. She then told me she had no idea what was causing my breast milk and prescribed me norprolac. She said I could only stay on the drug for 3 years and after that it would start to scar my heart valves, so if the problem wasn’t fixed by then I would be “up shit creek without a paddle.” Yes, she actually used those words.
The drugs did work. For about 12 months. Then my boobs got sore. Really really sore. So sore that I would burst into tears just shaking shampoo out of the bottle when I was in the shower in the morning. And the leaking came back. It felt like I was completely battered and bruised. My lymph nodes were always swollen. I was absolutely miserable. And by this time I was dating my husband. We were in the early stages of our relationship and I didn’t know how to explain to him the reason I didn’t want to take my bra off when we were in bed together. Eventually he guessed the problem. Luckily he was blinded by love and didn’t care haha.
My problems only got worse. More soreness, leaking, and terrible moodiness. I also started putting on weight and couldn’t seem to control it. Eventually I decided I’d had enough and went off the norprolac tablets but the problems only got worse. One day I was getting in the bathroom getting ready to take a shower. It was raining heavily outside and when I bent down to pick up my discarded clothing and put them into the laundry basket I noticed liquid all over the floor. I panicked and thought the roof was leaking. Eventually, I realised it wasn’t the roof. It was me. My milk had “come in” and I was gushing breast milk unlike anything I’d ever experienced before. I was horrified.
I went to see a new endocrinologist. He ran some blood work, telling me that ideally my prolactin levels should be under 300 mIU/L at the very most. The results? 1900 mIU/L. I had more prolactin than a woman in her third trimester of pregnancy. It explained so very much about my life.
The new endocrinologist was much more understanding and put me onto bromocriptine tablets. He said my body hadn’t responded to the norprolac and I’d been having “break through” leakage. He was impressed I’d managed to deal with the pain as well as I had for such a long period of time. The bromocriptine made me feel sick in my stomach and sometimes made me vomit first thing in the morning but the soreness and the leaking eventually started to go away. Six months later a test showed my prolactin levels had dropped to 500 mIU/L. I was so happy. But my levels are still high and often I get a tiny bit of leakage (only notice it in the evening when I’m taking off my bra).
High prolactin levels stop you from ovulating. They cause infertility. As if having endometriosis isn’t enough, the prolactin is now another hurdle I have to overcome on our quest to have a child.