Hypothalamic Amenorrhea 101

Originally, one of my main reasons for starting this blog was to spread the word about hypothalamic amenorrhea (known as HA from here on). Of course, like the (slightly) obsessive compulsive that I am, now I'm addicted to the blogosphere (and to all you wonderful followers and readers) and wouldn't quit even if HA was as understood in the world of infertility as PCOS. But I do want to spread the word, because the thing about HA is that it is mostly preventable. Young women often think they are doing their bodies a favor by eating "healthier" (as in, more restrictively) and upping the exercise. I was absolutely thrilled when, at 19, I finally lost the "extra" 30 pounds that had been growing on me through high school. I thought I felt way healthier, but actually, I think I just felt thinner. When my periods stopped coming and my mom made me go to the OB, she didn't tell me that I should gain a little of the weight back. Instead, she sent me off with a prescription for the pill. (Typical Western medicine--masking the symptoms rather than fixing the actual problem. Not that I'm bitter or anything.)

The problem for me and many other young women like me is that hypothalamic amenorrhea is not well-known or understood among infertility sufferers or doctors. I have searched the web high and low to try to find some semblance of a statistic on how many HA sufferers there are out there, but such a statistic is not to be found, or at least not easily. Basic information about HA is out there. But nothing that is actually very helpful for someone who has recently been diagnosed with it, or at least begun to suspect that she may have it (speaking from experience here). Many infertility websites have approximately one paragraph on HA. They tell you that your cycles stopped because you had an eating disorder or you exercised too much. These habits sent your body into stress mode, and your hypothalamus stopped sending the signals to your ovaries to produce and ovulate eggs. They say nothing about how recovery from HA is a long and bumpy road that must begin with weight gain (a huge hurdle for HAers, most of whom have trained themselves for years not to gain weight). Recovering from HA is far more difficult than getting it, and most of us don't start the recovery process until we're ready to make babies, which of course increases our anxiety level and probably slows down the recovery even more.

When I first realized that I had HA, I was frantic to find an answer on the internet for how I could get my cycles back. But none of what I found really helped. I'm not and never was anorexic or an over-exerciser. So...my hormones have just stopped working?

Fortunately for me, a google search of "hypothalamic amenorrhea" did yield two lifelines. First, I found Nico's blog post about everything she had learned through her own experience with HA. Second, I followed her lead over to the Hypothalamic Amenorrhea thread on the FertileThoughts website. I read through some of the thousands of pages of discussion that have taken place on that board, dating back to 2005. I won't go into too much detail about the board because you probably only care if you have HA, in which case you should head over and join. Let's just say I'm incredibly thankful for it. 

I also won't go into all the details about HA and what we've learned collectively on the board about how it works, how it responds to treatment, and how most REs and OBs seem not to have a very good understanding of it. Head over to Nico's blog if that's what you want. I'm just an English major, so the best I can do is tell my story. (That's what you're here for anyway, right? To hear me talk about myself?) And encourage you to warn your skinny triathlete friends away from undereating and overexercising. Not that they'll listen if they're under the age of about 24, but at least they'll know where to go when they are ready to get pregnant and still aren't having periods.