Jenny recently joined my facebook support group (now closed to new members, but a new group has just started, so come join us!) and posted about her experience with hypothalamic amenorrhea…
Hey! I’m new here. I just cracked open No Period Now What this morning and got to Chapter 3. I wanted to share a little bit of my story, since I’ve been inspired by reading a lot of yours.
I am a lifelong runner and I’ve been dealing with HA for the better part of the last 10 years. I ran competitively in high school then went on to run at the D1 level, where it was widely accepted to not have a period for months (or years), and I was actually told that this was a normal and acceptable thing.
I’ve been navigating the recovery on my own the last 5 months after finally going to see an endocrinologist to get to bottom of my issues.
The reason I finally decided to go in and get help was not that I’m ready to have a child. I’m 23 years old, and about a year ago, I started losing my hair.
It doesn’t come out in chunks and I don’t find strands on my pillow in the morning. It’s been a slow process of overall thinning, with large thinning areas on the top of my head (the front of my scalp). I never expected to deal with hair loss/receding hair line, especially not at the age of 22.
At first I was panicked, but it was also not noticeable enough for anyone to really see it or acknowledge that I wasn’t crazy. But now, my hair is noticeably gone in areas on top of my head. Here are a couple more photos.
When I went to the endocrinologist last winter, we found that my reproductive hormones were extremely low. We also did a bone density scan to see if my bones had improved since college.
I assumed that they would because I hadn’t been running as hard (but I was “triathlon training” and would exercise 3-4 hours a day with a lot of intensity).
My bone density actually worsened since college, putting me in the osteopenia zone. My doctor urged me to gain weight and lessen my exercise. She thinks that in solving my hormone issues, I will solve my amenorrhea and my hair loss. I’m hoping this is true.
I guess my hair loss is somewhat of a blessing because it has forced me into action. I want to improve my bone density now so I can run later in life, as well as address my issues with gaining weight.
So at the beginning of 2017, I tried to change things. I stopped doing cardio and starting weight lifting instead. I started eating way more calories.
But the stress of trying to navigate this change on my own, in addition to rapid weight gain, was so much that I was only able to sleep about 5 hours per night – not great.
I’m a type A sort of person that has to do things perfectly, and I also genetically have low estrogen. Women in my family (if they exercise or not) always have trouble with maintaining a normal cycle, so I assume that my cycle is pretty sensitive to things like over-exercising and under-eating.
It’s only been until the last few weeks when another runner, Tina Muir shared her amenorrhea story and talked about this book that I’m learning what it takes to really recover. Which for me, will include stopping my exercise for now and drastically reducing my stress. (Being 23 is stressful, believe it or not!)
So I’m going doing my best to go “all in” for recovery of my period, my bones, my hair, and my health.
Has anyone else dealt with hair loss or thinning at the top of your head as a symptom of your HA? Any thoughts on addressing this issue aside from my overall recovery?
And now, a few comments from other members of the group:
Erika: Welcome! And Yes. My hair came out in clumps. Looked really similar to what yours looks like. I was misdiagnosed with PCOS at first, but told to bring BMI up to a healthy weight (started in low 17). I think my hair loss mostly slowed or stopped by then. In pictures from that time I have visible new growth around my face. Once I got correctly diagnosed and went all in, my hair growth had been pretty good. It’s not quite back to its full lion status, but it’s getting there. Tried to take a pic, but I just look super creepy in all of them!! My weight also came on quick, but then leveled out. I think it’s really great that you’re doing something at 23!! Here is a before pic. I thought it was mostly around the cowlick, but just sort of looks thin all the way around.
I’d only gained 10 lbs and you can see all the new growth around my face here:
Here’s a better view of my hair. So it’s pretty wavy today and looks bigger just because of that… but you can eat least get a good shot of how the baby hairs filled in on the left side.
Lindsay: Hi Jenny, your story is SO similar to mine. I was a serious runner starting from the end of high school all the way until I recovered from HA last year (at age 30). This issue is SO common among runners and it’s really terrible how normal and acceptable it is perceived for female runners to not get their periods. There is an utter lack of understanding, even among doctors, of how big of a health issue this is, and it needs to change.
My hair came out too. And my skin was dry & dull. I feel like when you have HA, there are some big things in your body that aren’t functioning properly (like your fertility and your bone health!) but also countless small things. Your mood, your energy, your digestion, your “glow.”
I’m really glad that you’re taking action for recovery. I will share that for me, I needed to give up ALL exercise, even weight lifting, in order to recover. This was hard, but remember that during recovery you are trying to add enough body fat and rest so that your body feels like it is safe to ovulate again. Weightlifting is counterproductive towards that goal. The faster you recover, the faster you will be able to return to normal activity!
Here I am at a BMI of 15
BMI of 19 thick hair 🙂 xxx not particularly long but I’ve found my hair type, i.e., curly, tends to grow outwards not long hehe xxx
Oh and this was the bit that snapped to basically about 1-2 inches that has now grown 🙂
Thank you for reaching out. This is a very hard process to do on your own. If you can find a counselor or group for eating disorder recovery it may help. Honestly though for me this group was the most effective help.