Positives of Recovering from Hypothalamic Amenorrhea

I asked women in my new facebook support group to tell me about one thing (or more) positive about recovery or working toward recovery, which they did not expect. Some responses are shared below…

Lindsay: a sense of freedom and ease and ability to go with the flow that I had been missing since I was a teenager and that I never thought would come back.

Oh, another one: when my husband says, “Doesn’t a burger sound good tonight?” not having to make things difficult and try to convince him to go somewhere healthy and insist that I don’t really like burgers … and just get to enjoy the freaking burger together! With a side of fries!

One more, because there are so many: when I first get home after being on a long flight, not having to go on a run before I even unpack my bags and instead just collapsing on the couch and ordering takeout.

Florence: Less anxiety, babies, ice cream, support from all of my fellow HA ladies into motherhood, boobs and poops, not waking up hungry at night, my hair growing back, feeling like a normally functioning woman, saving my bones, sleeping better, spending more time with my family and friends, holidays without a single workout, not going round with my tupperwares, eating socially, finally using my time for something i love & aiming to save the world, discovering a more fun, more balanced person inside of me.

Nicole: Not having to worry about when to eat, what to eat, and listening my body tell me what it wants. My eating used to revolve around an IBS and paleo diet as well as my workout schedule – no more of that taking up space in my head.

Oh, and my laughter is so much deeper now. Happiness feels amazing, like its own high.

Louisa: Realised that restricting myself and stressing around food/exercise was 100% the reasons behind my gut issues. Since eating everything I’ve actually been pretty ok!

Also, Sleeping in, not having to schedule my week around my workouts, desserts, a pretty much healed digestive system, freedom around food, just food in general, boobs, oh and you ladies!
Also as I’m not yet recovered just knowing there’s more that will improve is all the motivation I need to keep going 💪🏻 x

Sarah: Crying. Like full body weeping. You know that saying, “have a good cry?” I haven’t been able to do this for months and it’s felt strange. In the past week (just went all in), I’ve wept and I feel I’ve been cracked open in a healthy way.

Mary: Resurrection of my libido!

Corey: Realizing how high strung I was, and how my anger was on a hair trigger!! I was ALWAYS planning out the food I was going to eat, or rehashing the food I had just eaten. I still focus on food a lot, but now it’s looking forward to all the great stuff I get to eat, and enjoying it! I also didn’t expect all of the stories and personal growth shared in NPNW to apply to me as closely as it did…man, did I try to fight it! “But that’s not ME…. I’M not like that….” 😐

Liz:  I no longer feel out of control around food. I don’t feel disgusting anymore for feeding my body what it needs or weighing what it wants to (for the most part, there are some bad days). I had a list of “bad” foods I thought were poison to me (because if I had ever binged on them they went on this list of supposed poison trigger foods) much longer than the list of foods that I deemed pure and wouldn’t cause binging (protein veggies select oils). I had to go to the gym every day sort of like paying for an ok day. If I didn’t get to it for some reason I felt like it was an automatic terrible day. I’m definitely not in the best place but so much better and I’m so grateful. I usually am grateful to nourish my body. I try to eat mostly foods that I believe are nutritious for my body and feel grateful for that. If I am hungry or crave something I don’t usually think it’s an urge to binge but maybe that… I’m hungry and my body is telling me. I no longer eat salad for every single meal… I no longer feel like many of the foods I thought were poison are (some I do still struggle with… it takes time and is a journey to completely free myself and don’t know if I’ll ever get there… but the list is def a lot smaller)… I can eat all u can eat sushi sometimes usually no guilt. Chocolate sometimes ❤️… I’m happy to enjoy a treat once in a while and see now that I can have one or two when I want and not have a compulsion to stay up and binge on 20 like I feared)… I can walk some mornings (hope to get back to running sometime bc I enjoy it) and others rest if I don’t feel like it… and it’s not the end of the world and I can function and have an ok day without exercise. So there are a lot. I have a way to go and there are def some weird thoughts about food still but I’m in a much better place and someday if I’m a mom I feel I’ll pass on much better attitudes that I would have.

Oh another very random that i was thinking of recently during a discussion with someone… i used to have major bladder issues for most of the time i had HA. I thought i might have interstitial cystitis as I frequently had infections, and even when I didn’t i often felt burning and sharp pain sensations… very strange another thing no one could quite figure out 🙁 It mysteriously went away around when I recovered from HA. I have never had any pain or a bladder infection since. I can’t help but wonder if it was related to my super low estrogen levels…

Erika: Bladder issues is a symptom of low estrogen. 😊 I had them, too. Mine was more frequency (now if I go in the middle of the night it’s 1X where used to be as much as 4Xs). Also if I had to go, I had to go. Extreme urgency. Some of mine could have also been kidney function just from low body weight, too.

This is just a sampling of the comments. Are you ready to dive into YOUR recovery and discover how your life will change?

<3

Nico

Missing period and hair loss?

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!

Oh I forgot to say one thing! At my last haircut, my hairdresser’s jaw dropped open and she said “What in the world have you been doing, your hair looks so much thicker and healthier!” And I was like, “well, I stopped running.”
Natalie: So i am not recovered yet but have gone from bmi 15 in June last year to around 19 currently. Last year a big bit of hair literally snapped off. I have curly hair and atm its the thickest it has been in years 🙂 xxx

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 🙂

So basically there is hope! I am probably one of a few on here who have been very, very unwell. I still hold out hope for periods to return but little bits like hair growing thicker keep me going because my body IS capable of repairing damage just like yours will be too hun 😍😍😍 Oh and those glasses in the original pic? Yep I haven’t needed them at all in months because my eyesight has improved. Sorry for the waffle and hope it helps 🙂 xxx
Nadia: Great job on taking the steps to recover from HA. I also had A LOT of hair loss from HA. I also had subclinical hypothyroidism but it was directly related to HA. Recovery improved my hair immensely. It takes a long time to grow back, but it does come back.
Clarice: Yes that exactly what my hairline looked like… I would definitely suggest lowering exercise and upping your food as much as you can…. Maybe start looking into the fact you may be holding on to some other emotions around food and exercise… Working with someone can be helpful in the transition! Also maybe check thyroid levels…
Florence: See these weird bangs? This is the hair i was denying myself to have by never eating enough! Pretty much same location as yours right? It took a while but as soon as you’ll start fueling properly, it WILL grow back!
Anna: I have those weird bangs too and never even thought about that being one of the many positive side effects of recovery!!! I used to always have these weird short little hairs on my left side that would never grow. And I just assumed those are non-growing hairs lol But a few months ago I noticed they’re getting longer…
Nicole: Here’s some hair growth after reaching a BMI of 22!!! See those hairs sticking up? I have a few sections of those through my head, granted I didn’t have bald spots, but seems like more follicles (hair and other 😉 are waking up.
 
Shanta: Yes. I kept my hair short because it was so thin. Even so I was getting bald patches.
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.

The journey from type A to type play, the journey from control to love, is often rocky. But it is, ultimately, exactly that: a journey to love, and the end result is as good as that sounds and better then any love story you will ever watch/ read. What is more you deserve that amount of love and joy, you always have, and the world will be a little more right every step you take towards it.Many women here come from an eating disorder background, and we all have each others back.You can do this.
Jenny responds:Thank you so much for sharing. I’ve struggled to reach out to get help but this seems like a great place to do it. It’s reassuring to find others that have dealt with the mental struggle of hair loss. I appreciate the support.
So as you can see, hair loss is not uncommon with HA – but like so much of the other damage done to our bodies through underfueling, overexercising, stress – whatever your personal combination may be – the effects are reversible.
<3
Nico

Can you ovulate but not get a period?

I have heard in quite a few places now that it is possible to be ovulating regularly but not getting a period, or women think they are ovulating but not getting that monthly bleed.

Women who are experiencing amenorrhea will most likely ovulate before they get their first post-amenorrhea period. (A few get an anovulatory period; bleeding without ovulation beforehand). If one happens to have intercourse around the time of this ovulation, it is absolutely possible to get pregnant, therefore getting pregnant without ever getting a period. And that’s where the idea of ovulation without a period arises.

But, monthly ovulation without getting a period is only feasible under very limited circumstances:

  1. On the Mirena IUD. The hormone doses are low enough that they do not affect the reproductive system in general; locally the hormones prevent buildup of the uterine lining and thus many women on the Mirena IUD will ovulate but not get a period. (Note that the manufacturer states the Mirena should only be used in women who have been pregnant.)
  2. A physical abnormality that prevents bleeding, such as Asherman’s syndrome or a reproductive system defect that does not allow for discharge of the uterine lining.
  3. As stated above, if pregnancy occurs on the first post-amenorrhea ovulation.

Barring that…. The mechanism does not seem plausible.

In a normal menstrual cycle, the egg-containing follicle starts growing at the beginning of the cycle and the uterine lining is thin. As egg/follicle growth and maturation continues, estradiol is secreted. The estradiol leads to an increase in the thickness of the uterine lining. The lining thickens as the dominant follicle is selected and proceeds to maturation. When the egg/follicle is mature, the increased estradiol leads to a sharp peak in luteinizing hormone (LH) that causes ovulation.

I do not believe that it is possible to have this LH surge without sufficient estradiol (and therefore a thick lining to shed).

And while it may be true in a small minority of cases that the lining does not respond to estradiol and get thicker (this IS the case with the Mirena IUD), in a normal menstrual cycle the lining will thicken. My suspicion is that if a woman’s lining did not respond to estradiol by thickening, that would always have been the case and she would never have gotten a period – primary amenorrhea.

After ovulation, progesterone is secreted by the cells that surrounded the now-released egg, maintaining the thickness of the lining and causing other changes that prepare the lining to accept an embryo. If no pregnancy occurs, progesterone drops and the lining is shed.

If progesterone levels are lower than normal, the lining is shed earlier.

What do you think? If you believe you’re ovulating but not getting a period, have you confirmed an increase in LH by ovulation predictor kits, or confirmed ovulation through temperature charting?

If you are getting changes in cervical mucus each month that seem to indicate ovulation, but no bleed, it is possible that your body is trying to ovulate but not quite succeeding.  If that’s the case… Look into whether you might have hypothalamic amenorrhea (HA). (Asherman’s syndrome should also be ruled out.)

Nico