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

How long will my cycles be?

Have you just had your first period party? The utter thrill when you are working to recover from hypothalamic amenorrhea (HA) and you see blood in your underwear is indescribable. I got my first bleed when I was on vacation. It had been really tough because my sister was announcing to our family in South Africa that she was pregnant; we were supposed to be pregnant together but I hadn’t even gotten a period yet, and here she was – Kate and 2/9 as my Uncle put it. I went upstairs to the bathroom and there was my first glorious period. I felt like a million bucks, I had *done* it!!!!  I could finally start trying to get pregnant myself!

After that celebration, though, comes another wait. This one is so tantalizing; you got a period, you hope that if you just to keep up what you’ve been doing you will  ovulate again and get another… or if you’re trying to get pregnant, you’ll get that oh so magical positive test instead. But for many women newly recovered from HA, cycle day 14 (when ovulation happens in a “normal” menstrual cycle) comes and goes, with nary a fertile sign. This can feel incredibly defeating (I know – in my case I randomly had an ultrasound scheduled on CD13 of my next cycle and we saw a nice juicy 13mm follicle which had my heart soaring, until I went back two days later and it hadn’t grown, and my doctor told me we’d need to do injections…).

But it is extremely common in women with HA for it to take a few cycles for the length to normalize, and this is one reason we say in No Period. Now What? to wait at least three cycle before making any changes in terms of eating, exercise, or stress.

I think that it is helpful to know exactly how common longer cycles are, and how long it typically takes for them to normalize, so I graphed the cycle length data I had from the surveys I did for NPNW. I took the data from each person who had at least one natural cycle, and ended up creating four graphs, split by number of cycles to get pregnant (most of the women who took the survey were trying to get pregnant).

Occasionally a woman will get pregnant on her very first ovulation–before getting her first period–in which case I do not have cycle length data (this happened in about 5% of women who ovulated naturally prior to any treatment). Other than that, in the data from my survey respondents, it took between one additional cycle to up to 12 to get pregnant the first time (in the women who provided cycle length data), so I split the graphs into one cycle to get pregnant (so these are women who had one period then got pregnant on their next ovulation), between 2-4 additional cycles, 5-7 cycles, and 8-12 cycles.

Here’s the first one – those women who took only one additional cycle to get pregnant. You can see that the cycle day of ovulation ranged from CD13 to CD63. (These were natural cycles as my requirement for using data for these graphs was that there was at least one natural cycle; there were certainly people who got pregnant on their first oral med, inject, or IVF cycle, but I will leave that for another day.)

The next graph shows those for whom pregnancy took 2-4 cycles… oh, but first here’s the figure from the book that shows the cumulative pregnancy rate by cycle so you have an idea of how long it is likely to take (if you desire pregnancy at the moment). Not everyone supplied cycle length data, so the numbers on these cycle length graphs don’t give a good sense of how long it took on average. Of my survey respondents, 56% achieved pregnancy within the first three cycles, and 84% within the first six. This is very similar to other studies of similar nature.

Back to those who took 2-4 additional cycles after their first period to get pregnant. This graph is a little more complicated, but if you just look at the first versus second cycle you can see a significant decrease in time to ovulation for those who had long initial cycles. The one case where cycle length increased, the woman in question decided to increase her exercise amount. You can see why we suggest not doing that right away, her cycle length increased from 45 to 60 days. This graph also includes some information about cycle lengths for those who used either oral medications (i.e. Femara or Clomid), or injectables. Some started with treatment but then after failed cycles got pregnant naturally (like the one woman who had ovulation on CD12 with injects, red triangle, on her first cycle, also used injects for cycles 2 and 3, but then got pregnant naturally cycle #4). Others had a natural cycle but then moved to treatment, like the woman whose first post-period ovulation was on CD70, reduced to CD24 with Clomid (and pregnant, filled blue square). Another example of this is the woman whose first post-period ovulation was at CD45, increased exercise and up to CD60, decreased exercise again and ovulated CD45, then used Clomid, ovulated CD18 and was pregnant.

The next graph shows those for whom pregnancy took between 5-7 additional cycles after their first period. Again you can see the commonality of a marked decrease in cycle length for those who had long initial cycles, and also a trend toward shorter cycles when oral meds were used. In this group were seven women who initially used Femara or Clomid to ovulate, but then after failed cycles stopped taking the meds and cycled naturally. Note that the filled red triangle indicates a pregnancy achieved on an injectable cycle (adding the legends to the graphs was taking me too much time).

Finally, those for whom it took between 8-12 cycles to achieve pregnancy. In this case the bump down to “CD 0” indicates no ovulation on that particular cycle. Here you see somewhat of an anomaly, with one woman whose first post-period ovulation was on CD63, which didn’t decrease until she started on oral meds, and another whose subsequent cycles were longer than her initial one. However, as you can see from the other graphs, this pattern is definitely not the norm. In either of these cases I probably would recommend oral meds (assuming that eating and exercise were not more restrictive). And again, filled red triangle indicates pregnancy achieved through injectables, black triangle shows a miscarriage on an injectable cycle.

I know that this is a lot of information, kudos if you’ve made it this far 🙂 I am happy to answer questions, please leave a comment if there’s anything unclear or another way you’d like me to analyze the data.

<3 Nico

Reader Questions

I thought that now that my kids were back in school I’d have all kinds of time to post here – but somehow between being PTA president, starting a PTO at my youngest’s preschool, getting involved in local politics, reading a bunch of books and starting to lift weights again (because I was feeling weak NOT for body sculpting purposes), and yes, getting a little mired in the national election coverage too… not so much. But hopefully this will start a new routine!

I asked in my facebook group for questions people would like answered. If you have anything else you’d like me to address, pop it in the comments and I will do so on another post!

1. What do you think about soy and other estrogen increasing foods?

Many people think that the issue when one has HA is low estrogen. This is not the case. The issue is that your hypothalamus is not sending the signals to your reproductive system. Once your hypothalamus turns back on again, your estrogen will rise appropriately. So as far as foods go – I advocate moderation on all fronts. It’s fine to eat some soy but I see no need to specifically increase the amount you’re currently eating. If you’re eating a “lot,” I’d advocate cutting down and substituting with other protein and fat sources simply in the interests of eating as many different types of foods as possible.

2. Does color and length of your period indicate anything?

This one actually comes up a lot! Many women are afraid that their period is “too light” when they start cycling again. My ‘normal’ post pregnancy has been one heavy day (which I define as filling a regular tampon every 2-4 hours), a medium day (filling a tampon every 6 hours or so), two light days (a tampon every ~12 hours) and then a day or two of spotting. Something around that seems to be reasonably common. Some women obviously have much heavier periods, some have significantly lighter periods – but anecdotally I haven’t noticed a correlation with ease of getting pregnant. Also, interestingly, it seems that not all the lining is shed as “blood” but some can actually be resorbed into the uterus. So I think that really what is important is what is normal for you. If your periods after recovery are much lighter than before, that may indicate a need to relax a little further on the exercise, eat a bit more, or see what you can do about relaxing (all of which we cover in our book :)). If they’re much heavier, you may want to check in with your doctor, just in case there is another issue at play like endometriosis. If they’re normal for you, however heavy or long that may be – chances are excellent that everything is fine. If you are trying to conceive and not getting pregnant, you can discuss with your doctor, but barring that – go with the flow. (yes, pun intended ;))

3. How long will it take to recover?

In a previous post I discussed whether time to recovery was associated with length of time without a period, and the answer in that case seems to be no. The median time to recover is about six months – some shorter, some longer. In general, the more quickly you are able to go “all in” the more quickly you will recover your cycles. I wish there was a formula I could plug your information into that would spit out an answer – but unfortunately life doesn’t work like that. Your particular recovery formula will depend on what your BMI was/is and how quickly you’re able to increase that to a ‘fertile’ BMI of 22+, how much exercise you did and what you’re doing now, what your food intake looks like (hint: the more variety the better, assuming sufficient energy), and what your daily stress and anxiety levels are (and unfortunately this is a vicious circle because stressing out over how long it will take to recover can make it take longer!).

4. I can’t go all in. I don’t trust the process.

From my experience what really helps here is seeing other women recover. (Read the success stories in our book and join my facebook group!) When you find someone just like you and read about what they did to restore cycles or get pregnant, it makes it that much easier to believe that it can and will happen for you. Keep reading the successes, keep listening to the other amazing resources that are out there (I cannot recommend Meret Boxler’s podcasts enough, she will introduce you to everyone you need to know in this arena), do as much as you can to work toward recovery (fake it ’til you make it) and one day it will click for you too. I have seen it countless times. It will come.

5. How do you track food while in recovery and know you’re eating enough?

This is a tough one because really, tracking is a big part of the problem. So it’s hard to see it as part of the solution too – but I know that when you’re starting on this path from a place where you are tracking it is hard to let that go. What I did initially was to increase the amount of calories I was allowing myself each day (“allowing”…that’s a whole different topic) and I continued meticulously tracking as I had been. I’m a numbers person so that was hard for me to let go. But there came a time when I’d skip a day… and that quickly grew to two and three and then to not tracking at all anymore. At that point I had a good sense of how much I needed to eat each day and I was much better at listening to my hunger signals. If you’re not tracking now I wouldn’t suggest starting unless *maybe* you log your food intake for a day just to see where you’re at. Really the best way to know you’re eating enough is two-fold: 1) if you’re under a fertile BMI to make sure you are gaining, and 2) notice your fertile signs (chapter 16) and obviously return of your period. And yes you often have to go beyond what feels comfortable for you, both in the amount you’re eating and in how much weight you gain… but I *promise* you, the return of your cycles and your fertility is worth that discomfort. Again – seek out success stories and read about how little women care about what their body looks like when they see that first sign of red, or get their positive pregnancy test.

6. If a period was lost with no exercise, will adding exercise while eating more calories, fat, carbs delay recovery?

Abso-freaking-lutely yes. I was over in a different facebook group today and a women commented on how she had just started a new exercise routine, going five days a week instead of the one she had been doing, and how her ovulation was six days late (and still nowhere to be seen). Especially if your body isn’t accustomed to it, the increased cortisol from exercise can do a number on your hypothalamus. Walking and yoga, *light intensity* are probably okay but I would add even those slowly. Also, I noticed a big effect of exercise on my own cycles (p. 162 in our book) even while gaining weight.

I hope you found this helpful, and if there’s anything else you’d like to know, drop a comment!

Embracing the New You

I just went to see the movie Embrace with my new friend and fellow HA warrior Kate. It was lovely meeting her in person and we spent a lot of time over dinner before the show bemoaning how our society has encouraged us toward the predicament of treating our bodies so harshly in an attempt to be healthy – and also how much more common hypothalamic amenorrhea is these days with the latest trends in “clean” eating and strength and endurance training for women.

embrace_showing

Anyway, the movie was utterly fantastic and I cannot recommend it enough. Whatever your personal situation is, I can pretty much guarantee that Embrace will speak to you. I love the idea that is becoming more and more commonplace: that we should love ourselves and others for what we accomplish and *think* instead of what we look like (and heck, let’s do our best to pass this idea on to the next generation!). I know, not really a newsflash anymore, but at the same time it’s an idea that is easy to give lipservice to without truly believing. Embrace took me even further than I was down the path of believing. Find a way to see this movie! #ihaveembraced

Along the lines of switching your outlook, a woman recently posted in a facebook support group of which I am a member (join mine here) about how she was struggling with feeling frumpy and not hot when she went into a fashionable store to try on some new clothes. The responses were amazing, insightful, and inspiring, which is why you should join too if you’re working on recovery. Who doesn’t need an army of HA warriors at their back?

Lindsay said, “I’m so sorry you’re having a rough day. I understand; I had MANY of them. The next time you go shopping and you don’t like how something looks when you try it on, try to shift your mindset from “This fabulous shirt doesn’t fit my body” to “My fabulous body doesn’t fit this shirt“. There is nothing wrong with your body; it’s the shirt that doesn’t work. Take it off, and try on a different style. Do you remember the show What Not to Wear? I like to think of that show every time I go shopping, because Stacy and Clinton could always make ANY person look fabulous, no matter how big/small/short/tall. It’s just a matter of finding clothing that really flatters you. Body love and acceptance takes time… you’re just getting started here, and the changes are fresh and new. Over time, you’ll get used to your new self, and you will grow to love it as much as you did your old self. Maybe even more. Remind yourself daily that you are a multi-dimensional person… you are not just a body. And truly, the other aspects of your being – your personality, your sense of humor, your wit, your charm – are what people are most drawn to. Don’t let any perceived ‘imperfections’ of your physical body spoil the rest of that.”

Yes, yes, YES!

<3

How long will it take to recover???

One of the unique aspects to our book on recovering from hypothalamic amenorrhea is the data we include from our survey of over 300 women who have experienced missing periods. I also love having the data set because when people ask me questions that I didn’t address in the book I can go and get the answer pretty quickly.

A question that was recently asked was Is there a difference in time to recovery depending on how long one’s period has been missing? The range of time for which periods were missing for the women who took our survey was from three months to over twenty years!

However, I found that there was hardly any difference in time to recover based on length without a period. Note that the start of working on recovery was defined as the time at which eating more / weight gain commenced. The data are shown below (note that the scale is logarithmic, not linear):

MonthsWithoutCycleVsTimeToRecovery

Each point represents one woman, with the amount of time she was without a cycle on the Continue reading

Activating your hypothalamus

Women who have missing periods often question why their cycles aren’t returning when they get to a weight at which they formerly cycled, or at the same exercise level they were at when previously cycling.

The reason is that it takes more of an energy surplus / exercise decrease to get the hypothalamus to turn back on than it does to keep going once it has restarted. It reminds me a lot of the activation energy required to start a chemical reaction.

Chemical reaction activation_energy

The amount of energy required to get the reaction to run is greater than the difference in the energy of the reactants (starting material) and products (ending material) because the chemicals involved need to meet in the correct orientation and with enough energy for the reaction to take place. Continue reading

What to do if you’re a competitive athlete with a missing period?

Our hypothalamic amenorrhea / female athlete triad recovery book No Period. Now What? describes the causes of HA, many of the short- and long-term effects, and offers a Recovery Plan that has worked for hundreds of women. We also offer support throughout in the form of our own experiences, anecdotes from other women in similar situations, and advice we have gleaned over our years working with women to restore menstrual cycles.

There are two major components to recovery, both of which are covered in great detail in our book, but simply put, they are to eat more and cut out high intensity exercise.

Easy, right? Except, really, not at all. It is incredibly difficult for most of us to relinquish the food myths that we have been taught over the years, to let go of the rules that we have placed on ourselves, and particularly, to gain weight. For many it’s even more difficult to stop our cardiovascular exercise, whether it be running, biking, classes, or being a ‘gym rat.’ That’s why we spend more than a hundred pages on the rationale for the recommendations, ideas to implement them, and support for all the mental work that needs to happen.

While it’s hard enough for a recreational athlete to cut out high intensity exercise, for a competitive athlete this might truly be impossible. If you’re in high school and hoping for a college scholarship, or already in college being provided funds to attend, or a professional athlete – you might not be able to just quit for a few months. There is so much riding on your ability to perform.

relay Pole_vaulter Division’s_own_earns_Camp_Pendleton_Female_Athlete_of_the_Year,_runner_up_in_Marine_Corps_award_140313-M-PC317-003 Women 60 m final during Doha 2010 World Indoor Championships, by Erik van Leeuwen

(Photo credits, L to R: Erik van Leeuwen, Atitaya Kongkaew, Sgt. Timothy Lenzo (https://www.dvidshub.net/image/1189561), Erik van Leeuwen http://www.erki.nl/pics/main.php?g2_itemId=33469, all via Wikimedia Commons)

And yet.

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Some new reviews

I am so utterly thrilled by the reception of our hypothalamic amenorrhea/female athlete triad recovery book so far – we seem to have met our goal of providing a resource that can help women to recognize what habits might be less than healthy, and encourage and support them through making the necessary changes. I’ll let other’s words speak for themselves.

Ashlee, in an HA support group on facebook:

Nicola Rinaldi I just wanted to tell you how much your book settled all my feelings towards HA. I bought it last night and read the whole thing already. I have to say I’m in the medical field and felt silly that I didn’t know much about the science behind HA. Now I feel good about going to my first RE appointment coming up and what to expect. I can’t express how thankful I am to have all you wonderful role models in this group. I am continuing to gain weight and reduce exercise. Normally when I get stressed I eat less and run more. I now am doing the opposite and doing really well. So since this post is getting super long in conclusion I just wanted to thank everyone for being amazingly strong. I hope to not only have success in pregnancy in the future, but just as important to focus on actually living life and not focusing on and obsessing over what I “think I need to look like”.

V, in response:

Ditto to Ashlee! My husband just read the chapter for partners last night, and we both can’t stop talking about it. He said it feels like you (Nico) know my wife so well, and it gives him such encouragement to know we can get through this!

Amanda, in a different facebook group:

Loving chapter 11, Nicola Rinaldi! So many heartfelt nuggets of understanding, motivation, and inspiration! LOVE it! And just what I needed to read this morning.💜💜

Lauren, via email:

I’m only a little way in, but it’s making me feel better already… I’ve had HA since coming off the mini-pill three and a half years ago. (Plus no periods for eight years whilst I was on that pill, since the docs said that was a “normal” side effect… Plus wonky cycles even before that — in hindsight, probably due to constant dieting.)

I genuinely didn’t realise it could have anything to do with my food intake/exercise until less than a year ago… No doctor ever mentioned it as a possibility, and I thought I was super “healthy”… Anyway, I’ve gained 20lbs over the past few months and have been really struggling with keeping up my resolve, so I feel like I stumbled on your book at just the right time!

Thank you so much for helping me feel like I’m not alone… And giving me hope that I still might get my period back!

Marcy, via facebook message:

Just finished your book, it is amazing, as I read I identified with so much of it, thank you for guiding me through making changes to my lifestyle and essentially starting to get my life back. I am only at the beginning of my journey to recovery but I feel so inspired, in fact I think I will read it again to reconfirm and keep me on track, thank you so much, I look forward to feeling better about myself, my health and all the wonderful times that lay ahead for me!!!

Sarah, in another facebook group:

The knowledge and women in this book helped restore my health and bring this little beauty into my life. “No Period. Now What?” continues to save me because honestly with breastfeeding I wasn’t eating enough and after reading a few chapters I changed my ways to keep HA at bay. So inspiring to be reminded that food is fuel and when given what it needs my body can be a baby-making machine. Thanks Nicola, Lisa, and Stephanie!!!

Nico’s story

I’ve had quite a few people ask about my story; my experience with hypothalamic amenorrhea, recovery, getting pregnant, and what led me to writing my HA recovery book. So here’s the full tale. At this point, I’m recalling events of 10 years ago which in many ways has lessened the emotional sting. If you’re interested in reading about what happened at the actual time I was going through it, you can start here, on my old blog. Anyway…

My journey to hypothalamic amenorrhea (HA) and back was a long time in the making. In high school I was relatively carefree; I had a group of close friends, thought exercising was for the birds, and maintained a ‘normal’ weight without issue. I had participated in softball in middle school but wasn’t particularly good, so my high school sporting career consisted of finding the least unappealing gym classes; volleyball, squash and badminton were my favorites. My competitive urges were mostly satisfied by my flute playing.

In college I took a few ice skating lessons (I had ice skated as a kid but never competitively) and started becoming more active; joining a gym, running, playing tennis – much of it encouraged by my boyfriend of the time. I still mostly ate what I wanted to, again maintaining a ‘normal’ figure – was somewhat proud of the fact that there was no ‘freshman fifteen’ for me.

The next stop on my journey was the company where I’d worked as a summer intern while in college. An up and coming biotechnology company in the Boston area. It was a fantastic place to work as a 20-something; lots of company activities that I now joined in on, like volleyball (still one of my favorites) but I also tried softball and soccer again, among other pursuits. After I met my to-be-husband (at the company-sponsored social hour on a Friday evening), he got me hooked on playing ice hockey. He organized the company’s weekly “pick-up skate” where a group of guys would get together and play a friendly game. I told him one night as he was heading out that it looked like fun and asked if I could join. Mark got his gear from when he was a teenager out of the attic for me. It fit relatively well and off I went. The guys were super nice, no-one ever made me feel like I didn’t belong, and I was totally hooked. I started participating in clinics to improve, and playing on some local teams.

Nic hockey

After four years I went to MIT for graduate school. Mark was gone each week from Monday through Thursday on business. That meant I had a lot of free time on my hands, during which I occupied myself with various forms of exercise. I had grown to love my sports and played ice hockey, volleyball, squash with my labmates, lifted weights a few times a week, would bike from home to campus (about 7.5 miles each way), and then we’d golf on the weekends, walking the course instead of riding a cart. All well and good.

Until the labmates I hung out with most of the time decided they needed to lose some weight and were going on a diet. I figured “Hey, I’ve got some love handles I could stand to lose” (and although I didn’t think so at the time I realized afterwards I was also influenced by media images, like Natalie Portman’s abs in one of the Star Wars movies, sigh). Natalie Portman Star warsSo I joined them. They were limiting to 1500 calories a day, I thought that would work for me too; as a female I needed fewer calories, but I exercised more so the equation in my head suggested the same amount would work out well.

 

Eh, not so much. Well… in the short term I lost a lot of weight. I thought I looked great. I thought I was healthy–after all, you read all over the internet to “lose weight to have a better chance of pregnancy.” I also danced around with obsession. I was tracking all my calories in a spreadsheet, and ended up aiming for a net of around 700 calories a day which I know now is incredibly unhealthy. I was getting a high from seeing the number on the scale go down. I was pulled back from the brink through reading the story of a friend of mine who was going through a very similar experience. She posted about the Minnesota starvation experiment and as I read about the experiences of the men in the study I saw a bit too much of myself. Particularly one night when I woke up at 5am starving. I “allowed” myself a bowl of cereal, and that was a turning point for me.

A little more pullback from my restriction occurred over the next few months as I went off birth control pills with the idea of getting pregnant. Unfortunately, no period resulted.

I went to see my ob-gyn who ran a few tests and suggested that I might want to eat a little more / exercise less, but didn’t give me any solid guidelines. Over the next six months we continued with further tests, and she spoke to a reproductive endocrinologist, finally suggesting that I see her instead. A few more tests and I finally had a diagnosis of hypothalamic amenorrhea.

I did, during those six months, see a nutritionist who gave me caloric target about 700 calories per day more than I had been eating at the height of my restriction. Knowing what I know now, however, I still think that had me at a deficit. She did provide me with some great ways to add calorie and nutrients: switching my daily glass of milk from non-fat to 2% (full-fat is even better, again, hindsight), adding olive oil when I cooked, handfuls of nuts…

When I finally got to see the endocrinologist, she told me that it was highly unlikely that I’d get my period back, especially as I’d been somewhat irregular when I was a teen. So, the plan was that I would start on injections to cause follicle growth and ovulation, after I got back from a three week vacation to my homeland of South Africa.

Well, wouldn’t you know it… during that three weeks I actually had a period! In hindsight, I totally credit my lack of serious exercise during that time (and probably decreased stress). We did quite a bit of walking and played a few rounds of golf, but there was no ice hockey, volleyball, squash, biking, maybe one or two weight sessions when we were staying at hotels, but nothing regular. I *rested*. And ate too. My reward was a bleed, which was particularly thrilling as it came as my sister was announcing her pregnancy to our relatives; we had planned to be pregnant together so the fact that she was pregnant and I hadn’t even ovulated yet was a bitter pill to swallow.

After that vacation I had already scheduled a couple of reproductive endocrinologist (RE) appointments. I went to my first with high hopes, I was on cycle day 13 (right around when you might expect to ovulate in a normal cycle)… they did an ultrasound and I had a 13mm follicles (not quite large enough to ovulate, but almost certainly growing!!!!!!) My second appointment was two days later, so I went in expecting to see that my follicle was growing and I’d ovulate on my own, but no such luck. It was quite the blow, going from the high of “my body rocks, I have an egg growing” to “craaaaaaaaaap, it’s not growing after all.”

So, down the rabbit hole of injectable gonadotropins we went. My first cycle resulted in my period at 10 days past ovulation (dpo) which is early and unlikely to be sufficient for an embryo to implant (known as luteal phase defect, common in women with HA). So we tried again, with progesterone support to avoid the luteal issue. Another BFN. Followed by two more. I was incredibly discouraged – I’d gained weight (to more than where I started), cut my exercise, and couldn’t even get pregnant when my body was made to ovulate. I was convinced that I would remain childless, which I had thought would be fine when I was not staring the possibility in the face. Now? not so much. I was in one of the darkest places of my life. We made the decision to move forward with IVF, despite my convictions that it would just lead to more disappointment.

We had to wait a month for insurance to kick in. In the interim my doctor wanted to put me on the pill but I declined. I thought I might as well give my body a shot in the meantime and doing daily testing of my hormones (using ovulation predictor kits, OPKs) and taking my temperature gave me something to do to pass the excruciating time.

I didn’t expect anything to come of it. It really was just to make the 60 days or so go more quickly and give me something to occupy my data-driven mind with. Well. Come cycle day 42, I went through my usual routine of peeing on my OPK and to my complete and utter astonishment, it was positive. I was afraid I’d missed the window of conception as my temperature was already somewhat elevated, but woke my husband up to make an attempt at pregnancy anyway, just in case. The next day the OPK was positive again, temp was back down, so holy freaking sugar-balls, I was ovulating all on my very own! The third day the OPK was negative, day after that my temperature was way up so my body had come through big time. I had OVULATED! (Note that “normal” ovulation occurs on CD 14, that is 14 days after the first day of your period – this was cycle day 44!!! Actually fairly typical during hypothalamic amenorrhea which is not commonly known.)

I waited and waited, felt some symptoms (like cramping at around 6dpo) that were different from my other cycles, but at this point I was not expecting anything, I was just so stoked that I’d managed to ovulate. At 13dpo I took a pregnancy test I’d bought the night before and to my complete and utter shock, the result was definitive. I was pregnant!!

When I was about 25 weeks pregnant I felt some strange tightenings in my stomach that didn’t seem right to me, and they seemed to be coming fairly regularly. I ended up going to the hospital, and it turned out they were “Braxton Hicks contractions” which are not atypical during pregnancy, but they were much closer together than the doctors liked to see (2-3 minutes at some points!) This continued for the next few weeks, ultimately resulting in hospitalization at 28 weeks for a few days to give me magnesium sulfate to relax my uterus and allow time for steroid shots to mature the baby’s lungs in case s/he was delivered early. (We were team green). After that episode I was put on “modified bedrest” essentialy meaning that I could go to work, being as sedentary as possible, and that was about it. No more walking to my doctor’s appointments, no more walking to deliver interoffice mail, no more golf (boo)… which left me with a lot of free time.

It was then I was introduced to the hypothalamic amenorrhea forum on Fertile Thoughts. I Fertilethoughtsbannerjoined, found a community of women going through exactly what I had, and started sharing my knowledge. I’d also do more research as questions came up, advising other women both on what to do to recover as well as fertility treatments. Pretty soon I became the mother hen of the Board, supporting everyone who came through in their journey to recover and get pregnant. I had found my passion. I loved sharing my knowledge and encouraging others to find balance in their lives as I had managed to do in mine. I spent all my free time on the Board, checking and posting multiple times a day. After years of this, the women started telling me that I should write a book; and you know how that story ends. My No Period. Now What? book contains basically everything I know about hypothalamic amenorrhea, its consequences, how to recover (not just recovering periods but also learning to live a balanced life with eating and exercise taking a back seat to actually living), tips about fertility treatments, pregnancy (and unfortunately miscarriage), and continuing to live a fulfilling and balanced life after pregnancy.

Are there any other questions you have about my journey? Or anything else you’d like me to post about?