Posts about Amenorrhea
Last week I was diagnosed with hypothalamic amenorrhea, and I wanted to share my journey so far. (DISCLAIMER - I am not a doctor, don't use my story as a way to self-diagnose! A lot of this info is based on my own personal research. If you think you might have hypothalmic amenorrhea, please seek guidance from a medical professional!)
My Past: I discovered weight lifting over two years ago, and like most things in my life, I went 110% full speed ahead. I loved it! I love being strong, pushing myself, overcoming, being challenged, the relaxation that the gym offers, everything about it. For over two years I've been at the gym 5-6 days per week (1 - 1.5 hours/day), every week. I wanted to excel, and I did! I went from a willowy girl, averaging about 122lbs 55kg at 5' 8" 173cm to a strong, powerful woman. I've done two bulking and cutting cycles (145 back to 135lbs twice). This summer I was 135lbs 61kg, and from all my best estimates (and based off a DEXA scan from last year), definitely sub 20% body fat. I looked really good in a bikini! For over the past year I've weighed and tracked every macro, in an attempt to optimize my performance at the gym. My world strongly revolves around moving heavy objects, and I love it! I tested my 1RM recently and ended up getting 215/145/315 squat/bench/deadlift (98/66/143kg).
Currently: Four months ago I decided to go off my birth control pills, since my husband and I want to get pregnant. You may have seen one or two posts about me lamenting my lack of period over that time frame. Spoiler alert: it didn't come back. After three months of no period, I started researching and became pretty convinced I might have hypothalamic amenorrhea. Last week, my OBGYN confirmed my thoughts, and said she felt that was probably the case. I had a hormone panel done, and the results were in line with that diagnosis.
What's Hypothalmic Amenorrhea (HA)? It's caused by any combination of three things, which are all basically summed up as bodily stress.
Under-fueling. Being in a negative, energy balance state.
Over-exercising.
Stress - mental, physical, emotional, etc
Any combination of these can lead to HA. This is why it's seen in anorexics who don't work out, as well as high level athletes who have a healthy relationship with food, or even someone who just works out some, under eats a little, and has a stressful job. It's any combo.
The hypothalamus controls the menstrual cycle, and can essentially shut things down. It lowers all of the reproductive hormone production in the body, and halts the menstrual cycle since the body isn't in an optimal or safe spot to reproduce. There's a cascade of negative side effects from HA that I don't want to delve into, but you can look them up (osteoporosis is a big one). So even if you didn't want to get pregnant, having a regular menstrual cycle is very important for your health.
Now see, I knew about HA. I thought it would never be me. HA was for bodybuilders who got insanely shredded, or women with eating disorders, or marathon runners. None of those were me, so I was safe, right? I viewed food as fuel, and focused on optimizing my macros, and only ate in a deficit when I cut for summer. Plus, I was much heavier than I was before I found lifting. So HA never crossed my mind!
Well, I was wrong. And the more I looked at my life style with a new perspective, the more I realized I fit the HA profile. I worked out hard 5-6 days per week, for 60-90min per day. On top of that I also did hot yoga a few times per week, I made sure I got 10K+ steps per day, I restricted calories this past spring to get shredded for summer (I figured it'd be my last chance before kids), I minimized my fat intake probably lower than I should have in order to eat more carbs "for performance sake." I wasn't an athlete, but I was athletic.
Opinion time: I think HA is probably more common than people realize. First off, if you're on hormonal birth control, you can't know if you have HA. The bleeds you get while on birth control do not indicate if you are ovulating or not. And if you weren't on BC, and did know you have HA, it's reasonable to not tell anyone about it.
What Now? Healing HA - So this is the sucky part. The throw my world for a loop and cry in the shower part. The recommendation is: No more lifting and gain weight until I have three normal cycles (not a lean bulk, but truly just put on some body fat ASAP). I've read the research, I've seen the studies, I've read all the testimonials of women who have gone through this. I know this is the right path, but man, it's awful. I haven't been to the gym in almost two weeks (and I had cut down quite a bit for the month prior to that).
Basically, my body needs to have more body fat to signal to my hypothalamus that it's okay to menstruate. My hormone levels need to come up. My body needs to have lowered cortisol. My body needs to heal, and not be in a state of stress. Walking and yoga are allowed, but no lifting, running, HIIT, or anything along those lines (research has shown it's possible to re-gain your period while continuing to exercise. However, based on those studies, it has a much lower success rate of getting your period back, and even if you do, it takes longer than if you were to not exercise).
I know that not lifting is just for a season (until I have three normal periods), but it seems so indefinite. The general consensus is that it takes about 3 - 6 months to regain your first cycle once you commit to recovery. So that could be a long time before I'm back to lifting (and I'm hoping to get pregnant, which also means less lifting, and ugh, it's not fun to think about.)
Currently: I've ditched the scale, but from my doctor appointment last week I was 147lbs 67kg. I probably still need to gain more. The recommendation is to eat a minimum of 2,500 cals per day in recovery, but don't cap yourself. I've stopped tracking, but have a really good handle on macros, so I know I'm eating well over that every day. The weight gain really messes with my head. I've always had a good body image, but gaining weight is rough.
The hardest part is leaving the gym though! Lifting became part of my identity. I know this is "just a season", but UGH. I feel like a fraud even being on this subreddit anymore. I miss my gym family, I miss the regulars and the workers. I miss being "the fitness person" to my friends and family. I feel like I'm giving up what I've worked so hard for, losing my identity, and seeing my body change all it once. It's an emotional roller coaster to say the least.
I've only told a few people about my HA, but one person was like, "So you're just going to quit and get fat and flabby?", cue crying in the shower. I also HIGHLY regret not doing a powerlifting meet. I wanted to, but kept pushing it off. So please, if you are thinking about doing one, just do it!
Good Things So Far:
I have a lot more free time to spend my with husband (but dang, give me some hobby suggestions)
Libido is back! Woo!
I'm not hungry all the time!
I'm happier (I was a grouch this summer, I hate to admit it)
I have cervical mucus again (TMI? Sorry.)
My hormones are not insanely low, which means my cycle should come back relatively soon
TL/DR - Got shredded. Lost period. Need to gain weight and stop lifting to get it back. Both of those things suck, hard. I don't feel like I belong anymore. I'm on the path to recovery, but I don't know when I'll get my cycle back. Six pack might not have been worth it.
Feel free to ask my ANY questions! I'm an open book. However, I am not a doctor! I can't help diagnose or anything like that. I just wanted to share my own personal experience with HA.
I have no idea why I posted about this. Bring awareness? Get sympathy? Just to vent? Help someone else? All of the above? I'm hoping something positive can come from this journey though!
I highly, HIGHLY recommend the book, "No Period. Now What?" By Dr. Nicola Rinaldi for anyone else wanting to know more about HA! She also has a bomb, awesome Facebook support group for people who have or had HA.
I’ve shared bits and pieces here, and on other subs, but am posting this as a standalone now at the request of u/ravenclawvalkyrie, so it can be added to the Wiki.
For those who found your way to this sub due to amenorrhea, here’s what I’ve learned after my experience with it.
Is amenorrhea a diagnosis?
In short, no. Amenorrhea, or the absence of menstruation during the reproductive years, is a symptom of an underlying condition. Amenorrhea is typically defined as going three months or more in a row without a period.
Primary amenorrhea is when women fail to menstruate after reaching puberty. Secondary amenorrhea is when menstruation stops after a woman’s cycle has been established, but before menopause. For the purposes of this sub, everything in this post will concern secondary amenorrhea.
What causes secondary amenorrhea?
When it comes to amenorrhea, there are two likely causes—structural and hormonal.
The main structural cause of secondary amenorrhea is scarring. Uterine scarring or Asherman’s syndrome is the formation of scar tissue in the uterine cavity due to trauma—usually surgery like a D&C. Scarring can also form after an infection, but this is less common. Another less common cause is cervical stenosis.
The thing to keep in mind with structural causes of secondary amenorrhea is that it’s very likely you’re still cycling—you’re just not shedding any lining (i.e. ovulating but not getting a period). This can result in cyclical, period-like pain with no bleeding.
The root of most hormonal causes of amenorrhea is the hypothalamus, which controls reproduction. In short, when your hypothalamus senses it’s not a good time to reproduce, it stops sending signals to produce the hormones that trigger menstruation.
Common hormonal conditions that cause amenorrhea include: **hypothalamic amenorrhea (HA), lactational amenorrhea (LA), hyperthyroidism, hypothyroidism and Polycystic Ovarian Syndrome (PCOS), and Sheehan’s syndrome among others.
What can I do if I have amenorrhea?
The first thing to do is work with a doctor to find the root cause of your amenorrhea.
Your OB will probably recommend going on hormonal birth control to “regulate” your cycle, but we’re all here because we’re trying to get pregnant, so that’s a non-starter. Plus, hormonal birth control doesn’t regulate your cycle, it just provides your body with artificial hormones that suppress ovulation and give you a withdrawal bleed every few weeks. Hormonal birth control can never “fix” your cycle, it just masks problems that are still there. I’ll get off my soapbox now.
Your best bet is to find an OB that will do a full hormonal blood panel or head straight to an RE. In my experience, REs are much better equipped to diagnose the cause of amenorrhea—particularly those that aren’t solely focused on treating infertility.
Now this isn’t your standard CD3 bloodwork because without a cycle you don’t know when CD3 is. So you can have blood drawn at any time, but you’ll want to make sure they check the following:
Follicle Stimulating Hormone (FSH), Luteinizing, Hormone (LH), Estradiol (E2), Thyroid Stimulating Hormone (TSH), Testosterone, DHEA-Sulfate, Prolactin, Sex Hormone Binding Globulin (SHBG)
And you can throw these in for good measure: Free T3, Free T4, Progesterone
Once your doctor has your blood panel results, they can decide to do further diagnostic tests in order to pinpoint the cause of your amenorrhea.
If they suspect a structural issue, you may be asked to take 7–10 days of hormonal birth control, then stop and see if you get a withdrawal bleed. Getting a withdrawal bleed is a good sign that you don’t have scarring, but it isn’t definitive. Whether or not a bleed occurs, you’ll then want to get a saline sonogram to look for scarring. A hysteroscopy can also be used to look for scarring, but its more invasive, so I would—and did—opt for the saline sonogram first.
If they suspect a hormonal issue, they might take one of two routes. First is a 10-day Provera challenge to try and induce a withdrawal bleed. You do not have to do this if you don’t want to. Instead of going straight to Provera, you can opt for an ultrasound to check the thickness of your lining and count the follicles in your ovaries. I personally prefer this method because it can help diagnose PCOS and HA, whereas the Provera challenge is really only necessary if your trying to diagnose HA.
I had regular cycles before, but my doctor says I have PCOS. What’s up with that?
If your doctor takes a broad view of the diagnostic criteria, it’s really, really easy to confuse HA for PCOS. For an in-depth analysis of HA versus PCOS click here.
My doctor says I have HA. What can I do about that?
While the causes of HA are simple—some combination of under-fueling, over-exercising, and stress—the solution can be complex as it involves lifestyle and mindset changes. The best resource to start with is No Period. Now What?. There’s also the All In and The Hypothalamic Amenorrhea podcasts.
Also from u/WafflingPotato:
>Just wanted to add that HA can also be caused by pituitary tumors such as prolactinomas - they’re relatively rare but easy to treat. If you have one if these, lifestyle changes will likely not help you, but there are medications that can lower prolactin levels, and generally your cycle will return once that happens. They do require contrast MRI to diagnose though.
>For secondary infertility, it’s easy to miss a prolactinoma thinking it’s lactational amenorrhea.
I’m still breastfeeding my toddler and don’t have a cycle. Is this still LA?
This is a tricky one. Most women will have resumed cycling by 12 months postpartum even if they’re breastfeeding. If your child is 15-18 months old or more and you still don’t have a cycle, it’s a good idea to see your doctor and request the blood work described above.
It’s totally possible that breastfeeding is what’s keeping your cycle away, but it’s also possible that what your doctor thinks is LA is actually HA, PCOS, a thyroid issue, Sheehan’s syndrome or a prolactinoma.
It may not be possible to distinguish between HA and LA with your bloodwork, but you can try following the protocols in No Period. Now What? before weaning if your goal is to regain your cycle while still breastfeeding.
Note: I tried this approach with mixed success. While I almost ovulated and got a breakthrough bleed while still breastfeeding, I ultimately decided to fully wean my son in order to try and get my cycle back more quickly. Basically, your mileage may vary.
Things like PCOS or a thyroid issue should be more apparent, but it’s important that you advocate for yourself because, in my experience, most OBs want to chalk everything up to breastfeeding and getting care means “being Scarlett” as my mother likes to say.
If you’ve read this far, I just wanted to say that if you feel stressed, sad or mad about your amenorrhea, it’s okay. Having a healthy, regular menstrual cycle is important for more than just reproduction. If you’d like to learn more about that, definitely check out The Fifth Vital Sign and pretty much any episode of the Fertility Friday podcast.