Many of you have asked about my estrogen issues I’ve mentioned these last months. I’ve felt torn about discussing this on the blog, but ultimately I’ve come to realize many other women are struggling with what I’ve been struggling with. I started this blog to help others and if my story can help even one woman out there, then it’s worth it. If you’re a male reading this, I’ll forewarn you we’re talking girl stuff today. Now it’s time to tell my story.
Several years ago ago, I lost my period. It stopped mysteriously about a year after my weight loss. Despite being on birth control since 16, nothing was happening. My OBGYN told me this “normal” due to my low body fat and high activity level and to not be concerned with it. Little did I know how very concerned I should have been and how detrimental this was to my health.
Around the same time my periods disappeared, I was diagnosed with iron deficient anemia. I was very sick during this time. Twice I almost needed blood transfusions. After having thousands of dollars worth of tests and being passed around from specialist to specialist, I was never diagnosed with anything. I eventually ended up at hematologist who I still see to monitor my anemia. I mention the anemia because one cause of iron deficient anemia is heavy periods which I wasn’t having. I was told this was highly rare.
In addition to the anemia, I also suffered other symptoms. I had bouts of B12 deficiency. After giving myself 2 rounds of B12 injections my doctor prescribed, my levels returned to normal. I experienced low libido and vaginal dryness. Then there were the night sweats. I would wake up in the middle of the night drenched in water. I kept a shirt next to my bed to change into during the night. This went on for years. I thought it was just part of getting older. Things begin to change in the female body after 35. I assumed this was normal for my age. I was wrong.
Fast forward to January 2014, my first stress fracture. Then in June, following the stress fracture, I saw my primary care doctor. She’s a friend from the gym and knew what I had been going through. Since it was my first time seeing her, we went through my entire medical history in detail. Knowing of my stress fracture then hearing of my missing periods, she was immediately concerned about my estrogen. She explained how critical it was to have enough estrogen to protect bones and even more important as an active person. She did blood work and a bone scan. The blood work showed the following.
I had no estrogen or testosterone. My doctor advised me to share the results with my OBGYN which I did and she then referred me to an endocrinologist. When I saw my first endocrinologist, he went through my history and the tests he could run to identify the cause of my missing estrogen. Oddly enough every test he named, I already had for my mysterious anemia. Thyroid, pituitary, bone marrow, kidney, stool, urinalysis, biopsy for celiac, endoscopy, colonoscopy, uterine & ovarian ultrasound, autoimmune disease and genetic predisposition tests. All of which returned normal in the past. He told me I had all the tests and there was simply no explanation for my missing estrogen and “as long as you’re not trying to get pregnant, you’re missing periods aren’t a problem.” I saw this endocrinologist August 2014.
By October, I had symptoms already of a second stress fracture, however, I was misdiagnosed by 3 orthopedic surgeons and it went undiagnosed until December 2014. At that time, I began going to Mayo Clinic thinking they are the “best doctors” in the world and will be able to get to the bottom of my mysterious issues. In January/February 2015, I was passed around like a Thanksgiving turkey from one Mayo Clinic specialist to another.
First I consulted with an endocrinologist. He did more blood work, another bone scan (because they claim theirs is better than the one I had at my PCP) and gave me a calcium urine test as homework. When I returned for the results, I was told I have no estrogen or calcium and had osteopenia. No estrogen and no calcium were the cause of my stress fractures. But I already knew this. The doctor told me things I already knew, but I wanted to know why. He couldn’t answer why. I was so frustrated.
He further stated I showed no calcium in my urinalysis. From what I understand, calcium is supposed to appear in your urine. Despite my taking daily supplements for years and eating plenty of foods high in calcium nothing showed in mine. I asked him why that would be. Am I not taking the right kind of calcium? Do I need to take it with something else to be better absorbed? He didn’t know those answers. He simply told me to start taking more calcium and stop working out. “You’re not meant to be active.”
I’ve discovered through my own research that in order for calcium to be properly absorbed in the body it should be taken with magnesium, vitamin D3 & vitamin K12. Otherwise the calcium can calcify in the arteries or joints. This really scares me. My Mom had open heart surgery last year due to calcification. Every person in my family has had heart problems. I can only imagine where all the extra calcium pills have been going.
After the endocrinologist, I saw an OBGYN at Mayo. He theorized a brain tumor, premature menopause or ovarian cancer. He told me the pill I had been on was a low estrogen pill and that over time it’s common for females to lose their period on that pill. Finally something that made some sort of sense. What he didn’t know was why my body didn’t kick in and produce estrogen on its own. He ordered another ultrasound and more blood work to rule things out. He also switched me to a high dose estrogen pill to protect my bones. A few weeks later, I received a call from Mayo saying my OBGYN had to take a leave of absence and they had to transfer my follow-up appointment to another OBGYN. You know what my reaction was to that.
When I saw the new OBGYN, I was done. DONE. DONE. DONE. I was not nice to her and she wasn’t nice back. I expressed my extreme frustration with the medical system and that no one was advocating for me or my health. I was being passed from doctor to doctor getting no real answers. She simply said “that’s not the way our medical system works, right, wrong or indifferent.”
Once we agreed to disagree, I told her I had a period after switching to the new birth control pill. She confirmed again that I didn’t have a brain tumor and wasn’t pre-menopausal. She told me my ultrasound showed a polyp in my uterus which formed from not having periods for many years. She explained they needed to monitor it and that if it didn’t go away on its own, I would need to have it surgically removed.
Then she asked about my stress around the time of my missing periods and first stress fracture. I told her how my crazy consulting job had me stressed like never before in my life, I was averaging 40-50 miles a week, working out 2-3 hours a day and went through a really bad breakup. To say I was under a little stress, was an understatement. I told her it was the most stress I felt in my life. I have no idea how I survived it. That’s when she told me I have hypothalamic amenorrhea.
HA is not very well known or documented and there isn’t a specific test for it really. Missing periods is the key along with low body fat and stress. People have HA when their body is under too much stress. When the body senses stress, it shuts down the non vitals. The way she described it to me was to imagine myself on a deserted island. The body senses the stress of being stranded and begins shutting down what it doesn’t need to preserve itself. It stops producing estrogen first to prevent pregnancy. When it comes to exercise, the body interprets it as stress. It doesn’t know the difference between good and bad stress. It’s all just stress. My entire life I have always been an anxious stress ball.
The problem with being diagnosed with HA is there is no cure. You can control it by reducing stress and eating more. She told me I needed to drastically reduce my stress. Quit my job if I had to. I’ve done what I can to reduce my stress by trying to not letting work stress me out, getting enough sleep, doing more of the things I enjoy like photography and writing and doing less intense workouts (more walking, hiking, swimming, weight lifting). Truthfully stress will forever be a balancing act for me.
My biggest challenge is lack of hunger. Since my injuries, I feel very little hunger. I feel like I’m forcing myself to eat. It’s as if my metabolism has stopped working. I eat because I know I need to. In fact, it’s really important when you have HA to eat. One of the reasons I count calories is to ensure I’m getting enough food. I don’t want people reading this to interpret this as an eating problem. I have a very healthy appetite. But something changed with my last injury. I suspect my hormone imbalance is the cause along with the sadness I’ve been feeling.
While I’m relieved to have a diagnosis, I’d be lying if I said I’m ok with it. I’m not ok with it. I want my body and my health back. Being on a higher dose estrogen pill for 3 months changed my body. My breasts, butt and thighs have grown. I can’t lose weight. From what I researched, this is a side effect of being estrogen dominant. I also have a weird sensation I can’t describe. It’s like I’m teenager with raging hormones again. I have belly fat that has appeared out of no where despite being very active and watching my diet. I felt going from zero estrogen to the highest dose estrogen birth control pill was too much for my body. It should have been done in stages. Additionally, my periods were so horrible I was throwing up from the severe cramping. I never had cramps like this in my life.
A few weeks ago, I saw my PCP & we discussed alternate options to birth control. I told her I want my body to find it’s own rhythm and heal itself naturally. She prescribed me a medication that stimulates bone growth (prescribed to osteoporosis patients) and can help induce estrogen production. She switched me to this medication and I stopped taking the pill. It scares me because I don’t want another stress fracture especially now that my good foot is hurting, but I can’t see using birth control as a crutch the rest of my life. Who knows what that does to you long term either. Earlier this week I saw a naturopath doctor who has me doing specific things to naturally rebalance my hormones. She also identified issues with my kidneys and thyroid. After seeing her, I felt optimistic about my health for the first time in months.
These months I’ve cried a lot. All the time actually. In bed at night, in the car, in the bathroom at work because I feel so very alone with this and have no one to talk to. Someone to give me a hug and tell me it’s gonna be okay. I don’t think people understand how cautious I have to be about taking on too much work or resting when I need to. Thankfully I’ve had many amazing women reach out to me these past months. To Ashley, Emily and Margo I’m thankful for your emails and support. I don’t know if I’ll ever be able to accept how sensitive my body is and the fear of not knowing where I am on the stress scale. I never know if I’m working too much. I never know if I’m exercising too much. I never know if I’m not eating enough. It’s scary how very fragile our bodies are.
What I do know is not having a period isn’t okay. It can wreak havoc on your body and damage your health. If you’re reading this, and this is you, I urge you to be your own health advocate and get answers. And do not let a doctor tell you it’s okay.
If you are a medical professional reading this, I urge you to advocate for your patients and investigate their issues. Remember why you went into medicine, to help people.
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I really feel for you š This is tough stuff to deal with, I know! I went through a period of about a year maybe 10 years ago, after coming off the pill, where I didn’t get my period and no one could explain why, they just wanted me to continue taking another pill. I wound up stopping all exercise for a while and literally stuffing my face to gain weight, even though I wasn’t “too thin” by doctor’s standards, and somehow that actually worked and I haven’t had the problem since even with all the running. Having kids did change my hormones for the better, somehow. It can be so frustration for women because hormonal issues really impact all of your health, women can have it so rough.
Wow I didn’t know you went through that. My biggest anxiety is the weight gain. I hate to say it, but it’s really too much for me to handle at this point with everything else. I don’t have time or energy to not have something fit me and it’s causing a lot of stress for me. How much weight did you gain and did you keep it on or did you lose it over time?
That is me too! I need to be thin/fit or I feel more stressed. Plus, eating healthy and exercising makes me function at my best. What did you end up doing?
I am so sorry you are going through all of this…BUT so glad you are now seeing a naturopath. I think they DO work really hard to figure out what is going on and advocate for the patient. Stay strong, you will get this all resolved!
Thanks, Lauren. I am very optimistic after seeing the naturopath. She’s extremely thorough and I just have this feeling that she’s going to get me on the right track.
Thanks so much for sharing alll of this with your readers. You are right that it absolutely can and will help people because it’s a real issue women are dealing with. I am troubled by my last gynecologist who put me on a pill where I was not getting my period but was told that was fine. We really do need to be our own advocates unfortunately.
It really bothers me how doctors throw medicine at people. That’s not always the answer.
Thank you for sharing this! I have been dealing with the same thing for a long time. My periods have always been irregular, but there was a time I didn’t get my period for 2.5+ years after I got off birth control and was running super long miles and under eating. All the doctors I went to were literally like “oh well, you’re young you’re not trying to have a baby”. SERIOUSLY? Insane. I basically diagnosed myself and stopping running, exercising less, and eating more helped. My period only comes back when I’m eating 2000+ calories – it’s crazy!
Wow Brittany! That sounds exactly like what the doctors were telling me too. It makes me shutter to hear they said it to you too. Imagine all the other women out there being misinformed? Can I ask you if you’ve gained weight when you started eating more? I’ve gained weight due to being injured 1 year and being on the pill. I’ve found it almost impossible now to lose any weight no matter how much or how little I eat. I don’t get it. I’m also so scared I will never being able to run long distance again. Good for you for diagnosing yourself and being your own health advocate.
This is a really powerful post and I am so sorry for what you had to go through. I am glad you were persistent and finally were able to get the answers you needed. I think it’s so important for our own bodies to find it’s natural rhythm and balance, and to learn to heal ourselves. Sending you lots of positive thoughts during this time.
Thank you Jamie, I appreciate your kind words.
Megan it breaks my heart reading this post and knowing how frustrating it must be for you going through all this. I guess now that you know what it is you can work through it. The stress level does play a huge part but you are right. It is a balancing act and I think you are doing the best that you can given your circumstances. Thank you for your honesty during this difficult time. If you ever need a break come visit in San Diego! You have a friend over here with an open ear and wine! š
I’m not sure what to do about the stress because a lot of it is work related. While I’m no longer a consultant, I will have a lot of stress through next year for the project I’m working on. I mean I have to work. It’s not like I have a husband with a good job and I can quit to focus on my health and do something easier. I have to support myself. Then there’s the weight gain. Everyone tells me I’m still so thin, but I feel like a cow which is pretty ironic considering I used to be 3x this size. Then there’s the running. Will I ever be able to run long distance again? It’s all so frustrating and scary. I may just visit you in SD one of these days my friend!
Oh girl… I can totally relate to what you’re going through. Hormonal problems are the worst, and I’ve experienced my fair share of them after dealing with my eating disorder. Doctors were honestly no help at all, as all they wanted to do was put me on the pill to regulate my levels artificially. And I’m like… yeah, that’s exactly what I need. More things to mess with my hormones. Honestly? The only thing that worked for me was giving up exercise, eating more, and gaining weight. It sucked for sure, but eventually my body found its happy place and things evened out. And from what I’ve read from other women, that’s what’s worked for them as well.
Wow did not realize that happened to you along with your eating disorder. I don’t wish this on anybody. I have gained weight and I can tell things are better. I feel a lot better now than I did to the months leading up to my injury. But the weight is weird. I feel like I can’t lose a pound to save my life. How long did it take for your body to even out? I’m trying to get an idea of how much time I need to go easy on myself. When I’m feeling good, I ten to push my workouts a lot. How will I ever know I’m in a safe place again?
Thank you for being brave enough to be transparent about this. I have estrogen deficiency, made worse by my Crohn’s Disease. My period has never been normal, and right now I don’t have one (but this is ok, per the doctor). I’ve been on HRT and likely always will be. Hormonal problems run in my family–my mom started menopause 3 times before getting her hysterectomy! My only true and great care is that I will be able to have a healthy family. And that starts with a healthy me, which is not the same “normal” as others. And that will all change again next year when I start trying to get pregnant!
Thank you for sharing Susie. You have a lot to deal with. I feel like I shouldn’t be complaining. I can’t imagine dealing with hormone issues and Crohn’s. You have to be really strong to deal with all that. Wishing you all the best so you can start that healthy family.
Wish I could give you a hug, Megan! There’s nothing more scary and isolating than suffering with something and getting no comfort, answers, or guidance. We know our own bodies, and we know when something isn’t right. It’s your life suffering in the balance, and I feel like our doctors and specialists (whether they simply can’t or not) don’t advocate for us. Sometimes there’s very little compassion when they don’t have the immediate answers, or they can be simply dismissive when you suggest things you’ve read or tried. You’re very brave and proactive. There are many people who would be too afraid to get answers, so it’s wonderful that you can be willing to share this experience with others, and encourage them to take control of their health and health care. You will surely help others, and I’m sure it’s helped you to open up and receive support from your readers. Wishing you well! <3
Thanks, Erin. It’s definitely been healing talking about this and hearing all the stories of these other women. I wasn’t expecting that to happen when I wrote this post. I’m really glad I did. I feel surrounded in hugs today. š
Megan, I’m truly sorry for this experience. But I know that opening up and sharing your story like you’ve done today WILL help others. Thank you for doing that. I wish you the best in finding balance with this issue. We’re here for you!
Thanks, Ashley. Publishing this post and getting responses I did from these women has been healing. I wasn’t expecting that, but it’s really be therapy for me. Thanks for listening.
I cannot imagine having to go through all of this. You have been such an advocate for your health and it is sad you have to go through so many horrible experiences with no answers. You are right though typically not having your period is very very wrong. I lost mine for no reason for 4 months a couple years back and freaked out.
Last year I went on the pill for the first time in my 34 years and quit it after 3 months because it all of a sudden threw my very systematic period out of wack and was spotting the entire time. Figured if I have no medical reason for the pill I just wouldn’t do it, I didn’t like that my body felt off.
You definitely have to go with how you feel no matter what a doctor says. I know better with my experience that it’s my body and ultimately I’m the one who has to live with it not the doctors. Good for you for taking control of your health!
Ugh, I’m SO sorry you had to be thrown around like that from doctor to doctor. I feel you … it’s so frustrating! Doctors need to be more educated about HA. It’s something that SOOOO many women deal with these days. I can’t tell you how many emails I get from women that are struggling with it and being told to “just get on birth control” or “I don’t know what’s wrong” by their doctors. I am glad that you were proactive and that you figured things out. I know dealing with your changing body is tough as you increase body fat, but your body will adjust and trust you again. It takes time, so give your body that TLC it needs in the time being and keep reminding yourself of what you’re doing for you and your health. Hugs!
Thanks, Ashley! I appreciate everything you said & your support, truly I do. My body changing has been the hardest part. I know some changes were due to the pill. I also know that when you’re not producing estrogen the body hoards fat cells in the stomach to try to induce estrogen production in the body. I feel so stressed out that my body will never be fit again like before. I can’t lose a pound no matter how much or how little I eat. I guess that means my body still doesn’t trust? I guess I’m scared I’ll never be able to lose these extra pounds. The second hardest part is not being able to run. If I could do that, I could figure all this out. I feel like I’ve lost myself through this and I don’t know how to get myself back. I need to feel whole again.
I know this is old, but YOUR post and issues are me, right now! Pregnancy and breastfeeding for 1.5 years followed by working out every morning at 5 am (before my family wakes) and eating a balanced but clean diet (because that makes me feel really good, gives me energy and health to workout and “mom”, and my skin looks great) has kept me from having s period since before I found out I was pregnant (4 years). I’ve gotten the same run around, been thrown pills and shots (that make me bloated, cry, and cramp), and am now being encouraged to eat more, relax, exercise less, etc. I stress easily as it is and don’t see how to fix it. Not being as fit and strong and getting to eat well and exercise (my only time to myself all day) seems like toeture and I feel like I’ll get depressed. Not having a cute figure and being able to wear anything will really stress me out and I will not be happy. Isn’t this HA thing insane? Before Merritt I was the same weight, but just ate really bad and didn’t exercise as much. I had to change my lifestyle after having Merritt because I had 5-10 Ibs I couldn’t lose. Now I’m so happy with my body, fitness… Yet I’m worried about what not having a period will do to me in the long run. I totally understand you and hate, hate you dealt with this too. Thank you for sharing! How are you now?
i agree, it’s sad to say but there are few doctors who actually get to the problem, they just mask the symptom. Megan, I can relate and have (am) going through similar. I have another friend/ancestral RD that might be able to help you if you want the natural approach. She’s awesome!
I am so frustrated & sad. The sadness I’m feeling worries me. I can’t be myself & love myself when I’m in pain & can’t be active. It’s such an enormous part of who I am. I’m sorry to hear your going through something similar. I don’t wish this on anyone. I am working with a naturopath now. She has me on a specific diet and seeding to help balance things. I’ll let you know how it goes.
Thank you for sharing your story Megan! I’m so sorry you’ve been on this painful and frustrating journey. I haven’t had a period in many years and need to get help for it. It’s so dangerous for my fragile bones and I think is a major reason I’m constantly getting injured and stress fractures as well. I’m curious–what pill are you now taking that you said your Doc prescribed after the the high dose estrogen? Is it speronalactone? I know that’s something my Doc has been wanting to put me on. It’s supposed to balance out your estrogen levels and progesterone. I hope your body finally heals!! Sending you healing vibes. And remember I’m always here if you need to talk.
XOXO
Thanks Yaara. I appreciate all your kindness and support. I am taking Raloxifene. It’s not a hormone. It’s for bones, but can support estrogen production. I really hope you get everything figured out with you too. I know what it’s like going through this mess and I don’t wish it one anyone! Take care of yourself!!!
Thank you for sharing your story. I can’t imagine how difficult this has been for you especially being so far away from family and close friends. I haven’t gotten a period on the pill and was told this is normal. Your story has prompted me to find a new doctor and get my estrogen tested.
It has been hard even now it’s still hard. I wish my family was here. I was on a low estrogen pill when I lost mine and they told me it was normal. It took two stress fractures before someone realized that wasn’t okay. For your sake, I hope your doctor is right and everything is ok. I would never want to see someone go through what I’ve been through.
Great post!!! I am struggling with a somewhat similar situation. The doctors are always dismissive about my lack of a period; they just want to put me on birth control. I hope things turn around for you soon!
I am astounded by the number of women who have commented with what you just said about doctors trying to put them on birth control. It’s a synthetic method. It doesn’t fix the real problem. I hope you were able to take something away from this post & you get your issues figured out too.
Thank you so much for writing this post, even though it makes you feel vulnerable. I’m going through a very similar thing- no period, no real reason why (other than clean eating + exercise + former weight loss). I’m also in the same boat as you, not wanting to gain weight (& completely stressing out from that alone!). So know that you’re not alone, and by sharing this you’re helping so many women, including me! As you feel comfortable, please keep sharing your story! xox
Oh I can relate to the stressing about the weight gain. Every person that’s commented has said eat more, exercise less and gain weight. Well I’ve already gained weight and all I can think about is losing it. It’s making me crazy so I get it. Thanks for letting me know I’m not alone. I honestly didn’t think many people would relate to me when I wrote this. I’m overwhelmed by the number of women with this issue struggling to get answers. Now I’m so glad I put it out there to help people like you. Thanks for the feedback Nina! Take care of yourself too. š
Megan, thank you so much for sharing your story. I feel like we underestimate the impact of stress on our bodies at a huge detriment to our health. When I’m uber stressed my periods get irregular, and I start to get a little belly fat too (which NEVER usually happens for me). I think it’s all related to perfectionism – we feel like we need to push ourselves that hard to achieve what society tells us we have to. I haven’t figured that out yet. I’d also be interested to hear what supplements that the naturopath has you on (other than the ones you mentioned?).
I really feel for you. I was diagnosed with PCOS at 15 but got to a very low weight, lost my period for 3 years, gained to a “healthy” bmi and still no period. The doctor didn’t seem bothered by it at all and my “healthy” bmi seemed fine to him. It wasn’t until a nutritionist told me it was probably HA and my body wasn’t meant to be that bmi did it make sense. I had to gain to 22-23 bmi to get it back. Unfortunately, I’ve lost it again (only two months missing now) due to an unintentional 10 pound weight loss. It’s frustrating but obvious to me now that my body is only happy when it’s 22-23 bmi, whether or not that makes me happy. I know it’s frustrating and hard to deal with and I was once overweight so I always have this fear of never being able to stop gaining. I think the fact that I truly have PCOS as well scares me so finding that balance of not aggravating my PCOS but not getting HA is so hard. I’m seeking help this time because I want this recovery to be the last. I really suggest either maybe some therapy and/or nutritionist who specializes in this helping you. It’s really hard emotionally and mentally but I think your mindset needs to change. You might recover but if you just push yourself to lose it again, what’s the point? I think we need to learn to be ok and to love our body at the weight it’s happy and healthy at, even if it’s not our “ideal.” You know what’s ideal and beautiful? A properly functioning body that protects your bones, gives you fertility, and loves you back. You aren’t alone.
I can totally empathize. I have not had regular periods in about 3 years due to restrictive eating, excessive exercising and weight loss! I ended up being referred to a reproductive endocrinologist who told me to just gain weight. I understand how frustrating it can be with doctors because they just seem to brush over things! I decided to really commit to trying to get my hormones back in order so I stopped exercising (for about 7 months) and ate quite a lot; focusing on carbs and fat. It wasn’t easy and I did gain weight but it isn’t as scary as I first thought it would be! I started to notice huge improvements with regards to my health. My nails were growing crazy fast; I had an actual libido; my vaginal dryness was gone and my boobs weren’t flat little pancakes anymore. I was felling great and allowed myself to start exercising lightly again making sure to monitor how my body was reacting. It took about 10 months of self-care before I got a period but it was such an incredible feeling to know I was on the right path. That was about 3 months ago now and I haven’t had another but I am trusting my body will continue to heal. I understand how scary it is to gain weight! Trust me I was there; crying at the thought of it all; wishing my body would just function being skinny. At the start it is overwhelming to even consider eating more and not exercising! It took me so long to accept this fact but as you begin to take care of yourself your mindset changes and you can tolerate it all some how!
I wish you all the best in your recovery from HA.
Blessings. xo
This is an incredibly powerful post. I feel for you and the pain you’ve been going through over many months and just hope that by writing about it, sharing about it, and getting more feedback, that you’re starting to heal. I hope the new treatment works for you and am just sorry that this is happening. Lots of good thoughts and vibes will be sent your way about this!
Thanks Meghan, I now have a 3rd stress fracture in my other foot. It’s been 18 months of going through this cycle. Obviously the Mayo doctors prescribing the pill did nothing to protect my bones. Very frustrating. We don’t realize how fragile our bodies are until we go through something like this. I hope people realize not to take their bodies or health for granted.
Hello there,
I have to say, I found your story to be fascinating. I’m a 3rd year masters student, studying Acupuncture and Chinese Herbal medicine, and your story was one that I’m certain I will hear from my future patients…in fact we have studied this condition.
I think going to a Naturopathic Physician was a great move. Holistic care (including that which you can receive from Chinese Medicine) is a wonderful way to address illness, especially mysterious conditions with elusive symptoms. It wouldn’t hurt to investigate how Chinese Medicine could help with your recovery (obviously no pressure, just a thought :-)…). Good luck with healing, and thanks for sharing your story!
Sincerely,
Jodie
Alright, after reading the comments, I’m going to be “that” person. Gaining weight is hard. Gaining weight after losing a lot of weight is hard. Your body right now needs to gain this weight to heal itself. You may need to be up in pounds for a while. You may need to continue to scale back your work outs for quite some time, even a year. Your body maybe able to return to long distance running in the future, but right now it just can’t. I’ve been through this journey, it sucks majorly, but at the end of the day – you said it yourself – you want your body to be healthy and healthy on its own. Women’s bodies do need some fat on them do work the hormones. Unfortunately not every lady is made the same, so some can be low BMI and still be fertile, but some just cannot.
I listen to a lot of paleo podcasts, and I don’t follow your blog all the time so I may have missed if you do as well, but a few that I listen to are the Paleo View, and the Paleo Womens Podcast. You can search through their podcasts to find ones suited to this issue. I’m sorry if this sounded preachy or insensitive or mean, but I just couldn’t stop myself after seeing your replies worried about the weight gain. You maybe able to get down to that weight again, but maybe not. Myself I had to gain about 10 pounds to pregnant initially and now after the second kid I’m still struggling to lose (I have other issues going on though). I know where my hormone happy weight is, and at some point I will get back there but right now I can’t.
I wanted to edit just a tad, yes I mention becoming pregnant but I should have phrased it that I had to do all that to get my cycle back.
Hi Jade, thank you for commenting and for sharing your story. I’m consistently amazed at the women who are brave like you to share their journey. I’ve felt so alone with this for so long and I can’t express enough how much it helps me knowing I’m not alone and understanding what worked for others to figure out if I can apply it for myself. I actually gained 10-15 pounds last year, but it was all in my stomach and hips and even with the weight gain my periods weren’t happening. Since I wrote this post, some things have been discovered about my condition. I’m gluten sensitive. What that means is I’m absorbing nutrients poorly. Left undiagnosed over time, this leads to shut down of hormones. It makes complete sense to me too because the same time I lost my periods, I became anemic and no one could ever figure out why. I always knew in my head the two were related, but no one figured it out until now. Unfortunately this means I now have to be on a gluten free diet. Just in the last month working with a naturopath, changing my diet and taking herbs to support my gut health I’ve noticed a huge difference. My stomach fat has gone away and I’m already leaning out. I still have periods and my estrogen levels are good. My other hormones are non existent though. My doctor told me it could take up to a year for me to be well again. I’m so thankful I’ve finally discovered what was making me sick though. I never believed the root cause was identified until now.
I just read this post. I can completely relate and know how difficult and frustrating both HA and injuries are. I actually belong to a private HA group on FB that came from belonging to a website called fertilethoughts.com which was basically like a support group for a lot of women suffering from this condition. Not that you don’t know this but HA basically comes when you are working out hard and not fueling properly and operating at a calorie deficit. Something I have found very helpful esp when it comes to injuries and injury prevention is limiting the running and doing the stairmill at the gym. It will kick your ass without the impact and the stress on your body. Also classes like Physique 57 (Barre) are great b/c they also don’t cause the same stress on your body as heavy lifting and I believe they are actually geared to help those with certain injuries. In addition, I found adding a tablespoon or 2 of chia seeds 1-2 times a day to meals and snacks and adding a quarter or more cup of feta to meals 1-2x a day (or other cheese you like) helped me. Also a lot of salmon – I would say lean meat as well but I think you are a vegetarian? Little things that help your body heal. Best of luck!
Hi, I just found this post. I completely relate. I was diagnosed with HA about 3 years ago. I feel like recovery is the hardest part. I look back now and know I am better and SO much healthier. It is hard to see your body gain weight. This happened to me. I stressed that I would never be the same again. People advised me to change the way I exercise and stress less too. I did end up changing jobs and that helped a TON! This is easier said then done. I gradually started eating more healthy fats. This is what seriously helped me recover. I ate nuts and seeds. I didn’t count calories. Which is crazy because I used to count all calories especially fats. I ate avocados and coconut oil. I cooked with olive oil. I went from eating very little protein to focusing on eating protein with every meal. I stopped caring so much about my vegetable intake….I used to have to have green…with every meal. I didn’t stop eating vegetables just didn’t stress about not getting in my salad with every meal. Within 3 months of me doing this I could tell my body was recovering. My mind felt clear. My stomach and body held on to the weight so I decided to roll with the punches. I knew I was doing what was best for me. I bought a large pant size and found some flattering shirts. Realistically I was the only one that knew I was changing or my body was gaining weight. Instead of running 6 miles I reduced it to 4. I did this for a year. I found a happy place with my body and then my period came back. The 10 pounds I gained were important to my body to heal. Today I am back to that original weight. I lost those 10 pounds. I know exercise a lot more carefully and eat a lot more fat. I stress less because I am healthy. Everyones journey to health takes time. Don’t give up. Love who you are at all sizes and shapes and it will work out.
Hi Molly, thank you for telling me your story. You have no idea how much hearing everyone’s comments and personal journey has helped me cope with mine. My situation is slightly different than everyone else’s. I have always been very good about my nutrition eating a ton of healthy fats balanced with carbs and protein. I could be better on the protein side, but overall my nutrition has been excellent. It had to be so I could perform well. I plan on writing a future post on what has been discovered since I wrote this, but essentially I’m gluten intolerant. Gluten sensitivity causes mal absorption of nutrients. When it goes undiagnosed, your hormones get out of balance and it leads to weight gain. I just started gluten free diet this week. I hope in a few months things begin to improve. My doctor told me it could take up to a year to regain my health. I thank you so much for commenting. Over 50k people have read this post and only a few brave women like you have commented. It helps knowing I’m not alone in this journey. It frustrates me that so many other women are suffering the way I am. I’m so happy to hear you are in a healthy place. Cherish your body. It’s the only one you have!
I recently just came across this article. I found it so easy to relate to. I too have had many hormonal issues. I was put on birth control because I never got my period on my own (lots of exercise & little food). I was on a low estrogen pill for a couple years and then started having all these problems. I was in severe pain and the lack of estrogen caused some of my linings (sorry tmi) to be completely thinned out. I am not off BC but still have some issues- my period may or may not come depending on my activity level. I am glad to see that you are being your own advocate! I need to do more of that in my life! Its hard because I feel like people don’t take me as seriously because I am (& also look) young.
Wow, Megan this is exactly what I have been struggling with for about 4 or 5 years. I was so frustrated last year, because I was not exercising very much, eating a normal amount, and my weight was just stuck at an (unhappy) place. I determined not to focus on it. During the winter months I took a few months off of running, did other workouts, and in January my period returned. My weight was lower than last year, but I didn’t even keep track of it. It was weird, because it almost felt like when I stopped worrying about it, ate nutritiously, worked out in moderation, and got good rest (STRESS was so huge for me), my body said, ‘Ok, I think I’m in a good place now.’ The body is such a weird thing.
Oh sweet Emily, I’m so sorry to hear you too have struggled with this too. I am continuously amazed at the number of women who have experienced this. I wouldn’t wish it on my worst enemy. Like you said, it really does take time for your body to trust again and I couldn’t agree with you more on the stress. I’ve often thought that if only I could take a short leave from work my body would have a chance to heal. I’m glad your body found its happy place and it’s no longer a strain on you.
Wow, what a story! I’m glad you are on a road to healing now.
In my extended family, almost half the women have had hypothalamic oligomenorrhea (“oligo” means “infrequent”) starting from puberty. All of us either were lifelong “tend to be skinny” people or were normal/overweight but happened to lose a lot of weight during puberty before the first period. Some of us are anxious personalities and/or suffered unusual stress around puberty, but not all. So it’s hard to say how much is genetic and how much is lifestyle. What we have learned is that long-term synthetic hormone usage (like taking birth control pills for years) makes things worse in the long run and can lead to a scary overdose-like reaction, but a “progesterone challenge” (take 10 days of progesterone, then stop, and a period should result) can be a good way to reset the system after 6+ months with no periods. Also, those of us who have managed to conceive have gotten significantly more regular cycles after giving birth and had a much easier time conceiving a second child.
Something else I have learned is that getting enough Vitamin E decreases my cycle length, as well as reducing premenstrual dysphoria which was the reason I was taking it (along with magnesium and B6).
I was anemic only when pregnant. I had a more diligent midwife for my second child than my first, so when my iron level continued to go DOWN after increased supplementation and I was having diarrhea (the opposite of iron supplements’ usual effect) she sent me to a hematologist who discovered my Vitamin B12 deficiency. Taking a B12 supplement corrected the anemia and gave me a lot more energy!! Since giving birth 15 months ago I’ve not been anemic, but I continue to take B12 several times a week because it helps me feel strong and alert.
I have been reading your post for a long time, I live in Arizona too!!
I just saw that they finally figured out that it was Gluten that was causing all your problems, I also was having Hormone issues. I was 49 yrs. old at the time and didn’t think to much about it, I was using estrogen, progesterone and testosterone creams for over two years before I found out it was Gluten. I was born Lactose intolerance, found out that there is a high percent of also being Gluten too, didn’t know that. It’s been almost 6 years and I fell like a different person! After reading your post, I now realsized my hormone problem was related to Gluten. It was between 6-9 months after eating GF I got off all those creams, but because of my age and having a partial hysterectomy years ago I am on hormone replacement.
I’m soooo glad they finally found out the problem, it will still take some time to get back to normal.
Take care š
Wow, what a story Denise! I haven’t officially talked about the gluten discovery yet because I still want to see what my labs show next month. After being GF just a few weeks though, I already feel so much better. Before my body felt empty, like nothing I was eating was nourishing it. Now I don’t feel that way at all. And very interesting on the lactose intolerance! I am soy and lactose sensitive. I have been since I was a baby. My Mom was just telling me how as a baby I would get sick with any milk they gave me. I never knew there was a higher percentage of being gluten sensitive. It all makes sense now. Thank you for sharing your story.
Thank you for sharing your courageous story! You’re right. It’s frustrating how fragile our bodies can be sometimes. When I was only 13, I had a growth on my arm. They removed it, and said it was the cause of fluctuating puberty hormones. (Fun, right?) They warned I could never mess with my hormones with the pill or anything. Then, years later after messing with my hormones myself this time because of disordered eating/exercise, I lost my period. Because of previous history, artificial hormones are out of the question. The return to health is so long, so hard but it will be worth it.
Megan! I resonate with TOO much of this. I just turned 24…. In 2014 I had 2 stress fractures about 9 months apart. I was also told I had no estrogen or testosterone in my body. Being on birth control induces a period but besides that I have never naturally had one and I refuse to take BC because it makes me feel like crap.
You wrote this —> “I experienced low libido and vaginal dryness. Then there were the night sweats.” I have never been able to tell anyone this, because well it is embarrassing for me, I am 24!!!!
I noticed in your about me post that you mentioned all of this having something to do with gluten? If you have anything more on this please share with me!