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.
Related:
My Gluten Free Story, How Gluten Stopped My Hormones
Heather@hungryforbalance says
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!
Megan says
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.
Colleen C. says
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.
Megan says
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.
Yaara Leve says
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
Megan says
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!!!
Ashley @ My Food N Fitness Diaries says
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!
Megan says
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.
Danielle says
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?
lindsay says
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!
Megan says
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.
Gianna @ Run, Lift, Repeat says
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.
Megan says
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!
Ashley @ A Lady Goes West says
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!
Megan says
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.
Erin@BeetsPerMinute says
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
Megan says
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. 🙂
Susie @ SuzLyfe says
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!
Megan says
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.
Amanda @ .running with spoons. says
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.
Megan says
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?
Daisy @ Fit Wanderlust Runner says
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! 🙂
Megan says
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!
Jamie says
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.
Megan says
Thank you Jamie, I appreciate your kind words.
Brittany Lesser says
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!
Megan says
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.
Lauren @ The Bikini Experiment says
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.
Megan says
It really bothers me how doctors throw medicine at people. That's not always the answer.
lauren says
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!
Megan says
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.
Michele @ paleorunningmomma says
I really feel for you 🙁 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.
Megan says
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?
Danielle says
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?