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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