If you're new to my blog, please check out my previous blog post to know more about my background and how I was diagnosed with Hypothalamic Amenorrhea (HA) here
A Brief Overview of HA:
Hypothalamic Amenorrhea - when you lose your period completely, have prolonged periods, or irregular periods due to lack of energy for the reproductive system to work properly. There are a lot of factors that play into this but it typically comes down to exercising too much and not eating enough.
Main Factors Involved:
As you know from my previous post, I had a difficult experience with a nurse practitioner diagnosing me with Polycystic Ovarian Syndrome (PCOS) without discussing my symptoms or my history.. let alone doing bloodwork or an ultrasound!
Once I found out I had HA, I was very hurt and discouraged. I was embarrassed that as a healthcare professional - Physical Therapist and Strength & Conditioning Specialist- that I didn't know there was something wrong with me. But now the truth was right in front of me the entire time.
All of those years I went to countless physician appointments (primary care and gynecology) and was told that "you are the picture of health" and "you have nothing to worry about" continued to haunt me.
How could I have not known this??
For those of you who know me personally know that I am a researcher.. AKA nerd #nerdalert.
I took several days to research PCOS and Amenorrhea and learned more about HA. I can give you SO many statistics about the average BMI and body fat of women who conceive and the FSH, LH and progresterone levels to ovulate but I'll spare you just this once :)
Through my research, I found a book called No Period, Now What? It has been so very helpful throughout this process. It shows evidence-based research (right up my alley!!) to support HA diagnoses and a step-by-step Recovery Plan. It even has a section for significant others and spouses!
I learned that it was very commonly misdiagnosed and not many people knew much about it (even specialists in obstetrics and gynecology).
To be honest, I'm not sure why that surprised me so much. I see it in my profession all the time.. where many people are mislead to take pain medication and undergo unnecessary injections and surgeries to end up right where they left off..
STILL IN PAIN.
If it's that way in the Orthopedic world then why would it be any different in Women's Health?
Our first thought is, "What medication can help me with that?" rather than figuring out the underlying issue.
Okay.. I'll get off my soap box!
So I decided to follow the Recovery Plan in the book No period, now what?
The plan looks a little something like this:
For someone like me - I have NEVER had a regular cycle and usually only have 1-2 per year - then the recovery process needs to be drastic... literally, life altering.
My body fat was also very low so I had to gain some weight and provide my body with a little bit of extra cushion ;)
Now if you're reading this and thinking, "this is bonkers.. how does this help anything?" then you're not alone. I had a VERY difficult time hearing this.
My entire life I've been active and moving. I rarely sit down. I eat when I'm hungry (which is pretty much all the time) and like to keep moving throughout the day. I can also be a bit of a stress ball and that's partly due to me wanting to please and be accepted by everyone.. I also overthink everything I say (not always but sometimes) which causes unnecessary stress.
So to counteract all of that I have to go for long walks, do light yoga, eat as much as want and listen to my hunger cues. I have to incorporate more fat and carbs into my diet- I was unintentionally eating a low carb and low fat diet without realizing it.
I wasn't properly nourishing myself even though it seemed like I was eating ALL. THE. TIME. It wasn't enough and I've learned tricks to incorporate more fats and needed calories without even noticing it.
Moving on.. let's get to the meat and potatoes..
I recently had my bloodwork done and all of my hormone levels were within normal limits!! And I'm talking mid-range levels.. not on the lower range of normal. I wish I had done bloodwork before I started the Recovery Plan to show how much of a difference it made!
When I was in my early 20s I had bloodwork done and at the time I didn't even care to look at the numbers.. I blindly trusted my physician. But I do remember them being very low. I remember the physician telling me they were well below normal limits but that birth control would get them "back on track."
Since that encounter, my exercise, eating and stress habits haven't changed much so I can assume that my bloodwork would have been quite low before starting the Recovery Plan.
I also ended up having to get off birth control. With birth control, my periods were "regular." However, after undergoing an arthroscopic shoulder surgery I developed a blood clot in my arm that eventually went to my lungs (AKA pulmonary embolism (PE)- the silent killer).
After the blood clot and PE, I was not allowed to take estrogen supplements (AKA birth control) and guess what? ... 4 years later and still irregular periods. I thought the birth control was supposed to "fix" it?
This recovery process has been one of the most difficult (if not THE most difficult) thing I have faced in my life. I didn't realize how important exercise was to me. I also didn't realize the impact that my body image had on my life.
Since starting my company, I had a healthy view of my body and grew to love my muscles and strength. I was empowered to be a fit female confident in my ability to move and explore the world!
I believe that I will be able to return to working out and moving freely! But my first priority is my health.. BMI and body fat doesn't define me. I have (and probably will) continue to gain more weight during the recovery process but that's okay.
It can be frustrating seeing other women work out as often as they please without having to worry about it affecting their hormones. But I have come to appreciate how every body has a unique genetic makeup.
One person may function great at a BMI of 19 and someone else may function better at a BMI of 23. One person may function well at a body fat of 18% while someone else may function better at a body fat of 23%.
I believe that I'm going through this for a reason.. whether it's to raise awareness for HA to individual women or if it's to discuss this diagnoses (respectfully) with physicians to prevent other women from being misdiagnosed.
I haven't figured out what my role is just yet but I look forward to finding that out.
I want to give a shout out to all of my friends, family and followers who have been so supportive through all of this! There have been many times I wanted to say "forget this, give me the medications!" so I could return to my old way of life but so many people encouraged me to keep on the Recovery Plan.
I also want to throw an extra big shoutout to the hubs!! There have been many nights where I have questioned (and I"m sure there will continue to be more) if I'm doing the right thing. And time and time again, he would continue to tell me how much he loves me and is thankful that I'm doing this for our family. I could not be doing this without him!
For those of you who have been to countless physician's to be told that "you're perfectly normal" but are fearful that something isn't right.. I urge you to read the book No period, now what? It's an informative read backed up by evidence-based research!
The book also teaches you how to read your lab results after having bloodwork done. It also explains how you may have follicular cysts on your ovaries that are from lack of ovulation. They will go away once you have recovered and are regulated but if you're not careful, can easily be misdiagnosed as PCOS.
It's important that we advocate for our health! And in order to properly do so we have to be educated! That may require us to respectfully disagree with our physicians on occasion.. but that's okay! As long as we do so in a kind manner then there should be no issues.
Just know that with the change in healthcare, physicians are seeing more and more patients daily. It's tough for them to remember everything you told them when they're juggling 20-30 other patients that day. So knowing your specific measurements and understanding that BMI is not the only indicator. You can be in a "normal" and "healthy" BMI range but still have HA. You can also be below the "healthy" BMI range without having HA. It all depends on a thorough understanding of your history.
Please feel free to shoot me any questions that you might have! I would love to hear what you think about HA and to see if you might have possibly been misdiagnosed or even overlooked entirely and labeled as "healthy."
If you found this helpful please let me know by commenting below or emailing me at firstname.lastname@example.org
Dr. Katie Spruell, PT, DPT, CSCS
Dr. Katie Spruell, PT, DPT, CSCS
I am a licensed Physical Therapist and Certified Strength & Conditioning Specialist practicing in Nashville, TN. I started a small private practice - KS Fitness + Co, LLC - in April 2018.