my secret struggle: my endocrinology journey…

I wanted to share something to premise my posts about infertility with a guest post I did for someone else’s blog over the summer: Something i really can’t just share, but it’s always a burden on my heart, and for some reason it’s been on my heart lately…

I want to be a mommy someday. This is the one thing I’ve longed for longer than anything else. It’s this deep desire inside of my soul. To have the gift and responsibility of being entrusted with the gift of a soul. Wow. That is a scary thought. But yet, I know it’s the thing I want most in my life!

For the past 10 years, I’ve known that this might be difficult. At age 15 things really started to go awry with my endocrine system… I made some dietary changes;  I became a vegetarian, a restrictive vegan, and then fell into disordered eating… and my period disappeared (it had become slightly irregular in the months previous, so I think i was starting to develop my hormonal condition and then I threw things over the edge). I’m not sure what came first, but this was at a time when I seemed to have a metabolic change and put on a few lbs. It is my theory now, that this is when I developed my late onset adrenal disorder, as things seemed to hormonally and metabolically change. I was always effortlessly thin until then; I was probably 5’3″ and around 100 lbs… suddenly, i had to fight my body like crazy and starve to stay at that size and I even lost a bit of weight from here dipping into the 90s (also i think around this time my body was trying to put on weight to become more of a womanly shape, and i wanted nothing of it)… I loved being small, so I did! I sure didn’t make the problem better by cutting things out of my diet. I was kind of happy at first, actually, to not have a period. No more inconvenience every month; no bleeding, and no cramps! But quickly, I realized that this was not good for health or for future fertility, and wanted it back. It wouldn’t come back. So I went to my pediatrician. They did bloodwork and my androgen levels came back slightly elevated and my thyroid slightly off. I was told I might have PCOS, especially since my mom has that diagnosis, I had amenorrhea, and high testosterone levels. What? A long term disorder? That was the beginning of my long endocrine journey.

I spent most of the next several years not menstruating and going to both holistic and traditional doctors. The traditional doctors wanted me to be on the birth control pill indefinitely, or hormone replacement therapy, but these gave me horrible side effects. Those gave me horrendous side effects, like heart palpitations, so I refused to go back on despite the doctors telling me of all the risks of not having a cycle for years. I was told by most of these docs I had PCOS, but by one, that I had something called hypothalamic amenorrhea, without much of an explanation, other than, “women who exercise alot get it, but i don’t think it would fix it by exercising less”. The holistic doctors made unreasonable recommendations, like taking crazy tinctures, supplements, eating perfectly clean, not using plastics and blamed my lack of menstrual cycles on my less than perfectly spotless lifestyle (which made me sad because I was living a healthier, cleaner lifestyle than almost anyone I knew; I figured if that was the case, that I needed to live such an extreme lifestyle to do a normal function like have a menstrual cycle, something was wrong with my body). I went everywhere from a naturopath, to an acupuncturist, to a nutritionist, to a homeopath, who was into new age teaching. So I’d go to these practitioners, and then not like what they said and then quit and throw more money away. I couldn’t make my whole life revolve around getting my period back. Ridiculous. So I did nothing for a long time, once in a while to go to a doctor for something else, only to be asked the date of my last period, and to be rebuked for being so neglectful with my health so as to do nothing, and to be told how i’d ruin my bones, and get uterine cancer if I didn’t have a monthly period.

It seemed unfair that I lived such a healthy lifestyle, and took better care of my body than anyone I knew, yet I had this weird and blatent health problem. At this point, I would not say that I had an eating disorder, like I did in the past. God had delivered me from that, by His grace. But I held onto certain ways of eating, that I actually believed I needed to engage in for my body and mind. I researched and lived a perfect PCOS lifestyle. I thought that sugar would trigger my PCOS, so I refused to eat anything processed or with sugar. Starch triggered PCOS, so that was out too. Fats often triggered me to binge, so I couldn’t eat those either. During one phase of my eating disorder, I struggled with binging, and I took myself to a 12 step program that advocated no sugar, wheat, flour, or any personal binge food. So whenever I thought a food might trigger me to binge I cut it out. That limited a lot of different foods, and I was eating mostly veggies, lean protein, and a bit of limited oils.  I was eating quite little, but had gained to a very “healthy” weight of 112-115 lbs at 5’3″ where I maintained. A very healthy BMI of 20-21. Any false move of adding in foods I didn’t usually eat, and I’d gain. Oh well, I figured I just had a crappy metabolism, and had to eat for it, or else I’d get fat. That was fine with me. I monitored my weight very closely. I was doing the right things for my mind and body.

In the back of my mind, I had this fear, as my body didn’t work for years. This sadness. I wanted to be a mommy someday more than anything. I had friends who were getting pregnant so easily. I wanted to feel a life that God had given to me, grow inside of my belly, someday. Yet, I probably hadn’t ovulated in years and years… so that would be difficult as my body for whatever reason that doctors couldn’t quite put a finger on, seemed to not know how to work. But I’d pray about it. I’d cry out to God about the situation, asking for guidance on what to do, and asking God to heal my womb so I could someday have the deepest desire of my heart; to be a mother (although I’d feel strange being so upset about this given I was probably 19 or 20 years old…)! He could give the barren women of the Bible children, so He could give fruit to my barren womb and make it sudden fertile someday, and normal again. My God is a God of Miracles, and He will faithfully supply all of my needs according to His riches in glory. I didn’t know how it would be possible, given I had no cycle for years, but God would quietly reassure my heart, “Lizzie… you Will be a mother someday”. I wasn’t sure how, but through adoption or through the miracle of somehow randomly ovulating and carrying a child, I would be a mother. And I’d thank the Lord and re-surrender this burden to Him.

My levels stayed similar over the years when I got them tested; low estrogen, high testosterone. I was at my wits end. It did seem like the very few times I had a light period in the past several years, I’d been eating more fat and weighed slightly more. Regardless of the fact that this all started with my eating disorder, doctors reassured me that my eating disorder had nothing to do with my absent period. Especially, because I had high testosterone, which is usually related to PCOS, and praised me for maintaining a low weight despite my PCOS. I had a very odd case of PCOS, I figured. It wasn’t even responsive to the perfectly clean diet that I ate for years. Usually, PCOS is resolved by a no sugar diet, but I eat perfectly no processed food, and I still had no period for years. I failed. I was determined to treat my PCOS naturally. How hard could it be. I read so many stories online of women with PCOS who resolve it with diet and herbs, so why couldn’t I? I was determined… I started a blog “My Journey to Natural Healing from PCOS”. Read through others posts and blogs who had successfully overcome PCOS. I researched herbs. I researched diets.

When researching the topic of amenorrhea in the summer of 2013, I found something out. Many women with eating disorders, or just restrictive eating and/or overexercise diagnosed by doctors as having PCOS, really had something called hypothalamic amenorrhea. Basically hypothalamic amenorrhea is the result of an energy deficit and the body decides that it can’t sustain a pregnancy, so it shuts down hormonal production. This might be true, because this started with my eating disorder, and I seemed to have light and sporadic periods compared to none at the few times when I ate more. And I did exercise daily no questions asked and eat pretty low fat. Yet I was a “healthy” weight, and ate restrictively to maintain my weight despite my “crappy metabolism”. I found blogs with women who told their HA stories, and I had this tug in my heart, “What if that’s me?”, yet I couldn’t gain weight or cut exercise! Were they flipping out of their mind? I found a website called, “youreatopia.com” which is a blog and forum for recovery from restrictive eating disorders. I didn’t consider myself to have a RED anymore, but compared to the seemingly ridiculous ways of eating of those women in recovery (2500 calories daily and NO freaking exercise), I did, I guess. With trepidation, I posted my story on the forum, and many girls and women responded that they had similar stories and had PCOS diagnoses, amenorrhea, and recovered after letting go, eating 2500+ calories daily, and cutting exercise. Ridiculous. I couldn’t do that! 1 woman even posted how she started at my size, and went on the plan and regained her cycle after 7 years of amenorrhea, but gained like 30 lbs in the process. Gahhh. Good for them, but not for me; I could never do that; I put so much of my worth and pride into keeping my small body. I then found a wonderful online forum of women with hypothalamic amenorrhea, and I could really relate to so many of their stories. I started to wonder, since I can relate so much to these HA women, maybe I just had HA and was misdiagnosed as having PCOS!? The only puzzling this was my high testosterone, when many women with the condition have low levels of testosterone… But  had to try it. I wanted to cycle so much I came to a place in the fall of 2013 where I was willing to try anything. Including giving up my tiny body, in order to have a chance at having a period again and maybe a baby someday… what if it was that simple.

So I started eating more fat… exercising a bit less… and boom. 2 months later I got my first period in 2 years, and my first normal, non spotting, period in like 8! From the beginning to my first period, I gained 10 lbs… I then knew I had to keep doing what I was doing, although maybe it was a fluke, cause it couldn’t be that simple? I gained 10 more lbs in weight. Probably about 20 lbs in total. And guess what? I got my second period a month later and I felt healthier than ever! That was such a happy day, because at that point, I Knew it wasn’t a fluke! It was the real deal. This was a difficult time as first of all I didn’t tell my then boyfriend (now husband 😉  ) about what was happening. I was embarrassed I think primarily because I wasn’t “too thin” and didn’t want him to tell me something like, “but you don’t eat too little!”, or “you look perfect… i don’t think you need to gain weight”. So I hid this journey from him. At the same time, my mom thought I was doing the complete Wrong things for my body. She was scared that I was gaining weight too fast and it was due to binging or something and i was being stupid. A few times she said heart wrenching things to the already body image conscious young woman like, “you are getting so fat!” or “you used to be cute” or even “I was so proud that I used to have a thin daughter”. This killed my heart, because I love my mom, and we are very close, but this season showed me the lesson that my mom does not always know best and sometimes I need to do the things that are necessary for me, if she doesn’t agree. Additionally, this was a season of breaking up with the scale. In my HA season, I weighed all the time, to keep my weight stable. During this recovery season of my life, it became too difficult to see the numbers on the scale creeping up and up. I decided one day, that since I’m so numbers conscious, I needed to either stop gaining or stop weighing, so I chose the later. I chose to completely surrender the number on the scale and my size to the Lord, my creator, to decide what He wanted it to be… it’s scary and freeing. I still rarely weight, and know that my weight is now pretty stable as my clothes fit similarly.

The months went by, and every month my period kept visiting. I have been pretty regular for over a year and a half, thank God. I chart my cycles and have for most of this time, and I do ovulate. At first my luteal phase was short (6-7ish days), but over time it has increased to a normal length (11-13 days average). I praised God, and figured that maybe I was misdiagnosed, because it sure seemed that way! My body was cycling, ovulating, and having periods every month for the first time in 8 years. I did wonder if maybe I wasn’t really ovulating and maybe I was just having anovulatory bleeds. So I decided to request that a doctor test my progesterone. I knew from being on the HA board that I had to go around 5-7 days post ovulation for a good reading, and determined that based on my cycle, I would go for my progesterone test on 6DPO. Well… 6DPO happened to be on a sunday of all days that cycle! I so wanted to know this information that I went to an urgent care (since I needed a mantoux test done anyway for a job and I asked them to quickly test my progesterone level… they seemed puzzled). Well, they accidentally ordered a different test called 17-OH progesterone. Little did I know that this test that was mistakenly ordered is done to detect adrenal disorders.

Well, I got a big surprise. It was 6 days after the test, and I finally got the call that the bloodwork was done. I was so excited to finally find out my cycles were normal; that I was ovulating. My then boyfriend, had no idea about any of this, because I hid it from him 😦 but I did have an online support group (the HAers who knew all about it). I got the call from the doctor and told my boyfriend that I had to step out for a moment to take a phone call, as we were together doing paperwork in a coffee shop. The doctor told me that my levels came back and were elevated. I thought, “Good… elevated progesterone means I surely ovulated!… YAY!”… I texted some people from my group, and through correspondence with some people, I realized that they had not tested my “normal” progesterone, they had tested my 17-OH progesterone… and its elevation was likely indicative of an adrenal disorder. Crap. I internally freaked out, but decided to drop it and look for further answers, and testing, and maybe get the level redrawn. Well… I got engaged the next day :)!!! So it was put on hold for a few weeks. Through more testing, research, and genetic testing, I discovered that I had a condition called non classic congenital adrenal hyperplasia, which presents similarly to PCOS, and causes my body to produce excess androgens. Suddenly this blood profile made sense. I did not have PCOS. I had HA and congenital adrenal hyperplasia.

Although my condition is mild, it may have significant implications for my future fertility and children’s genetics. I’m still getting all of this figured out, but I’m so grateful to have answers and to be getting more and more pieces to this puzzle, that once seemed so mysterious. If it wasn’t for having hypothalamic amenorrhea (and finding out through sheer coincidence and trial and error through stories on the internet), and then for getting tests because of HA, I believe I would have had unexplained fertility issues in the future because of CAH. If I didn’t find internet resources and listen to my body, and try the HA recovery protocol of eating more and exercising less, I believe I would have not recovered from HA until trying to conceive and doctors would have been puzzled and that would have been a road block. Everything happens for a reason, and I have seen that through my story. There is so much purpose in this and too many “coincidences”, that I am confident that somehow, I will be a mother someday, even if there are some difficult parts of my journey on the road to getting there; or if it doesn’t happen biologically, that we will become parents through the equally amazing miracle of adoption! I don’t know the ending to this story, but I do have Faith that it will be Beautiful.

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