I write and share this without omitting details because for a long time I felt very lonely and misunderstood. I felt that no one understood what I was going through, that many saw me as ‘the hippie who doesn't want to use pills to cure something which I don’t understand why it even matters’, and that none of my efforts were healing me.
Nothing has helped and is helping me more than feeling seen, knowing the experiences of women who have gone through or are going through something similar. This is my journey with Hypothalamic Amenorrhea, a condition that affects my life in ways I never imagined.
I am scared and full of doubts; many days I feel powerless. For some time now, this feeling has persisted in the back of my mind.
I suffer from an invisible and silent disorder, ignored and often dismissed by many (I used to dismiss it too).
I have hypothalamic amenorrhea - amenorrhea means not menstruating for more than 3 months and hypothalamic refers to the origin being in the hypothalamus - for at least 1 year and 8 months.
Two weeks ago, I found out that I have osteopenia; my bones have the density of a post-menopausal woman. This is common in women who do not menstruate for long periods of time or post-menopause due to the drop in estrogen, a hormone with many functions, including producing ovulation and protecting the health of our bones.
When I first started worrying about amenorrhea, many would say to me ‘And? So? ' 'Why do you care' ‘lucky you, no periods!’ ‘It’s normal not to menstruate, it happens to many women’ ‘Lucky you! You don’t have to worry about getting pregnant.’
These comments reflect the lack of menstrual education that has existed (at least in my experience, although fortunately, it is changing). Instead of teaching us to understand, care for, and honor our cycle, we are taught (at least in my case) to avoid staining ourselves with blood, to prevent pregnancy, to reject our menstruation, to dislike it, to be ashamed of it...... What were you taught about menstruation? Tell me in the comments!!
Our menstrual cycle is actually a gift that we women have that gives us a clear guide on how we are doing, how our cycling is. Just as there are essential seasons in nature for the functioning of everything - day and night, light and dark, winter, spring, summer, fall - we have four phases - menstrual, follicular (pre-ovulatory), ovulatory, luteal (pre-menstrual) - that are essential for the optimal functioning of our body. Thanks to cycles, life creates conditions for life. Without cycles, we stagnate, and the wheel that makes life turn stops.
Menstruation gives us a clear indication of our health. Menstruating each month is directly linked to the health of our bones, our cardiovascular system, nervous system, our metabolism, and even our thoughts and mind; it is literally connected to every part of us. If we know our cycle, we can work with the available energies in each phase, instead of abusing ourselves and forcing ourselves to be in a perpetual ovulatory state of going out into the world and constantly doing, as our society encourages and praises. Knowing our cycle is like having a bonus that tells us how we are inside. Not menstruating (at ages when we should) is also information: something in us is stagnant.
For many reasons, I experienced my first periods thinking it was something I had to hide. That I couldn't just say to anyone that I was menstruating. That if I was in a public place like in class or on a plane and needed a pad before going to the bathroom, I had to take it out secretly, without anyone seeing me. It struck me that when I took out a pad in class, a voice in me said, ‘Don't let anyone see you, it's not good manners, it's something private, it's inappropriate if they see you.’
I was taught that menstruation is a nuisance, an inconvenience, that when you have it, you can't wear a bikini or swim unless you use a tampon, that you have to be constantly checking if you haven't stained yourself, that before it comes every month you have PMS, "premenstrual syndrome," which 'makes you mean, sensitive, and crazy.' I even have comments like, "I can't wait for menopause to stop bleeding."
Getting the diagnosis of Hypothalamic Amenorrhea (HA) was VERY difficult. And even today, I occasionally doubt whether it really is HA (they call this unicorn syndrome, common among women who suffer from it: many of us believe that our case is unsolvable or something else that we haven't discovered and we are the exception, the unicorn).
HA is diagnosed by exclusion. If it's not for a, b, or c reasons, then it's considered HA. a, b, or c generally being:
Polycystic ovary syndrome (PCOS) - which many gynecologists will tell you that you have, negligently, without ensuring that it is. If you get this diagnosis only from an ultrasound, please doubt it!
Thyroid problems
High prolactin levels (which could suggest a pituitary tumor)
Low ovarian reserve - each woman is born with a certain number of eggs, sometimes this number is very low and could be the reason behind amenorrhea
Effects of stopping birth control pills - sometimes it can delay the reappearance of menstruation, but I understand that if it is more than 2-3 months, you need to investigate why.
I stopped taking birth control in January 2022. To my surprise, a month later, I had some bleeding, although it was light. In my time of not knowing anything about hormonal health (and not caring because 'it was too complicated and better leave it to doctors'), for me, if there was blood, it was menstruation. Today, with all I've learned, I know that if I'm only spotting, without a heavier flow, it's likely that there was no ovulation. And without ovulation, it's not menstruation. But, from February to October 2022, I bled once a month for three days, and that reassured me.
I started taking birth control at the age of 17 as a solution from the most renowned and praised gynecologist of the time for my irregular bleeding (this story deserves a chapter on my podcast, so stay tuned). I stopped taking the pills about twice in the 7 years I took them, and during the periods without them, I didn't menstruate. So, the post-birth control bleeding, even if minimal, surprised me and made me think that my irregular menstruation had been resolved, and I could finally stop having a small uncertainty (which I tried to ignore) about why I wasn't getting my period.
In May 2022, I went to Berlin for what was supposed to be a 3-month trip, which ended up lasting 11 months, during which I spent time in India and Southeast Asia. In my second month in India, in October, I bled for the last time.
In retrospect, what had changed?
From 2020 to 2022, I enjoyed a peace with my body image and around food that I hadn't had since my adolescence (another rabbit hole I'll dive into on another occasion). My second month in India, I began to feel uneasy again about those issues.
While traveling and neglecting myself for a bit, I started eating more out of curiosity and anxiety, and then I fell back into an old and very familiar vicious cycle for me: worrying about gaining weight and calculating how to lose weight by eating less and moving more.
Additionally, I was traveling alone in a country that, although I felt very safe in, still has its dangers.
With all this, my body said:
'You're not in a condition to create life, so lady, we're shutting down the reproductive system!'
And well, since I had never been regular, I didn't pay much attention to it.
I arrived in Chile 7 months later, and EVERYTHING had changed. I had experienced so many things and wanted to focus on continuing to learn. I had started to understand many things intellectually.
I began to take courses on topics that interested me. Among them, I took the Ayurveda diploma course from Somos India. In the fourth month, Jali (my teacher) spoke very seriously and clearly about the importance of the menstrual cycle, how it's not normal to not have it, and that it’s something to check on. While studying Ayurveda, I learned how the human body works and various health indicators. For example, going to the bathroom every day, the shape and color of your stool are signs of health. The Bristol stool scale shows the different shapes stool can take, with type 3 and 4 being ideal forms, and type 1-2 indicating some degree of constipation and intestinal dryness.
When I returned from my trip, I was going to the bathroom every day, but the stool was type 1-2. Additionally, I wasn't menstruating. I knew something was wrong, but I had normalized it so much that I unconsciously believed that if I didn't give it much attention, it wouldn't be important and things would go back to normal without effort. These classes were a wake-up call. Something was wrong with my system, and it was time to take responsibility.
So, I started seeing doctors. I visited two gynecologists, a general practitioner, and a gastroenterologist. A part of me was still so ingrained in the old paradigm that if a doctor saw my tests and told me everything was fine, I could stop worrying. As long as I saw a doctor, I could feel at ease. So I went to a gynecologist and told her that I hadn't menstruated in a long time. She ordered many blood tests and an ultrasound. Her diagnosis: I had low vitamin D and polycystic ovaries and needed to take birth control.
Another part of me had a very strong clarity, even though I didn't know why yet, that birth control was not the solution but just a mask. I also knew that polycystic ovary syndrome (PCOS) is like the psychological diagnosis of attention deficit disorder, the most frequently given diagnosis without it being the actual issue.
There was a part of me that has always existed and distrusts anyone who tells me what to do regardless of their experience or titles. This part realized that it was obvious that this person with a doctor's title was not trustworthy.
Many people believe that birth control pills are the answer, that if you take them, you menstruate, and your cycle is healthy. However, the bleeding induced by birth control pills is not menstrual bleeding; it is withdrawal bleeding. This happens because combined estrogen and progestin pills are taken for three weeks, and then a week of placebo or no pills follows. During that week, the sudden drop in hormones causes the uterine lining to shed, causing bleeding similar to menstruation. However, the pills aim to prevent pregnancy, so they suppress ovulation. Without ovulation, there is no menstruation. While the pills provide estrogen, it is artificial and does not cause your body to produce it naturally. They also replace the hormone progesterone with progestin, which is not identical, so you lose some of the benefits of progesterone. Conventional medicine is based on treating diseases with medication (which often saves lives), so if there is an absence of bleeding and the tests do not show anything "abnormal," most gynecologists will simply prescribe birth control.
With my certainty, I told her I would not take them and asked for an alternative.
- ‘There isn't’.
While I had the old paradigm deeply ingrained in me, I also had the seeds of certainty that all the answers are within me and that I could heal naturally and truly.
Parenthesis:
It is undeniable that we are living in a period of systemic crisis globally, at all levels: ecological, social, economic, political, medical... The old paradigm is clearly falling apart, and we are transitioning to a new one that is not yet established but is becoming increasingly clear.
Specifically, the medical paradigm—in which the doctor is seen as an omniscient figure who knows everything about you better than you do, where health is seen in absolute terms, healthy or sick, where illness is immediately combated with medication, and where there is a remedy for every pain, covering it up instead of feeling it—no longer makes sense. This paradigm delegates all power to an expert and considers that illnesses occur due to genetics and/or bad luck, leaving medication as the only solution.
In the transition to a new paradigm, we increasingly understand that health is in the hands of each individual, that our lifestyle is intrinsically linked to our health, and that, in the end, no one knows better than ourselves how we feel. However, we recognize that there are many guides and that medical advancements are there to assist us. In this transition, we understand that medication, in many cases, is a lifesaver, but it is not always the first thing to turn to. We acknowledge that conventional medicine has contributed to extending our life expectancy and quality of life, so its benefits are undeniable. Nevertheless, it is crucial to treat diseases from their roots and not simply cover up their symptoms. With this understanding, we integrate all tools in our healing journey, with ourselves at the helm of that journey.
In the transition, we are becoming aware that health is a continuum involving the harmony of all our dimensions. Nothing is separate: neither our relationships from our spirituality, nor our work, nor our body, nor our thoughts. Our health depends on what we do daily, not always on the occasional pill we take. Illness is a call back home, realigning every aspect of our life with who we truly are.
In the transition, the old paradigm remains alive, but many things no longer make sense. Although it might sound more comfortable, the discomfort generated by the certainty of the “new” and unknown is greater. To transition, one must go through the discomfort of letting go of what once sheltered us.
So, with my visit to the doctor, we see the contradiction of beliefs that lived within me. The old paradigm, which I thought I had left behind, was starting to crumble, and thus the wisdom of everything new that had begun to take center stage in my being was emerging.
I kept seeking opinions. I went to another doctor who ran all the tests, and also said:
'Your hormones and tests look healthy, you don't have to worry, there are many women who don't menstruate, but your hormones are like those of a young woman. Your issue is in your head, relax.'
When you know something is wrong, even if everyone tells you not to worry, even if you try to ignore it and trust the doctors, the worry does not go away. The doctor was right in one thing: a large part of this was in my head and my limited capacity for real relaxation.
Due to the gynecologist's negligence and the lack of answers in conventional medicine, I decided to go down the path of "alternative" therapies (another rabbit hole). Thus, in August 2023, I started trying everything. I went through Ayurvedic therapy, acupuncture, naturopathy, Akashic records, chakra cleansing, biodecoding, yoni eggs, family constellations, and there were even days when I lost all faith and sat by the Christ statue next to my house to pray to anyone who would listen. Still, my menstruation has not returned.
In December, I started consulting a nutritionist expert in hormonal health. She was the first to mention the possibility that I had HA. I had heard about this condition but didn't know how it was diagnosed. She explained: one of the major causes of HA is stress. When your body does not have enough nutrients, when you don't rest enough, exercise a lot, have restrictive tendencies in your diet, you stress your body, and it prioritizes using the limited energy it has for vital functions, shutting down less prioritized, nice-to-haves, functions like reproduction.
In a nutshell: HA is a neurological problem, not an ovarian one. To menstruate, the hypothalamus (the central operator of our brain) must send a message to the pituitary gland indicating that there is enough energy to release the follicle-stimulating hormone (FSH). This triggers the production of estrogen, which leads to the release of luteinizing hormone (LH) and to ovulation, followed by the release of progesterone when you menstruate.
If you got lost in "follicle-stimulating," for now, it is enough to understand that the hypothalamus has to send the signal that there is enough energy to carry out the body's various functions for the hormones that play key roles in our menstrual cycle to be released. If your system does not have enough available energy, the body is so wise that to survive, the hypothalamus decides to prioritize vital functions like breathing over reproduction, thus shutting down the menstrual cycle.
It made sense to me, yet it didn't.
I am fortunate to have been born with privileges that ensure my basic needs are met, and I never want to forget to be grateful for that. I have created my life to live it the way I want: I travel when I want, I own my time, I manage it how I want, I pursue my interests, and I have nurturing and deep relationships with people I love and who love me. I meditate daily, I move, I am in nature 80% of the time, I mostly ate “clean.” Until I was 24, I always did intense exercise like CrossFit and HIIT routines, but since I was 26, I only walked, jogged, and did yoga, without forcing myself.
Most people who know me would say that I am very relaxed, healthy, and disciplined. These last two adjectives are characteristic of women with HA. This discipline and health tend to be so extreme that they become unhealthy.
This is to say that, by the book, I do everything and more that is recommended to calm our nervous system, and yet, I have hypothalamic amenorrhea. That's why it was so hard for me to accept that it was. But the menstrual cycle does not lie. In this journey, there are some key phrases that have helped me solve the mystery of where that stress comes from.
“The only way out is through”
“Your menstruation is on the other side of doing what deeply scares and discomforts you.”
The only thing that hasn't been bringing me peace for a while now is my relationship with food, which is directly linked to my body image. These are not minor issues; in fact, they are aspects present throughout all of life because in this existence, I am with my body all the time, and I need to eat to live. It was hard for me to acknowledge, but my satisfaction with my body image was too tied to my weight. Gaining weight on my journey brought back restrictive thoughts and more controlling behaviors around food. I know what it is to live free from that because I have experienced it, but when I tried to control it, I fell back into the familiar loop I was in until I was 24. Much of my life was spent in a context where weight was talked about a lot and in a weight-centric society that views thinness as synonymous with health. I dare say most people have or have had issues with their body image and diet. So, I don't blame myself for having a distorted view, but I am taking responsibility for solving it.
Essentially, what is needed to heal hypothalamic amenorrhea is to reconnect with your body's rhythms and signals, aligning every aspect of your life with your natural rhythm. The Hypothalamus Amenorrhea Society suggests that the solution is: eating nutritious (and non-nutritious) food in large quantities and frequently, resting, and not exercising.
What has scared and discomforted me since January when I started researching everything about HA is eating more and more frequently. Recognizing this hasn't been easy. Added to the fact that I shouldn't exercise, it's very difficult. Everything society values because it supposedly generates health—eating little, filling up on vegetables, preferring diet foods, not eating meat, not eating dairy, intermittent fasting, exercising, and being productive—is exactly the opposite of what I have to do. It wasn't hard for me to stop exercising, I'm learning to rest, but now I'm finally seeing clearly the ways I avoided eating more. Although I've been eating much more since January, I'm only now understanding the amount of food I really need.
Illness is an opportunity to return home to ourselves. It shows us that something in us is not aligned. I have suffered with this and have experienced much frustration, fear, anger, and hopelessness. I have doubted a lot whether I can solve it. But I also confess that there have been moments when I've thought: "I still don't feel the peace I want to have around food and my body; what a gift that to menstruate I have to solve that." Deep down, I know it is an opportunity to live a more peaceful and aligned life.
As a result of this, I have learned so much. I have been forced to do the simplest and almost absurd things I overlooked: for example, doing nothing, literally sitting and doing nothing. If you have never done it, please give yourself 5 minutes of your day and do it. Also, to be very aware of where I am doing things from: a sense of duty? Wanting to control my appearance? From a place of demand? If it's any of these reasons, then it's not the right path. All this deserves another full article.
There are many women who live evidently stressed, with 3 jobs, children, studying, and much more, and still menstruate. There are women who do triple the exercise I do, live with bulimia, weigh less than I do, and still menstruate. There are so many women (and people) who live life on a diet. There are so many people who prioritize their body image above all. There are all kinds of cases. Stress affects different people in different ways. The least stressful thing in the world can be the most stressful for someone else.
This is how my body chose to manifest it. My controlling behaviors, endorsed and normalized by a sick society on the path to recovery that sees discipline, effort, and sacrifice as pillars of success, led to the loss of my menstruation. This is one of the most difficult experiences I've been through, but in my most grounded moments, I see it as a gift that forces me to shed everything I am not. It takes me on a journey to become aware of the many ways the old paradigm still lives in me, to see how it crumbles and leaves me bare with only what I am: an adventurous and joyful soul, in a human body that allows me to experience life, with a mysterious and intriguing mind that I can program in any way I want to collaborate with my body and soul, on a planet with thousands of unique and unrepeatable beings.
I know that when I throw questions into the universe, somehow it responds. In February, I asked it to give me answers, "What do I do to heal?"
A few days later, I came across the Hypothalamus Amenorrhea Society, a community of hundreds of women who also have HA, led by three coaches who have gone through the same thing as me. I had never felt so validated, seen, and understood as I did in that group. Reading the thoughts, challenges, and experiences of people living the same reality as mine made me see that I am not alone and that there is a way out.
I share my process because it has been a journey of confronting my most limiting beliefs and seeing the many ways the same patriarchy I have criticized so much lives in me.
As within, so without.
To get out of that paradigm, a deconstruction is essential.
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