This is a space where women can share their own journeys and struggles on topics within the realm of women’s health. Each Friday, 5 stories (but this week is 6). The idea is to bring light, breath, and voice to things people generally don’t want to talk about. Or things that are commonly misdiagnosed. And they’re not all success stories! Sometimes having words in front of you detailing someone else’s struggles makes it that much easier to cope with and continue on even if things feel like they may not be working.
Also, since today is THE RachL Mansfield’s birthday, a lovely, honest, inspiring woman I am so lucky to call friend, I want to take a moment to direct you to her blog post about her own harrowing hormonal tale. In her post, she opens up about her fears, insecurities, and anxieties about losing her period, and some of the things she is doing to get it back without going back on the pill (read: adaptogens, stress less, dietary changes, adaptogens, etc).
Sometimes it’s not always about the success story, but the journey of how you’re trying to get there. Every story matters, so please email me if you’d like to share yours! twistoflemons@gmail.com
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I grew up a competitive gymnastics, surrounded by a family of marathon runners, and very health conscious friends and family. Talk of food and fitness were common. Around age 13 my innocent desire to be healthy turned into a not-so-innocent desire to be thin. I developed an obsession with nutrition that turned into a full-blown eating disorder. I developed amenorrhea. My lack of food and excessive exercise caused me to loose my period after already having it for a year.Eating Disorders are surrounded with feelings of fear and shame. You can imagine the courage it took for me to tell my mother and then my doctor that I wasn’t getting my period because I thought I had an eating disorder. My mom didn’t really know what to do with what I said, so she just took my primary care physician to let her deal with it. When I told my doctor the situation all she did was tell me that it was normal for girls my age to have inconsistent periods. She told me not to stress about food and just eat lots of fruits and veggies. She offered to put me on the pill. No concern. No eating disorder screening. No help. This happened THREE TIMES.It would be one thing if I didn’t say anything and she had to figure it for herself. At the time I was visiting her office regularly for “mysterious” health issues (all which resolved themselves when my I recovered from my eating disorder). I understand how eating disorders get overlooked due to the stigma and our cultures obsession with “clean eating”. But I didn’t just leave it for her to figure out. I spoke up. Then again. Then again.My doctor is known for her integration of traditional and natural medicine. She is known for her knowledge in a variety of ways to health and healing, yet she never took into account what I was saying. I was dismissed – left only with the reassurance that what I was doing to myself was okay.Thankfully I found other resources. I met with nutritionist who helped me heal and regain my period. But it took lots of work to find her. I knew that my habits and mindset weren’t healthy. I knew I needed help. I had to reach out and continuously speak up for myself. This makes me wonder, how many women out there aren’t able to speak up for themselves? How many women out there continue to struggle because of lack the lack of knowledge and compassion from their doctors? I am forever grateful that I had the resilience to keep searching for a better answer and I hope that you do too.Love, Annaliese@beauty.in.balance
- I am 19 years old and was diagnosed with PCOS about 4 years ago. Around the time I first got my period (age 13), I was getting a few breakouts, nothing major, so I went to the dermatologist. She suggested I go on the pill. It would give me perfect skin, regulate my periods, help with cramps, nothing short of a miracle! A lot of my friends were on the pill, my mom agreed with the dermatologist, so I didn’t even question it. I started taking it every single night, and all those promised things pretty much came true. Not that I was really paying attention to it though- it really did not seem like a big deal at all. At about age 15, I forgot to buy a new box after i finished my pills for the month one time, so I missed a few. I figured I’d just wait a month to get my period again, then restart taking the pills. I didn’t get my period the next month, though, so I went to see a gynecologist (first time ever). She assessed my symptoms, did an ultrasound, and diagnosed me with PCOS. “It’s not a big deal, tons of girls have it, you just have to diligently take the pill every night and there’s nothing to worry about.” Again- I didn’t question it.To give you a little context here, my family is pretty big on western medicine. We have a “friend of the family” doctor for every specialty. Growing up, I never saw a naturopath, acupuncturist or functional medicine practitioner. I went to the “real” doctor, and got a prescription. I was not introduced to the world of alternative medicine until very recently, and honestly used to think they were yuyu crazy. In fact, I started seeing a functional medicine doctor this year and I kid you not, my mom still doesn’t believe she’s a real doctor, no matter how many times I tell her that I’ve seen her diploma.
So as I began to learn more about health, true health, and the complicated truths behind the pharmaceutical world, I started questioning some things. I no longer blindly pop antibiotics every time I have a stuffed nose- as my old doctor would have it. I no longer lather cosmetic creams and sprays and soaps all over my body without reading the ingredients and checking for toxicness. I try to keep everything I put in and on my body as natural as realistically possible, and that means avoiding unnecessary pills- including the pill.
So I did my research, I read allll about hormonal imbalances, what they mean, what they do; I read about the pill and all the testimonies of women who decided to go off it and have never been happier. I read about balancing hormones naturally and all the success stories of happy, thriving, clear-skinned women who went off the pill, and through good food, and stress management, and a whole lot of faith, cured themselves. I was inspired by all these smart women who took control of their health. I was also scared as shit. PCOS isa big deal. Hormones are to be taken seriously. They are complex, and sensitive, and temperamental, but they do so much for us. Happy hormones, happy life. So I read, I did some introspection, and I went off the pill. I stopped getting my period, my face broke out like it never has in my entire life, and my mom FREAKED OUT. At first I was calm. I did a lot of face masks. I exercised in a way that makes me happy, favoring short, intense workouts or long, soft ones but never long, hard ones that would make my cortisol go crazy. I am changing up my diet prioritizing blood sugar regulation. I am taking all the best adaptogens. It’s been 6 months, my skin still resembles that of a hormonal fifteen year old. I have not gotten my period back and my uterus is still full of cysts. I’ve seen two dermatologists, both of whom have said I need to go on the pill. I also saw a new gynecologist today who said I have to go on the pill. They don’t get why I’m making such a big deal out of it (neither does my mom), and frankly, I can never stop crying during the appointments for long enough to explain to them that I want to cure my hormonal imbalances, not just put a band aid over the symptoms that they are causing. So I’m feeling pretty defeated, lost, and unsupported. My functional medicine doctor, who I really like and trust, is great but doesn’t really know a lot about hormones as it is not her are of expertise, nor does she know of anyone she can refer me to. There are no functional gynecologists in my city, or as far as I can tell, any gynecologist that is at least a teeny bit open to the idea that PCOS can be cured, not just managed, and that there are answers other than the pill. I am aware that I am young and naïve and that we should leave the healthing to doctors because they are experienced and smart, and I’d love to work with a health practitioner instead of against all of them, but I also don’t want to go back on the pill. But my family won’t stop telling me to just get over it and just take the pill like everyone else does, and every doctor I see warns me that if I don’t, I might make the problem worse and be unable to conceive if and when I ever decide I want to. And also, having bad skin is really taking its’ toll on my self-esteem.
So I don’t know if I should have more faith and hope that if I keep doing what I’m doing, my hormones will find their balance. Or if I should listen to my mom and the doctors and just go back on the pill. And I’m tired of feeling ugly because my skin is so bad right now. And I’m tired of my mom thinking I’m just acting out in going against the flow. And frankly, I feel kind of like a fraud. I mean, I have a blog about healthy eating, and I tell people to eat more vegetable and to move their bodies. And I eat well and I exercise, I manage my stress and I listen to my body. And yet here I am, spotty face and spotty ovaries. And it’s kind of soul crushing. So this is technically not a fempowerement story. I have not overcome my issues. It´s me sharing my story in hopes that it will make you see the importance of having open minded, compassionate people like you in the health field. I know I am not the only one in my situation- neither my hormonal situation nor my craving better health practitioners situation. So I hope this inspires you to keep doing what you are doing and keep shining the way you do because it is SO IMPORTANT!!
- My name is Stephanie and I’m a 26 year old Train Dispatcher/Dog Mom/Powerlifter/Bundt Cake lover from the Chicago suburbs. I saw your story on IG (note: you’re the cutest!) about looking for others to share their health/wellness related stories so here I am and here it is…To preface, I have been obese the majority of my life. This became so “normal”, so engrained in my being, that I subconsciously ignored the continual damage to my body fueled by bad lifestyle/nutrition choices that spanned from my youth into adulthood. Fast forward a year and a half ago– I was newly married, teetering on 300 pounds at 24 years old (at 5’4″), diagnosed with (and medicated for) type 2 diabetes and high blood pressure, and beginning talks about starting a family with my husband. I knew bringing a child into this world with so many high risk complications was not smart nor healthy and I refused to put my future child at risk. I did not want to be a mother who could not keep up with their child and I knew if I kept on with my current lifestyle, my lifespan and quality of life itself would be diminished greatly. I had to change and after much denial, anger, sadness, and revelation, I did just that.
I began by just watching my food choices and walking at work. This transitioned into finding a personal trainer whom helped me with both nutrition and exercise. Over the span of eight months, with a proper diet and exercise regiment and a whole lot of sweat and tears, I dropped over 100 pounds. Along with the weight, I reversed my type 2 diabetes and high blood pressure and was able to come off all related medication!
About 80 or so pounds in, I lost my gallbladder, whom I so lovingly named Gail. It was after Gail’s unexpected departure that I began to experience some seriously nagging health issues. Excessive hair loss, muscle spasms, skin issues, amenorrhea, and an overall increase in anxiety. This lead me into a downward spiral of anguish, for the source of which I was at a loss.
After many tests by my caring primary doctor (Shoutout to Dr. Karen Botsoe from hairpluspills.com), I was diagnosed with the autoimmune thyroid disease Hashimoto’s Thyroiditis. Huh?! She referred me to an Endocrinologist for further evaluation. To say the least, I was scared as shit. I immediately, literally right after I got the news, Googled so much that I became obsessive– so many horror stories of lifelong despair, increased risks of miscarriages and birth defects and genetic issues, the list seemed endless. The referred Endocrinologist was booked for months so I found another in the meantime that could see me sooner, I needed answers. He, who shall remain nameless, said that they do absolutely nothing for Hashimoto’s and simply monitor the antibody levels annually. That it was a waiting game until the thyroid eventually stopped working, which it likely would. And when this happens, a medication like Synthroid would be prescribed. This, after reading so much information and treatment options, was disheartening and not enough for me.
I then made an appointment with a D.O., whom I read were more open to treatments for various issues. WRONG. This guy, who also shall remain nameless, simply said I needed to deal with my diagnosis and that it was not a big deal. Again with the Synthroid. WHAT?! Un-fucking-real. I was in despair– confused, ailing, and felt utterly hopeless.
Fast forward to my appointment with my referred Endocrinologist– this doctor, again nameless, was a bit more understanding and made an effort to run additional tests related to the thyroid disease. This resulted in a diagnosis of the genetic mutation MTHFR (single strain heterozygous C677T). Awesome, another damn issue. I was prescribed some ridiculously expensive “pharmacy grade” Folate mineral/vitamin. I was eager for help so I started this, which ended up doing nothing except burning a hole in my pocket. There was no real treatment given or even referred again for the Hashimoto’s and it was treated as though it was like a pimple. I refused to accept this, refused to just give up on my health and my body.
6 months or so later, after a whole lot of soul searching and more research, I found an Internal doctor who specialized in, and also had, Hashimoto’s. Her wait lost was long but given my past experience coupled with her amazing reviews, I was more than willing to wait. Enter Dr. Sarah Zielsdorf out of the Institute of Personal Development in Romeoville, IL (other locations too). Truly worth naming and really an ailing individual’s God send. Compassionate, understanding, and motivated for her patients wellness. She listened and explained, ordered tons of necessary tests, and began treatment. Treatment that was based on every single level involved in thyroid function, not just the dreaded TSH. Evaluation of Reverse T-3, Free T3, T4, Iron panels, Magnesium, Cortisol, Vitamin D, etc. Innovative treatment of Hypothyroidism and Hashi’s included WP Thyroid (T-3 and T-4), a natural desiccated thyroid (NDT) treatment, coupled with Liothyronine (T-3), and further addition of Low Dose Naltrexone (LDN). LDN is being used to treat many autoimmune diseases such as Hashimoto’s and MS, CFS, and even types of Cancer. Research it all, I promise you won’t be disappointed.
Fast forward a year later and my thyroid levels are better than ever, my hair and skin are better, my period is regular, and I’m happier than ever. I’m living an awesome life thanks to intuitive thinking and a relentless attitude coupled with an open minded Internal doctor (who is now a candidate for Institute for Functional Medicine Certified Practitioner!) who truly believes in healing patients the right way, rather than sitting back until conditions worsen and/or throwing the wrong prescription medication at patients, lead me to where I am now.
While this story is lengthy and a lot to take in, I want others suffering to see and understand that they are in control of their health. If you know something is off, keep searching. Where there’s a will, there’s a way. The body is capable of amazing healing given the correct medical treatment and minerals/vitamins/food. I refused to be defined and/or confined by my illness, I chose to life and to live well instead.
Thank you for (hopefully) taking the time to read my story and I hope you find it inspiring and empowering enough to share.
Note: Besides my amazing thyroid progress, I remain diabetes and high blood pressure free and my husband and I are newly in the works of trying to conceive! In the meantime I’m lifting all the heavy things, loving on my three dogs, and loving my body as much as possible. Cheers to good health and wellness!
Well wishes,
Stephanie DeMarco
(@stephaniemarie2413) - The idea of FEMpowerment Fridays is dope for so many reasons, but
especially because it seems so comprehensive. While it is SO important
to discuss and promote awareness of health issues, it is also
important to remind each other that we are all capable of helping out
our ~lady sisters~ in many ways: through giving advice, sharing
stories and experiences, chilling in the waiting room with your BFF
for a scary doctor’s appointment, or even helping out perfect
strangers in the form of donations or and other means of support.
While many women deal with health issues on a daily or chronic basis,
many women are generally “healthy”* and can be of value for those who
are not as fortunate. (*I put that in quotation marks because the
term/idea of being healthy has a million different meanings to a
million different people, I don’t want it to come across as offensive
or insensitive by any means). Infertility is an emotionally
excruciating issue for many women, but there are many of us who (in
that field) are healthy, able-bodied, and can potentially provide
help!I am currently in the process of donating eggs to a family through the
Center for Reproductive Care at Columbia University Medical Center in
NYC. A little bit of background about this journey: I work at Memorial
Sloan Kettering Cancer Center researching pediatric bone marrow
transplants. While our kiddos are incredible and many are responding
super well to present day treatment, there are still very real long
term effects of those treatments. One of the common late onset/long
term effects is infertility. It’s amazing to see a cancer survivor in
her mid 30s come in for a follow up visit for a transplant that she
had 20 years ago at MSK, but it is still obviously heartbreaking to
hear of any late onset effects of treatment. I have seen a few
patients who have infertility issues as a direct result to the very
treatment that saved their lives many years ago, which lead me to seek
ways that I could help. It might sound silly, but it did not occur to
me how much donors are needed until I began looking into this
program/process, and I am so glad that I have gotten involved. This
process requires me to go through a 10 day course of self-injected
hormones, which might be scary to some, but when you think about the
big picture, it’s really not that big of a deal. Plus, even if you are
found to have a dormant health issue that disqualifies you from being
an egg donor to a woman/family, you might still be eligible to donate
your eggs to research, which is still an awesome contribution to
improving women’s health. (This is where I cut myself off before going
on a pro-research rant about how necessary it is for the future of
health in every way).Empowerment of women in the world of health is beautifully complex –
there are so many sides and perspectives – which is why I was so happy
to see that you are dedicating time to opening up the conversation and
forming a community around it 🙂I can’t wait to read this (and every) week’s FF post!
Thanks for reading and have a beautiful weekend!
Allison Judge
@allij8 - In high school, when I went on the pill, I started having some anxiety, which I never experienced. My gyno told me to “wait it out” because the pill can take some adjusting. So, I waited three months. All three months, I was so anxious, crying daily one month, and just unhappy. It was SO unlike me. So, I went against my gyno’s wishes and went off the pill for the time being. It was hard knowing I could have fixed things earlier by going off the pill.NOW, I’m trying to get to the root cause of why I have iron deficiency anemia. My gyno (a different one than the other story) had me get a vaginal ultrasound to see if there are any abnormalities resulting in me getting heavy periods. The day I went for my appointment, he was able to squeeze me in with the technician at the same office to get the sonogram, which was great. However, I didn’t hear from him two weeks after getting the test done. I followed up with him to ask about results, and he asked me when and where I got the test done. It made me feel like just another patient, without a story that he cared about. He GOT the appointment for me and had a long conversation with me about my anemia. But, when I followed up, it felt like I was a distant memory. When something is wrong with your body, you just want a doctor that cares! -Tara
- As for women’s health issues, I think it would be great for you to address the importance of getting regular skin checks by the dermatologist for skin cancer. I’m 28 years old and essentially healthy with no major health issues, and was recently diagnosed with two very early stage melanomas. I’ve always had a lot of moles and have been thinking about getting checked for quite some time. I finally went for my first check about 3 months ago, not expecting to find anything, but low and behold it was found. And thank god it was, I was very fortunate to catch it at this early stage. I was lucky enough to have them both removed with surgery, and no further treatment such as chemo or radiation. Melanoma is so dangerous because it spreads very easily the more advanced it becomes. Early detection is everything with this type of cancer. With summer upon us and a lot of time in the sun, I think it’s important for women to be cautious about sun exposure and to get checked! -Allisson
- The truth about my weight gain is as simple as it is complicated, chemical imbalance. Chemical imbalance happens when your stress levels are high, your body acts immediately and releases the stress hormone, cortisol. Cortisol is a steroid hormone produced in the cortex of the adrenal glands, once released it initiates a cascade of physical responses, including increased heart rate and providing your body with a quick jolt of energy. It does this by rapidly increasing the amount of sugar in the bloodstream. Cortisol also aids in the metabolism of fat, protein and carbohydrates, and acts to suppress the immune system. Somehow, my brain is making me fat and sadder!I’ve been 2 years overweight, despite trying eating less quantities of food I was stuck in 143 pounds! That’s a lot of weight for someone of size (4.9”), my knees were hurting; I couldn’t look myself to the mirror anymore, I needed to be healthy and happy no matter how much pounds I weight. Even so, I was miserable, looking comfort and happiness where it wasn’t, food.
Depression is a condition that can be treated. My treatment involves going through psychotherapy and admission of antidepressants. However, exercise and a healthy diet are important as well. I do swim and take my dogs for long walks every week (when I want to, otherwise, If I’m having an emotional crisis I don’t, I stay home). Fortunately, with my psychiatrist guidance I started changing my food choices for healthier choices. For example, I don’t eat bread as much as I used to do, I change the nutella for the chocolate almond butter @wildfriends, I eat more fruits and veggies, quinoa, lentils, chickpeas, fish, etc. Eating clean and right has helped me a lot, I still have to work out lots of things but everything is getting better. You can tell I’ve lost a few pounds, 22 pounds to be exact. I can commit to stay with this weight, I’m comfortable with the woman in my mirror. – @juliagapitz
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