Ginny Silvestro

@ginny-silvestro | contributor
Ginny is a control freak who loves to cook, be creative, fix things, and RUN! She is a certified personal trainer who loves all things health and fitness related. She blogs at www.runs2behappy.com about living with anxiety, PCOS, health, fitness and life as a mom.

What It Feels Like to Live With Polycystic Ovary Syndrome (PCOS)

I often feel the need to speak up and share my feelings regarding my diagnosis of polycystic ovary syndrome (PCOS) because there is not a loud enough voice for all of us who have it. I want you to understand the struggle it can be to be a woman with PCOS. I know listening or reading about a disorder that involves “lady parts” can sometimes be a deterrent for some and they shut off right away. My own reaction to this diagnosis changes from time to time depending on how bad my symptoms become, how my own doctors react to my needs or my ability to control what is going on with my body. I can understand if you don’t get it either. I can see how at times it may seem like I’m whining. I can tell you for sure that I’m not. I’m just frustrated beyond belief. It is not always easy to cope. I need your support at times. I want you to understand how this can affect everything about my being. You may characterize me this way: moody, depressed, obsessive, envious, bitchy, a picky-eater, tense, vain, know-it-all, anxious and overemotional. None of these character traits sound attractive. I can see why it may be a turn-off to be around me if you don’t understand. I prefer to describe myself this way: health-conscious, confused, self-conscious, impatient and fearful, isolated and alone, sad and hopeless, unsettled and judged, frustrated and angry and so very tired. Living with PCOS makes me feel health-conscious. I always felt I was healthy. I used the food pyramid as my guide. I exercised. I never thought that would backfire on me. I can’t eat food like my friends and family choose to do. If I indulge in pasta for the big race or a slice of pizza when I’m out to lunch with my friends, my body tricks itself into thinking it needs more of this type of food to function. It doesn’t burn properly. It makes me feel tired. It can also make me feel sick to my stomach within the hour. I need to eat a certain way to keep my hormones in check and to help my body to function properly. I’m told to exercise a certain way. Too little and I can’t burn fat, too much and my testosterone levels rise. I never thought it would be this hard to keep my health in check… Living with PCOS makes me feel confused. There is so little definitive information out there about how to navigate my way. Very few doctors have a solid plan to help. Information can be conflicting. What may help one symptom may make another flare up. My symptoms may differ extremely from another woman with PCOS. There are a lot of different symptoms that can be attributed to PCOS. There is not one medication or supplement you can take to fix them all. Can I hinder progress while trying to solve another issue? I want to help myself but I’m not sure where to turn for the best knowledge. Living with PCOS makes me self-conscious. Let’s just say it… hirsutism is horrible. Hair is here, there and everywhere. Hair removal is an Olympic event. What is the best method to remove it? How soon will it come back? How expensive is the upkeep? Do I look like a man today? Is my beard showing? I feel stubble and its only 9 a.m. A trip to the beach requires at least an hour of prep time. Shaving happens every day – sometimesmore than once a day. Then we have acne. Not just a random pimple but the cystic OMG-it-hurts-so-bad under the skin acne. It shows up randomly on my face, under my hair, all over my back and sometimes even on my breasts. I try to hide the hair and acne under clothes or make-up. I thought a woman was supposed to look more graceful with age. I never knew I would long almost daily to feel pretty or just want to feel like a woman. Living with PCOS makes me impatient and fearful. I just want answers.  I was told weight gain happens quickly with PCOS. I was also told weight loss can be difficult. I was told to take the weight off to improve my infertility. Now it’s “take it off because your blood pressure is too high.” Too much weight as I age can increase my risks for non-alcohol related fatty liver disease, heart disease, cancer and diabetes.  It’s been two years of hell – doing all I’m told to do to try to take off the weight. The scale isn’t moving. My doctors are mystified but don’t know how to help. My risk is higher for anxiety and depression, too. I’m terrified of what health problems are going to arise in the future. Living with PCOS makes me feel isolated and alone. I’m surrounded by athletes. I am an athlete. I’ve always been an athlete. I’m health-conscious. I eat clean. I exercise. I run races. I lift weights. My outer shell isn’t a reflection of my inner being. I don’t feel good about myself. The extra weight I carry physically holds me back from what I want to achieve. I feel the burden. When I talk to people about my concerns I’m met with advice, not a listening ear. “Just don’t eat so much.” “Watch your portions.” “Have you tried LCHF? Keto?” “Do you follow Macros?” “Eat more protein.” “Cut out dairy.” “Go gluten-free.” “Have you tried Whole 30 yet?” I’ve known I’ve had PCOS for over 20 years. I’m well-read and open-minded about how to help myself. I feel angry when other people think I’m uninformed about my own diagnosis and the process for dealingwith it. Living with PCOS makes me feel sad and hopeless. There is little funding for PCOS research. Not much has been done to understand it. Recognition of this medical disorder in women has been around since at least the 1930s, yet it is not known whether the disorder is due to an endocrine problem or a metabolic problem. Most doctors only treat it as an infertility issue and nothing else. It’s difficult living day to day knowing the medical field is so unsure. As a patient it’s hard to live with the idea there may not be an end in sight for a cure during my lifetime. I’m left on my own to fight my own battles for now. Living with PCOS makes me feel frustrated and angry. Why can’t my body function like it’s supposed to? Why did I fear I was pregnant when I missed a cycle? Why did I have to struggle to get pregnant? Why are my cycles so inconsistent? Why could I lose weight before and get my hormones leveled out but now I can’t? Why am I so tired… like dragging my ass through the mud tired? Why can’t I sleep? Why am I drenched in sweat like I swam through a swimming pool? Why? Why? Why? Why can’t I fix any of it? Living with PCOS makes me feel tired. I’m tired of thinking through every aspect of my life. I don’t want to think about what I have to eat all the time. I don’t want to force myself to exercise just to get by. I want to actually enjoy it. I don’t want to have to explain to every new doctor that I have PCOS and what it does to my body. That’s their job. I don’t want to be subjected to blood test after blood test to monitor my hormone levels, insulin levels, thyroid, etc. My veins are scarred from years of it. I’m tired because my hormone surges at night cause me to wake up hot and sweaty. My anxiety keeps me awake with my mind racing. I’m tired. So tired of it all. At times I feel like I have it all together. I’ve done the research. I’ve found what works best specifically for my own body. I’m learning different methods to cope with many aspects of this diagnosis. I’m confident I’ll survive whatever I put in my path and push through. I’ve learned I need to be my own best advocate. If I don’t feel comfortable or confident in my medical care, no matter how long I’ve been with any particular doctor, it’s time to move on and find someone better. I’ve learned how to listen to my body. I’m very attuned to what it says to me. I’m aware and am learning how to be assertive about my needs concerning my loved ones, friends and medical care. I cannot do this all on my own. I’m trying really hard to focus more on life than on my diagnosis. You can help me in more ways than you know. I need you. I can’t always do this alone. Regardless of what I verbalize, PCOS does affect me daily. It causes me stress, anxiety and sadness which may affect our relationship. My emotions will clearly affect your emotions and reactions toward me. Please know there are days where a listening ear, a hug or an “I understand” can mean more than a word of advice. I need you to be an active listener. Talking or writing about my difficulties with PCOS is healing for me. If I choose to share what is going on out loud it probably means I’m struggling hard. It is sometimes difficult for me to verbalize the intense feelings that are occurring without feeling whiny. Please let me know you are available to listen… but make sure you are fully available. If you are rushing to get to an appointment, dealing with a small child, talking to me while you’re shopping or pushing me off quickly because you have a meeting, it can be very difficult for me to become vulnerable and talk it through. I’ll feel pushed aside and will probably not come to you again for help. Some of the worst things I can hear are “it’s not as bad as you think,” “it will happen in due time” or the standard “it’s not worth the worry.” These statements will all negate my feelings and make them feel invalid. I need you to be supportive. Understand that my body is not your body. Understand that even though I may look OK on the outside, I may physically be in pain. I’ve learned over the years how to hide whatphysically ails me because it gains no sympathy… or I’ve become numb to it. I need you to be sensitive. You may want to lighten the mood because it’s too hard to talk about… or maybe because you’re just too tired of listening. I may even laugh when you crack a joke about what PCOS does to my body but it’s not a joke to me. Sometimes I feel it isn’t worth thefight to cause conflict over your words. It’s not that I don’t have a sense of humor. I’m just very sensitive to this particular topic. I need you to be informed and educated. Advice is always welcome but it won’t be when it’s not based on your knowledge of PCOS. When you make it clear that you aren’t aware of what PCOS is or the intricacies of it, then don’t try to give advice on what I can do to fix it. The snippet of information you saw on five minutes of the morning show may be a starting point for a conversation, but it’s not a sure fix for everyone.  Please don’t be offended when I tell you that a particular thing won’t work for me. I’ve been doing this for way too long. I will always welcome your advice and suggestions. Just be aware that if they are not based on fact, I will become extremely frustrated. Ensure you are well-informed so when others bring up advice for me, you can give educated feedback. What I really ask of you… be a part of my happiness. Be my strength when I can’t be my own. Celebrate my successes – the big ones and little ones. Encourage me – tell me if you are proud, I may need the reminder. Boost my self-esteem; there is not one day when I don’t need it. Laugh with me.  Cry with me. Just love me. This post originally appeared on Finding My Happy. We want to hear your story. Become a Mighty contributor here.

Community Voices

PCOS Took My Dignity And How I Earned It Back

PCOS is the most unfeminine medical disorder that a patient can experience.  It affects your appearance, your energy levels, and the way your body functions.  Early on in life, I experienced debilitating menstrual cycles, thinning hair, and increased weight gain despite constant activity.  I had acanthosis nigricans on my neck, a skin condition where body folds and creases turn dark.  I had no idea what it was so I would just scrub my neck constantly to try to get rid of it, but it didn’t go away.  I always felt dirty when it was there.  Little did I know it was a precursor to this condition.  As I entered my teen years, and increased my activity even more with Varsity sports (six days of constant workouts all year long), my body thinned out and the acanthosis nigricans disappeared.  As I hit college age and the activity slowed again, the weight returned and so did the hair loss.  I’m not sure if anyone noticed, but I certainly did.  It was thinning in the front so much that I could see my scalp as light reflected off of it.

My diagnosis of PCOS came in my second year of college.  It wasn’t explained well.  My doctor at the time threw some birth control at me and sent me on my way.  I didn’t know the extent of this diagnosis until my husband and I prepared to have children.  We tried for five years to have a baby.  After three, we decided to look for help with a doctor.  I endured so many tests where you have to strip from the waist down while medical personal check out all your parts.  I experienced endless pelvic sonograms (basically a long rod is shoved inside you), a hysterosalpingogram (HSG test) where dye is squirted through your fallopian tubes to see if they are blocked, and even had to be hospitalized for a D&C.  When all that was said and done, we also continued with years’ worth of intrauterine insemination (IUI) procedures – you know the “turkey baster” method.  Three years in total with my legs up in the air before I even became pregnant.

I was blessed with three beautiful children, something that not all women with PCOS will experience.  PCOS pregnancies are considered high risk.  Pregnant mothers with PCOS experience high rates of miscarriage, early births, and overweight babies due to increased chances of gestational diabetes.  Mothers are also at higher risk of preeclampsia – high blood pressure, water retention, protein in the urine which if not treated properly puts the patient at risk of organ failure.  I was so very lucky not to experience those things, but what did happen to me occurred after my pregnancies.  I lost so much hair I was balding in some spots.  I had to find ways to cover it up.  I had increased hirsutism (increase in body hair) mostly on my face and chin.  Almost immediately the hormonal shifts post-pregnancy caused cystic acne.  I felt less and less like a female every single day.Obesity was another battle.  With PCOS it’s very easy to put on weight if you have insulin resistance issues, which I do.  On the other hand, it’s also very difficult to lose that weight.  Your body is fighting against you.  So without the right combination of medication, exercise, proper diet to fit well with PCOS, it can be discouraging.  I have suffered from poor body image, frustration, anxiety and depression.   PCOS stole my dignity in every way possible.  I hated so much about myself and my life.  I hated the amount of doctor’s appointments I needed.  I loathed the amount of medications I took on a daily basis.  I was up in arms about my lack of control over my own body despite my own best efforts.

It took some time but I earned all the dignity back that I lost to PCOS.  First, I found a doctor who specialized in PCOS.  That was a huge change.  I felt supported.  I decided to work hand in hand with my doctor.  I researched on my own.  I learned more about PCOS than I had ever known before.  I made sure I had a consistent exercise routine that worked well with PCOS patients, and I stuck to it.  I changed my eating habits based on the workings of a few registered dietitians who also specialize in this area.  I made a promise to myself that I would not let PCOS overtake me.  I was going to fight this sucker with everything I had… and I have for three years.  I became so engulfed in my health and well-being that I am now a personal trainer.  I work hard to help all people, not just patients with PCOS learn to find the best version of themselves through physical activity.  My defining moment came when I became a PCOS advocate not just for myself but for others who were just being diagnosed.  I have now known of my diagnosis for over twenty years.  It took 6 years after my original diagnosis to find any information about this disorder.  Now I work and volunteer my own time to try to help prevent other patients with the emotional and physical pain that I went through for so long.

I will not suffer with PCOS.  I will thrive.  I will fight.  I will win.  Dignity and self-respect are mine to keep.

Community Voices

The Truth About Mental Illness

As I spoke with a friend today, something occurred to

me.  Why is a #MentalHealth diagnosis so

hard to accept?  What is it specifically

about mental illness that nobody wants to talk about or admit?  I’ve had my own reservations about it and I

even find myself to be a bizarre abnormality.

I’ll explain why.

It took me almost 8 months to seek help.  I knew I was falling about.  I felt out of control.  I couldn’t admit to myself that there was something

wrong enough that I may need a little extra assistance from a doctor or

therapist.  The people that knew me best…

my husband, my closest friends, none of them with all their honest, gentle or

forceful words could push me to admit that there was a problem.  Despite all that, I still spoke about it

online.  I blogged about it.  I posted on social media about the hurt and

pain.  Through all that I still couldn’t

see it until I reached a point where I said NO MORE.  I can’t do this.  So I went.

Eight months.  Eight freaking

months of pain.  Why?  I’ll tell you why. The stigma.  The stigma that if you seek help you are

WEAK.  If I spoke in a blog about my

troubles then I felt like I was communicating to those I loved without showing

weakness.  I didn’t want to feel the

hurt.  I didn’t want to feel like I was

giving up.  I was SO VERY WRONG.

Admitting that you need help makes you STRONG.  You may not feel strong when it happens but

maybe it’s because you aren’t in a place where you can.  Being strong enough to say help me means that

you hand over control to someone else.

You are showing you are vulnerable.

You are showing your pain.  Being

able to share that vulnerability and pain will build you into an unbreakable

vessel.  You just have to get there.

So I went through that entire process. It took me almost a

full year of broken up visits to a therapist.

I learned things about myself that became AHA moments.  I learned how to cope. I learned how to

feel.  I learned how to push my anger

aside and look deeper.  After that year I

felt invincible.  I felt back to normal

armed with these amazing tools that I know will get me through anything…

So why after going through all that and feeling so strong,

powerful, INVICIBLE! did I struggle to fill out a form yesterday at my

surgeon’s office?

Medical history:

#Cancer?-no,

#Diabetes?- no

mental illness?

Whoaa!!! I just stared at it.  Did I qualify for that?  Do I check it?  I don’t think I can check it.  I spent about 10 minutes filling out the rest

of the form before I decided to go back to that section.  I thought it over, took a deep breath and

finally accepted that it was a yes.  Then

after it all, I worried about how that would impact the rest of my visit or

future visits with this doctor.  Was it

something that I had to worry about for my future or was I past this? After two

years it hasn’t been easy to accept that I fall under that category but you

know what?  I’m proud I checked that

box.  No one wants to have mental illness

but admitting you were there and recognizing it without fear, that is true

power over your demons.

Where am I going with all this?  mental illness isn’t a game.  If you have a friend who is going through

anxiety, #Depression or anything else, you can’t just tell them to stop being a

downer and cheer up.  The best you can do

is to lend a listening ear.  Check

in.  Make sure they know they are

loved.  Don’t tell someone they are being

dramatic or that they are looking for attention.  No one wants to experience anxiety or

depression.  Admitting you have it is

step one.  Treating it is a whole other

matter. If a friend or loved one is suffering from that or any other illness,

so don’t be afraid to talk to them.

Sometimes it’s the best and only thing you can do to show support.

Community Voices

WHEN THE ROCK BECAME A PEBBLE

In every relationship there is always someone who is “the Rock”. The one that anchors everyone when things go awry.  More often than not this person handles the hard stuff and appears to do it with ease.  They are people pleasers. They can hold it together and somehow make everyone feel happy and comfortable.Have you ever seen a rock break? It rarely breaks down the middle. It starts to crack around the edges. Little pieces here. Little pieces there. They just crumble off. To the outside eye it’s a non-event, but watch closer and those little cracks start to affect the infrastructure of the rock. Eventually it cracks and falls apart. The same can happen when you are the Rock of the family and just can’t handle the pressure of it anymore. The fact of the matter is life isn’t perfect is hard.#Anxiety and undue pressure can break down the rock of the family, too. Not everyone realizes that the Rock needs support, too. They look so strong and solid. Everyone turns to them. They go to the Rock for answers. They see the Rock made everything better. What they don’t see is the critical thinking, emotions and pain that goes along with being the Rock. People can crumble just as a rock does. Eat away at it and a rock erodes. Rely on them too much and they disintegrate.I was the Rock. I held that spot solidly for almost 12 years. I ran the household. I handled the pain. I fixed the hurt. I wiped the tears. I went above and beyond to made sure somehow everyone was happy… everyone except myself, but no one knew it. I constantly put my feelings aside to please everyone else. I gave up things I wanted without them ever knowing because I felt I was doing the right thing. I convinced myself more than anyone else that I had to be selfless. I was wrong. Oh, was I wrong. Do you know what happens when you do that? You internalize your feelings. After so many years of internalizing it all, I was BROKEN.Broken can come across in many ways: tears, anxiety, panic attacks, anger, pain, #Depression … all things that feel impossible to deal with when you are used to internalizing your feelings. How do you ease the pain of it all? You need to learn express yourself. Yes, I actually had to learn HOW TO TALK ABOUT ME. That was and still is hard to do. I have to learn to be vulnerable. I have to trust that I’ll still be loved. I have to learn to give up all control and trust that I can feel safe expressing myself even when I’ve convinced myself otherwise. You want to know how to really be a Rock? Trust in yourself. Believe you deserve happiness. Learn and grow. When you put pressure on a rock, it doesn’t have to become a pebble. It can become a diamond.

What It Feels Like to Live With Polycystic Ovary Syndrome (PCOS)

I often feel the need to speak up and share my feelings regarding my diagnosis of polycystic ovary syndrome (PCOS) because there is not a loud enough voice for all of us who have it. I want you to understand the struggle it can be to be a woman with PCOS. I know listening or reading about a disorder that involves “lady parts” can sometimes be a deterrent for some and they shut off right away. My own reaction to this diagnosis changes from time to time depending on how bad my symptoms become, how my own doctors react to my needs or my ability to control what is going on with my body. I can understand if you don’t get it either. I can see how at times it may seem like I’m whining. I can tell you for sure that I’m not. I’m just frustrated beyond belief. It is not always easy to cope. I need your support at times. I want you to understand how this can affect everything about my being. You may characterize me this way: moody, depressed, obsessive, envious, bitchy, a picky-eater, tense, vain, know-it-all, anxious and overemotional. None of these character traits sound attractive. I can see why it may be a turn-off to be around me if you don’t understand. I prefer to describe myself this way: health-conscious, confused, self-conscious, impatient and fearful, isolated and alone, sad and hopeless, unsettled and judged, frustrated and angry and so very tired. Living with PCOS makes me feel health-conscious. I always felt I was healthy. I used the food pyramid as my guide. I exercised. I never thought that would backfire on me. I can’t eat food like my friends and family choose to do. If I indulge in pasta for the big race or a slice of pizza when I’m out to lunch with my friends, my body tricks itself into thinking it needs more of this type of food to function. It doesn’t burn properly. It makes me feel tired. It can also make me feel sick to my stomach within the hour. I need to eat a certain way to keep my hormones in check and to help my body to function properly. I’m told to exercise a certain way. Too little and I can’t burn fat, too much and my testosterone levels rise. I never thought it would be this hard to keep my health in check… Living with PCOS makes me feel confused. There is so little definitive information out there about how to navigate my way. Very few doctors have a solid plan to help. Information can be conflicting. What may help one symptom may make another flare up. My symptoms may differ extremely from another woman with PCOS. There are a lot of different symptoms that can be attributed to PCOS. There is not one medication or supplement you can take to fix them all. Can I hinder progress while trying to solve another issue? I want to help myself but I’m not sure where to turn for the best knowledge. Living with PCOS makes me self-conscious. Let’s just say it… hirsutism is horrible. Hair is here, there and everywhere. Hair removal is an Olympic event. What is the best method to remove it? How soon will it come back? How expensive is the upkeep? Do I look like a man today? Is my beard showing? I feel stubble and its only 9 a.m. A trip to the beach requires at least an hour of prep time. Shaving happens every day – sometimesmore than once a day. Then we have acne. Not just a random pimple but the cystic OMG-it-hurts-so-bad under the skin acne. It shows up randomly on my face, under my hair, all over my back and sometimes even on my breasts. I try to hide the hair and acne under clothes or make-up. I thought a woman was supposed to look more graceful with age. I never knew I would long almost daily to feel pretty or just want to feel like a woman. Living with PCOS makes me impatient and fearful. I just want answers.  I was told weight gain happens quickly with PCOS. I was also told weight loss can be difficult. I was told to take the weight off to improve my infertility. Now it’s “take it off because your blood pressure is too high.” Too much weight as I age can increase my risks for non-alcohol related fatty liver disease, heart disease, cancer and diabetes.  It’s been two years of hell – doing all I’m told to do to try to take off the weight. The scale isn’t moving. My doctors are mystified but don’t know how to help. My risk is higher for anxiety and depression, too. I’m terrified of what health problems are going to arise in the future. Living with PCOS makes me feel isolated and alone. I’m surrounded by athletes. I am an athlete. I’ve always been an athlete. I’m health-conscious. I eat clean. I exercise. I run races. I lift weights. My outer shell isn’t a reflection of my inner being. I don’t feel good about myself. The extra weight I carry physically holds me back from what I want to achieve. I feel the burden. When I talk to people about my concerns I’m met with advice, not a listening ear. “Just don’t eat so much.” “Watch your portions.” “Have you tried LCHF? Keto?” “Do you follow Macros?” “Eat more protein.” “Cut out dairy.” “Go gluten-free.” “Have you tried Whole 30 yet?” I’ve known I’ve had PCOS for over 20 years. I’m well-read and open-minded about how to help myself. I feel angry when other people think I’m uninformed about my own diagnosis and the process for dealingwith it. Living with PCOS makes me feel sad and hopeless. There is little funding for PCOS research. Not much has been done to understand it. Recognition of this medical disorder in women has been around since at least the 1930s, yet it is not known whether the disorder is due to an endocrine problem or a metabolic problem. Most doctors only treat it as an infertility issue and nothing else. It’s difficult living day to day knowing the medical field is so unsure. As a patient it’s hard to live with the idea there may not be an end in sight for a cure during my lifetime. I’m left on my own to fight my own battles for now. Living with PCOS makes me feel frustrated and angry. Why can’t my body function like it’s supposed to? Why did I fear I was pregnant when I missed a cycle? Why did I have to struggle to get pregnant? Why are my cycles so inconsistent? Why could I lose weight before and get my hormones leveled out but now I can’t? Why am I so tired… like dragging my ass through the mud tired? Why can’t I sleep? Why am I drenched in sweat like I swam through a swimming pool? Why? Why? Why? Why can’t I fix any of it? Living with PCOS makes me feel tired. I’m tired of thinking through every aspect of my life. I don’t want to think about what I have to eat all the time. I don’t want to force myself to exercise just to get by. I want to actually enjoy it. I don’t want to have to explain to every new doctor that I have PCOS and what it does to my body. That’s their job. I don’t want to be subjected to blood test after blood test to monitor my hormone levels, insulin levels, thyroid, etc. My veins are scarred from years of it. I’m tired because my hormone surges at night cause me to wake up hot and sweaty. My anxiety keeps me awake with my mind racing. I’m tired. So tired of it all. At times I feel like I have it all together. I’ve done the research. I’ve found what works best specifically for my own body. I’m learning different methods to cope with many aspects of this diagnosis. I’m confident I’ll survive whatever I put in my path and push through. I’ve learned I need to be my own best advocate. If I don’t feel comfortable or confident in my medical care, no matter how long I’ve been with any particular doctor, it’s time to move on and find someone better. I’ve learned how to listen to my body. I’m very attuned to what it says to me. I’m aware and am learning how to be assertive about my needs concerning my loved ones, friends and medical care. I cannot do this all on my own. I’m trying really hard to focus more on life than on my diagnosis. You can help me in more ways than you know. I need you. I can’t always do this alone. Regardless of what I verbalize, PCOS does affect me daily. It causes me stress, anxiety and sadness which may affect our relationship. My emotions will clearly affect your emotions and reactions toward me. Please know there are days where a listening ear, a hug or an “I understand” can mean more than a word of advice. I need you to be an active listener. Talking or writing about my difficulties with PCOS is healing for me. If I choose to share what is going on out loud it probably means I’m struggling hard. It is sometimes difficult for me to verbalize the intense feelings that are occurring without feeling whiny. Please let me know you are available to listen… but make sure you are fully available. If you are rushing to get to an appointment, dealing with a small child, talking to me while you’re shopping or pushing me off quickly because you have a meeting, it can be very difficult for me to become vulnerable and talk it through. I’ll feel pushed aside and will probably not come to you again for help. Some of the worst things I can hear are “it’s not as bad as you think,” “it will happen in due time” or the standard “it’s not worth the worry.” These statements will all negate my feelings and make them feel invalid. I need you to be supportive. Understand that my body is not your body. Understand that even though I may look OK on the outside, I may physically be in pain. I’ve learned over the years how to hide whatphysically ails me because it gains no sympathy… or I’ve become numb to it. I need you to be sensitive. You may want to lighten the mood because it’s too hard to talk about… or maybe because you’re just too tired of listening. I may even laugh when you crack a joke about what PCOS does to my body but it’s not a joke to me. Sometimes I feel it isn’t worth thefight to cause conflict over your words. It’s not that I don’t have a sense of humor. I’m just very sensitive to this particular topic. I need you to be informed and educated. Advice is always welcome but it won’t be when it’s not based on your knowledge of PCOS. When you make it clear that you aren’t aware of what PCOS is or the intricacies of it, then don’t try to give advice on what I can do to fix it. The snippet of information you saw on five minutes of the morning show may be a starting point for a conversation, but it’s not a sure fix for everyone.  Please don’t be offended when I tell you that a particular thing won’t work for me. I’ve been doing this for way too long. I will always welcome your advice and suggestions. Just be aware that if they are not based on fact, I will become extremely frustrated. Ensure you are well-informed so when others bring up advice for me, you can give educated feedback. What I really ask of you… be a part of my happiness. Be my strength when I can’t be my own. Celebrate my successes – the big ones and little ones. Encourage me – tell me if you are proud, I may need the reminder. Boost my self-esteem; there is not one day when I don’t need it. Laugh with me.  Cry with me. Just love me. This post originally appeared on Finding My Happy. We want to hear your story. Become a Mighty contributor here.

What It Feels Like to Live With Polycystic Ovary Syndrome (PCOS)

I often feel the need to speak up and share my feelings regarding my diagnosis of polycystic ovary syndrome (PCOS) because there is not a loud enough voice for all of us who have it. I want you to understand the struggle it can be to be a woman with PCOS. I know listening or reading about a disorder that involves “lady parts” can sometimes be a deterrent for some and they shut off right away. My own reaction to this diagnosis changes from time to time depending on how bad my symptoms become, how my own doctors react to my needs or my ability to control what is going on with my body. I can understand if you don’t get it either. I can see how at times it may seem like I’m whining. I can tell you for sure that I’m not. I’m just frustrated beyond belief. It is not always easy to cope. I need your support at times. I want you to understand how this can affect everything about my being. You may characterize me this way: moody, depressed, obsessive, envious, bitchy, a picky-eater, tense, vain, know-it-all, anxious and overemotional. None of these character traits sound attractive. I can see why it may be a turn-off to be around me if you don’t understand. I prefer to describe myself this way: health-conscious, confused, self-conscious, impatient and fearful, isolated and alone, sad and hopeless, unsettled and judged, frustrated and angry and so very tired. Living with PCOS makes me feel health-conscious. I always felt I was healthy. I used the food pyramid as my guide. I exercised. I never thought that would backfire on me. I can’t eat food like my friends and family choose to do. If I indulge in pasta for the big race or a slice of pizza when I’m out to lunch with my friends, my body tricks itself into thinking it needs more of this type of food to function. It doesn’t burn properly. It makes me feel tired. It can also make me feel sick to my stomach within the hour. I need to eat a certain way to keep my hormones in check and to help my body to function properly. I’m told to exercise a certain way. Too little and I can’t burn fat, too much and my testosterone levels rise. I never thought it would be this hard to keep my health in check… Living with PCOS makes me feel confused. There is so little definitive information out there about how to navigate my way. Very few doctors have a solid plan to help. Information can be conflicting. What may help one symptom may make another flare up. My symptoms may differ extremely from another woman with PCOS. There are a lot of different symptoms that can be attributed to PCOS. There is not one medication or supplement you can take to fix them all. Can I hinder progress while trying to solve another issue? I want to help myself but I’m not sure where to turn for the best knowledge. Living with PCOS makes me self-conscious. Let’s just say it… hirsutism is horrible. Hair is here, there and everywhere. Hair removal is an Olympic event. What is the best method to remove it? How soon will it come back? How expensive is the upkeep? Do I look like a man today? Is my beard showing? I feel stubble and its only 9 a.m. A trip to the beach requires at least an hour of prep time. Shaving happens every day – sometimesmore than once a day. Then we have acne. Not just a random pimple but the cystic OMG-it-hurts-so-bad under the skin acne. It shows up randomly on my face, under my hair, all over my back and sometimes even on my breasts. I try to hide the hair and acne under clothes or make-up. I thought a woman was supposed to look more graceful with age. I never knew I would long almost daily to feel pretty or just want to feel like a woman. Living with PCOS makes me impatient and fearful. I just want answers.  I was told weight gain happens quickly with PCOS. I was also told weight loss can be difficult. I was told to take the weight off to improve my infertility. Now it’s “take it off because your blood pressure is too high.” Too much weight as I age can increase my risks for non-alcohol related fatty liver disease, heart disease, cancer and diabetes.  It’s been two years of hell – doing all I’m told to do to try to take off the weight. The scale isn’t moving. My doctors are mystified but don’t know how to help. My risk is higher for anxiety and depression, too. I’m terrified of what health problems are going to arise in the future. Living with PCOS makes me feel isolated and alone. I’m surrounded by athletes. I am an athlete. I’ve always been an athlete. I’m health-conscious. I eat clean. I exercise. I run races. I lift weights. My outer shell isn’t a reflection of my inner being. I don’t feel good about myself. The extra weight I carry physically holds me back from what I want to achieve. I feel the burden. When I talk to people about my concerns I’m met with advice, not a listening ear. “Just don’t eat so much.” “Watch your portions.” “Have you tried LCHF? Keto?” “Do you follow Macros?” “Eat more protein.” “Cut out dairy.” “Go gluten-free.” “Have you tried Whole 30 yet?” I’ve known I’ve had PCOS for over 20 years. I’m well-read and open-minded about how to help myself. I feel angry when other people think I’m uninformed about my own diagnosis and the process for dealingwith it. Living with PCOS makes me feel sad and hopeless. There is little funding for PCOS research. Not much has been done to understand it. Recognition of this medical disorder in women has been around since at least the 1930s, yet it is not known whether the disorder is due to an endocrine problem or a metabolic problem. Most doctors only treat it as an infertility issue and nothing else. It’s difficult living day to day knowing the medical field is so unsure. As a patient it’s hard to live with the idea there may not be an end in sight for a cure during my lifetime. I’m left on my own to fight my own battles for now. Living with PCOS makes me feel frustrated and angry. Why can’t my body function like it’s supposed to? Why did I fear I was pregnant when I missed a cycle? Why did I have to struggle to get pregnant? Why are my cycles so inconsistent? Why could I lose weight before and get my hormones leveled out but now I can’t? Why am I so tired… like dragging my ass through the mud tired? Why can’t I sleep? Why am I drenched in sweat like I swam through a swimming pool? Why? Why? Why? Why can’t I fix any of it? Living with PCOS makes me feel tired. I’m tired of thinking through every aspect of my life. I don’t want to think about what I have to eat all the time. I don’t want to force myself to exercise just to get by. I want to actually enjoy it. I don’t want to have to explain to every new doctor that I have PCOS and what it does to my body. That’s their job. I don’t want to be subjected to blood test after blood test to monitor my hormone levels, insulin levels, thyroid, etc. My veins are scarred from years of it. I’m tired because my hormone surges at night cause me to wake up hot and sweaty. My anxiety keeps me awake with my mind racing. I’m tired. So tired of it all. At times I feel like I have it all together. I’ve done the research. I’ve found what works best specifically for my own body. I’m learning different methods to cope with many aspects of this diagnosis. I’m confident I’ll survive whatever I put in my path and push through. I’ve learned I need to be my own best advocate. If I don’t feel comfortable or confident in my medical care, no matter how long I’ve been with any particular doctor, it’s time to move on and find someone better. I’ve learned how to listen to my body. I’m very attuned to what it says to me. I’m aware and am learning how to be assertive about my needs concerning my loved ones, friends and medical care. I cannot do this all on my own. I’m trying really hard to focus more on life than on my diagnosis. You can help me in more ways than you know. I need you. I can’t always do this alone. Regardless of what I verbalize, PCOS does affect me daily. It causes me stress, anxiety and sadness which may affect our relationship. My emotions will clearly affect your emotions and reactions toward me. Please know there are days where a listening ear, a hug or an “I understand” can mean more than a word of advice. I need you to be an active listener. Talking or writing about my difficulties with PCOS is healing for me. If I choose to share what is going on out loud it probably means I’m struggling hard. It is sometimes difficult for me to verbalize the intense feelings that are occurring without feeling whiny. Please let me know you are available to listen… but make sure you are fully available. If you are rushing to get to an appointment, dealing with a small child, talking to me while you’re shopping or pushing me off quickly because you have a meeting, it can be very difficult for me to become vulnerable and talk it through. I’ll feel pushed aside and will probably not come to you again for help. Some of the worst things I can hear are “it’s not as bad as you think,” “it will happen in due time” or the standard “it’s not worth the worry.” These statements will all negate my feelings and make them feel invalid. I need you to be supportive. Understand that my body is not your body. Understand that even though I may look OK on the outside, I may physically be in pain. I’ve learned over the years how to hide whatphysically ails me because it gains no sympathy… or I’ve become numb to it. I need you to be sensitive. You may want to lighten the mood because it’s too hard to talk about… or maybe because you’re just too tired of listening. I may even laugh when you crack a joke about what PCOS does to my body but it’s not a joke to me. Sometimes I feel it isn’t worth thefight to cause conflict over your words. It’s not that I don’t have a sense of humor. I’m just very sensitive to this particular topic. I need you to be informed and educated. Advice is always welcome but it won’t be when it’s not based on your knowledge of PCOS. When you make it clear that you aren’t aware of what PCOS is or the intricacies of it, then don’t try to give advice on what I can do to fix it. The snippet of information you saw on five minutes of the morning show may be a starting point for a conversation, but it’s not a sure fix for everyone.  Please don’t be offended when I tell you that a particular thing won’t work for me. I’ve been doing this for way too long. I will always welcome your advice and suggestions. Just be aware that if they are not based on fact, I will become extremely frustrated. Ensure you are well-informed so when others bring up advice for me, you can give educated feedback. What I really ask of you… be a part of my happiness. Be my strength when I can’t be my own. Celebrate my successes – the big ones and little ones. Encourage me – tell me if you are proud, I may need the reminder. Boost my self-esteem; there is not one day when I don’t need it. Laugh with me.  Cry with me. Just love me. This post originally appeared on Finding My Happy. We want to hear your story. Become a Mighty contributor here.

7 Things You Need to Know About Life With Polycystic Ovary Syndrome

At 39, I’ve had more than 21 years of experience with the effects of polycystic ovary syndrome (PCOS) on my body. My experience may differ slightly with others who also have PCOS because it affects people differently. This is my daily routine and it has become my norm. I don’t even think twice about it because it’s how I live. How does it differ with that of someone who doesn’t have PCOS? Let’s see if you can see the differences. 1. Brain Fog I wake up every morning and no matter how well I slept, I feel foggy. So foggy that I need to ask my children to repeat themselves several times, because even when I look at them and concentrate, I can’t always process what they are saying. It takes my body almost four hours from the time I wake to get my brain to properly process any conversation I have. 2. Caffeine Yes, that brain fog has me reaching for a cup of coffee from the second I wake up. Now I have to decide whether caffeine is the way to go. Why? With PCOS, caffeine can be either a negative or a positive. Pro: Studies show that coffee may help prevent diabetes and boost memory. That’s a bonus, since women with PCOS are at higher risk for diabetes… and the brain fog issue is also pulling me toward that delicious cup of coffee. I can smell it as I talk to you about it. Con: Coffee is a diuretic. It can deplete vitamins such as magnesium, iron, zinc and B vitamins. All of which women with PCOS can be deficient in. My own brain argues that I take daily supplements, so maybe this isn’t an issues for me. True or not, it pushes me towards that cup. Con: Caffeine can increase anxiety and panic issues. Definitely a no-no for me since I’ve had anxiety issues in the past. Con: Coffee can have an effect on estrogen and testosterone hormones. Will drinking this cup actually increase the amount of extra hair I already have on my chin? So many things to consider when you just want to reach for a cup of coffee with your breakfast. Why do I have to think so much in the morning? 3. Food My kids… they want pancakes. Oh. Em. Gee. I haven’t had real pancakes in such a long time… with syrup! Nope, not a consideration. Why? Well here’s why things can go south. If I choose to eat the same pancakes that I make my children, I deal with the after effects. It causes a spike in my blood sugar (and no I’m not diabetic), which then leads to what I refer to as my carb crash. What’s that mean? I literally crash. I’m exhausted. I have no energy. I feel lethargic and at times if I have too much, I get a massive migraine. So what’s my option? Well, I can make a batch of protein pancakes or I can choose to make another meal combining both protein and simple carbs. So, eggs paired with veggies work. Greek yogurt with blueberries work. Are there options? Plenty, but it’s not as simple as grabbing a bowl of cereal to start your day. Every meal takes careful thought and consideration. Feed my body to function or carb crash? 4. Hair… too much or too little. Hair. It’s here, there and everywhere… or completely gone. I have a kit in the bathroom. It consists of tweezers, razors, shaving cream, waxing strips, hair removal cream, moisturizer, and special shampoo. I have hirsutism as a symptom of PCOS. That means I grow hair in places that women do not want it. My legs and underarms are hairier than most women and I have had whiskers on my chin since I was 18. As I have grown older, the hair on my chin has increased and the random four to five hairs that I started with now have buddies… about 40 of them. They’re starting a sorority on my face. Every morning… and I do mean every morning, I have to decide what route I take with the stubble. Are they long enough to pluck? Will today be a razor day so that I ensure I get all of them? Will I be dealing with stubble by the end of the day, or the next morning, just like a man? I can try the waxing strips, but some of those whiskies are just stubborn and don’t want to get yanked out. Hair removal cream? That stuff just smells so bad and my face is sensitive. I could use it, but then I may burn the skin if I leave it too long. It really won’t last much longer than shaving, so what the heck do I decide on? How can I have so much hair and so little at the same time? I have an influx on friends on my chin, but they may be just removing themselves from the party on my head. Thinning hair, bald spots… that’s just lovely. It’s what every girl wants to deal with. My hair has always been thin, but as I age, it’s getting thinner. I don’t know if everyone notices, but I certainly do. I know what I was used to and what I have now. I know that I have to position my hair clips certain ways so I don’t look bald. I started using a special collagen and biotin shampoo last year along with an oral biotin supplement. It’s helped as I have new baby hairs popping up, but it’s not a complete solution. I’ve learned not to wash my hair everyday so that I can preserve what I have, so dry shampoo has become my new best friend. 5. Exercise When we have PCOS we are told to exercise to lose weight: “Exercise daily.” “Don’t exercise too much because it may raise your testosterone levels.” “By the way, losing weight may be hard!” “Losing weight may not help.” “When you exercise, weight lifting and HIIT activities are best.” “Don’t do too much but make sure you do enough.” … what? Can we find anything that’s more contradicting? The laws of the weight loss world are eat right, exercise, burn more calories than you consume. Results ensue. I had someone write to me the other day, “You know, the reason that you aren’t losing weight and you’re stuck at a stagnant weight is because you need to increase your activity to stop the metabolic process from stalling.” In theory, yes, I agree. It’s what I was taught, too. But guess what? The rules don’t always apply with PCOS. I’m a prime example. So are several other very, very frustrated women I know. Before you say, “Well, you must not be doing it right then,” I implore you to just stop. Stop and listen hard. We are doing it right. We are doing everything right. How do I know this? Well, besides my extensive background in physical education and health, I work with a personal trainer. I’ve worked with nutrition specialists. I’ve worked with doctors. My friends have done the same. We are all super motivated. We are all extremely frustrated. We do what we are told and we see no results. Our bodies just rebel. We are not looking to be supermodels. We have a very different motivation that most. We want to live. We want to live without pain, without being tired, without looking like a man, without the struggle to have babies. So every day we have to decide… is 20-30 minutes of exercise really enough? When your brain and the world around you tells you to do more, but your doctors tell you to keep it at this amount because it can cause problems elsewhere… what would your decision be? 6. Acne Where did that pimple come from? I’m 39. I’m not supposed to have acne. It’s not just a regular old pimple either. It’s that cystic acne… and its on my back… or my stomach… or my boob! I’m breaking out behind my ear. What the hell? In fact it’s getting more common as I age and it’s so very frustrating. Open back dress? Would love to, but no. I have scars from the amount of acne I’ve had. I don’t feel comfortable showing it off. 7. What alters my hormones? Everything from food to beauty products have to be taken into consideration. I eat organic when possible. Why? Pesticides on fruit and vegetables may contain man-made chemicals that can affect my endocrine glands and even try to mimic my hormones. Animals that are injected with growth hormones can get absorbed into our body as we eat them. So, it may cost me more to buy my groceries but it costs less than the medical costs that incur when I have to worry about treatment options. There are endocrine disrupting chemicals in everyday products from shampoo, to deodorant, to makeup and even in our toothpaste! Yes, I can do harm to myself by brushing my teeth or washing my hair with the “wrong” products. I’m not saying that life without PCOS isn’t hard, but it’s a general concern of my everyday life as the effects of PCOS have been so hard to control. The symptoms are unpredictable. They show at inopportune times. What used to work, no longer does. How do you find a solution when the medical community can’t seem to find one? My answer? I advocate for myself and for others. That’s the way I will spend the rest of my life. Have you just been diagnosed with PCOS? You are not alone. PCOS affects one in 10 women. Fifty percent of us are going undiagnosed and feeling alone. Be your own best advocate. Look to the PCOS community for solid help. It’s there. It’s available to you for free. Support one another. Follow this journey on Finding My Happy. We want to hear your story. Become a Mighty contributor here .