This blog deals with my fight with PCOS

5 Stages of Grief

5 Stages of Grief 250x300

 

 

I believe that as women living with PCOS, we go through the five stages of grief.

 

DENIAL

The first part is denial. I know that I did this, so I am going to use myself as an example. I tried to deny that anything was wrong:

  • “Maybe the doctor didn’t even know what she was talking about.”
  • “There couldn’t possibly be anything wrong with me, not when I wanted a baby so much.”
  • “I ignored it and tried to plan it all out. If I just got the days in line then it would all come together.”

It wasn’t happening though. Month after month, period after period, heart break after heart break. It was getting harder to ignore. There was something wrong with me and I couldn’t deny it anymore, so I slid into anger. How was any of this fair? There were girls out there that didn’t even want kids and they were popping them out left and right. Girls who shouldn’t be having kids were doing it, so why couldn’t I?

 

ANGER

A friend, someone who I love and respect, decided with her husband that they wanted another child. They already have two children. So she got off her birth control and literally a couple of months later they were pregnant. Oh, I tried SO hard not be jealous, hurt and angry at her. It wasn’t her fault. It was my body that was betraying me. I couldn’t help it. I was just so angry all the time, at everyone. I couldn’t even look at baby pictures without getting mad. If someone started talking about babies or kids I got up and left, wanted no part of it.

 

BARGAINING

When anger stopped working, I made my way to bargaining. I begged God that I would do anything to have a kid. Whatever He wanted I would give Him. I don’t have the best relationship with God, but I was willing to walk through fire, if He asked me to. Almost every day I begged, pleaded and tried to bargain with the man upstairs. It was a desperate act on my part, I felt like a failure and I thought that having a baby would fix it all. That I would finally be worth something.

 

DEPRESSION

Now that I was finding that bargaining wasn’t working, depression came next. I would lay in bed crying. What was I worth now? Everyone says that it’s a wife’s duty to give kids. If you don’t have a great job or something equally as worthy, then you should have kids. Wait a year to give husband and wife a chance to get to know each other, then start popping babies. Well I didn’t have a great job and now I couldn’t even give my husband a child. I kept imagining my future baby and they were perfect. I know deep in my soul my husband would make the best father, but I won’t know because I can’t get pregnant to be able to provide the desperately desired child. I tried talking to him about adopting but I could tell he wasn’t sold on the idea, I knew deep down he wanted a baby that was his, that we made together and was of our flesh and blood. I couldn’t offer that. What good was I then? I started to withdraw from him. I felt worthless and a failure as a wife and then as a friend. I felt that I literally brought nothing to our relationship.

 

ACCEPTANCE

I can’t say that I’m completely over my depression but I’m finding that it’s starting to fade. I’m learning that there is more for me than just making babies and feeling sorry for myself. I needed a purpose, something I wanted and could accomplish. I’m now working towards joining the National Guard. I have a goal and steps to take towards it. I’ve talked to my husband and told him I want to start fostering kids. We have the space in our home and in our hearts. I want to be able to make a difference in the world, even if it’s small.

At first, I didn’t think he would be on board, but he told me that once I became established in my career choice, we could do it.

So now I don’t have just a physical goal, but an emotional one to. I now have a purpose to get to and it’s helping. I am learning very slowly that I am finally coming to acceptance. That doesn’t mean I’m giving up, but I am now no longer letting it control me, to shape me or change me from the person I was or want to be. I’m not letting it take me away from my husband. I didn’t think he would understand and I also didn’t want to upset him, but he’s my best friend and I have found that I don’t have to do this alone; and I strongly believe that neither do you.

 

MORAL OF THE STORY?

Don’t let PCOS control you.

    • Don’t give up on your dreams or wants.
    • Take control of your own life. Find something to work towards.
    • Most importantly, find someone who cares and will stand by you and with you.

Understand and go through the five stages and know that it will eventually end. There is a light at the end of the tunnel. No pain lasts forever, though it may feel like it. I promise you that it doesn’t, unless you let it.

I can do this. You can do this. We can do this. You aren’t alone, so don’t try to do it all alone.

 

 

 

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The Need for Support

SupportI have gone on before about the side effects of PCOS, but I have failed to go over the most important part, at least in my own opinion. What is it? Support!

Most times women will go through this alone, but my question to you is, why? There is nothing to be ashamed of, none of this is your fault. There is no shame in any of this. It only hurts us if we keep it to ourselves. Everything we feel is normal. The jealousy, the depression, envy and anger back to depression. I know it all sucks, but it’s as normal as we can be. “Normal” is kind of the wrong word for what we have – PCOS. It is to be expected. Not everyone is the same, so there could be people out there who don’t feel half of these symptoms (I’m jealous!). But then there are the ones who feel all that and more.

My point is that there is someone out there for you, someone who cares; husband, wife (hey I don’t judge), sister, mother, father or in-laws (if you’re blessed with ones you get along with) and even friends. Someone you can talk to, whether they understand or not.

I used to talk to mom about how upset I was about not being able to get pregnant, how I was sick of seeing friends and friends of friends popping out babies left and right. I figured my mom would be my sympathetic ear. At first, she didn’t understand and almost seemed frustrated with me.  Everyone’s telling me not to think about it, it’ll happen when it happens. I get that when someone talks about the same thing over and over you just want them to stop. I do really get it, but I was going through the five stages of grief and didn’t know where to turn. So, I stopped talking to anyone about it, figuring they were all tired of hearing it. I didn’t even talk to my husband, who is supposed to be my best friend. It was the hardest thing I’ve ever done, because I felt alone. There is no worse feeling than feeling alone, when all you want is someone to hug you and tell you it will all be ok.

A little while later my mom came back to me and told me that she didn’t realize how much this all meant to me and that she wanted me to talk to her now. The one thing she said that resonated with me was “if you can’t talk to your mom about this, then who can you talk to.”

Talking isn’t easy. It’s hard. It’s even harder when it’s something this important and life changing. This is what it means to be vulnerable and it isn’t a good feeling. It helps though. Pain doesn’t last forever. The people around you might not understand at first, they might get frustrated with you or ignore you, but don’t stop. Keep trying. Give them facts, show them the research you’ve done and let them know that this isn’t something just made up but something real and life changing.

Talking helps. It hurts at first, but then it’s liberating. You will feel lighter. You might even feel better when you give them facts, because you’ve just educated someone on something they’ve never heard of before. They can then take that information and give it to others, spreading the knowledge and letting this challenge come to the light. We can’t be silent, people need to know what is happening and that it’s not something we should be ashamed of. We need to have people around us that are just there. I find that I don’t always need to talk, that sometimes it’s just nice having someone be there, watching tv or playing video games. Just knowing they know what’s going on and they are there if you ever need them. Friends and family aren’t just there for the good times but for the bad ones to. Even the strongest of people need someone every now and then.

Don’t be stubborn. Telling someone you need help shows them you’re stronger than they thought. So, find a friend and/or a family member (blood related or not) and let them in. Let them help and don’t do this alone.

 

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Your emotions are OK!

images2X5ABBF8I stopped writing here because I didn't know what else I could tell you. Just going on about my feelings felt almost wrong because I'm sure that you are feeling the same thing and don't need to read about someone else’s feelings about it as well. Also, not going to lie, it was starting to suck bringing up my emotions about it, so I shied away from it. But I want you to know that you aren't alone in all this. That there are people out there you wouldn't believe suffer from this just like you are. Just like I am.

I've been going to school for Criminal Justice. This semester I am taking a class in psychology and we have been doing research into the psychological effects of different things such as Alzheimer’s, micro-expressions and such. That got me thinking that there have to be psychological effects from PCOS as well, so I did research. It’s amazing what I found, I thought it would be worth sharing with you.

For a while, I thought I was crazy. I was so emotional and it didn’t make sense. Why couldn’t I just shake all this off, to take the advice of everyone and just not think about it? The doctors don’t tell you how your emotions will be. Instead, they tell you that diet, exercise and medicine will make it all better. That doesn’t stop you from feeling insane, much like what I had. So I figured that you who is reading this might be feeling the same way I was. I want to show you that you aren’t insane, that everything you are feeling has a reason and that you aren’t alone in what you’re feeling.

According to McCook PhD, Bailey PhD, Williams PhD, Anand MD and Reame PhD, authors of Differential Contributions of Polycystic Ovary Syndrome (PCOS) Manifestations to Psychological Symptoms says that “severe mental health issues including anxiety, depression, body dissatisfaction and eating disorders, decreased sexual satisfaction and decreased health-related quality of life,”. They did a study that talked to women with PCOS against people without it and showed that there is a link between PCOS and mental issues. Though they go on to say that the disease we have doesn’t actually CAUSE these symptoms but having these symptoms caused these. “Because excess facial of body hair in women is perceived as socially undesirable, male pattern facial and body hair distribution may be one of the most distressing symptoms among woman who have PCOS.” That tells me that it isn’t so much the disease as it is what others think of us.

I don’t know about you but I don’t really think about all the things PCOS causes because it’s too depressing. I don’t like it so I don’t think about it. That doesn’t mean that the emotions aren’t still there, under the surface. Especially now that the world has gone on a ‘health’ kick and to be anything but going to the gym and getting thin is nearly unacceptable. One of the things PCOS causes is the hardship it is to lose the fat. My doctor told me that I could lose weight but it is harder and longer than it would a normal person. (That is, someone who doesn’t have PCOS). Unless I take Metformin (which when people hear that they instantly feel sorry for me and think I am diabetic when that’s not that case. They don’t want to hear anything else so they shut off as soon as they hear that. PLUS people like the military don’t like when you use it and won’t let you join, even though you don’t have diabetes.) and I don’t like the way that the pills make me feel. So I stop but I have to fight twice as hard as anyone to lose weight and they don’t see that they just see that I’m fat. When I don’t lose the weight as quickly or as easily as everyone else I get discouraged.

Then there isn’t just the fact I can’t lose the weight but then I have hair where most of the women population do not. Big black hairs under my chin, on my lip, down and away from my bikini line. It’s gross and I hate it. I am self-conscious when I think it shows. Society pushes an image into every person’s mind, especially women, what the ideal image for a woman should be. The male pattern hair growth and inability to lose weight don’t fall into that image and it’s hard. A lot of people are trying to change the way society thinks but that’s harder than it sounds. They also state that “it may be that the societal expectations for women’s physicality … leads women with PCOS to feel anxious about their excess body hair and feel anger about excess weight and societal negativity towards weight.” So it isn’t just you that feels any of this.

The biggest issue that women who have PCOS faces, though, and this is the most emotional one, is the infertility issue. McCook, Bailey, Williams, Anand and Reame say that “wishing to conceive” has been related to decreased quality of life.” And for anyone facing this is completely true. I know that this is the hardest part about this disease because I want to conceive so badly I can feel it in my soul. It’s like I am not a normal person (though that is a subjective term) because I can’t give my husband a child of our creation. I keep waiting for him to tell me he is leaving because I can’t do something so simple. That isn’t the case but that’s where my emotions take me. They also say that, “that many believe they are abnormal or not real women due to the fact that they cannot predict when they will menstruate.” Now that’s something hard to hear but it rings true, at least it does for me.

The emotions we all feel isn’t just for those suffering from PCOS but with all that, our bodies are enduring it isn’t hard to see it. Depression for what you really want but can’t seem to have. Depression because no one around you REALLY understands what you are going through. Anxiety because you aren’t like everyone around you. Anxiety because your partner might not understand and/or want to put up with this. Body dissatisfaction because it refuses to give up the weight you are fighting to get rid of because you don’t look like everyone around you. Eating disorder, because if you can’t lose the weight then why try? If you are like me then you stress eat, you can’t control anything else but you can control this. Decreased sexual satisfaction because you are so worried about what you look like, upset that you can’t be like all the other women and because what’s the point? It’s not like you are going to get pregnant from it anyways. And decreased health-related quality of life because you are worried about everything else you aren’t taking care of yourself.

I want to let you know that it’s ok to feel all these emotions. It’s ok to let yourself cry after trying for six years and still nothing. It’s ok to open up to your partner. It takes two to tango and they are invested in all this just like you are, so let them know and let them help you. DO NOT DO THIS ALONE. All the depression, anxiety and fears will swallow you whole unless you share it with someone else. You aren’t crazy for feeling all this. I am not going to say it’s normal, nothing about this is normal, but you need to be strong. Makes goals and keep them. Go to the gym or exercise at home. Don’t do it because you want to lose weight but because you want to get yourself healthy. Eat better foods, not because you want to lose weight but because you are making yourself healthy. Don’t have sex with your partner because you are trying to make a baby but because you love them and it will bond you closer. Talk to your partner and let them help you. Do research on this disease, as I am doing, and find what you can do to help make it better. Ignore the negative and hold on to hope.

I won’t tell you that nay of this is easy. 6 years of trying for a child of my own and I am still struggling. I cry, I get depressed and I get angry. I rant about people who have kids who didn’t want them or shouldn’t have them. I swear my husband is going to leave me because of this but that’s not it. Let yourself feel those feelings, you can’t really stop them, but know that YOU ARE IN CONTROL. So feel them then pick yourself up and move on.

Let’s do this together. I won’t stop writing anymore, I want you to know that there are other people out there who is going through this like you are. I didn’t know that, I had no one to talk to and feeling alone was the most crippling thing ever. Ever since I started this I have heard of people I knew going through this, I never knew. So there are people out there and its time we stop being silent. Stop the ignorance and letting fear control us. Talk about it, tell people about it, become an expert at this and teach others. Stop being silent. Find people who struggle with this and make a support group. We are all in this together and we need to help each other through it. There is NO FIXING THIS but we can learn to live with it, find loopholes and ways around it.

I believe in you. You should too.

 

 

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I fight with you

DiseaseFightFinding the right doctor was hard. When I first learned that I had a problem I went to my doctor and asked for help. At first she didn’t know what was wrong and so she sent me to another, who would take blood and do some tests for me. I took my mom because I was nervous. Who wouldn’t be? I didn’t know what was wrong but I knew it was something. Whatever it was wasn’t good. I wouldn’t have a period for three months to have one that was so painful! Oh the pain it caused me, only for me to not have another one for two or three months. That’s not normal. I gained weight and couldn’t see to lose it, no matter what I did. There were hairs in places I thought women weren’t supposed to get them but that didn’t really bother me as much as the others. I was depressed and anxious in ways that weren’t overly normal to me.

          So I went to a doctor to get blood work and tests done with someone I haven’t met before. With my mom beside me we went and I got the work done. The doctor did some work and sent me on my way. A few days later I had an appointment to go and get my results so, armed with my mom again we went and waited. It was packed in the small waiting room. It was probably over an hour after my appointment time before I was called to go back to the doctors small cramped office. Again we waited for about thirty minutes more before she came in. Doc explained that from the blood work it showed that I had PCOS. What I didn’t learn until a little while later that a simple blood work isn’t enough to really diagnose it.

          It threw me for a loop when she told me that. I hadn’t heard of that before and so I didn’t know what to think, not really. I asked what that meant, what could I do and what next because I didn’t know. I had no idea what it meant. My mom sat next to me just as confused as I was.

          The doctor, who was feeling rushed since she wasn’t just working with her patients but she also had another doctors patients, frowned at me. I was scared and unsure but then that look she gave me wanted to curl in to a ball and disappear.

          Before anything else could come out of my mouth she sat back and snapped at me. “If we talk about it then it becomes an infertility issue and sadly, your insurance doesn’t cover that.” So I leaned back a little, trying to find a way to ask without seeming crazy. “Is there any way we can talk about it without it being a fertility issue?” That apparently was the wrong way to go about it because she looked almost angry.

          “I’m not going to lie to the insurance for you. I don’t do that and I won’t.”

          The doc got up from her chair and left the room. I felt like a tiny ant she just squished beneath her slip resistant black shoes. Saying nothing, my mind reeling with the fact that I had something I didn’t even know existed and the doc made me feel like I was a horrible person. All I could do was cry. It was wrong that she would say that to me, even if she was busy and pressed on time. You can’t give someone news like that and not explain what it is. I had no clue!

          I am so thankful that I brought my mom along because while we walked to the car, me feeling like an ant stuck under someone’s shoe and she was fuming. My mom is an amazing woman, she is a mother through and through. She was angry at the doctor for the way she talked to me. Five years later she still gets angry when we talk about all this and she remembers that doctor. Actually, when I told her that I was going to write a blog about this she was quick to tell me to tell about the doctor. So there it is. The first experience I had with a doctor who told me I had PCOS.

          After that I was wary of doctors, I didn’t want another experience like that. It took a while but I asked a friend about her OB/GYN and she went on how awesome she was so I figured I would give her a try. I needed help and I needed answers. So I made an appointment and I went.

          To say that this woman was awesome is an understatement. When I walked in to the room she sat down, asked me what I was feeling and what symptoms I had. After I told her she smiled at me with a smile that could light up the bad things and told me I had PCOS. When I asked if there was a way she could explain that to me she smiled even brighter. She told me that if we put in it was PCOS then yes, it would be infertility issue but since it wasn’t just that it was also called pre-diabetes it made it a non-fertility issue so we would be free to talk and diagnose.

          And talk we did. She told me everything no one else would. She told me what it meant to have PCOS. It meant that you gained weight and couldn’t lose it. You were either producing too much insulin or were insulin resistant. You had male hair growth pattern. It affected your emotions and took a blow to self-esteem.

          In my mind it all made sense. She told me that I can take metformin and it would help keep my hormones and insulin in check. She told me that it would be hard but she did it, has two kids and that I could do it. For a little while I had hope, I had a chance.

          That’s what this blog is all about, showing you that you have a chance to fight back and get back what control you have. You aren’t alone in this! There are more of us out there but no one wants to talk about it so we aren’t always aware. It’s not something women want to discuss but it’s hard and we hide it away. Well I am going to stop doing that. I want everyone to know that you aren’t alone and that there is HOPE! Keep it alive because we CAN FIGHT THIS!

          Stay strong. You got this. 

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A woman's invisible battle

I want to start off by introducing myself to you first. My name is Krista Chandler and I am twenty-five years old. I will be married five years in June. My husband and I have been trying for a baby for almost that whole time. It's not been an easy road. At first we thought things would be easy but then as more time passed and nothing happened we started to wonder what really was going on. A few doctors later I was told that I have something called PCOS or Polycystic Ovary Syndrome. I didn't understand what that meant other than it would be hard to get pregnant. It wasn't easy to hear and worse when it seemed that everyone around me was getting pregnant without even blinking. 

For a while I was in denial about it all. I was getting depressed badly, angry and hurting. I didn't want to think this was true. It wasn't until I went to college that my English Professor asked us to do a personal interest research paper. I chose to do it on PCOS figuring it would be the motivation I needed to find out what was really going on inside of me. 

All the research I've done and the doctors I've interviewed, it opened my eyes to a while new world. I will not ever claim to be an expert, experts know almost everything but I am a student. I have a lot to learn and will keep pushing to find out more and more. 

I know a few people who just learned that they have PCOS but the doctors aren't being helpful and they don't understand what was and/or is going on so this is my attempt to get the word out there. I want people to know that they aren't alone and the emotions and feelings they have aren't irrational or crazy. You aren't the only one in the world who is going through this. 

I want to be able to show what I've been dealing with and how I've gotten through it. How I am still going through it. So this is my first post of some research I've done explaining what exactly I am talking about. 

PCOS 2Pcos occurs because the woman’s hormone levels are unbalanced. At first the hormones create cysts that appear on the ovaries, causing the hormone unbalance to be more so. Doctors and researchers aren’t really sure why that is but it does. Now the cysts aren’t that harmful to the ovaries they are attached to but they keep the hormones unbalanced which is not a good thing. If left unchecked then it could cause more health problems for the woman like diabetes and heart problems. Neither of which anyone wants, it’s best if the woman sees a doctor and gets it treated. The problem with realizing you have PCOS can be kind of tricky at first. Some of the early symptoms are small like acne, weight gain or trouble losing weight and even a few extra hairs on their chins or stomach. Not many people will see these and instantly think there is something wrong since most people who don’t have PCOS have one or all of those. Now more severe symptoms include infertility, depression, mood swings and hair loss. Those might be a little more of a warning sign but for the most part people don’t always put two and two together to form a whole picture. According to WEBMD there is no way to prevent this as of yet. No one has found a way to stop it but there are ways to avoid any further damage to the body like medication to help with the problem. It’s hard to know who is going to get PCOS and who’s not since it affects the hormones but even if you have it, there is way to get help for it. 

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