Hey all. I’m pretty new (as far as being registered) but I’ve been reading the boards for quite a while now. It has been good to know that I’m not alone- sometimes it seems that the lack of knowledge about PCOS in the medical field indicates it is a rare diagnosis, but you all help me believe that its not all in my head. Things have really piled on for me lately and I’m feeling more stressed out and crazy over this stuff than usual. It doesn’t seem like anyone else in my life really understands what I am going through, they think its no big deal. I guess I just needed to vent to someone who knows how I feel and I think you ladies would know better than most.
When I was young I was just a normal girl who had her life in front of her, but it wasn’t too long before I had my innocence taken from me through sexual abuse from a family member (my father’s father). Since that time my life has felt out of my own control, I have self control habits with food which supposedly stem from those early life episodes…something about overeating to gain weight to keep away unwanted male attention. You know, all that psychiatrist stuff.
In my teenage years I was diagnosed with insulin resistance and hypothyroidism (which supposedly runs in my family), though I was recently told by a fertility doctor that it is actually Hashimoto’s Thyroiditis. Looking back, because those are two of the most associated diagnoses with PCOS, I find myself wondering- shouldn’t the doctors have put two and two together at some point in my early teenage years to possibly help me to not go through all of this now? Isn’t that why they keep all their crazy files and whatnot, to help chart a map of your health and spot things like that? Well, they didn’t. I’m not even sure when the onset of it was, because I started taking birth control at age 13 which regulated my cycles.
It was only a year after going off birth control at age 21 did I find that something might be wrong. To this day since then I have had 3 cycles, all about a year apart. Every time it happens I hope so very hard that this time everything will go back to normal but it never does.
For a year after going off birth control pills my cycle came regularly, but then it started to taper off. Around this time I had recently gotten married, and when I stopped receiving my cycle my husband and I got very excited – we were both eager and ready to start a family when the time came for us to do so, and we are both the kind of people to let the universe take its course and let things happen when they may.
The first test was negative. The second test was negative. Three, four, five months without a cycle and the tests were still negative. I was scared that something might be wrong with me, but I was more afraid to go to the doctor and have my suspicions confirmed. Despite this, I went anyway, and my husband came along for emotional support. There in the waiting room with all the expectant mothers and all the mothers with sweet babies my heart ached.
The OB I spoke with that day gave me the worst news of my life, that I did indeed have PCOS and that, in her words, “women with PCOS are infertile and you won’t ever be able to have children.” I spent the rest of the day in a stupor and trying to figure out how to tell my husband that the doctor had informed me that we could never start a family, something we had both dreamed about our entire lives.
I was terrified to tell him, I knew how much he wanted children, and I felt like I was letting him down. I feel like damaged goods, like a lie wrapped in a wedding dress. Sometimes I think that maybe I wouldn’t have even let him marry me if I had known I could never give him children because I know in my heart how much it hurts him.
But he was and forever will be the best husband in the world, he told me “We don’t need children to be a family, we are a family together.” He calls it our “nation of two”, I think some of you might know the literary reference. While I will always be grateful to him for saying those things, I can never shake how I feel, how crushed he is for not being able to start a family. Maybe almost as destroyed as I feel.
After doing a lot of reading and research, and talking to more doctors, Ive regained some of the hope I lost. It has cost me a lot though, personally and monetarily, and I’m just finishing paying off medical bills from all the blood tests they ran on me (that they didn’t say they were going to run, nor did they mention they weren’t covered under my insurance).
Ive run into speed bumps though, and it is very difficult to try to get healthy when PCOS treatment isn’t considered “necessary” by health insurance companies. I don’t know, all the things that PCOS can cause, including what it does to you mentally and emotionally….that seems to me pretty “necessary”.
And then there is the whole ‘everyone I know is pregnant all the time’ thing, my good friend just had her second, my childhood best friend who always said she never wanted children got pregnant on accident and has a baby now, and my sister in law just had her second (she got pregnant not two months after her first was born).
My husband and I just moved all the way across the states to be with his family and I am trying my very best to be a good aunt, I love my nieces and nephew so much but I still feel so jealous and hurt. It is hard for me to hold the babies without wanting to burst into tears.
And I know I shouldn’t have those feelings, but I can’t help it, and that makes me feel worse. I feel like a terrible person. What makes things worse is that my sister in law is going through PPD and while I understand it is a very serious condition and that she needs support I just want to ask, how can you possibly be sad when you have two beautiful healthy children, and I can’t even have one? How is it that people who don’t even want children are blessed with them, and those who do want them are kept from that joy? It just doesn’t seem fair.
From what I understand the only way my husband and I can hope to ever conceive is by getting healthier. While I know this, can I just say, it isn’t as easy as it sounds. I hate the way doctors say things like “Well, you just have to lose some weight”, like its just that easy. Oh, just drop the pounds! There they go just melting right off into thin air!
They never give you any of the information you actually need to get healthy, they just tell you that you need to be. Thanks doc, I think I could have figured that out without your $30 co-pay and $600 blood test and $100 prescriptions. I guess that’s why they call it “practicing medicine”. Every time it gets harder for me to go to the doctor, because I just feel like I am going to be told a whole lot of nothing again and have to pay a fee for nothing.
I guess it goes without saying that since this has started things have become difficult in terms of even trying for a baby. I never thought I would say it but I actually miss my cycle, it is comforting pain that tells you your body is doing what it needs to do reproductively. My already low self image has been brought down further by the facial hair growth, the skin tags, weight gain, the loss of head hair, the decrease in libido. I don’t feel feminine or sexy for my husband the way I used to, I feel like a failure of a wife.
The depression has gotten bad, and every day I fight to overcome but I can’t seem to get over the hurdle. When our insurance kicks in at the start of the year I intend to see a psychiatrist to hopefully talk some things out about my childhood to help overcome my self image and eating problems to get on the track to a healthy weight….but it just seems like such a long journey that might not even have the ending I want, and I don’t understand why this had to happen to me.
Why PCOS has to happen to any of us. At this point, even if I were ever to get pregnant, I have this fear that I wouldn’t even know I was pregnant until 5 or 6 months in because I don’t have a cycle anyway, and I have pushed it so far from my mind to keep myself from going completely insane with grief.
I just wanted to grow up, get married, and have a family of my own, but my body is broken – it can’t even do the very thing it was designed to do. I’m going to keep trying but with all these things happening around me and inside my head it gets harder each day to put a smile on my face. I just want to have a normal life. Sorry for rambling on so. If you read all of this, thank you I guess. It feels a little better just having written it down and gotten it out.
Want to connect with me? My name is EenieBeam on the SoulCysters Message Board.