Last night a friend confided in me that she was diagnosed with PCOS this week. She, like me, is 33 years old. She like me, has been seeing an OBGYN since she was 18, she like me spent years without the diagnosis of PCOS, until she began trying for a baby.
Why is PCOS often ignored or not diagnosed at all until you are trying to conceive? It has to be one of the most undertreated conditions within the world of women's healthcare. PCOS is not hard to diagnose. So why the lack of diagnosis? I can only imagine that while OBGYNs are taught about PCOS in medical school, they don't encounter it nearly enough to take an interest in it, to understand it and effectively treat it. Although I suspect that with the rising rates of infertility, that more and more OBGYNs are becoming more familiar with it. There are so many different parts of PCOS that warrant treatment that is not linked to wanting to become pregnant. It is an endocrine disorder that wreaks havoc on a woman's hormones, causing a whole host of symptoms such as acne, hirsutism, irregular menstrual cycles which often leads to high estrogen levels, high testosterone levels and low progesterone. This imbalance does not make for feeling well. At least not for me! Water retention, depression, anxiety, mood swings, these are all linked to hormonal imbalances. And let's not forget that contined high levels of estrogen put us at a greater risk for hormone related cancers. In a nutshell PCOS is a horrible disorder.
I was reading my messages from my friend, about her fears, her concerns, her doubts and then she got to self-blame. I stopped her right there. I hope that she believed me when I told her that none of this is her fault. NONE OF IT. I couldn't understand why she was blaming herself. Honestly, in all my years struggling with infertility, I never once blamed myself for having PCOS, Hashimotos or Endometriosis. I did nothing to have these diseases, and neither did she. She is angry that she didn't go to the doctor sooner, but what would sooner have done? Sooner would have made no difference in her treatment, sooner wouldn't change the outcome...there is no difference between 30 and 33 in the world of reproductive endocrinology....she is not to blame. Let us not forget that she was seeing her OBGYN regularly, and she failed to diagnose her. How could she self-diagnose? It is not her fault.
I felt my heart break for her as she spoke of her Faith, which is still strong right now, hopefully she is not one who wavers in her Faith from this, although, I can guarantee that at some point she will be angry with God if her journey is a long one..I reminded her that it was ok to be angry. It took me back to a place I was just a few short years ago, when I began this journey toward becoming a mother. I remember how ridiculously scared I was. The insecurities I felt and at times I still feel them. My body failed to do the most basic of functions...to reproduce. It didn't matter that I did not drink, smoke or do drugs. It didn't matter that I changed eating habits, charted my temperature, checked my cervical mucus daily, peed on a thousand OPK sticks, took supplements, and put my body through enormous stress with hormones. It didn't matter, none of what I tried yielded me a child. So do I blame myself? No! Am I angry with God? Not anymore. Do I have Faith? I definitely do! Do I have hope? More than ever. But I know that it took me a VERY long time to arrive at the destination of acceptance. A LONG time, lots of medication, therapy and serious soul searching. Time has passed, medications are a thing of the past and therapy has ended(although I kinda believe I need to go back to therapy), soul searching is a continuous process that I take part in daily.
In speaking with my friend, I reminded her of the things she told me. To have Faith and believe that it will happen. She now understands that saying that offers little to no help at all, but I still told her those words. As much as I hated when it was told to me, the truth is, you have to encourage people when they are facing something as painful as infertility but I also told her it was ok to feel the not so great things. That it was more than ok to be angry, bitter, shocked, to make deals with God, to bargain for a baby with Him, to plead, to be jealous and envy women with whom motherhood comes easy and to be sad, oh God, sadness, it is a HUGE component of infertility...these emotions are all normal, they are more than normal, they are OKAY to feel...acknowledge those feelings, feel them for however long you need, as long as you don't stay stuck in them forever.
Talking with her made me realize that I have come so far in all of this. I have this deep understanding of how life doesn't always pan out how you planned, but that you can be happy with a different life, you just make a new plan...sometimes it is a better plan. I have grown tremendously both emotionally and spiritually throughout all of this. I find the silver linings, I look for the good, I try to find the reasons. Sometimes I am successful, other times I am not and you know what? That's okay too.
I like myself as a person today more than I ever liked myself. I have been struggling for what seems like forever with my inability to be happy with who I am physically, and there was a period of time that I did not like who I was as a person either. That person I was while deep in the trenches of depression and anxiety. I was moody, antsy, withdrawn, high strung, too sensitive, defensive, bitter, angry, jealous...and I was gaining weight at rapid speed. I was really fucked up if I may be frank. Now, 5 years later, after the clouds have lifted, after I fought my way back from the depths of the darkness of depression and severe panic, I kind of really love the person I am. I enjoy being happy. I am allowing myself to be happy, and that feels good. I may never like what I look like, I may never be a size 5 again, but I have decided that regardless of all of that, I will love myself, at every size, at every age and in every stage of my life. I can try to fix the things I don't like and accept the things I cannot change. Infertility did this to me.
Say what? How can a disease that has brought me so much pain and sadness, that left me depressed, anxious and fat, also be the disease that left me with gratitude, truth and self acceptance? I can't answer that honestly...I can only say that it forced me to dig deep within myself, to learn who I really am, to not focus on what's broken, but rather to find the good in me, to find what makes me smile, what makes me laugh...to love every moment of my life. Even the shitty days when it seems like the universe is against me.
Infertility is a battle, and you don't only win once you have a baby, you can win long before that..if you let yourself. I won't pretend that any of this is easy, because none of it is, but it also isn't the worst thing in the world. I can promise you that. It surely isn't the worst thing that has ever happened to me. I don't want people to feel bad for us, to feel sorry for us. They shouldn't. We are REALLY happily married, completely fulfilled in our marriage..we are enough for one another, we don't NEED a child, we WANT one..there is a big difference. I wish people would understand that when I share things with them via social media, that I am not looking for pity, sympathy or anything of the sort..I am actually doing it to raise awareness, to stop the silent talks, to be the person who opens up the possibility of dialogue when they find out they are dealing with infertility. They can still be private and gain support from me. That is why I am so vocal about this all. It is also a great way to stop people from asking when you are having kids, although at this point it kind of feels worse that people stopped asking us...did they give up on us? That's ok if they did, as long as we haven't given up on us. :)
At the end of my conversation, I told my friend to not waste time with an OBGYN and move right along to an RE...and of course I totally plugged my RE, because he is quite fantastic and so are his colleagues, and I have 100% belief that they will get her pregnant. I often advocate for anyone I know to use my doctor. Sometimes I wonder if they think to themselves then why am I not pregnant? I do tell them that I have been on a break for a very long time, not actively trying, I was actively preventing while on meds for 3 years and well even though I miscarried, I did get pregnant on the 3rd IUI and the 1st IVF...those are pretty good stats for someone with a myriad of conditions. Right now is the only time that we have not prevented, because right now is the only time I have been completely off medications, and although I know that the probability of a pregnancy on our own is next to nil, I still remain hopeful that it could be a possibility....that is, if C still has some sperm...I am sure that will disappear as time goes on with him having been back on testosterone. I will try IVF again, and again if need be. We will get this right eventually, and if we don't, well then there are other avenues to explore.
Tonight my mother told me I have really changed...and she meant it as a compliment. I am glad that people are finally seeing this, which means I am projecting it, which means I am really feeling it...I could never fake my feelings, I wear my heart on my sleeve, my face is perpetually in a state of expecting the worst, except lately....I have been smiling and laughing a lot more. It's good to be happy. So good.
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