I've been a little pissed lately. Actually, this issue has been bothering me since I was diagnosed with PCOS. I actually don't write much about my PCOS, because other than taking Metformin, I haven't treated it as an issue separate from my infertility. But, you'll see where this is going.
To start, the problem with PCOS is that it is a moving target. It is different for every patient and it can change over time. For example, my sister and I both have PCOS. Of the many, many symptoms that can exist with PCOS, she had some of the worst ones: cystic ovaries, irregular periods, hair growth, weight gain, thinning hair, hormone imbalance, and more. For me, my symptoms are much fewer: mainly non-existent periods, cystic ovaries, elevated LH, and very minor acne/hairs on my chin. However, I tend to do very PCOSy things in treatment - like develop huge amounts of follicles and cysts after injectables. (As of this morning, I have 14 follicles on my right and 3 on my left, with several more days until trigger. That means I'll probably have a whole lot more than that. Holy shit. It feels like I'm carrying around a grapefruit on that side.)
Because of the wide spectrum of symptoms, PCOS can be widely misunderstood and difficult to treat. The tension always exists with PCOS - do you treat the symptoms, or try to get at the underlying (unknown) issues that cause it? My sister has spent decades researching this crap. Workshops, conferences, books, doctors, message boards - she's done it all. I've done a bit too, and I have to tell you, I'm frustrated. Every single source I read adds more layers of confusion for me. It gets even worse when you compare Eastern Medicine and Western medicine's different perspectives on the subject. Then, try adding in all the supposed "cures" for infertility in general, and you've got a real clusterfuck. I won't bore you with the list...we all know how many different dietary, supplement, and treatment recommendations that exist out there. But lately, I am getting way more heated on this issue.
I have been reading a lot on Twitter, fertility boards, blogs, and the news about how everything I am doing or not doing is the thing that's holding me back from getting pregnant. Whether it is eating organically, being a vegetarian, cutting dairy (or soy, or gluten, or red meat) or eating more of it, taking fish oil, not taking fish oil, losing weight, gaining weight, loading on antioxidants, eliminating caffeine, or indulging in modest amounts of caffeine, apparently it is my fault I'm not pregnant. My gut reaction is to get angry - angry at the fact that I can't seem to find the magic bullet that is keeping me from getting pregnant. Then, my anger turns to self-hatred and disgust when I read about women successfully making some of these very dramatic changes, ending up with babies. How do I know which one? Do I do all of them and never eat a comfort food again? Do I force KG to make these changes too?
Is it just me? Does everyone find these recommendations completely overwhelming?
The hardest recommendation for me though continues to be, "Have a positive attitude."
Mo summed up my own feelings on this beautifully:
How did I not come up with this on my own? Of course! That’s the magic solution! Think positive thoughts! I’m sure all of the crap that has happened to me is entirely my fault because I didn’t think positively!
Don’t you all just love that little gem of advice? Useless and guilt-inducing all at once! It’s the whole package.
As I near the end of this IVF cycle, I don't know what I'll do if it fails. I feel really lost when I think about it. So for now, I guess I'll try to follow Mo's lead again:
Attempting to “think positively” and the inevitable failure of that attempt will only lead to wallowing and guilt.
So I either think negatively or I don’t think. Period.
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Appropriately, Lost? by Coldplay played on my iPod this morning. This version is gorgeous.
I'm not trying to have a baby and the suggested "Ways" in which to help women get pregnant overwhelm me. So I can 100% sympathize with you. I don't totally get it, but I think I do. All I know is that you will get through this either way.
ReplyDeleteOh boy. You just typed out what I have been thinking for EVER. I too have read a million conflicting and drastic things to 'cure' pcos. One of my doctors thinks that by just losing weight, I can get pregnant. Really? Then why do I know a ton of women more overweight than I who gave birth on their own and did NOT develop pcos? What is this big gluten free kick? Dairy? We've been eating dairy for centuries...
ReplyDeleteI just don't think that I can add a crazy diet/lifestyle change to by ever stressful/grieving life. It's too much. I'll eat healthy, but if someone tells me to give-up bread or the occasional cupcake, I will kill myself.
I am really confused on the whole issue. Because I woman was doing a certain protocol and got pregnant, doesnt mean it will work for the next woman in the same situation. I completely changed everything before my ivf cycle. All the way from diet to acupuncture. My ivf turned out to be a disaster. Heck I dont know. I do hope that this is your cycle and you can walk away from this will a baby.
ReplyDelete"Been there, done that. Tried it all. Don't give a t-shirt just hand me a baby already!" those are my thoughts when I get told I need to try something different when it comes to food. I'm so restricted already I'll soon be down to just purified bottled spring water with added minerals water and doctor approved chemically treated air, no not even bread because it might not be the right one!
ReplyDeleteLol. I can only laugh because it's all so ridiculously contradictory. Yes. I feel the same way. I've done all of these things at some point, and more confused than ever. I already was a healthy person. The only thing unhealthy about me is that I'm infertile. Eff it. I'm this close to giving up after IVF 2. Hang in there! You are doing all the right things for you! It's all a numbers game, so you have plenty of follicles and eggs to come.
ReplyDeleteI totally agree. A PCOS diagnosis for me is only a slight step up from "unexplained".
ReplyDeletehttp://itsgonnahappen.wordpress.com/2011/10/07/the-almost-useless-diagnosis/
It's overwhelming, and people always give assvice. There are things that worked for me, but that was me. Keep what you can use, and toss the rest. Your infertility is not your fault. It's a crapshoot. When a doctor told me I'd have better chances getting pregnant if I lost weight, I was thinking of those women whose birth control pills fail because their BMI is too high. When people told me "just relax," a friend told me to ask them if women who got pregnant through rape were particularly relaxed. There's only one thing I am fairly certain of, and that's that this world has a large share of assholes who will spout off about shit they know nothing about. Yes, I used "assholes," "spout," and "shit" in the same sentence.
ReplyDeleteI'd follow a diet or supplement guideline only if it made ME feel like it was working. Because placebo effect can be very powerful. Oh, and as I've told you elsewhere, when I got really superstitious about my second IUI, about doing everything right, not listening to certain songs, not going to certain branches of my HMO, and it failed anyway--it was kind of freeing, because it made me realize that pretty much none of it was under my control. Understanding you have no control over the situation can be frustrating, obviously--but at the same time it can be a relief, because if it's random, it means that there's nothing YOU did that made it fail, you know?
When I first started on this journey, there was a woman who could get pregnant easily who decided to post her suggestions for how to achieve pregnancy. Her listed included everything from taking prenatal vitamins to drinking 3L of water a day and simply deciding whether you really wanted to be a mom. I would have punched her if she was standing in front of me.
ReplyDeleteI think it's natural after being diagnosed or TTCing for so long to start looking for answers. Be it changes in diet, exercise, taking or not taking supplements and even worshipping fertility idols (seriously considering this one). It's easy to drive yourself crazy. I think what it comes down to is balance and doing what's best for you. Because biology is a complex system that plays by its own rules.
On that note: hooray for 17 follicles! May everyone of them grow, be mature eggs. And may there be joyous news very soon!
They still consider me "unexplained". I have had all those symptoms for PCOS, but I guess my hormones are in "normal" ranges. I was put on metformin for my treatments. You gotta do what is good for you. And if it means not being as "healthy" as they say we should be then so be it.
ReplyDeleteYay for 17 follicles!
I'm not insulin resistant and most of my hormones are normal (except the LH to FSH ratio) but they still diagnosed me based on other symptoms.
DeleteI feel the same way. I hate how vague PCOS is - nobody (not even doctors) seem to have the answer to how to fix it. It's extremely frustrating.
ReplyDeleteI have a theory about all of this...the natural pills, the diets, the acupuncture, the eating or not eating of certain foods...I think it's a way that we can try to attempt to control the uncontrollable. Taking a pill three times a day at the same time, even if we have no clue it's working is at least doing SOMETHING. I get so down about PCOS sometimes because I honestly feel like no medical professional can give me a straight answer about anything. My need for forward movement, progress, control, is something I can at least fake myself into believing if I'm doing acupuncture or doing a bat shit insane diet. If we all followed every single piece of advice on what to take or not take, we would be eating nothing, drinking nothing, and miserable. There are crack addicts out there who get pregnant. People who shove their faces with McDonald's every single day, and who never exercise get pregnant. People get pregnant after running marathons. People get pregnant while eating dairy, and certainly get pregnant after boozing it up...the truth is, PCOS is a "diagnosis" for a disease that has so many colors and variations that it's impossible to diagnose. I really like this post. Just keep plugging away at what is working for you. Don't get down on yourself for ANYTHING. You are kicking ass.
ReplyDeleteI've struggled with this same thing, only it's endo instead of PCOS in my case. Earlier on, we did try tons of these alternative therapies. I really felt vindicated when we got pg immediately from letrozole, like there really was something wrong with me that required a med to fix.
ReplyDeleteSending you the best of luck this morning with retrieval!!