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My PCOS is not your PCOS

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I was away for the weekend spending Passover with some friends, and as I was catching up on all of your blogs, I came across a wonderful post that Her Royal Fabulousness wrote a few days ago. It got me thinking of my own personal “self diagnosis”rabbit hole I have been going down since I got my diagnosis of PCOS almost two years ago.

I came into the diagnosis knowing nothing but the fact that the doc had discovered multiple cysts on my ovaries, and that I didn’t ovulate regularly. My doctor didn’t elaborate at all on my condition. In retrospect, can someone tell me why the hell more doctors don’t take time to sit down and educate their patients after a PCOS diagnosis? His one recommendation was “birth control”. This was the single worst recommendation I could have had. I ovulated more BEFORE my diagnosis than I did after I went on the pill like the doctor suggested.

And then, after I stopped the Pill, my dysfunctional relationship with Dr. Google began. It started slowly…I came across herbs like Vitex that were supposed to be the “miracle cure” for PCOS. I took Vitex, and only experienced an increase in my BBT. Then came the insulin resistance hypothesis, the various ratios of LH to FSH, androgens, testosterone, what to take for elevated levels, thyroid hormones, take soy to ovulate, stay away from soy, don’t drink caffeine, drink caffeine it’s good for you, spend money on more supplements– licorice, NAC, inositol, wait, don’t take those if you have elevated estrogen, wait, don’t eat gluten, don’t eat dairy, don’t eat fruit, don’t eat avocado, eat avocado. Meditate–PCOS is stress related. Exercise, but not *too* hard.

Do you see where I’m going with this?

The amount of remedies that I have tried–that WE ALL have tried–in our battle to overcome our PCOS or our own specific IF afflictions is exhaustive. And it’s exhausting. There are stories we read every day about people “beating” their PCOS– but you know what? YOUR PCOS IS NOT MY PCOS. This disease is absolutely infuriating because it is so unique and different to each individual, yet many times I’ll read a “naturopathic” website where someone swears up and down that they have “found the way” and they have “beaten” PCOS. These websites are so damaging to women like me who want nothing more than to believe in a miracle cure. Truth is: There is no magic pill. The reason why I get a cyst on my ovary may be different from why you get a cyst on your ovary.To be lumped into one category of PCOS with all women with the disease is like telling someone with breast cancer that their treatment should be the same as if they had brain cancer simply because you have the word “cancer” in your diagnosis.

To that thought, Intuitive Health Lady got all backed up today because she wanted to order me some PCOS-specific Chinese herbs and I questioned her. I asked her what was in those pills, and her only answer was, “herbs specific to PCOS”. Guess what, Lady–there ARE no herbs specific to PCOS. Why? Because (repeat after me) MY PCOS IS NOT YOUR PCOS. How the hell can she say that one herb on a bottle slapped with a PCOS label will magically regulate me? What if these PCOS herbs are specifically for people with estrogen dominance (which I don’t have) or what if some of these herbs decrease TSH levels (mine levels are already very low) When I told her that I didn’t want to take any more herbs, she sort of implied that I would slow down my healing process, but that I might need more time to “warm up” to the idea of taking herbs. No. No I don’t need more time. I need to talk to someone who understands: MY PCOS IS NOT YOUR PCOS.

PCOS has me scared shitless. When I’m scared, my tendency is to try and control my environment. This Elimination Diet is one way that I am exerting control over something that is completely out of my hands. I have a checklist of things I can and cannot eat. Good. I am “safe”. If I follow this “magic” checklist, I’ll hold my baby in my arms, and Hubs and I will have our family we so desperately want. We all know this logic is horse shit, but that’s the way my brain is operating right now.

It occurred to me this weekend (as I sat drinking water and  eating bland salad at a  table filled with people my age who were enjoying lots of wine, sugar, and eggs), that I am abstaining from all that I have once enjoyed in terms of food and drink as a way to control massive levels of anxiety every time I think about the road that lies ahead of Hubs and I as we try to get pregnant. If I don’t ovulate after this diet, then what? I go back to eating and drinking as I always have? I attempt the diet for ANOTHER month? When does this fucking insanity end? If I do ovulate during or right after this diet, was it even the diet that helped? The acupuncture? Or could it be that there is absolutely no freaking way to know. I could have ovulated because I hit a speed bump differently, and it jostled my ovary. Or I could have laughed at just the right moment, which triggered the reaction. It is impossible to know.

This is what drives me insane. The not knowing.The other thing that drives me insane: people who want to push pills and give me herbs that say “PCOS” on them without understanding that:


I will now step down off my soap box and eat some more shitty gluten/dairy/egg/sugar free gingerbread I made.


About Sunny

I'm a happily married, 31 year old gal who is just starting her journey to conceive. I also have ovaries that may need a jump start. This blog is an attempt to channel my obsessive research on my Polycystic Ovarian Syndrome into something a pregnancy test. That would be awesome. I also hope that other women with this condition will find support in this blog. There are a lot of us out here! Happy reading, whatever your journey may be.

14 responses »

  1. Amen sister. I feel like there is no good test of what works and what doesn’t. People ask me all the time if the acupuncture I spend $80 a session on is working. I have no clue what to tell them…AAAAAAARG. Stupid PCOS.

  2. I’ve resisted special diets so far and I have anxiety because I’m not doing enough! We all have to find our ways to cope, don’t we!

  3. Holy cow! You took the thoughts right out of my head! I was sitting here in my cubicle mentally screaming these words! And yet I will go back to my diet at dinner right after my acupuncture appt tonight! I, too, feel like claiming as much control I can helps to reduce my anxiety. And even though I have no idea if ANY of this will help me ovulate or if I actually do ovulate will I finally get my bfp, but I will continue eating this crappy diet and shelling out the dollars for acupuncture for at list the next few months. Sigh. Thanks for this post. I feel like you got my frustrations out for me! 😉

  4. You make a lot of really fabulous points. The syndrome part of PCOS ensures that the constellation of symptoms that characterize this disease results in a constantly moving target. For every single woman out there. I’m glad that you challenged the Intuitive Health Lady. They used to say that you had to be overweight, but what happens when you aren’t overweight? They used to say that you had to have some sort of insulin resistance, but what happens when you pass all the tests? What is standard treatment when there really isn’t a standard? Great post.

  5. ps-i tagged you in a post…i hope you play along because I’d like to know more about you! 🙂

  6. Hallelujua! This is by far the crappies “disease” ever! There is no fast and easy anything to deal with PCOS. Apparently, I am not insulin resistant, persay, but metformin helps my ovaries/follicles not so resistant to doing their job….what? Stupid ass PCOS!

  7. Substitute endo for PCOS in this post and you echo my feelings exactly. This part got to me: “I am abstaining from all that I have once enjoyed in terms of food and drink as a way to control massive levels of anxiety…” I tried a very restrictive diet, too, and it was so draining. I felt like I had to so we could say we tried everything.

    The not knowing is definitely the hardest part. I hope you get pregnant very soon so you can just laugh when people ask you what it was (acu, diet, whatever) that worked for you.

    • Thanks for the encouraging words, Detour. I totally feel ya on the “had to try everything” sentiments. It’s almost like, if you miss that “one thing”, you feel like a failure.

  8. Oh my lord this is exactly what is going through my head on a daily basis! I just bought organic toothpaste and after using it a few times found out the tea tree oil in it is an endocrine disruptor. Money down the drain

  9. It’s going to be ending of mine day, but before end I am reading this great post to increase my know-how.


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