I’ve been wanting to give you an update on my PCOS for a while now, but I kept saying, “just wait until X,” or “once Y happens.” This was stupid. Health progresses very slowly, and I might end up waiting to write about PCOS forever if I decide to wait for everything to be perfect.
Here is my original post on PCOS. To summarize:
PCOS is the condition of having cystic ovaries, which is caused by a hormone imbalance. When women have too many androgen (male) sex hormones, and not enough estrogen, we do not ovulate properly. We develop cysts on our ovaries, and often exhibit other symptoms: we might stop menstruating, become infertile, have irregular periods, or exhibit testosterone dominant characteristics such as male-pattern facial hair, loss of head hair, and acne. Gross. Most PCOS patients are overweight and tend towards insulin resistance. Testosterone is high in these patients for this reason, and even conventional medicine prescribes low carbohydrate diets for remediation. However, there exists a minority of PCOS patients who have a bit of an opposite problem: that when they lose weight, or are perfectly fit, they mysteriously struggle with the same imbalance. I am one of these. Doctors are having a difficult time figuring out why.
I stopped menstruating about a year and a half ago now. I don’t want to get to the punch line too early, but I also want to let you down slowly, so know in advance: I do not have an absolute victory to share with you. I am not menstruating yet. But I have hope that I will begin some time soon. (!)
When I became period-free, I had recently lost a lot of weight. I have maintained, more or less, that body size since then. My doctor’s hypothesis for why I have PCOS is, therefore, as follows: since estrogen is produced in fat cells, when I lost fat, my body, which had become dependent on fat cells for estrogen supply, stopped having enough estrogen to menstruate properly. Make sense? Sure. But I have also tested low on thyroid, and around 40 percent of PCOS patients also have hypothyroidism. A high percentage of hypothyroid patients, in turn, (up near 80 or 90, according to Chris Kesser) have Hashimoto’s Thyroidism, an autoimmune condition. So it is possible that this is the underlying cause of my PCOS. I have yet to be tested for it since I am living in Taiwan, but I intend to find out once I return state-side.
That October 2009 was when I stopped menstruating. I was on a zero fat vegetarian diet, and had in fact been doing that for three years, though it was only in the final months of 2009 that I ever “got really serious” and lost weight. I wonder if this had anything to do with losing my periods, but, again, I don’t know anything for certain. In March of 2010, still around 19 percent body fat, I switched to lacto-paleo. My ovaries remained the same. I had no periods, no vaginal discharge–which I used to have in spades–and no sex drive. Life can be really hard sometimes.
In August of 2010, acne emerged. And not just acne, but, like, acne. I don’t have any photos from the time period because it was too horrific to even contemplate. At one point I had 37 active cysts around my mouth. Yikes. I do, however, have one photo from after I had recovered a little bit, and I’m going to post it below. We can pretty definitively attribute this acne to the high testosterone levels, since this is where testosterone-heavy people (such as steroid abusers) always break out. I really panicked about it being due to food allergies, however, which made my diet an absolute mess. My new hypothesis is that certain foods exacerbate the acne, but testosterone is the underlying cause.
Ugh, gross. At this point, I decided to give up dairy. It didn’t really help. I was eating a lot of vegetables (including a shit ton of goitrogenic cabbage), eggs, fish, and industrial meat. I noticed then when I took a lot of fish oil it seemed to improve, and also that whenever I put on weight it seemed to improve. When I lost weight again after putting it on over the holidays, my face was a fiery nightmare. Recall that estrogen is produced in fat cells, and helps mitigate the hormone imbalance. Putting on weight, then, was at least moderately effective.
The first time I saw any significant improvement was when I took progesterone pills for three weeks. This also made me put on about ten pounds in that three week time period, so I stopped taking it. It made me a little suicidal anyway.
In any case, because of this, I have always sort of used my face as a metric for my PCOS. The general trend seems to be that with a better hormone balance in my system, my face gets better. The state of the acne is also, I believe, related to my diet. There are two specific ways: 1) I notice that if I have some sugary drinks while out on a weekend, I get a small break out. This might be why dairy was so problematic for me, too. (I think I noticed that the worst food instigator for me was store bought blue cheese dressing: dairy and low-fat additives and omega 6 dressing: Gods, could I have been putting anything worse in my body?) So insulin is related. Note that insulin’s role in all of this is probably due to how strongly it stimulates testosterone production. 2) I think that my diet, despite my best efforts, was still high in omega 6s while at home. I also think I have a lot of inflammation left over in my body from my previous lifestyle and diets, so I need to really watch my omega 3s and 6s. That “meat” that I was consuming a lot of including high quantities of chicken. So perhaps it was never enough to balance the salmon filets I ate a couple of times per week. I don’t know. In Taiwan, I have been eating a whole hell of a lot of fish, which I think definitely helps.
Ok. So my skin is bad and my vagina is as dry as Oscar Wilde, and I depart for Taiwan at the end of January 2011.
Within a week I see mild improvement. Wtf? What changed?
Honestly, I’m not sure. There have been lots of variables at play already, and in Taiwan there are even more. I stop eating chicken, and I eschew dairy 100 percent. I also start eating seaweed. I notice that this helps, I think, considerably. This makes me wonder: is my low thyroid being fixed by iodine consumption, and is that in turn helping my PCOS? Iodine is known to support ovarian and mammarian tissue health, so basic nutrient supplementation could be the key, I think. When I discover this, I decide to eat seaweed daily. I also decide to really pay attention to my omega 3s and omega 6s. I eat as few vegetable oils as possible (though that is incredibly difficult in Taiwan), so I also eat fish twice per day. This means that I am decently balanced, omega 3 to 6 (though I really have no idea, and I don’t take fish oil), and also that I am getting more than sufficient iodine. More than sufficient, since seaweed and seafood are the most rich natural sources. I am also eating some pork, getting sufficient protein, avoiding sweets, and even adding some carbohydrate back into my diet. I have yet to really test whether the carbohydrate is important, or not, probably not, but there we go.
I see my skin improve with time. It’s slow, at first. Quite slow. I troubleshoot and figure I need more seaweed and omega 3s. I also stop eating sugar-free gum. I start consistently sleeping seven hours a night. I no longer live with my enormously stressful father. I have put on five pounds. I don’t know what is working, but something is. After about six weeks in Taiwan, my vaginal discharge returns. At this point, I’m pretty hopeful.
This is what I look like in early April:
From April through May, something really amazing happens. I don’t know what. But my skin advances like a warrior. Every day I see it clear up. Today, May 12, 2011, I have no acne. Only scars. I just sit back, and eat as carefully as possible, and watch the scars heal over time.
It’s also pretty fascinating, however, because in April I start getting violently ill once in a while. I get incredibly nauseated and have disturbingly thorough diarrhea. The first time this happens to me it is so severe that I am hospitalized for dehydration and shitting mucus and blood. Yikes. This meant that I end up eating a lot of sweet potatoes and occasionally squeezing in pork and eggs, and also carrots. For a while I drink soy milk and even eat some granola, simply because those are the only things that feel good in my stomach (but I worry about the insulin for my face!). This also means that, still, I am worried about my health. Am I doing something wrong? What is making me so ill? I don’t know. Honest. With my expert medical opinion, I have narrowed the causes down to: hyperthyroid activity, whether from an autoimmune condition or the vast amounts of iodine I was consuming, food poisoning, a duodenal ulcer, a parasite the hospital missed, or, my favorite candidate right now: iodine poisoning. I think I overdosed on iodine. Iodine can be corrosive in the stomach, and for a while I was exceeding the upper limit on iodine by a few thousand percent each day. I didn’t know I had been eating that much. In any case, my intestinal lining is upset and ulcerated, and this may be due to iodine consumption. Therefore: I have dropped my seafood and seaweed consumption to about zero recently (boy I miss omega 3s), and I have been doing okay. Skin still looks good, I feel great otherwise, my vaginal discharge is now not just present but constant, and my sex drive is back in full force. That is unfortunate, since I liked the mental clarity I had as an asexual for a year and a half, but Zeus hates me so what can I do?
This means that, I think, my periods will come back. I have no real evidence for what is working and what isn’t. The answer could simply be that my body needed time to adjust to the new body weight. Or it could be as complicated as having low thyroid from iodine deficiency, or low thyroid from an autoimmune condition, recovering from inflammation, needing omega 3s and more iodine for my PCOS, living a relaxed lifestyle, eschewing dairy, getting more nutrients in my body, drinking more water, drinking less (herbal) tea, or keeping insulin low. Another very important factor is that I’m about 5 pounds heavier than I was in September 2010. That’s not very significant for someone who weights 200 pounds, but the difference between 110 and 115, or 115 and 120, is pretty profound. I think it is a mix of a lot of things. In any case, I am no longer ashamed of going out in public–of inflicting my face on people, I used to think–and I have a sex drive and I was kidding above it’s fucking (pun intended) incredible, and I may in fact regain my fertility in the near future.
When I first started getting vaginal discharge a few months ago I thought my periods would start right away. Now I know better. Just like it took a long time for my acne to develop, cysts to show up, and menstruation to stop (perhaps that was a result of my long-term vegetarian low fat lifestyle), it is going to take a while for my body to find new balance and reap all of the benefits from increased nutrients on the paleo diet. I need to keep moving forward slowly, and to experiment with different foods ideas, and to be as smart and safe as possible. I think it’s going to come in time. I don’t have a triumphant success story for you yet, but trust me, when I begin menstruating, you may in fact be the first to know.
This weekend. A bit of foundation, hints of scars on the left side of the photo, but otherwise, well, free. Not bad, eh?: