PCOS and acne update

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.

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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?:

 

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05 2011

15 Comments Add Yours ↓

The upper is the most recent comment

  1. 1

    You look fantastic, Pepper!

    Kelp, which I assume you were eating, is a risky source of iodine. At high doses potassium iodide supplements are better, they give you control over dose and will help you diagnose iodine effects (which can be huge, good and bad). Also, iodine needs to be in balance with selenium, so you should supplement that if you aren’t already. Also copper, which is essential for thyroid function and often deficient.

    Congrats! That’s great news! I bet that when your thyroid issues are sorted out your PCOS will be too.

  2. Sunny #
    2

    Yay. Thanks for being honest about your journey. We are all on a journey of our own…there is never really a solid endpoint. My co-worker likes to say something along the lines of “I can only do my best today…some days it’s better than others.”

  3. 3

    Interesting account – thankyou. RE the iodine, if you have hashimotos it can seriously flatten thyroid hormone production in some people. (It did for me – and my thyroid became visibly enlarged) You may not have it though – an antibody test confirm it. I now focus on getting enough of the other two minerals necessary for thyroid hormone production – selenium and zinc. That makes a difference – you should get those from seafood and seaweed too. (I supplement) The other thing to check is chromium – important for insulin sensitivity and vitamin D. You need your vit D level to be at 45 – 50 to get enough for you to be insulin sensitive.

    All the best
    Julianne

  4. 4

    WOW!!!! just wow, i havent followed your blog so i plan to backtrack…but what you went through is A LOT LIKE I HAVE gone through! from the low weight, to the gain, to the acne, the high testosterone, eschewing dairy and poultry…and adding the seaweed and massa$$ fish!

    and my skin is clear finally too! but a large majority of my face clear up i attribute to the sun and adding in more starch. havent gotten my period back though but you made me hopeful!

  5. 5

    I second everything Julianne said: watch out for the iodine until you know for sure that you don’t have Hashimoto’s. It causes cytokine storms and thyroid tissue gets destroyed. It’s very likely that the PCOS has an autoimmune component- I’d avoid gluten like the plague (as nearly all Hashi’s and most autoimmune people are gluten intolerant) so, watch out for the soy sauce!

    Can you take advantage of acupuncture while you’re in Taiwan? It can really help the PCOS, as there is often an energy blockage in the ovaries aspect to it.
    Good luck! Sounds like you’re making progress:-)

  6. pepper #
    6

    Hey all! Thanks for the warnings re: iodine. These are all things I know/have been aware of but I kept eating the seaweed because I seemed to be improving and I wanted to keep all of the variables the same. I’m definitely going to keep my iodine low, but the problem is that seafood is the richest source of iodine. Even fish oil supplements often have really high doses in them. So how do I keep omega balance? I’m currently on the hunt for flaxseed oil, but I know it’s fairly ineffective, at least compared to fish, at dampening inflammation.

    Re: starch. Do tell! Why do you think adding starch back in helped? I’ve certainly been eating a decent about of starch here, what with all the tarot and sweet potatoes and what-not, but I’m not sure if that really lines up with what has happened on my face. What was your experience, Mallory?

    Thanks re: acupuncture. Will look into it. Though I remain skeptical. So many people in Taiwan talk about ‘qi’ and how I need to fix it to feel better, and do things at certain times of the month with the cycles of the moon, and all of that, so it unfortunately turns me off entirely to things that might in fact be really effective.

  7. 7

    re starch…it seems to allow my body to regulate hormonally as opposed to trying to ‘get carbs’ from vegetables high in fiber. i think its less hassle on the body and its shows in the appreciation on a clearer face :) also seems to put estrogen where it needs to be which for both os us is a good thing. im still learning my body and even some of the stuff i love doesnt always react well but you live you learn. i do now ‘break out’ once a month and get a pooch in the belly which has me hopeful that SOMETHING positive is going on hormonally so it may just be more patience and time for me now…? heres to hope!

  8. 8

    Regarding iodine, I don’t think fish oil is nearly as much of an issue as seafood and seaweed is, but if you’re concerned, you could take an algae sourced DHA (which will convert to EPA). You might also check out Camelina oil, which is much more stable than flax oil (and tastes better) as a source of ALA.

    Regarding acupuncture, I know you’re science-minded, so I just want to assure you that, these days, nearly every major medical center is using acupuncture as an adjunct therapy for everything from cancer treatment to fertility treatment. In fact, women undergoing fertility treatments have a much higher conception rate if they’re also doing acupuncture. It definitely affects hormones, via increased blood flow to the ovaries and uterus, as well as affecting the hypothalamic-pituitary-ovarian axis.
    Here’s more info for you:
    http://www.babyhopes.com/articles/accupuncture.html
    http://www.healthinharmonytcm.com/fertility.php

    • pepper #
      9

      You’re brilliant, you know that?

    • pepper #
      10

      Re: fish oil. I’ve read that some sources are real high and some minimal… rather like the content of iodine in fish, too. I’d love to get some hands on Camelina, but I’m sure I’d have to ship it from the states.

  9. ahlia #
    11

    woman, you are fucking gorgeous. and due to a strict upbringing, bad words feel like eating sand in my mouth except when i am speaking truth that needs to be EXCLAIMED. woman, again, you are fucking gorgeous. i love this smile on you in this last picture- just so honest.

    hope youre well.

    • pepper #
      12

      You slay me, woman!

  10. K #
    13

    Thanks for sharing your PCOS update! I went through something similar minus the weight gain, and since moving in with my grandma who cooks traditionally and getting off the birth control pill, my skin has improved as well. My period now comes every TWO months, like clockwork (vs 3 or sometimes 9 months… can’t say my uterus doesn’t have a sense of humor). I’m perplexed, but also assume it’s some intermediate healing stage, though I can’t stop searching for additional ways to guinea-pig myself. And Amen to greater sex drive!!

    BTW, have you considered the fact that it might be the greater amount of sunshine in May vs April that contributed to the acne healing? Maybe this had to do with vit D status somehow, or increased serotonin??

    Best of luck! : )

  11. K #
    14

    Re: autoimmune component to PCOS.

    That comment scared the bejeezus out of me, and sent me on frantic search for articles on it. Here are some confirming it:
    http://www.cyclediet.com/forums/view_topic.php?id=1245&forum_id=12

    Anyway, the good news is, in my understanding, that most autoimmune problems (at least in early stages) are curable through healing the gut lining. In Gut and Psychology Syndrome (GAPS diet) I read that, for example, simply avoiding gluten/casein will not help most celiacs eliminate most symptoms. The underlying issue is increased gut permeability due to damaged enterocytes allowing *undigested* proteins to enter blood stream and setting off autoimmune reactions. So perhaps starting off with paleo is good for PCOS, but it never gives your gut the rest it needs to sufficiently heal it, and fully recover from PCOS. Anyway, just some thoughts, not sure if you’ve covered the GAPS diet in your blog yet or not, but off I go to try this sometime soon…

    • pepper #
      15

      thanks kayla ;)

      I like your tip re: Vitamin D, though I’ve looked for “correlates” and haven’t really seen any, and also I’m getting a fair amount of sun right now but to no serious effect.

      I agree about autoimmunity. Eliminating dairy completely has really helped me a lot with my general well-being and my acne. However, it hasn’t done much for my PCOS, and I’ve been (practically) gluten free as well for years. I’m going to start doing iodine again, and I’m going to continue to include starches in my diet, and I think I will continue to inch forward. Honestly I’m rather giving up the battle at this point. If nothing happens again in a year I’ll give it another serious go. :)


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