My PCOS Story

(Warning, this post contains some graphic descriptions of female bodily functions. If you’re easily offended by such things, you might want to consider not reading any further.)

By age 8 I was struggling with my weight, and by my early teens it was evident there was something amis hormonally. I started menstruating around the same time as all my friends, but then I stopped for several years. Yes, years. For some reason this didn’t seem to raise any flags with my health care providers. I had horrible cystic acne starting right around age 13, on my face and also on my chest and back. Two courses of Accutane barely made a dent. I started growing hair in places girls aren’t ‘supposed’ to grow hair (like my chin). My weight was all over the place and by the time I graduated from high school I was clinically obese. My periods, once they started up again, were beyond irregular. I’d get them a few weeks apart for a while, and then not again for 6 or 8 months.

For some reason, I thought this was all normal.

A young Go Kaleo, already exhibiting visible signs of hormonal dysfunction.

My 20’s were much of the same, with the addition of chronic yeast infections, migraines, thinning hair and crippling bouts with anxiety and depression. My doctors would periodically put me on birth control to try to regulate my periods, and antidepressants to combat the depression. I continued to struggle with my weight and my cystic acne, sometimes seeing some mild success, but mostly just frustration. As I got closer to 30, my blood pressure started to read high here and there, although not consistently.  When I asked my doctors about all this, they would say something about exercise and weight loss, but to me it felt like a brush off.

I got pregnant quite unexpectedly at 30, and for a few years my own health took a back seat. I suffered some pretty intense PPD after my first baby, but otherwise I actually have very little recollection of those first two years of motherhood. I don’t think I ever got a checkup, and acne and my weight were really low on my priority list at the time. I felt like crap all the time, I can tell you that.

When I got pregnant with my second baby, all hell broke loose. The beginning of the pregnancy was uneventful, but the second half was awful. I gained weight way too fast. I swelled up like a water balloon. I developed pre-eclampsia and had to go to the hospital for monitoring twice a week for the last several weeks of the pregnancy.

After my second daughter was born, I had problem after problem with my milk supply. My weight continued to go UP. My blood pressure remained high. I started losing hair in clumps, specifically on the front of my head, in the typical male-pattern baldness. I had an epic case of PPD, complete with daily panic attacks. My period returned about 6 weeks post partum, but it was crazy irregular, and heavier than it had ever been and I started passing chicken-egg sized clots. In 2006 I had a breast ultrasound to diagnose some recurrent pain I’d been experiencing. It turned out to be cysts. In 2007, another ultrasound to diagnose recurrent pelvic pain showed multiple ovarian cysts. I reached my highest weight of 231 pounds.

I’d started to put the pieces together and asked my doctor about the possibility that I might have PCOS. She was hesitant to give me a formal diagnosis because I didn’t appear to have infertility issues, and as she explained it, the only good a diagnosis would do would give her the option to prescribe fertility treatments, and since I didn’t want any more babies anyway, there wasn’t really a point of getting a formal diagnosis. She told me to exercise and lose weight. I felt brushed off again. I ate pretty healthy. I was active. I walked a lot, and chased my kids around I told her (and myself). I wanted an answer, a treatment, but she was just giving me the ‘exercise and lose weight’ brush off. I felt frustrated and hopeless.

So, like many women reading this, I started doing some research on my own. Every time I researched one of my symptoms, the trail I picked up led to the same place: metabolic syndrome and insulin resistance. Through my research, I identified other symptoms I had that I’d never thought could be connected to my hormonal issues, especially my panic attacks, which I’d determined were probably being triggered by wild blood sugar swings. I had virtually every symptom of metabolic syndrome and insulin resistance in the book, and in 25 years no one had put the pieces together.

So, since all trails were leading back to insulin resistance, I decided to look a little deeper into it. I wanted to know WHY I was having these symptoms, not just how to ameliorate them. WHY was my hormonal system all whacked out (insulin is a hormone)? As a critical thinker and skeptic, I was pretty good at spotting dubious sources. A lot of the ‘information’ I ran across in my internet research was actually thinly veiled advertising for supplements and diet books. In fact, I was sort of appalled by how much of that I ran across. I started to identify credible sources, and I followed the science. What I realized was that all of the established, reputable medical and scientific organizations were in a fair bit of agreement on the cause of insulin resistance. The common theme I kept running across was energy imbalance (and its role in obesity), inactivity, and genetics. According to Johns Hopkins, Metabolic Syndrome and IR are caused by “…obesity, coupled with a sedentary lifestyle…[as well as] genetic variations in a person’s ability to break down lipids (fats) in the blood.” The Mayo Clinic says “Some people may be genetically prone to insulin resistance, inheriting the tendency from their parents. But being overweight and inactive are major contributors.” The NIH and NDIC are very clear that “scientists have identified specific genes that make people more likely to develop insulin resistance and diabetes. Excess weight and lack of physical activity also contribute to insulin resistance.” Notice none of the resources I link to are bloggers or alternative practitioners selling remedies and ebooks. I like science. I looked for science, and favored science from reputable sources. I found study after study after study after study after study after study after study after study after study after study after study after study (I have more) showing that physical activity levels are inversely correlated with the incidence of insulin resistance, and that insulin sensitivity is improved with physical activity. The science was pretty clear: genetics, energy imbalance and obesity, and inactivity are the drivers of insulin resistance. And all that advice to lose weight and exercise my doctor had given me wasn’t a brush off. She was right. She was giving me the evidence-based solution to my problems, and I was brushing HER off.

I don’t have a huge genetic factor. A few of my grandparents and aunts and uncles developed diabetes when they were older, but my parents and siblings are so far relatively metabolically healthy. I was obese though, and I was obese for one reason: I ate more food than my body needed. And when I was honest with myself, I wasn’t really that active. Yeah, I walked a little, but it wasn’t really as much as I kept telling myself (and my doctor). And I certainly didn’t walk vigorously enough to raise my heart rate or break a sweat. In fact, when I was really, truly honest with myself, I had to admit that I spent most of every day sitting down. So, at 35, I decided to actually do what my doctor had told me to do all along: lose weight and exercise.

I ate more vegetables and protein, but I never restricted carbs. Mostly because I’d tried it before and hated it. And besides, the EVIDENCE pointed to inactivity, not carbs, as the driver of IR. The main change I made was to track my calories, keeping them at a level that would support my activity but allow for gradual weight loss. I’ve talked elsewhere about how I determined the proper energy balance that would allow me to lose weight gradually and keep my metabolism from tanking. It took me about 6 months to get that figured out. I explain what I mean by ‘energy balance’ in this video:

It also took me about 6 months to get into an exercise routine. Those first six months were frustrating and frequently discouraging. I lost about 15 pounds, which was really disappointing to me considering how much effort I was putting in. I had some small improvements in some of my symptoms, but I still felt like crap most of the time. I nearly quit so many times. But I kept telling myself that I needed to be a good role model for my daughters, who I knew would follow in my footsteps, and I wanted them to be footsteps in the direction of health and self-care. So I kept going.

That six month mark was really a turning point, for a couple reasons. A BIG one was that I started weight lifting. I have since done more research and decided that weight lifting/strength training is VITAL to improving insulin sensitivity because muscles, very simply, behave very differently, metabolically, than fat. Muscles suck all that sugar out of the blood and USE it. I also had improved my endurance and conditioning to a point that I was able to perform the amount and intensity of physical activity that I think was necessary to really improve my metabolic function. When I was just doing cardio, the magic number seemed to be 60 minutes a day of an activity that kept my heart rate elevated (once I added a significant amount of muscle mass from strength training, I could get away with much less, these days I typically average half that). I also got my diet ‘dialed in’, in that I settled into an calorie and nutrient intake that gave me the nutrition and energy I needed but wasn’t more than my body could use in a day. Over the next six months I dropped about 50 pounds. I also saw my periods normalize into a steady 28 day cycle for the first time in my LIFE. I never got another panic attack or migraine after that. To this day. About a year in I realized my hair had started to grow back, fuller than it had been in my adult life, and over the next year my acne had all but disappeared save for a little breakout before my period. My blood pressure has been optimal at every checkup since then. My HDL, which has been hovering in the high 30’s before I started all this, is now in the high 60’s. My triglycerides are routinely in the 30s and 40s. My glucose is ALWAYS in the low 80’s no matter what I’ve eaten or not eaten beforehand. In short, I am, for the first time since I was 8 years old, metabolically healthy.

And I did it by following my doctor’s advice: lose weight and exercise.

Fancy that.

 

 

(***I am not a doctor. AS ALWAYS, if you suspect you have a metabolic problem, please find a qualified, reputable medical professional to work with, and never, ever, EVER rely on bloggers for your medical information and health care.***)

48 thoughts on “My PCOS Story

  1. Thank you for doing what you do. The authenticity makes me practically weepy. I believe with everything in me that the hell and subsequent roads to healing and wholeness I’ve lived in my life are not just for me, but for my community. We are all in this boat together, it’s plain wrong to not stretch out a hand to our fellow. You have no agenda, you aren’t out to rob folks, it is clear to me and my gut that you simply are telling your story to help others. And not without risk….so again, thank you. Bless you.

  2. Thank you for writing this up for us. I was just recently diagnosed with PCOS even though I too have had babies and do not want any more – so infertility is not an issue – but clearly, I have a problem.

  3. Thank you for being honest and transparent; for being intelligent, following the science, and using critical thinking; for trusting your gut, but backing up anecdotal evidence with studies and facts; for offering common sense as a tool of personal responsibility; and for sharing your story with such fair-mindedness, compassion and courage. Thank you for putting the trolls in their place, and for cheering on the wounded and suffering. I am so pleased to have discovered your blog in the midst of all the product-shilling, misogyny, and New Age flakes. You rock, and I’m so pleased to be a fan.

  4. Kaleo,

    Thanks again for sharing your story and giving others hope that we can overcome this disease too. I hope you don’t mind me asking, but were you put on BCP while you were diagnosed with PCOS?

    • I think I was in between the nuvaring and an IUD when I had the diagnosis conversation with my doctor. I can’t remember exactly though.

  5. That could be my story. Although at about 16 I was very active and ate very little. (Not on purpose I just had better things to do) so my weight plummeted to “normal”. I don’t get acne, I get boils. On my thighs and bum. I have 2 kids seperated by 5 1/2 years. We weren’t trying so it seemed normal. Evidently the calendar method isn’t that successful for the average couple. I’m 34 and was diagnosed after relentlessly Dr after Dr trying to figure out why I was turning into a boy. My estrogen levels although I am overweight are that of an 80 year old and my testosterone is low T… for a man!! I’m sure you hear thousands of stories, but I just have one question. How? You do inspire me daily, but I feel like crap!! I don’t want to work out when I feel like crap. I know that working out makes me feel better, but I don’t have the energy. Is it a mental hurdle? Did you have it also? Just wondering…

    • It IS a mental hurdle. During those early months, I made *getting to the gym* my priority. There were so many days that I would get there and just walk on the treadmill for a few minutes, or even just sit in the jacuzzi. But I got there. That was so key. Most of those times, if I just got started, I’d feel better within a few minutes, and I’d keep going. But I gave myself permission to stop after five minutes, and that seemed to make it more doable.

      In the beginning, don’t pressure yourself to exercise perfectly. Just make a commitment to making time. You can work on exercise quality once you have the habit of making time in place. 🙂

  6. Thank you so much for posting this! Now more than ever you give me hope! I started following you on Facebook because I love your honest, no nonsense posts on health and fitness, but now there is a whole other reason for me to pay attention. This could be my story! I suffered from secondary infertility though and this much cried about and hoped for baby (took 4 years) has pushed me towards better health. Thanks for talking about the ugly side of PCOS. I hope that I will have your success. I’m willing to put in the time and effort. 🙂

    • You can do it, Natalie. Just be patient and stay the course. It’s certainly not a fast process, and the slowness can be so discouraging. That’s why I’m here though, to tell my story as someone who stuck with it in spite of the slowness, and encourage others to just keep going. <3

  7. Thanks for sharing your story. I have always been on a yo yo with my weight and since I have had kids its stayed in the high range never being able to break past a certain number. I had ovarian cysts right after starting my period when I was 13 took a couple years and lots of doctors to trace it down. However it affected my trys at pregnancies. Had one great pregnancy then a ectopic and then a very risky third pregnancy and I opted to get my tubes tied at the age of 26. Doctors don’t seem to realize how things like this take a toll on us mentally and physcially. Really wish they would do more studys and research and have it better known. I have several friends with PCOS and endimetriosis and ovarian cysts but we are all left with unanwsered questions.

    • Yes, I don’t think it gets the attention it deserves, this kind of stuff can be emotionally devastating, can’t it? More than anything, I wish my doctor had spent more time explaining WHY exercise was so important, and given me better instructions than ‘lose weight and exercise’, although I admit she was giving me good advice all along. I wish I’d understood the gravity of it.

      Maybe that’s why I’m here though. 🙂

      • They definatly don’t understand the emotional toll at all and no one really does unless they have been thru something like it themselves. You go on feeling like you didn’t do something right. Wish my dr would have told me more about exercise helping when I was in my teens it would have probably helped a ton!

        • I was diagnosed with PCOS when I was 16. I hadn’t had a period for a few months (which I LOVED!) but figured it wasn’t okay, so I went to see my dr. Only now can I fully appreciate all the work/tests she ran to diagnose me. Because of her, I know my body better and when a new doctor dismisses my illness, I drop him/her like a hot brick. Life is too short to listen to BS! Now I have a Nurse Practitioner who specializes in PCOS and is my constant source for help and advice. All this to say, find a doctor who will help YOU find out how to make YOU feel better. Having a PCOS diagnosis always gave me comfort and helped me not go crazy from all these cuckoo symptoms.

  8. Thank you for sharing your experiences and insights, they are so interesting, yet refreshing. I am in the process of being tested to confirm a PCOS diagnosis as, unusually I am not overweight but I do manage my diet very carefully. I am determined that when my diagnosis comes through I will manage it through diet and exercise. My challenge however will be to healthily increase my calories to sustain a more vigorous exercise regime. If you have any insights into this more unusual PCOS challenge I would love to hear them:)

    • I have lots of posts here about putting together a nutritious eating plan. Are you working with a Registered Dietician? That might be a really good place to start!

  9. Pingback: My PCOS Story | Go Kaleo | Male Pattern Baldness Cure

  10. Thank you so much for sharing your story. I have to say it was as if I was practically reading my own story. I’m actually off to have another check up with my functional medicine doctor to nab to see why I’m just *not* losing, but after reading this, I need to get my arse in gear and exercise. I have a hard time, admittedly, because when I do exercise, my “kick-back” can be fierce with really sore muscles and slow recovery. I’m not doing anything crazy either. Maybe daily walks to start with, then build it all up incrementally.

    • Yeah, getting started is brutal. It is so hard. It completely changed my health though, it is so worth it. Good luck!

  11. I love this, thank you for sharing! I had an ovarian cyst the size of a large grapefruit removed back in the nineties…I never had a formal diagnosis of PCOS, but seeing a picture of my cyst after surgery was enough to get my butt in gear and get healthy! This will truly date me, but I was very much inspired by Susan Powter, she was the go kaleo of her time…feminist, body positive, whole organic real food, food that came from the earth, eating enough food…like vats of food, never depriving yourself of calories, moving every day doing something you love, no BS approach to living and just fucking everything else, the diets, the gurus, it’s all bullshit…eat, breathe, move and think…that’s what you need to do and I did it and I have felt awesome for the past 20 years. I love her and now I love you for the same message…keep up the great work!!!

  12. Thanks for sharing! I was diagnosed with PCOS and MTHFR last year and had surgery in Feb. to remove Stage 3 Endo along with a few cysts. The hardest part for me has been the lack of energy and anxiety but it’s definitely true that if you stay active you feel better. I also have 2 children but have suffered from recurrent miscarriages since giving birth to my youngest son. There’s not a day that goes by that I’m not reminded that my hormones aren’t right, but I’m working on it. One day at a time…

  13. Thank you for sharing your story. I wasn’t diagnosed with PCOS until I decided I wanted to have children and couldn’t. Throughout my teens and twenties, I to went years without having a period, gaining weight and struggling with depression. Doctors would tell me, you’re just very stressed and need to exercise more! Eventually I found a doctor who wanted to help me get pregnant and quickly diagnosed me with PCOS. Thank goodness! My struggle now is keeping the doctors interested in my well being now that I no longer want children. I started lifting weights, watching what I eat and just really becoming an advocate for my own health. At 40 I am the healthiest I have ever been. I refuse to give up !

  14. Thank you so much for this post which has given me hope. I have been running to doctors since my teens (i am now 31) because of my gradual scalp hair loss which is now embarassing and noticeable. Irregular periods (I would miss them for 3 – 4 months at a shot) were just brushed off as normal and ‘runs in the family’ as my mom is the same. All thryroid and female hormone tests came normal and no one thought to check for PCOS until last year thanks to hirsuitism. The doctor put me on BCP and Metformin which had me in PMS mode everyday instead of the lucky week each month and did nothing to stop the hair loss. I have spent thousands of dollars on health treatments, nutrition plans, etc.

    Amber, I would really appreciate if you could advise what you eat now that you are a vegetarian. I’ve recently zoned in on the Paleo diet but since i don’t eat meat or poultry (I cannot source pasture raised and would rather not eat anything than eat hormone and antibiotic injected animals), my options are fish and eggs for protein. They advise against grains, legumes, etc which kind of restricts things further. I would really like to hear your take on diet from a PCOS perspective.

    Also, besides strength training, what do you think about interval training, circuit training or tabata practices? These work much faster at getting one’s heart rate elevated. I have been practicing this for around 30 mins 6 days a week in my home along with cleaning up my diet and have lost around 5 kgs.

    Thanks so much.

  15. Thank you so much for this post which has given me hope. I have been running to doctors since my teens (now 31) because of my gradual scalp hair loss which is now embarassing and noticeable. Irregular periods (I would miss them for 3 – 4 months at a shot) were just brushed off as normal and ‘runs in the family’ as my mom is the same. All thryroid and female hormone tests came normal and no one thought to check for PCOS until last year thanks to hirsuitism. The doctor put me on BCP and Metformin which had me in PMS mode everyday instead of the lucky week each month and did nothing to stop the hair loss. I have spent thousands of dollars on health treatments, nutrition plans, etc.

    Amber, I would really appreciate if you could advise what you eat now that you are a vegetarian. I’ve recently zoned in on the Paleo diet but since i don’t eat meat or poultry (I cannot source pasture raised and would rather not eat anything than eat hormone and antibiotic injected animals), my options are fish and eggs for protein. They advise against grains, legumes, etc which kind of restricts things further. I would really like to hear your take on diet from a PCOS perspective.

    Also, besides strength training, what do you think about interval training, circuit training or tabata practices? These work much faster at getting one’s heart rate elevated. I have been practicing this for around 30 mins 6 days a week in my home along with cleaning up my diet and have lost around 5 kgs.

    Thanks so much.

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  17. Pingback: Inactivity and Metabolic Health II | Go Kaleo

  18. You’re so beautiful. And I’m not referring to your bod, although it ROCKS. Wish I could hug you. For realz. I love people who have could justifiably spend their lives wallowing in self pity and misery and don’t. How? They just stop doing what isn’t working and start doing something else. Simple.

  19. I know I’m late to the party on this post, but only stumbled across your blog tonight. Thank you so much for telling your story. I have PCOS, and it’s wonderful to know that there’s actual hope out there for reversal of the symptoms. I really appreciate all of the studies you linked to as well. Hope this is ok – I put a link to this post up on my site. I think my readers should know about you 🙂 Keep up the great work! It’s much appreciated!

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  21. I have pcos and I’m 18. I exercise a ton and eat as clean as possible. I really want to get more into weight lifting. How did you get into in exactly? Thanks!

    • Depending on your symptoms: The other thing to consider at younger ages and VERY active is not PCOS but hypothalamic dysfunction related to exercise or undereating. Irregular periods, being thin, and no significant body hair issues would be more suggestive of that. PCOS usually (usually but not always) is associated with some degree of being overweight and signs of excessive male hormones: acne, body hair (face and body) and balding.

  22. This is great information. I love hearing how people apply real science into their lives and create real change and healing. Did the hair on your chin go away along with all of those other symptoms?

    • My understanding is that once those follicles are ‘turned on’ there’s no turning them off. I got electrolysis several years ago to deal with the hair. 🙂

  23. Wow! I haven’t been diagnosed with PCOS but every description sounds like mine! I would go to the doctor and he would tell me that that was just my pattern of menstruation and that’s just ridiculous…one time I didn’t get my period for almost 2 years and that is NOT normal. I’ve lost 50 lbs and I’ve had a regular cycle every month for a year now its incredible I’ve never been regular. The only things is that my hair is still not growing back 🙁

  24. So powerful. I also have PCOS and it was undiagnosed for YEARS!! I was tested multiple times while on the pill so the blood work came out “normal”. And the one thing that amazes me now…that not ONE doctor ever told me I was overweight. Me, at 5’4″ and 220 pounds!

  25. I should have looked back at my life as a whole, not what is going on right now. 3 times I was pregnant and never got further than 12 weeks. When I was in my 20’s , there were months with no periods and that went on for years. Then 39’s came and very bad periods and and ectopic and molar pregnancy. My husband left me for a healthy woman in hopes of having kids. I met someone 8 years later and pregnant 2 more times…same story…no kids. My thyroid is not working for over 30 years and I have a history of cysts, diabetes and an auto immune disease. You are on to something and I want to add our food may be to blame. I’m trying to eat clean, in addition to weight training and exercise. No more processed junk. This is way out there, but Our food has turned into population control as it affects the thyroid on so many levels.

  26. Pingback: Reference Page: Go Kaleo | Taper Strength Training

  27. What you eat and did you follow the paleo diet… Dod you have the rregullar menstrual period after changed your diet.. 🙂

  28. Pingback: Beautiful Skin in My 40′s | Go Kaleo

  29. Amazing story! I know how it is when you put so much time and effort into weight loss but it goes so slowly or it doesn’t work out too well. While I was reading your lines, I was thinking I felt the same way as a teen. I always knew something was wrong with me but never understood what. They had no Internet back then to look it up. When I went to the doctor, they never found anything in my teen years. It felt like I was the only girl with this issue and got so isolated since I didn’t know anyone with the same problem…they say approx. 10% of women suffer from PCOS but in your micro-environment, you don’t have hundreds of people to know a few with PCOS. I had like 14 girls in my HS class. If 10% of them had PCOS, that would only be me. People probably thought I ate so much. People who see the chin hair (because unfortunately, it’s usually still there a bit no matter how often you remove it…) think you don’t take care of yourself or you’re a freak. They have no idea how much time you spend in front of the mirror getting rid of hair on a daily basis. PCOS sucks because women usually find out what their problem is after suffering from it for several years, or even decades but once you know it, it’s so much easier to fix it. Thank you for sharing your inspiring journey!

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