Polycystic Ovary Syndrome (PCOS)

A cartoon drawing of a uterus holding on to ovaries

The following text uses the word “pussy” as defined by Pussypedia.

by Tarah Knaresboro

 

What’s going on?

Polycystic ovary syndrome, or PCOS, is a very common endocrine (meaning hormone-related) disorder for reproductive-aged people with ovaries. When you have PCOS, you typically have extra androgen hormones in your body, irregular periods, and insulin resistance (difficulty processing sugar).1

The name “poly” (many) “cystic” (having sacs or pockets) “ovary” (those lil’ egg and hormone storage spots on either side of the uterus) syndrome is a little misleading. You can have PCOS and not have cysts on your ovaries, and you can have cysts on your ovaries and not have PCOS.1

So how is PCOS diagnosed?

The criteria for a PCOS diagnosis have changed a fair amount over time. Medical researchers debate whether PCOS is one disorder or several because it looks very differently in different people.2 But for now, you’re usually considered to have it if you have two or more of the following:1

  • You’re having irregular periods, or bleeding between periods (a sign that your ovaries aren’t working as expected).
  • You have cysts on your ovaries (again, a cyst is a little sac or pocket).
  • You produce more androgen than normal (androgens are a group of hormones — the one you’ve probably heard about most is testosterone. Most bodies make at least some androgen, but people with testes make much more than people with ovaries on average).

Note: You’re excluded from this diagnosis if you have another androgen-related disorder.3 No double jeopardy!

Causes: While PCOS has been around for a long time, doctors still don’t fully understand what causes it. Scientists believe part of it is genetic — PCOS runs in families. And scientists also think your lifestyle and environment play some kind of role — possibly things like the nutrition and hormone exposure you got in the uterus or body weight changes.4 But exact answers remain unclear.

How does PCOS affect my body?

PCOS affects different bodies in different ways.4 Two people can both have PCOS and have a totally different set of symptoms, and symptoms can also change over time.5 You probably won’t have everything on this list, but here are a few of the most common symptoms:6

  • Tiredness and/or trouble sleeping
  • Low mood and/or anxiety
  • Hair growth in areas that aren’t as common for people with ovaries (like on the face, back, or belly)
  • Thinning hair on the head
  • Acne
  • Insulin resistance (when the body can’t process sugar very well)
  • Irregular periods and more difficulty becoming pregnant
  • Higher risk for heart disease, diabetes and sleep apnea (won’t help with diagnosis)
  • Higher risk for uterine cancer (won’t help with diagnosis)

Some of this might sound 😰, especially if you’re just learning about PCOS. But there are a lot of good treatments out there that can help with any symptoms that bother you, plus lower your risk for heart disease and cancer.

How common is PCOS?

Really common. It’s the most common endocrine condition in people with ovaries, affecting about 5 to 10% (some say even more).4,1,7  It’s not always diagnosed, though — a lot of people have it and don’t realize it. Many discover they have it when they see a doctor about difficulty getting pregnant.8

What can I do about it?

Although there is no cure for PCOS (even if you have surgery to remove your ovaries), there is a lot you can do to manage any symptoms that bother you.9 A good place to start may be to think through your own needs and preferences. Which symptoms bother you? Do you want to become pregnant, now or in the future? How do you feel about taking medications? What are your health goals? What do you want your body to look like?

If you’re seeing a doctor, they will want to know these things so you can come up with a treatment plan together. They’re the experts on the medicine, but you’re the expert on you, and both pieces are important to coming up with a plan that will work for your lifestyle.

To give you a lay of the land, here are a few common treatments and what they’re used for:

Birth control: This is one of the most common ways to treat PCOS.10 Birth control pills can help you have more regular periods, lower your risk for uterine cancer, and lead to less hair growth in uncommon areas.10 Hormonal intrauterine devices (IUDs), along with the patch and the ring, can also regulate periods and lower cancer risk (for everyone, not just people with PCOS).11 (All of these forms of birth control would of course lower your risk of pregnancy.)

Antiandrogen drugs: This type of drug (the most common one is called spironolactone) lowers the amount of androgen in your body. As a result, this stops some of the symptoms extra androgen causes, like hair growth in less common places, thinning head hair, and acne.12

Metformin: This is a medication that can help your body better process sugar if you have insulin resistance.13 It can sometimes be a good option to help you have more regular periods for people who don’t want to take birth control, but it isn’t recommended for everyone.

Infertility treatment: If you’re interested in getting pregnant, there are a few therapies that can help with this. What they usually do is cause the ovaries to release more eggs, boosting your chances of getting pregnant.14

Depression/anxiety treatments: The mental aspects of PCOS can be exhausting, especially if you’re just finding out you have a health condition. And these aspects deserve attention, too. Aside from improving your quality of life, treating depression and anxiety can have a big impact on your physical health — for one thing, it’s hard to manage a health condition (take medications, eat differently, etc) when you aren’t feeling your best.15 Some people may treat depression or anxiety through therapy, medications, journaling, stress reduction techniques like meditation and yoga, or a mix. Everybody is different, so it’s all about figuring out what makes your mind feel good.

Finding community: For many people, it helps to hear from others who are going through the same thing. Online community forums can be a good way to find tips on dealing with PCOS symptoms, or to simply feel less alone. (Unfortunately, most of this community centers around cis women, although there are a few sites with information specific to trans men or gender nonconforming people.)

Sleep treatment: Not feeling rested is another one of those things that just makes everything else harder. Since people with PCOS are more likely to have a condition called sleep apnea, some people choose get tested for this.16 You can also try to improve your sleep in other ways, like going to bed at a more regular time, drinking enough water before bed, or drinking less caffeine late in the day.17

Lifestyle changes: And now, dear readers, for the diciest yet possibly most powerful treatment option…lifestyle change. Odds are good that if you talk to a doctor about PCOS, they’ll recommend some form of lifestyle change, either on its own or along with another treatment. That’s because the way you live your day-to-day (like the foods you choose to eat or how much exercise you get) can have a really big impact on PCOS. Some studies show changing your diet can help with a wide range of symptoms like period regularity, fertility, mood, risk of getting a heart condition, risk of getting diabetes, and overall quality of life.20

Weight loss? But—doctors will likely also specifically recommend weight loss for PCOS if you are overweight according to their metrics. And this recommendation is just.so.complicated. Yes, there’s evidence that lowering your body weight can help with some symptoms of PCOS (there is also some disagreement about the exact relationship between weight and PCOS).21,22 But losing weight long-term is very, very difficult. In fact, when a doctor recommends weight loss, not only is it unlikely to be helpful, it may actually worsen weight-related stigma and stress. According to a 2010 article in Nutrition Journal, “Concern has arisen that this weight focused paradigm is not only ineffective at producing thinner, healthier bodies, but also damaging, contributing to food and body preoccupation, repeated cycles of weight loss and regain, distraction from other personal health goals and wider health determinants, reduced self-esteem, eating disorders, other health decrement, and weight stigmatization and discrimination.”23

Focusing less on weight and more on body positivity and healthy behaviors (like through a movement called Health at Every Size may be a much better way to improve your health.23 Making a choice not to attempt weight loss can be difficult when many cultures and many doctors discriminate against fat people.24 (Plus when there’s a multi-billion dollar diet industry in the US alone tries to tell you that changing your body shape is the key to health and happiness…) But you have a right to do what you feel is best for you and your body.

Getting started with a health behavior change

If you decide to try some form of lifestyle changes (whether you’re attempting weight loss or not), here are a few behaviors that are shown to help people with PCOS:

  • Eating low-glycemic foods.25 (Foods that are less likely to spike your blood sugar.) You can find all sorts of PCOS food guides online if this is something you’re interested in. Check out the resources section for an example.
  • Getting more physical activity.26
  • Lowering the amount of alcohol you drink.27
  • Smoking less (or quitting) if you smoke currently.27

If you do attempt some kind of lifestyle change, it’s best to start slowly instead of trying to change everything at once. Pick one small thing to try first, and when that’s become a habit, add another. And keep in mind that changing behaviors is difficult—so give yourself some grace when you mess up. You’re more likely to succeed long term if you avoid blaming yourself (“I have no willpower!” “I’m never going to get this!”) and instead simply tell yourself that your strategy needs some editing (“Maybe if I make myself a playlist, I’ll be more motivated to go for a walk”).28,29

A note for trans men or anyone taking/considering taking testosterone

PCOS might be more common among trans men who haven’t started testosterone therapy.18 It’s unfortunate that, like with many areas of scientific study, research and treatment focus primarily on cis people. But there is some research that shows people can successfully take testosterone therapy without making metabolic symptoms of PCOS (like diabetes risk) worse. One study showed that taking additional testosterone did not lead to worse PCOS symptoms like high blood sugar, high cholesterol, or higher diabetes risk among transgender men.18,19 (Taking testosterone may, however, lead to more acne, thinning head hair, and hair growth on the face and body.)

Bottom Line

Especially if you’re new to PCOS, getting used to having a lifelong condition and sorting through all the treatment options can be overwhelming. And if, like many people, it took a while for your symptoms to get diagnosed, you may be just plain exhausted with the healthcare system. This is normal and very understandable.

But there is a good chance that, in time, you can find a way to treat symptoms that bother you. Go at a pace that feels right to you, and if you’re talking with a doctor, stay in touch about what is or isn’t working. You may need to try a few different things before you find a plan that works well for your life and needs. Although it may not always be easy, it is possible to live a full and happy life with PCOS.

Author’s Dedication: To my brilliant Virgo-eyed editor, may she live long deleting ignorance.

A Note on Forums: As you know, community forums can contain wonderful solidarity and important perspectives that don’t make it to academic journals, but can also contain negativity and inaccuracies. Seek out the resources that feel right for you.

Sources

  1. Hart R, Hickey M, Franks S. “Definitions, prevalence and symptoms of polycystic ovaries and polycystic ovary syndrome.” Best Practice & Research Clinical Obstetrics & Gynaecology. Volume 18, Issue 5, (2004): 671-683. <https://www.sciencedirect.com/science/article/pii/S1521693404000914>.
  2. Franks, Stephen. “Polycystic Ovary Syndrome.” The New England Journal of Medicine. 333(13). (1995): 853. <6/NEJM199509283331307>.
  3. Goodarzi M, Azziz R. “Diagnosis, epidemiology, and genetics of the polycystic ovary syndrome.” Best Practice & Research Clinical Endocrinology & Metabolism. 20(2). (2006): 193-205. <https://www.sciencedirect.com/science/article/abs/pii/S1521690X06000224>.
  4. Mohammad M, Seghinsara A. “Polycystic Ovary Syndrome (PCOS), Diagnostic Criteria, and AMH.” Asian Pacific Journal of Cancer Prevention. 18 (1). (2017): 17-21. <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5563096/>.
  5. Welt C, Carmina E. “Lifecycle of Polycystic Ovary Syndrome (PCOS): From In Utero to Menopause.” Journal of Clinical Endocrinology & Metabolism. 98 (12). (2013): 4629-4638. <https://academic.oup.com/jcem/article/98/12/4629/2834024>.
  6. Norman R, Dewailly D, Legro R, Hickey T. “Polycystic Ovary Syndrome.” The Lancet. 370(9588). (2007): 685-697. <https://www.sciencedirect.com/science/article/pii/S0140673607613452>.
  7. Setji T, Brown A. “Polycystic Ovary Syndrome: Update on Diagnosis and Treatment.” The American Journal of Medicine. 127(10). (2014): 912-919. <https://www.sciencedirect.com/science/article/pii/S0002934314003568>.
  8. Dunaif A, Fauser B. “Renaming PCOS — A Two-State Solution.” The Journal of Clinical Endocrinology & Metabolism. 98(11). (2013): 4325-4328. <https://academic.oup.com/jcem/article/98/11/4325/2834812>.
  9. Imborek K, Graf E, McCune K. “Preventive Health for Transgender Men and Women.” Reproductive Medicine. 35 (5). (2017): 426-433. <https://www.thieme-connect.com/products/ejournals/html/10.1055/s-0037-1604457>.
  10. Chan KJ, Liang JJ, Jolly D, Weinand JD, Safer JD. “Exogenous Testosterone Does Not Induce Or Exacerbate The Metabolic Features Associated With Pcos Among Transgender Men.” Endocrinology Practice. 24(6). (2018): 565-572. <https://www.ncbi.nlm.nih.gov/pubmed/29624102>.
  11. Azziz R, Chang W, Stanczyk F, Woods K. “Effect of Bilateral Oophorectomy on Adrenocortical Function in Women with Polycystic Ovary Syndrome (PCOS).” Fertil Steril. 99(2).(2013): 599-604. <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3563739/>.
  12. American College of Obstetricians and Gynecologists. “Polycystic Ovary Syndrome (PCOS) FAQ.” (2017): <https://www.acog.org/Patients/FAQs/Polycystic-Ovary-Syndrome-PCOS>.
  13. Benshushan A, Paltiel O, Rojansky N, Brzezinski A, Laufer N. “IUD use and the risk of endometrial cancer.” European Journal of Obstetrics & Gynecology and Reproductive Biology. 105(2). (2002): 166-169. <https://www.sciencedirect.com/science/article/pii/S0301211502001537>.
  14. Archer JS, Chang J. “Hirsutism and acne in polycystic ovary syndrome.” Best Practice & Research Clinical Obstetrics & Gynaecology. 18(5). (2004): 737-754. <https://www.sciencedirect.com/science/article/pii/S1521693404000975>.
  15. Nardo LG, Rai R. “Metformin therapy in the management of polycystic ovary syndrome: endocrine, metabolic and reproductive effects.” Gynecological Endocrinology. 15(5). (2009): 373-380. <https://www.tandfonline.com/doi/abs/10.1080/gye.15.5.373.380>.
  16. Tannus S, Burke YZ, Kol S. “Treatment strategies for infertile polycystic ovary syndrome patient. Womens Health. 11(6). (2015): 901-12. <https://www.ncbi.nlm.nih.gov/pubmed/?term=26626234%5Buid%5D>.
  17. Moussavi S, Chatterji S, Verdes E, Tandon A, Patel V, et al. “Depression, chronic diseases, and decrements in health: results from the World Health Surveys.” The Lancet. 370(9590). (2007): 851-858. <https://www.sciencedirect.com/science/article/pii/S0140673607614159>.
  18. Kahal H, Kyrou I, Tahrani AA, Randeva Hs. “Obstructive sleep apnoea and polycystic ovary syndrome: A comprehensive review of clinical interactions and underlying pathophysiology.” Clin Endocrinol (Oxf). 87(4). (2017): 313-319. <https://www.ncbi.nlm.nih.gov/pubmed/?term=28640938#>.
  19. Brown FC, Buboltz WC, Soper B. “Relationship of Sleep Hygiene Awareness, Sleep Hygiene Practices, and Sleep Quality in University Students.” Behavioral Medicine. 28(1). (2010): 33-38. https://www.tandfonline.com/doi/abs/10.1080/08964280209596396>.
  20. Thomson RL, Buckley JD, Lim SS, Noakes M, Clifton PM, et al. “Lifestyle management improves quality of life and depression in overweight and obese women with polycystic ovary syndrome.” Fertility and Sterility. 94(5). (2010): 1812-1816. <https://www.sciencedirect.com/science/article/pii/S0015028209039806>.
  21. Clark AM, Ledger W, Galletly C, Tomlinson L, Blaney F, et al. “Weight loss results in significant improvement in pregnancy and ovulation rates in anovulatory obese women.” Human Reproduction. 10(10). (1995): 2705-2712. <https://academic.oup.com/humrep/article-abstract/10/10/2705/725410?redirectedFrom=fulltext>.
  22. Kataoka J, Tassone EC, Misso M, Jaham AE, Stener-Victorian, et al. “Weight Management Interventions in Women with and without PCOS: A Systematic Review.” Nutrients. 9(9). (2017): E996. <https://www.ncbi.nlm.nih.gov/pubmed/?term=PMC5622756>.
  23. Bacon L, Aphramor L. “Weight Science: Evaluating the Evidence for a Paradigm Shift.” Nutrition Journal. 10(9). (2011): 69. <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3041737/>.
  24. Phelan SM, Burgess DJ, Yeazel MW, Hellerstedt WL, Griffin JM, van Ryn M. “Impact of weight bias and stigma on quality of care and outcomes for patients with obesity.” Obesity Treatments/Outcomes. 16(4). (2015): 319-326. <https://onlinelibrary.wiley.com/doi/full/10.1111/obr.12266>.
  25. Marsh KA, Steinbeck KS, Atkinson FS, Petocz P, Brand-Miller JC. “Effect of a low glycemic index compared with a conventional healthy diet on polycystic ovary syndrome.” The American Journal of Clinical Nutrition. 92(1). (2010): 83-92. <https://academic.oup.com/ajcn/article/92/1/83/4597432>.
  26. Moran LJ, Harrison CL, Hutchison SK, Stepto NK, Strauss BJ, et al. “Exercise Decreases Anti-Müllerian Hormone in Anovulatory Overweight Women with Polycystic Ovary Syndrome – A Pilot Study.” Hormone and Metabolic Research. 43(13). (2011): 977-979. <https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0031-1291208>.
  27. Norman RJ, Davies MJ, Lord J, Moran LJ. “The role of lifestyle modification in polycystic ovary syndrome.” Trends in Endocrinology and Medicine. 13(6). (2002): 251-257. <https://www.sciencedirect.com/science/article/pii/S1043276002006124>.
  28. Gilbert P, Procter S. “Compassionate mind training for people with high shame and self‐criticism: overview and pilot study of a group therapy approach.” Clinical Psychology and Psychotherapy. 13(6). (2006): 353-379. <https://onlinelibrary.wiley.com/doi/abs/10.1002/cpp.507>.
  29. Strecher VJ, DeVellis BM, Becker MH, Rosenstock IM. “The Role of Self-Efficacy in Achieving Health Behavior Change.” Health Education & Behavior. 12(1). (1986):. <https://journals.sagepub.com/doi/abs/10.1177/109019818601300108>.

This article was previously published in Pussypedia and is reposted with permission.