I don’t fault patients for finding the diagnosis of PCOS perplexing. It took me nearly 4 years of medical school to fully grasp it. September is PCOS Awareness Month and with 5 % of reproductive age women affected, we plan to bring you several posts this month on this often confusing diagnosis.
Polycystic Ovarian Syndrome is a misnomer. It is not an ‘ovarian syndrome’ at all. The root cause of PCOS is a combined genetic and metabolic issue. Women with PCOS do not react normally to insulin. When sugars hit their blood stream, their body requires extra insulin to process the sugar. The higher levels of insulin have several effects in different areas of their body, including messing with their ovaries. The insulin molecule is very similar in shape to another molecule that has receptors on the ovary. Insulin then falsely attaches to the ovary, causing it to release too much male hormone, leading to lovely features like acne, abnormal hair growth and even male pattern baldness in extreme cases. The extra male hormone gets converted to excess estrogen in the fat cells, which prevents ovulation. The excess insulin makes weight loss more difficult, which can lead to obesity.
Estrogen is the hormone responsible for creating the blood and nutrient rich lining of the uterus. A normal amount of estrogen makes a healthy lining for an embryo to implant. With PCOS, there is an elevated level of estrogen, creating excess tissue, leading to heavy, crampy periods. In extreme untreated cases, it can lead to precancer of the uterus.
It is much harder for women with PCOS to lose weight and keep it off, due to their body’s resistance to insulin. As they get heavier, the fat cells themselves secrete additional hormones that worsen the insulin resistance. Essentially, the more weight a woman with PCOS gains, the harder it is to loose the weight. This helps explain why 80% of women with PCOS are obese.
Some of you extra smart ladies are already thinking, “Isn’t extra insulin just like diabetes?” Yes and no. PCOS is in many ways a pre-diabetic condition. However, there has to be a genetic predisposition to PCOS as well. PCOS is caused by how a woman’s body reacts to the excess insulin. Not all diabetics have PCOS. Many diabetics will ovulate regularly and have no excess of male hormone, despite their elevated insulin. We also see that PCOS tends to run in the family. In studies of identical twins, if one twin has it, there is a 70% chance the other twin will have it as well. This leads us to think that the abnormal insulin metabolism is caused by an inherited genetic defect…yet another thing that we get to blame our mothers for.
Despite the hormonal imbalances going on in the body with PCOS, the ovary tries its best to ovulate. Much like the “Little Engine That Could” the ovary desperately attempts to make its eggs grow each month, but rarely will it mange to get an egg mature enough to fully ovulate. This leads to a swollen ovary with multiple tiny cysts of immature eggs (follicles). The PCOS ovary stays enlarged and swollen, but the ‘cysts’ associated with PCOS are multiple tiny cysts; not the large painful kind that women often need to be surgically removed.
I often see women for second opinions for PCOS. One doctor told them they had it, then another said that they didn’t. They are frustrated and want answers. However, PCOS is a clinical diagnosis, making it subjective. When your throat hurts, you go to the doctor. She thrusts a q-tip down your throat and runs a test. The test is straightforward: positive or negative. Alternately, PCOS is based on a collection of findings that can be supported by blood work, but there isn’t a definitive test.
To further add to the confusion, there are currently 3 sets of diagnostic criteria for PCOS floating around. Also, in Europe physicians put a lot more emphasis on ultrasound finding, while in the US clinicians look more at symptoms.
The most common definition in the US is the NIH {National Institutes of Health} criteria:
1. Irregular periods
2. Evidence of elevated male hormone (either lab work or symptoms)
3. Exclusion of other causes of elevated male hormone.
The classic patient with PCOS is overweight, with most of their obesity in their abdomen. Weight loss is extremely challenging due to their body’s insulin resistance. Their cycles are sporadic, every 2 to 3 months. They struggle with fertility due to their ovary’s inability to ovulate despite its best efforts. They get the added bonus of often needing to wax their chin way more than their friends. PCOS is a challenging condition but the good news is, it’s manageable. In my next post I will look at the different ways to manage your symptoms and a new natural therapy to help fertility.
Have you been diagnosed with PCOS? What questions do you hope we’ll answer for you as we participate in PCOS Awareness Month?
Your text is so wonderful, I took the freedom to translate it in my first language, french. I’m not a professional translator, but I made the very best to respect the essence of your text. I think this has to be spread to the world !
Le Syndrome des ovaires polykystiques (SOPK) simplifié
Je ne blâme pas les patient qui sont perplexes devant un diagnostic du SOPK. Ça m’a pris près de 4 ans d’études en médecine pour le comprendre complètement. […]
Le syndrome des ovaires polykystiques est en réalité un mauvais nom. Ce n’est pas un « syndrome ovarien ». La racine du problème du SOPK est une combinaison de problèmes génétiques et métaboliques. Les femmes qui souffrent du SOPK ne réagissent pas normalement à l’insuline. Quand le sucre atteint leur sang, leur corps demande plus d’insuline pour métaboliser le sucre. Le niveau d’insuline ainsi augmenté résulte en plusieurs effets dans différentes zones de leur corps, notamment au niveau des ovaires. La molécule de l’insuline a une forme très similaire à une autre molécule qui est reçue par les ovaires. L’insuline s’attache donc faussement à l’ovaire, causant celui-ci à relâcher trop de testostérone en réaction à cette molécule, menant à des symptômes très appréciés comme l’acné, une forte pilosité, etc. Les hormones masculines excédentaires se transforment en excès d’estrogène dans les cellules adipeuses, ce qui bloque l’ovulation. L’excès d’insuline rend la perte de poids trop difficile, ce qui peut mener à l’obésité.
L’estrogène est l’hormone responsable de créer le sang et les nutriments disponibles dans l’utérus. Une quantité normale d’estrogène crée un environnement propice pour l’implantation d’un embryon. Avec le SOPK, il y a une quantité trop élevée d’estrogène, créant un excès de tissus, menant à des règles pénibles et douloureuses. Dans des cas extrêmes et non traités, cela peut mener à un précancer de l’utérus.
C’est plus difficile pour une femme souffrant du SOPK de perdre du poids et maintenir un poids santé, en raison de la résistance de leur corps à l’insuline. À mesure qu’elles deviennent plus grosses, les cellules adipeuses sécrètent des hormones additionnelles qui aggravent la résistance à l’insuline. Essentiellement, plus une femme souffrant du SOPK prend du poids, plus difficile la perte de ce poids sera. Cela explique pourquoi 80 % des femmes avec le SOPK sont obèses.
Certains d’entre vous qui sont plus allumés vont peut-être penser : « Un surplus d’insuline, ce n’est pas comme du diabète ? » Oui et non. Le SOPK est, d’une certaine façon, une condition pré-diabétique. Cependant, il y a aussi une prédisposition génétique au SOPK. Le SOPK est causé par la façon dont le corps de la femme réagit au surplus d’insuline. Ce n’est pas toutes les femmes diabétiques qui souffriront du SOPK. Plusieurs diabétiques vont ovuler régulièrement et n’auront pas de surplus de testostérone, malgré leur niveau d’insuline élevé. Nous savons aussi que le SOPK a tendance à se transmettre dans la famille. Dans des études avec des jumelles identiques, si une jumelle l’a, il y a 70 % des chances que l’autre jumelle l’ait aussi. Cela nous amène à penser que la métabolisation anormale de l’insuline serait causée par un défaut génétique… une autre chose pour laquelle on peut blâmer nos mères !
Malgré le débalancement hormonal qui se produit dans le corps avec le SOPK, les ovaires essaient de faire quand même de leur mieux pour ovuler. Les ovaires essaient désespérément de faire grandir leur œuf chaque mois, mais arriveront rarement à rentre un œuf assez mature pour mener à l’ovulation. Cela crée un ovaire rempli de petits kystes contenant des œufs immatures (follicules). Les ovaires des SOPK resteront donc larges et engorgés, mais les kystes associés au SOPK sont multiples et petits, plutôt que devenir de larges et douloureux kystes que les femmes doivent se faire retirer chirurgicalement.
Je vois souvent des femmes qui veulent avoir un deuxième avis concernant leur SOPK. Un docteur leur a dit qu’elles l’avaient, un autre docteur leur a dit que non. Elles sont frustrées et veulent des réponses. Cependant, le SOPK est un diagnostique clinique, le rendant très subjectif. Quand ta gorge te fait mal, tu peux aller chez le médecin. Il ou elle va te faire un test avec un q-tip qui te donnera soit un résultat négatif ou un résultat positif. Dans notre cas, le SOPK est basé sur une collection de symptômes qui peuvent être décelés avec une prise de sang, mais il n’y a pas de test définitif.
Pour ajouter à la confusion, il y a présentement 3 séries de critères diagnostiques pour suspecter un SOPK. De plus, en Europe, les médecins mettent davantage l’emphase sur le dépistage par échographie ou ultrasons, alors qu’aux États-Unis, les médecins observent davantage les symptômes.
La définition la plus reconnue aux Etats-Unis est celle de la NIH (National Institute of Health) avec ces critères :
1. Menstruations irrégulières
2. Une évidence d’un taux d’hormones masculines élevées (avec tests en laboratoires ou symptômes)
3. Une exclusion d’autres causes au taux d’hormones masculines élevées.
La patiente classique souffrant de SOPK est en surpoids, avec la majorité de son obésité au niveau de l’abdomen. La perte de poids est un très grand défi en raison de la résistance de leur corps à l’insuline. Leur cycle est plutôt sporadique, allant de 2 à 3 mois. Elles ont des problèmes de conception en raison de la difficulté de leurs ovaires à ovuler malgré leurs meilleurs efforts. Elles ont, en bonus, souvent besoin d’épiler leur menton ou leur moustache plus que leurs amies. Le SOPK est une condition difficile, mais la bonne nouvelle est que c’est gérable.
I know this is an old post, but I have PCOS and after reading I have a few questions. PCOS is a very confusing condition indeed!
I was officially diagnosed with PCOS in 2013 after a ultrasound of my ovaries, but in the long months leading up to my diagnosis I had multiple blood tests done that showed it was likely that I had it. I don’t remember the exact numbers, but my FSH and LH numbers were off which is why my doctor ordered the ultrasound and confirmed the diagnosis after seeing those strings of pearls, hearing my symptoms, and looking at my blood work results. I exhibit a lot of PCOS symptoms, but not all of them. I am obese, but prior to PCOS I was at a normal weight. I gained 60-70lbs in the span of six months, and I haven’t been able to lose it for years.
After gaining so much weight in such a short amount of time, I first thought I had a thyroid condition, as thyroid cancer runs in my family and both grandmothers have had their thyroid fully or partially removed. However, when I went to the endocrinologist, my blood work for my thyroid levels came back in the normal range. My endocrinologist did a ultrasound of my thyroid because of the family history, and I had cysts (all very small and fluid filled) and a very slight goiter but nothing to really be concerned about. It was actually this doctor who first decided to test my FSH and LH levels and recommended I see a GYN after my results came back.
I have a great gyno, and she makes sure to order blood work to check all my levels each year at my yearly (lipids, thyroid, and glucose). I often see her multiple times during the year, though. And each year I have had a glucose test done. I’ve taken a fasting two hour glucose test twice now (last year and this year) and I have passed both times! This is incredibly confusing to me, though. If PCOS is suppose to effect how my body processes sugars and spikes insulin levels, then why do I pass glucose tests? I am an obese PCOS patient. Shouldn’t there be some indicator of why it is so stinking hard for me to lose weight?
To give you background, I eat healthy, healthier than a ton of my thin friends. I work out regularly. During school semesters, I always make sure I am going to workout classes they offer during the week so I am working out 4 to 5 times a week. It is so confusing to me why it is impossible to see results on the scale. I’ve seen improvements to my cholesterol, my resting heart rate, my menstrual cycle, my moods, and my fatigue since being diagnosed, all good signs! But it is the weight that is my biggest struggle with PCOS (well, and acne). I just don’t get it.
I also have normal cycles. Usually. Before diagnosis, I missed three consecutive cycles after always being very, very regular. This was also after my rapid weight gain, but eventually my cycles came back. Every month. There were a few times I’d be late, though, after that. Then after diagnosis, my doctor put me on birth control which was fine with me because I had just gotten married. After a few months, I stopped taking it because my husband got a new job and we were switching insurances… paperwork madness! My husband and I decided that we would just see what would happen. We went 7 months before I missed my period, but I was not pregnant. I missed my cycle after over a year of normal cycles.
Now, I am back on birth control to help regulate things. My husband and I decided to not TTC until I am at a healthier weight range. My doctor has also put me on Adipex, which helps me lose weight but I feel conflicted about taking it. I mean, what’s going to happen when I stop taking it? Will I go back to square one?
I know this is a lot. Recently, I’ve been really wanting to understand my PCOS more and what’s going on with my body so I can do all I can to try to fix it …or at least manage it. But it seems that, while I have the weight gain and the trouble losing weight, I do not exhibit insulin resistance. What do I do? Is there something else that could be causing this?
Thank you for your time if you have read all the way to this point!! I really appreciate it, and I would love to hear your thoughts or input if you can think of anything that may be going on. Like you said, PCOS can be very confusing! I definitely relate to the frustration that comes with it.
Ever felt completely alone, and like no one gets you? or what your going through? that’s how I feel. Frustrated also doesn’t even begin to describe all the emotions I have. I’ve been living with and suffering from pain for about 5 years constant now although it began in my early teens when i first started menstruating. oh the tests!!! a scan here a scan there. one doctor says yes you have pcos and another says no. yet they continue to find cysts. I live in a small town and the nearest doctor is an hour and a half away, right now i’m searching for any suggestions of what others have tried experienced looked for. I’m 29 and cannot fall pregnant, -its heart wrenching to experience the pain of not having a child but even more heart wrenching to be in so much pain and feel like noone really takes you seriously. I try to advocate for myself but am not a doctor and get told that regularly if i even ask a question or have a concern. i’m told i need to stop looking at the internet – although most of my questions come from friends who have tried things and been successful! HELP
Sandi, I am so sorry that you are going through this. Having PCOS myself, I know how maddening it is. On the other hand, I know of many success stories including my own. I have two children that came after a long journey of waiting, praying and hoping. Of course I found a great advocate in Dr. Rupe but I also needed a fertility specialist to help guide me. Together, we tried different things and eventually something worked. Do be careful what you read on the internet. There are several books from trusted sources on PCOS (look on Amazon). I also pray you find an advocate in a physician – either OB/GYN or fertility specialist to guide you through. Hugs and prayers to you! Jessica
Yeah I have pcos and it sucks. but i hope you keep this blog going…
Sorry. Yep, we will 🙂
Hi, I am 21 years old and an identical twin. My twin had a baby when she was 17, and for the past year has been trying to conceive with no luck, after numerous doctors visits she has just been diagnosed with P.C.O.S, her doctor said that she would have always had it, but it wasn’t affecting her which is why she was able to conceive the first time. But it was due to her going on the contraceptive pill after having her baby, and then stopping it when her and her partner decided to try for a sibling that brought her condition out. The doctor said that the pill masked the P.C.O.S, but once she stopped taking it, P.C.O.S sort of activated itself. He said that had she not gone on the pill the P.C.O.S wouldn’t have affected her. I have always had irregular periods, and in January I had a baby, I have been on the contraceptive pill ‘noriday’ since my child was around two months old, so i guess what i’m asking is what are the chances of me having P.C.O.S, and by going on the pill have i increased my chances of contracting it? Oh my mother also had this condition and apparently my older sister does too.
Hi Lillianne, So glad to connect with you here. I’m not the doctor so I can’t answer your question. But as someone with PCOS, I would say, the fact that you’ve had a baby is wonderful. Do you see the same OB/GYN as your sister? I would ask your doctor his/her thoughts on your unique situation. Blessings to you and your family.
I was diagnosed with PCOS approx 13 years ago. My husband and I tried for over 5 years to have children. We had IUI treatment and I became pregnant with the 2nd try. Now I have 4 children !! Please don’t loose hope. The is light at the end of the tunnel !!
I’m 26 and was recently diagnosed with PCOS. I’m normal weight and am wondering if there’s any difference in the best way to manage it versus someone who’s overweight. What foods should I eat and avoid to stay at normal weight with PCOS? I’m also really curious about how to increase chances of conception and about additional risk of miscarriage PCOS brings.
Great questions. Stay Tuned….My Next 2 posts will address treatment and fertility.
I was dx with PCOS almost 10 years ago (I’m 25 currently). I have normal prolactin, elevated estrogen and testosterone, low progesterone, pudgy tummy, fuzzy chin, 7th grader complexion…and have the u/s scans to verify the enlarged, cyst-covered ovaries. The one thing that I don’t seem to have is insulin resistance, though I’ve been tested for it three times! Is there something else that could cause my case of PCOS? Is there any benefit for a patient like me to be on Metformin anyway?
Yes. Experts think that just measuring insulin levels is not a great way to determine insulin resistance. Only 50% of women with PCOS will demonstrate insulin resistance on blood work, but most will respond to metformin.
I LOVE that you are covering this topic! I was diagnosed with PCOS at age 20 and I am now 32. I have tried everything to lose weight and restore fertility but have not had much luck so far. I started taking Pregnitude (Folic Acid and Myo-inositol in powder form) last week and would love to know if you have ever heard of this natural therapy. I am willing to try anything to lose weight and have some babies!
Yes! I am planning to write about it as part of this series.