How do I know if I have PCOS, how do I get diagnosed?
Polycystic ovarian syndrome, also called PCOS, is an endocrine disorder that affects approximately 1 in 10 women. It is characterized by the presence of multiple cysts in the ovaries and depending on its impact, can have different consequences such as very short cycles and hormonal imbalances leading to acne, increased hair growth (hirsutism) and hair loss. PCOS is the leading cause of infertility for menstruating people of childbearing age, which is why it's worth getting yourself diagnosed with PCOS .
PCOS in a nutshell
Polycystic ovary syndrome (PCOS) is also known by the names ovarian dystrophy , polycystic ovarian disease or Stein-Leventhal syndrome .
It is caused by a hormonal imbalance of ovarian and/or central origin (in the brain). It leads to an overproduction of androgens, male hormones, such as testosterone, which promote the development of masculine characteristics. These hormones are usually produced in small quantities in the female body.
Contrary to what the name “polycystic ovarian syndrome” might suggest, PCOS is not characterized by the appearance of cysts on the ovaries… It is not cysts that are observed during the ultrasound, but small follicles that accumulate in the ovary instead of continuing to grow. No follicle becomes dominant and no ovary is released: this is anovulation.
It is the most common endocrine disease among menstruating people of childbearing age since PCOS affects 5 to 10% of them, from adolescence to menopause. It is also the leading cause of infertility
Symptoms and signs to watch out for
There are many symptoms that may indicate the presence of PCOS :
- Acne: caused by hormonal imbalance, acne can be boosted, especially just before menstruation. A common symptom of PMS, it is also a symptom of PCOS;
- Increased hair growth (hirsutism): with the increase in androgenic hormones in the body, hair growth increases in new places: tops of the hands and feet, mustache, areolas, back, buttocks, etc.
- Hair loss: Increased testosterone can be responsible for hair loss. If you observe this symptom, it may be important to consult;
- Weight gain: the increase in male hormones can lead to significant and unexplained weight gain: if you notice that your weight is changing even though your lifestyle habits have not changed, this may be a symptom to present to your professional health ;
- Painful periods: Painful periods are one of the symptoms of PCOS. If your periods suddenly become more difficult to live with, this may be a sign that there is a problem: do not hesitate to consult a health professional;
- Change in menstrual cycles (shorter, longer cycles, heavier periods): a sudden change in your menstrual cycles (especially in duration and flow) may be linked to PCOS;
- Anovulation, amenorrhea: the absence of periods should alert you: if a pregnancy test confirms that you are not pregnant, consult a doctor. Amenorrhea is a symptom of PCOS;
- Other symptoms linked to hormonal imbalance: significant fatigue, increased PMS, mood swings, etc.
Each of these symptoms, considered individually, can be indicative of different diseases and disorders – PCOS is not the only explanation. Likewise, each of these symptoms can vary in intensity and be different depending on the menstrual cycles. Also, if you have some of these symptoms, do not hesitate to consult a health professional. We explain, below, the procedure for diagnosing PCOS.
Getting diagnosed with PCOS: understand everything
The diagnosis process for PCOS is easier than that for endometriosis , another gynecological condition that has been particularly discussed in recent years. In this part, we tell you everything you need to know about the diagnosis.
The healthcare professionals involved
Healthcare professionals involved in the diagnosis of PCOS are:
- The attending physician: Because he or she knows your entire treatment process, your attending physician is the first point of contact to support you in your PCOS diagnosis;
- The gynecologist: PCOS being a condition which particularly affects the menstrual cycles and the female sexual organs, the gynecologist is often specialized in this syndrome. Some gynecologists specialize in PCOS;
- The endocrinologist: PCOS falls under the umbrella of gynecology and endocrinology because it is linked to hormonal dysfunction. The endocrinologist is therefore the other specialist best able to identify the symptoms of PCOS.
We have recently developed a directory of healthcare professionals recommended by our community (and by you) for their kindness and professionalism.
A diagnostic tool: the Rotterdam criteria
The diagnosis of PCOS has long been debated. Since December 2013, the American Society of Endocrinology has published its recommendations for the diagnosis and management of this pathology. In 2014, the European Society of Endocrinology followed this path. The so-called Rotterdam consensus lists three key criteria for making the diagnosis of PCOS:
- Clinical hyperandrogenism (hirsutism, acne, androgenic hair loss) or biological hyperandrogenism (abnormally high testosterone level);
- Menstrual cycle disorders, with rare or absent ovulation (oligo-anovulation or anovulation). The Rotterdam criteria established that cycles shorter than 21 days or longer than 35 days were considered dysovulatory;
- Large ovarian volume (greater than 10 mL and without the presence of a cyst or dominant follicle) and/or a significant number of small follicles detected during a vaginal ultrasound.
In France, the diagnosis of PCOS requires the presence of at least 2 of these 3 criteria.
Examinations allowing the diagnosis of PCOS
As the symptoms of PCOS are numerous, there are three examinations to reveal it:
- Hormonal assessment: this assessment focuses on different hormones (FSH / LH, androgenic hormones, etc.). Blood tests are taken at different times of the menstrual cycle;
- Pelvic and/or abdominal ultrasound: ultrasound is often offered to study the size of the ovaries. The latter may increase in size (1.5 to 3 times the “normal” size) in the event of PCOS;
- Laparoscopy (rarer): laparoscopy consists of observing the interior of the abdominal cavity, the uterus, the ovaries and the fallopian tubes. It can help to highlight the significant ovarian activity linked to the disease (large ovarian volume and large number of small follicles).
Some hospitals have specialized in diagnosing and treating PCOS.
- Nîmes University Hospital, Metabolic and Endocrine Diseases department : the University Hospital offers comprehensive support for the diagnosis and treatment of PCOS;
- Saint Joseph Hospital, PCOS department: the Institute of Medical Gynecology at Paris Saint-Joseph Hospital offers support.
✋ Does a hospital near you offer a diagnosis and treatment course specific to PCOS? You can let us know in comments, by email or by PM on Instagram. We will update this article.
Getting diagnosed with PCOS: the journey
If you have some of the PCOS symptoms detailed earlier in this article and more specifically in our PCOS symptoms article, it may be worth asking yourself about PCOS. This is also the case if you have a baby plan but you are unable to get pregnant after several months of trying.
- Appointment with the attending physician: firstly, it is interesting to see your attending physician. Because he knows your complete medical history, he will be best able to offer you a suitable diagnostic course. He will recommend you to a specialist: either a gynecologist or an endocrinologist;
Appointment with a specialist, gynecologist OR endocrinologist: after having retraced your medical history with you and discussed your menstrual cycle, the gynecologist will offer you several examinations to confirm the diagnosis of SPOK:
- Hormonal assessment: it must be done in the laboratory between the second and fifth day of the menstrual cycle (or, if you no longer have your periods, these are caused by a progesterone-based treatment administered for 10 days);
- Pelvic and/or abdominal ultrasound: ultrasound allows you to study the size of the ovaries and evaluate ovarian activity;
Appointment with the specialist: once the examinations are completed, you see your specialist again. Depending on the results, he will be able to make a diagnosis – PCOS or not. If you have PCOS, he will order a new test:
- Metabolic blood test: PCOS increases the risk of metabolic syndrome (overweight, high blood pressure, blood sugar disorders) and type 2 diabetes. This is why it is necessary to supplement the hormonal test with a metabolic blood test when PCOS is confirmed.
💡 Are you trying to get pregnant and unable to do so? It is important to consult for yourself, to check that everything is fine. However, also think about your spouse: he too must consult. Indeed, more and more research tends to show that sperm quality/fertility declines due to our lifestyle.
What tests and exams should you take?
The tests and examinations to be carried out as part of the diagnosis of polycystic ovarian syndrome are generally two in number: your specialist doctor will ask you to carry out a hormonal assessment and a pelvic ultrasound . In certain cases, a laparoscopy may be offered.
The hormonal balance
The first test suggested to determine if you have PCOS is the hormonal assessment. Since PCOS is an endocrine disorder, it involves checking the different hormone levels in your body.
Follicle-stimulating hormones (FSH) and luthenizing hormones (LH)
This assessment is carried out from a blood test, taken at the start of the menstrual cycle (between the second and fifth day). If you no longer have periods, you may be offered progesterone-based treatment to induce them.
The hormonal assessment makes it possible to measure the dosage of follicle-stimulating hormone (FSH) and luteinizing hormone (LH), two hormones secreted by a gland located in the brain (the pituitary gland). These hormones both have a role in the menstrual cycle. Follicle-stimulating hormone and luteinizing hormone control the ovarian cycle and their levels vary during the cycle.
Normally, the basal level of LH is lower than the level of FSH. It increases during the menstrual cycle. If you have PCOS, the opposite happens: the base level of LH is higher and it does not rise mid-cycle, as it should to trigger ovulation – this is the reason why your cycles are disrupted, or even why you no longer have your periods. We speak of inversion of the FSH / LH ratio.
The assessment also measures the level of androgenic hormones (testosterone, androstenedione and SDHA). It is high in women with PCOS and it is this abnormally high level that induces certain symptoms such as hirsutism or hair loss. Hypersecretion of male hormones is a factor in weight gain. However, we now know that weight gain can increase the risk of infertility linked to PCOS.
Finally, depending on the situations observed, other hormonal dosages are requested in order to eliminate other pathologies responsible for symptoms similar to those of PCOS (prolactin, TSH, 17 hydroxy-progesterone, urinary cortisol, etc.).
Pelvic or abdominal ultrasound
A pelvic and/or abdominal ultrasound allows you to observe the ovaries.
It is :
- determine the size of the ovaries : it is normally larger in the case of PCOS, between 1.5 and 3 times larger than normal (generally an ovary is the size of an almond);
- show the large number of small follicles : when there are more than 12 small follicles, it is generally considered that this is not normal;
- measure the size of the follicles: small follicles (between 2 and 9 millimeters in diameter) show that they are not continuing to grow and that this is therefore abnormal;
- observe the ovarian volume: in the case of PCOS, the latter can be large (greater than 10 ml) while having no dominant follicle.
Although these features are quite specific, an ultrasound alone cannot make the diagnosis of PCOS. Some women can indeed experience similar results, without having PCOS. This examination complements the hormonal assessment.
Some healthcare professionals may, in addition to ultrasound, recommend laparoscopy, also called laparoscopy. The surgeon, through cuts made in the abdomen, slides cameras in to observe the organs.
This examination, which literally means “looking at the walls”, aims to inspect the inside of the abdomen of menstruating people to measure the ovaries, observe them and observe the endometrial lining. It is sometimes also used to confirm a diagnosis of endometriosis.
The importance of PCOS diagnosis and monitoring
PCOS is a chronic illness, whether mild or severe, that has an impact on people who suffer from it. Different diseases are associated with PCOS, which is why it is essential to get diagnosed and monitored.
Why get diagnosed?
Because PCOS itself is not serious, you may be tempted not to seek a diagnosis. After all: is it really a big deal not to have your period? If that's what you think, here's why you should get tested.
- Understand your body: your irregular menstrual cycles annoy you a little, you don't always understand how your hormones work, you gain weight without explanation... all these symptoms can be linked to SPOK. What if that was your answer?
- Experience your menstrual cycles better: you may have gotten used to painful and irregular periods, to fatigue... but have you ever considered that you could live without these different symptoms? By getting diagnosed, you will have access to medical answers to limit these symptoms! Please note: there is no specific treatment to treat PCOS today. Treatments are essentially symptomatic (we treat the symptoms rather than the causes).
- Consider a baby project: SPOK is particularly disabling in the context of a design project. Indeed, it is sometimes the cause of infertility, when it is severe or when it is not detected early enough. The sooner you take charge of it, the more answers and alternative solutions you will have to design!
Contain and thwart PCOS-related diseases and disorders:
obesity, type 2 diabetes, high blood pressure, endometrial cancer... various health complications can be linked to SPOK. Being diagnosed, then followed, allows you to partially protect yourself from these diseases.