Polycystic Ovary Syndrome, or PCOS, affects up to 19% of women and unknown numbers of transgender, non-binary and gender non-conforming people worldwide. Despite how common PCOS is, very little is known about the condition. 

In a previous article, Unfabled's Clinical Lead Zoe discussed what PCOS is, how it’s diagnosed and other need-to-knows. But how do you even know if you have PCOS in the first place? In a lot of cases, people with PCOS describe frustration and a feeling of disillusionment with the healthcare system in their journey to diagnosis. Their symptoms have been brushed aside, dismissed or misdiagnosed, leading to further difficulty in managing their condition. 

In this article, Unfabled has partnered with Scan.com to dive into the diagnostic journey for PCOS, and explore options for you to take your health into your hands if you end up in a bottleneck trying to receive an accurate PCOS diagnosis. 

Let’s get into it. 

What are the signs and symptoms of PCOS?

PCOS, or Polycystic Ovary Syndrome, manifests as a collection of symptoms that can vary significantly among individuals. While many of its symptoms, such as acne, mood swings, and irregular periods, are commonly experienced by many, it's crucial not to hastily diagnose oneself based on a singular symptom. 

For an official diagnosis of PCOS, at least two of the three characteristics from the Rotterdam Criteria must be present:

• Irregular or absent periods
• Signs of excess male hormones including excess body/facial hair or acne or high levels on a blood test
• Polycystic ovaries seen on an ultrasound scan

How is PCOS diagnosed?

Despite their name, polycystic ovaries contain many follicles, not cysts. These small fluid-filled sacs can be seen and counted using ultrasound imaging.

Dr Khalid Latief is a consultant radiologist and Chief Medical Officer at Scan.com. He recommends an internal transvaginal ultrasound scan (TVS) to check for polycystic ovaries. A transabdominal (external) pelvic ultrasound scan can still show polycystic ovaries if an internal scan is not suitable. A full bladder helps to capture the clearest images, so you may be asked to drink plenty of water before your scan.

Ultrasound is quick, safe, and non-invasive. It doesn’t use any radiation - instead, high-frequency sound waves are emitted from a scanning wand which is inserted into the vaginal canal for a transvaginal scan, or moved across the skin of your lower abdomen for an external scan.

These sound waves bounce off the soft tissues and fluids in your body, and the echoes are recorded to create images. This allows doctors to count the number of follicles on the ovaries and assess the size of the ovaries, which are the potential signs of PCOS they would be looking for.

As PCOS is a syndrome, it has many symptoms, which vary from patient to patient. You don't need to have all of the symptoms to be diagnosed with PCOS, and the presence of polycystic ovaries on an ultrasound alone is not always enough evidence for diagnosis. Your doctor might ask you to have a blood test to check for elevated male hormone levels.

How can I push for a diagnosis for my symptoms if I’m struggling to make progress with my GP?

If you’re experiencing symptoms of PCOS, but are struggling to progress your diagnosis, an ultrasound scan could be the missing piece to help you get peace of mind and access  treatment.

You can get referred for PCOS ultrasound imaging by your gynaecologist, endocrinologist, or GP. However, if you’re struggling to get a referral, or find yourself on a waiting list for a scan, you can book your own private ultrasound online by using Scan.com.

Scan.com removes the need for a GP referral and there are no waiting lists. Every booking includes a pre-scan consultation call, where you’ll be able to discuss your symptoms with an experienced clinician on Dr Latief’s team. They will verify whether an ultrasound is suitable, and create a rapid referral for a scan at your choice of location and time.

Results are delivered in as little as a week, with a post-scan clinician consultation and an interactive digital report included. You can also take your imaging report from Scan.com back to your doctor to access any onward care you might need.

The bottom line

Three-quarters of those living with PCOS are never diagnosed. The condition varies significantly for different people, and you don't need to have all of the common symptoms to be diagnosed with PCOS. In fact, you can be diagnosed with PCOS and have no cysts on your ovaries at all!

Your menstrual cycle is your sixth vital sign and if you feel something isn't right – whether that be due to symptoms you'd associate with PCOS or otherwise – it's important that you don't ignore your symptoms.