Yesterday’s post highlighted the fact that #1in10 women in the UK have PCOS. That’s over three million women! It’s a staggering number isn’t it? Even more mind-blowing is that upto 70% of those women – that is roughly two million – don’t know they have the syndrome and remain undiagnosed (Source: International Guidelines 2018).
Today I will be looking at the process of getting diagnosed with PCOS and sharing my diagnosis story.
In the UK, the standard diagnostic tool is called the Rotterdam Criteria – produced in 2003. As the infographic (left) from Verity shows, for diagnosis of PCOS you would need to have at least two out of the three listed issues. As part of your diagnosis, other conditions that can mimic PCOS would also need to be ruled out.
Excess androgens contribute to male-pattern facial & body hair and irregular / non-existent periods. They can also cause androgenetic alopecia (male-pattern baldness). Further hormone and metabolic imbalances will contribute towards weight gain, insulin resistance, and a higher risk of type 2 diabetes.
Not all women with polycystic ovaries – roughly 1 in every 5 – will go on to develop the syndrome. The ‘cysts’ seen on the ultrasound scan in women with PCOS are not the usual type of cysts (fluid filled sacs), but are unripened follicles that haven’t been released. They often resemble a string of tiny pearls.
Often the symptoms of PCOS will start to appear in mid-late teens and early 20’s. It is quite common to receive the diagnosis of PCOS when fertility issues and problems getting pregnant become apparent.
I was 13yrs old when my symptoms started to appear. I was extremely distressed to notice that I’d started growing hair down the side of my cheeks, on my chin, upper lip, and neck. They also started to appear between my breasts, on my stomach, my upper back and shoulders. I was also conscious of the dark hairs on my forearms. Too embarrassed to speak to anyone about what was happening, I kept all the emotions, confusion, and shame inside me – dealing with the anguish by turning to food for comfort. My weight steadily increased, not helping matters.
I had one period at the age of 16, but no more natural periods until I was 42yrs old!! The bullying at school, college, and work was horrid. Although I shaved my face daily, by late afternoon the stubble would start to show through. I felt like a total freak of nature.
Eventually, aged 22yrs, I plucked up the courage to make an appointment to see a female GP. After a brief examination and hearing that I’d only had one period, I was referred to a gynecologist. They did blood tests and arranged for an external ultrasound. From the time of my first visit to the GP to my hospital diagnosis took about 3 months.
The fact that I’d had symptoms for so long without having any treatment posed some problems. My weight – now approx 19st – was also a concern. I was told to lose weight, but by now food had become my best friend, my coping strategy to get through each day – why would I ever give up on my ‘best friend’?? So my weight continued to steadily rise.
I was tried on several contraceptive pills (Dianette & Microgynon) and giving other hormone tablets including spironolactone. At the age of 24 I underwent a bilateral ovarian biopsy to rule out ovarian cancer. At the same time I also had exploratory procedures to confirm that I hadn’t got any androgen-producing tumours. Thankfully that test came back negative.
I was frustrated that the medication I had been given didn’t appear to be touching the excess facial and body hair, and not one single doctor even asked me how all this was affecting my mental health!!
On Day 6 I will discuss my symptoms and how they’ve changed over the years.
On Day 11 I will discuss the topic ‘What I need you to understand’.
I will return tomorrow, Day 4, to discuss ‘My PCOS Pledge’. But until then, take care.