My PCOS Story with Victoria Rouru
By Victoria Rouru
PCOS affects 1 in 10 of reproductive age and remains surrounded in a great deal of myth and misinformation. Here at QENDO we’re helping our community to better understand the realities of PCOS by shining a light on the many voices of those affected. Today on the blog Victoria Rouru shares her PCOS story, one which has spanned 11 years. She talks about the misinformation and lack of awareness surrounding her diagnosis, her struggles with PCOS related body image, and taking control of her health. We also go back to basics on what exactly is polycystic ovarian syndrome, and what are the symptoms we need to be aware of?
Hi, I’m Victoria a new mum to my 6 month old boy Ōrama and a PCOS Cyster of 11 years.
My First Period
I remember this day like yesterday, I was in Year 5 (11 years of age) had just finished lunch time play when I went to the toilet and found I had blood in my undies. I panicked! My mum didn’t educate me on this, she didn’t expect me to get them this early as she didn’t get her’s till she was around 18. I remember crying thinking I was dying, haha! My friends went and got our class teacher and she got me my first pad, I hadn’t been educated in how to use a pad either. So 11 year old Victoria put her pad on upside down- sticky side up, wasn’t that interesting!
I then went on into high school a couple years later where I started putting on weight fast, my skin was breaking out a lot, my facial hair or ‘side burns’ were getting a-bit darker and the good old period was never regular so my mum finally took me to the Dr’s.
After multiple blood tests and ultrasounds I was finally diagnosed with Polycystic Ovarian Syndrome. Over the years we were told all kinds of things like:
It was hereditary
It would go away after a full term birth
It was untreatable
It only originates from Asia & Europe
All myths!
For years into my teens it was left untreated, it left me very self conscious. I was ‘different’ to the others, I had the ugly parts PCOS comes with due to the high testosterone in my body. So I was the hairy girl, the fat girl, the ugly skinned girl.
When I was 15 I started getting cysts that would come and go, lots of back and forth ultrasounds they would just flare up and down. We were told they would ‘go away on its own’. I think it did because I haven’t had any issues since.
It wasn’t until I found it was affecting me the most when trying to conceive that I actually got medical help to try and control my PCOS. I was put on metformin to control symptoms, as I was insulin resistant, that did help me for a bit, but I was never consistent with it. I am still to this day finding what works for me as I didn’t like the whole “take meds for the rest of your life” thing.
But it’s something I wish I had more support on when I was in my teens, I felt very lonely when I was diagnosed because it was so unheard of. Especially when we were told it was ‘hereditary’ and no one in the family knew of such a thing. My grandmother honestly still to this day doesn’t believe it.
I actually have met a-lot of women the past year who have reached out, as they have PCOS and they are Polynesian women. WTF! My doctor told me it only originated from Asia & Europe… so you mean to say that all this time I could have been connecting with sooo many people to get support? I was absolutely gobsmacked, I felt a sense of relief. It wasn’t ‘just me’ anymore.
I know a lot of people have different kinds of PCOS too, some with more symptoms than others. Me personally, I have kind of just adjusted to it. But my goal this year is to work on my health as I have used the excuse “because of my PCOS” for way to long and it’s time i take control.
So my DM’s are open and I would love to connect with my Cysters! I need all the advice and tips I can get!
Back to Basics: What Is PCOS?
Polycystic Ovarian Syndrome (PCOS) is a hormonal condition which affects approximately one in ten who are of reproductive age. “Polycystic” means many cysts.
The exact cause of PCOS is unknown; however, it is believed to be an insulin resistance which drives this condition. PCOS may have a variety of different origins depending on PCOS phenotype. Despite up to one third of people experiencing “polycystic” ovaries on ultrasound, there are other key symptoms of PCOS which are key to being diagnosed. Ultrasound alone cannot rule out PCOS, because even those without the characteristic "polycystic ovaries" may have clinical symptoms of hyperandrogenism - this means an excess of "male-type" hormones that effect not just the ovaries, but the whole body. Many of the key symptoms of PCOS can be attributed to this excess of androgens.
Symptoms of PCOS may be physical, mental, or even silent. They include, but are not limited to:
Insulin resistance
Anovulatory cycles
Infertility
Weight gain, or trouble losing weight
Hirsutism
Hair loss
Skin tags or dark patches of skin
Fatigue
Anxiety
Depression
Loss of libido
Treatment for PCOS should include a multidisciplinary and holistic approach that aims to improve symptoms and maintain overall health, including diet and lifestyle factors. Working with a specialist, and allied health practitioners, with experience in PCOS and fertility can be helpful. Many people affected by PCOS report frustration with simply being told to take oral contraceptives to regulate their irregular cycles, if this is you, you can ask for a second opinion to get the specialist care you need! A holistic approach to PCOS is not a one size fits all approach, and consideration must be given to a variety of factors depending on your presentation. Your team may include a gynaecologist, endocrinologist, specialist dietitian, exercise physiologist, fertility specialist and/or psychologist. You can use the QENDO referral list to find someone in your local area. You don’t have to suffer in silence.
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