Simone Margett
Polycystic Ovarian Syndrome (PCOS) is a hormonal disorder that affects women at puberty age. PCOS causes irregular periods, weight gain, excess body hair and hormonal breakouts. It is a common condition that affects how ovaries work and symptoms can vary, impacting 1 in 10 women of childbearing age.
Initial Symptoms
For me, symptoms of PCOS began around 13-14 years of age due to abnormal bleeding and weight gain. I pushed it to the side assuming that this was something that happened to every young girl. I had breakouts around my jawline, chin and neck which I would cover with makeup. My self-consciousness, as a teenager, struggled.
I was diagnosed with depression and anxiety at 15 and, as the years I have gone by, I have changed many medications to manage my mental health.
Developing darker hair around different areas of my body from my neck, chin, stomach, back and more became something of the norm. I was told by doctors that I just needed to lose weight, despite having a normal diet. I noticed my sideburns would grow thicker and again, I just put this down as usual teenage stuff because every teenager dealt with breakouts and hair growth.
As I was getting older, I noticed my hair was thinning and losing some of its volume. I just assumed it was because I liked to dye my hair every ten months, so I decided not to dye my hair for a while to see if that would improve it and changed my hair routine – I tried everything I could think of with what my budget would allow. And nothing changed.
“To this day, I am still a victim of my raging hormones and needing to wash my hair every day.”
Eventual Diagnosis
It was not until I was about 20 or so, after going back and forth with the doctors, that they finally did some blood tests and a scan of my ovaries that I was diagnosed with PCOS. Finally, I had a diagnosis that explained all the things that were happening to my body.
“No one asks how PCOS makes you feel.”
It explained my low moods more than usual. Perhaps the reason for the constant need to rewash my hair every day because of how greasy my hair got. To this day, I am still a victim of my raging hormones and needing to wash my hair every day.
My periods remain somewhat regular. That being said as I write this I have not had a period in 3-4 months, but this has become the norm when it comes to PCOS.
When you get a period, you cannot help but get a little excited. No one asks how PCOS makes you feel. The only way to describe it is that it makes you feel disconnected from your body. There are only a few resources for people who have PCOS so we are left having to figure out how to manage it ourselves.
The Follow-Up
I have been constantly tired after doing the simplest of things like making a coffee in the morning, washing up and doing some writing. It is exhausting. In December 2021, I was referred to a dietitian who I found was more sympathetic about my struggles to lose weight despite making changes to my diet.
So, I am now back to square one. I am very much aware that it is going to be a long road dealing with PCOS pain and fatigue, which got worse when I went to university back in 2018.
Despite my best efforts, I still struggle with symptoms of PCOS – though I will admit that for a long time I did not take my medicine as responsibly as I should have. As I attempt to better manage my symptoms, I am trying to be more active and eat healthier.
But no one told me just how distressing PCOS can be. In addition to mood swings and trouble sleeping, I have also been frustrated with my inability to lose weight and lack of understanding from others.
Dealing With It
I am learning to love the body I am in – and it is a long process. I am not going to be ashamed of having to keep plucking out my chin hairs every morning. I am still finding things that work for me and dealing with my symptoms.
“Now is the time for doctors to recognise PCOS as a chronic disease”
Whilst it is a long process, I am not going to stop advocating for my right to find a doctor that understands PCOS. Now is the time for doctors to recognise PCOS as a chronic disease, and have more empathy towards those who suffer from it.
There are days when I am uninterested in self-care and the depression is simmering under the surface ready to boil over. I hate how PCOS makes me feel: not good enough, unattractive, insecure and hopeless.
With PCOS comes the struggle of trying to do what is right for you and, hand on heart, I wish I could get rid of my ovaries because even when I do get a period, it feels like I have been hit by a bus.
Personal Decisions
Whilst I have made the decision to not have children simply because I cannot really envision myself with them, but because of how complex PCOS is, it wouldn’t be a pleasant experience if I wanted to.
What I would like is to not suffer from near-constant pelvic pain. I would like to have more contraceptive options that do not cause me to gain more weight, break out and lose more hair.
When I have raised this with GP’s, they seem more bothered about making sure I will have children rather than the pain. Why is PCOS so difficult for doctors to understand? I am being given birth control pills to tame the symptoms, but even years later after the diagnosis, nothing has changed.
“I want to take control of my PCOS, rather than let it control me – and I know I can do that if I continue to take care of myself.”
Learning To Live With PCOS
I am learning to practice gratitude and eventually find a healthy middle ground. I want to take control of my PCOS, rather than let it control me – and I know I can do that if I continue to take care of myself.
I am learning about PCOS as I go. Though it is incredibly tough to deal with emotionally, it does not mean that you are broken. I am learning not to hate on my body for the constant bloating, fatigue and low moods. All I can try and do is be kinder to myself and love the body I have.
PCOS is a shapeshifter. There are as many different ways it can present itself as there are people who have it. And if you do have it, do not worry: you will be fine.
Featured image by Deon Black via LetsTalkSex.
