Real stories, Stages of life, Trustees

PCOS Story: What I wish I had known

Post by Caroline Andrews, Trustee of Verity.

Us trustees have been diagnosed for years and are privileged to have worked with some of the top professionals in the country so we may know more than most about PCOS. It was not always that way, at one point we were just like you, newly diagnosed.

I’m 37 now and was diagnosed at the age of 19 after my mum gently showed me an article entitled ‘spotty, overweight, and miserable – is this secret syndrome ruining your life?’. It finally hit the nail on the head on how I had been feeling. I took it to my GP, pushed for a blood test, apparently, I’m rather insistent, and that’s how I got diagnosed.

As a volunteer Trustee, I often don’t even think about my own PCOS, because we’re so focused on helping others. I have a very full life outside of my role with Verity as well and so it got me thinking about my 20 years of living with PCOS, and what I wish I had known when I was newly diagnosed.

PCOS does not mean infertility. 

I could scream at how often I hear this even from my own healthcare professionals. It can affect your fertility but it is not a full stop on it so don’t assume the worst. It may just mean extra time and testing. 

Educate yourself and come armed with the facts. 

Showing a GP a teen magazine may not have been the best approach, but I also came armed with two years of diarised periods and a list of quite obvious symptoms (hello acne beard – yes literally a goatee shape of acne when I started university). There are a lot of apps to help with this nowadays, showing medical and symptom history really helped me get my diagnosis. We also need to be informed about what resources our health practices can access or refer us to, especially now whilst a pandemic is still going. Medical resources can be stretched and waiting times for secondary services may be much longer. For some private ‘cosmetic’ treatments it’s also good to do your research e.g. which salons/beauticians actually understand about hormonal hair growth and the options available for managing this. 

Your PCOS will change with time. 

The scans I have had over the years have varied when it comes to the number of ‘cysts’ on my ovaries. Last year I had a scan where I was told that apparently, I did not have PCOS at all, swiftly rectified when I pointed out the guidelines on the number of ‘cysts’ in the diagnosis criteria had changed and that you don’t even need ‘cysts’ to have the condition. My symptoms have changed with age and I have had to learn how to manage these as I’ve gone along. It’s important to remember that what works when you’re 19, may not work at the age of 37. 

Take time to review. 

As your PCOS changes take time to review how you manage it. It may sound silly but I’ve found mixing up shampoos etc can make a difference to how full my hair can look. On a more serious note, it is essential that you have regular reviews with your GP for any medication, including the contraceptive pill or Metformin.I should have had my Pill reviewed after a number of years, especially as things like changing weight and age can affect the side effects and risk factors you may experience with them. I didn’t and as a result, I ended up in the hospital with blood clots all over my body. When you get told that you technically should have died four times and if you had not gone to A and E when ‘something didn’t feel right’ you would have died by the next morning, you know that listening to your body is crucial. I put off reviewing my PCOS management and it nearly killed me. This is not said to terrify but with the realistic situation that PCOS is a serious health condition and needs reviewing. Also, your body changes and you know it best, so trust yourself and get things checked. If you are on a contraceptive pill the regular blood pressure checks are there for a reason or if looking at Metformin the blood sugar tests are there for a reason. Any major changes of medication or lifestyle should be done in consultation with the right professionals, this includes holistic options and supplements.

It’s more common than you realise. 

When diagnosed I was first diagnosed I remember reading about some celebrities with Acne issues, now I know that some of them have PCOS. I have also become the go-to person for many friends who have PCOS. It is only by being open about our condition and experience that we can we help raise awareness so that others don’t feel so alone. My salon actually asked for some leaflets to learn about PCOS as they felt it helped them tailor the products used in their facials. Informing others can help you and them. 

There are always options. 

PCOS can sometimes feel like the end of the world but there are always options. They may not be what you want but they are there. Be open to considering everything, take the information on board and then utilise it for your own management in a way that works best for you. 

PCOS can be a superpower!

Now I know I may sound like Perky Polly but believe me, I have my ups and downs. However, the way I see it is that PCOS can either control my life or I do my best to control it. My very dear friend and fellow trustee Alison (PCOS can also give you amazing pals!) always says ‘I have PCOS it does not have me’ and that is a rule I often say to myself. For example, the extra testosterone I feel makes me a bit more competitive which is great in sports or at work. The insulin resistance has meant I have learnt so much about how food fuels your body. I am not saying every day is perfect but take power over it a positive spin can do wonders on your outlook.

These are just some of my personal thoughts and everyone’s journey is different but as a Trustee, my role is to help raise awareness and I have been inspired by some of you lovely people to share my story.

For more information on blood clots Thrombosis UK has some great resources on contraception and blood clots.

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