Patient story- Searching for support with PCOS

As I’ve shared in previous blog posts, being diagnosed with PCOS can be devastating and despite it affecting around 1 in 10 women the knowledge and support from healthcare professionals is often lacking. This is highlighted in this patient story. Rachel shares her journey of being diagnosed with PCOS and how she continues to manage her hormones and weight. She discusses the limited options presented to her and how through her own research she managed to start ovulating again and against the odds now has two beautiful children.

“I suspected I had PCOS when a number of symptoms started to become much more obvious such as hair growth on chin, huge loss of hair when brushing, miscarriages and infertility and despite all efforts, major difficulties in losing weight.

I went to my GP who was brilliant, super supportive and agreed with my suspicions, we did blood tests and I was referred to gynaecology for a diagnosis. Waiting lists were huge and I was aware of that so I started my own research on PCOS and started to implement some of my findings, mainly supplements, and types of exercise. These methods had a good impact and I started losing weight and ovulating every month after balancing out my hormones.

Unfortunately it took years to make it up the list and hear from the gynaecologist and due to it being in COVID times - it was a phone call not an in person appointment. By that time I’d had my first miracle baby and was breastfeeding. Without a regular cycle we couldn't proceed with tests so it would be another year. I was told over the phone that it probably wasn't PCOS and that I just needed to lose weight. This was so frustrating because at this point I was sure it was PCOS.

A year later, the time came for my diagnosis tests and scans. When the doctor scanned my ovaries, she said "that is textbook PCOS, we could take a picture of those and put it in the textbook". I was relieved to have a diagnosis but this quickly changed after the doctor said my treatment was to weight loss (a major side effect of PCOS is rapid weight gain and difficulty to lose weight!). I had tried every possible weight loss programme for years and it was so disheartening.

I asked for support in this; I thought maybe there was a dietician I could access for PCOS support. I asked about the supplements I had been taking and the doctor said "oh that helps some people". It seemed there was no actual help support or treatment after diagnosis. I was offered birth control as treatment if I wasn't planning more children or IVF if I was but would need to lose huge amounts of weight first. But PCOS isn't just a fertility issue, it's about my overall health, as it can lead to diabetes and other major issues in the future. I left my appointment so frustrated.

2 years on from that appointment, I continued with my own plan, taking the supplements (which cost £50pm) and changing up my exercise program. I continued to lose more weight and had another beautiful miracle baby.

I wish there was more help in understanding the type of PCOS you have (mine is insulin resistance, but I learnt this from my own research!) and then specific support for things that might help rather than just help for the fertility aspects. At 2 months post-partum, I will very soon be back on my weight loss journey to control my PCOS and this feels like an uphill climb with very little support.”