GP texted PCOS page link - no diagnosis, no explanation - I’m reeling

[Felicity2]

Hi, I’m a 34 year old (35 in December) undergoing fertility tests. Just needed to vent and ask if this has happened to anyone else: being told you might have PCOS by getting a random NHS page link via text message.

Recently I chased my GP for ultrasound results and was told they would not discuss them until blood tests were done. I was fine with this and asked them to book the bloods. I got a call this evening to confirm a date - all fine - and they said they would text me a link with some info which I presumed would be about preparing for a blood test.

What I received via text message was a broken NHS page link but I could tell by the URL that it was the polycystic ovarian syndrome page. There was no context or preamble. I’ve not had any clinician contact me about my results or any concerns. They just wrote “as discussed” and the link.

I called my GP immediately expecting to learn this was a mix up. A doctor on emergency calls - who is not working on my case - was fairly defensive and told me these results are not “terrifying” but could not clarify if this was a diagnosis or a concern from the ultrasound and we went round in circles as I explained my confusio. My main issues being

- no one should receive diagnosis via text message let alone via a random link without even any context as to why it has been sent my way. This is poor practice for anyone let alone someone vulnerable.

- I had already been told they wouldn’t discuss my results until after blood work

Is this a familiar story to anyone? I will be pursuing a PALS complaint but wanted to share because I felt like I was losing my mind. I won’t know for a while what my results are.

[Catstroke]

hi Felicity

Apologies for not replying sooner, I’ve just read your post and I am angry for you.

PCOS is mugged off by the doctors but it goes hand in hand with a high risk of other co-comorbidities, including diabetes and uterine cancer. Yes, a PCOS diagnosis won’t kill you but it can cause greater problem if not treated properly and it very rarely is ever treated.

I am also 35 and, although I’m 20 years diagnosed I’m also struggling to come to terms with what it means for fertility. Again, there’s no recognition that this might be difficult to deal with and no support offered.

If you want to to talk feel free to reach out x

[Felicity2 in reply to Catstroke]

thank you so much for your reply it means so much. I’m sorry to hear you are going through infertility issues like me. It’s maddening that we are dismissed like this. It feels like the very fabric of our bodies is seen as a minor issue.

I’ve had since had bloods done. My testosterone was one above the threshold so they diagnosed mild PCOS and put me on the NHS fertility pathway but he advised I go private because they expect 6 months to pass before an initial conversation. It’s a lot to take in and doesn’t feel real because of how few symptoms I have (I’ve a BMI of 19 but it explains other issues)

I’ve felt more empowered since learning online about ‘Lean PCOS’ and diet and likely treatment - so much wasn’t discussed with my doctor but online communities are helping. I’m also getting a second opinion from a specialist because my confidence in my GP is so so low.

The NHS app shows abnormal blood results from nearly ten years ago that were never discussed with me. Perhaps because I was told I didn’t have PCOS when I was 18 - my GP said it can develop at any age.

Thank you again for your reply.