This is Care Opinion [siteRegion]. Did you want Care Opinion [usersRegionBasedOnIP]?

"Awaiting a diagnosis for ten years"

About: University Hospitals Sussex NHS Foundation Trust

(as a service user),

At 21 I was diagnosed with see polycystic ovaries and suspected unicornate uterus after an ultrasound. I was told by 3 doctors ( all in the room at the same time trying to work out what they were 'looking at') that they had never seen this as it very rare, whilst they discussed it, they made me wait a room with expectant mothers and babies in and then told me my chances of having a baby were very low.

I left it a few years as I was terrified of what it all meant and then finally got the courage to go for a second opinion and was told after an ultrasound that I only had polycystic ovaries. This year I was still nervous about which diagnosis was correct so I asked my GP to refer me for another ultrasound a few months ago at the hospital in Brighton .

On the day the lady was lovely and said everything looked fine apart from the polycystic ovaries which I was expecting. I recently got married and have really excited about the idea of starting a family now that it seemed it would be easier. A few weeks later a get a call from my GP saying that they think I actually do have a unicornate uterus but as it was another ultrasound it is hard to tell for sure. So she referred me to a gynaecologist which can take up to 6 months just to get a date for the scan.

I have been waiting for 10 years to know if I have this condition. If ultrasounds do not show it correctly then why have I had three of them???? I am desperate to know the answer either way as I am now 31 (32 in March) and I need to know what the actual situation is. The complications of a unicornate uterus are very serious and could really impact my decision. I am frustrated and disappointed that I have asked for help for this long and still I don't know the answer! How can it take this long ? 

Do you have a similar story to tell? Tell your story & make a difference ››

Responses

Response from University Hospitals Sussex NHS Foundation Trust 15 months ago
University Hospitals Sussex NHS Foundation Trust
Submitted on 20/01/2023 at 08:44
Published on nhs.uk at 14:57


Thank you for your feedback. Unfortunately your details are anonymous so we can't get in contact with you. Would you please call our Patient Advice and Liaison Service on 01903 285032 or email uhsussex.palsworthing@nhs.net who will look into your concern for you. They are available from 10.00am to 4.00pm, Monday-Friday.

Thank you

Opinions
Next Response j
Previous Response k