Someone please read this

Sorry for the long post but I've kept everything in for a while now and I'm just looking to get it all off of my chest 

 

At the beginning of august I started heavily passing really large blood clots, with a lot of pain - it crippled me to the point I couldn't walk, eat or do anything. I spent the next couple of weeks in and out of a&e/hospital - I was in a&e more times than I wasn't! I was given morphine a few times and I was admitted to hospital to deal with the pain, however nothing ever came of the visits and nothing ever helped with the pain and I was sent home still in pain every time. Eventually I saw somebody who arranged an outpatient ultrasound for me, however this was still 2 weeks away, I was still in crippling pain and due to go on holiday in a few weeks.

I had the ultrasound and was told they could see a cyst on my ovary - they described it as 'not small'. However this was all the information I was given and I was sent on my way again.

Fast forward to 2 weeks later and I still hadn't received an appointment to discuss the report from my ultrasound, so I phoned the hospital to chase this up. They told me that it was nothing to do with them and that it gets sent over to my GP. I phoned my GP, and they told me that they have not recueved any report. I then phoned the hospital back, and the person I spoke to told me that they couldn't even see an ultrasound on my notes so they didnt know what I was talking about. I was very frustrated by this point understandably. I phoned the hospital back the next day and the person that I spoke to told me that the sonographer who done my ultrasound was on annual leave, nobody else could do a report on it therefore I just had to wait for the results. It had been 5 weeks by this time. 

I went on holiday for 2 weeks, spent half of the time in absolute agony because of the pain. When I got back from holiday, I has a letter from the hospital for an appointment. I went to the appointment and saw a gynaecologist. She hadn't looked over my notes, didnt have a clue why I has an appointment that day, and in the first half of the appointment she told me that my symptoms did not match any diagnosis. She then changed the subject to my weight - I'm quite a big girl  I will add - she told me that because of my weight I have PCOS and that if I lose weight all of my problems will go away. None of my symptoms matched this diagnosis and I left the hospital feeling confused and completely humiliated. I have took what she said on board, and I have been walking more, eating healthier and i have started to lose weight. 

Fast forward to yesterday, when I had a follow up ultrasound to check if the cyst is still present. It is very much still present. I spoke to the sonographer about what the gynaecologist had told me, and the sonographer laughed and told me that it is definitely not PCOS and that it is nothing to do with my weight.  She told me that shes slightly concerned about the cyst and She has urgently referred me to have cancer blood test, and has written to my doctor to tell them that I need to be referred for further investigation immediately and I should hear from then within this week. 

Obviously this has scared me slightly because I was under the impression that I had polycystic ovaries and that there was not a problem and losing weight would help - and now 2 months later I have been told that none of that is relevant and I'm now having to take a blood test to detect cancer and be referred urgently. 

I appreciate the urgency because it's been a long time of no answers, however I'm terrified of what might happen

I dont know why I'm posting on here, and im sorry that it's long, I just dont want to stress my family or partner out with any of this but my head is in absolute overdrive 

  • Hi Cjk and welcome to the forum.

    I'm sorry to read about the conflicting information you've been given on your very frustrating journey to finding out what's causing your symptoms.

    I know there isn't much I can say or do to take away the worry about your upcoming tests but I just want you to know you're not alone and our community are here for you.

    I really hope writing everything down has helped to declutter your mind a bit as well.

    Wishing you all the best with your results when the time comes Cjk.

    Kind regards, 

    Steph, Cancer Chat Moderator

  • Hi Cjk. Welcome to the forum.  I hope we can help you. 

    You've been badly treated and I think you should feedback this information to hospital, and maybe consider a formal complaint if this continues. 

    The hospital should have a Patient Advice and Liaison Service (PALS).  You'll need to find it on the hospital website or through this link.  Quite possibly an informal chat with a member of the service will be sufficient to sort out these issues.  I suggest this should be your first step and it may be sufficient. 

    If the PALS is unable to resolve the issue, then you may need to consider a formal complaint (see How to Complain to the NHS).  You could also talk to the independent NHS Complaints Advocacy Service.

    I really think you should not less this pass. If they're doing this to you, they could also be doing it to someone else. 

    For the next bit I should remind you that I'm not a doctor.  I expect that the blood test the sonographer mentioned would be a CA125 test.  This is NOT specific for ovarian cancer, and you should expect it to be raised when you already have known ovarian cysts, so please don't panic if the result comes back high. 

    I should also say that being put on an urgent referral for cancer is not the same as having cancer.  Statistically, 9 out of 10 people put on an urgent cancer referral DO NOT HAVE CANCER.  Of course, no one enjoys being put on an urgent referral, but there is every reason to hope that it will all turn out ok. 

  • Thank you for your reply.

    I thought about complaining before but my problem is that I'm too nice! But now after reading your reply and reading my post back, I think you're right.

    Yes it is the CA125.  Thank you for that reassurance. Do you know what the steps are for finding out if it is cancer? I've just had enough now and I just want to know if there is a problem.

    I'm really grateful for your reply, thank you.

  • Hi Cjk.

    I'm a bloke so I don't have any experience of what happens at an ovarian cancer referral! 

    I suggest you ask a new question: "What happens at an ovarian cancer referral?"

    The more specific you make the question (esp mentioning ovarian cancer), the more replies it's likely to receive from members who can give you a straight answer. 

  • I will do that now.

    Thank you for your help, its surprising the difference it makes in my head just being able to get out my thoughts and worries!

  • That's why we're here. I pleased we can help.