Not sure what happens next...

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You've probably had these types of questions before so please excuse me but I need an idea of what will happen next from someone who's been through it themselves.

I'm 22 years old and have had all of the symptoms of ovarian cysts for the past 6 weeks. Finally got my doctor surgery to realise it's more than just a tummy ache and now my GP has started an ovarian cyst investigation. I've had a urine culture, blood test and have my ultrasound in a couple of weeks. Unfortunately I have a history of ovarian cancer on both sides of my family so this is all quite worrying.

But I don't really know what to expect next - the GP has said to get the tests done and then "we'll see". I feel like something inside me has changed and I just have this gut feeling. If the tests do come back positive, what usually happens next? I'd really appreciate any advice!



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  • Posted

    My symptoms started last summer, since then I had scans transvanginal ultrasound which found cyst on the ovaries.On 2nd April I had my op and had both ovaries and tubes removed, I am 66 so they thought it best to remove both so there is no chance of a reoccurance.Hope you get it sorted soon.By the way I have recovered well.
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  • Posted

    I've had problems for months now.  I've had ultra sound scans, transvaginal scans (internal scan), and a CT scan.  It was the CT scan which picked up my ovarian cyst.  I had to have a repeat US scan five weeks after, to check if the cyst had grown.  The cyst had not grown, so I have to be monitored now, to make sure it does not change.  As long as it stays the same. They are not going to remove it.  You are young so they will only do surgery if absolutely necessary, due to you maybe wanting children later.  Try not to worry about cancer, it is unlikely that it is.  Let me know how you to go on.
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    • Posted

      I'm not sure what's wrong with me, I started having abnormal bleeding, pink discharge, eleven months ago,so far I've had a normal camera and thry can't see anything, a smear, and bloods including swabs. But nothing as yet. Now I'm having a discomfort in my private area, headaches, abdominal discomfort, pink discharge hear and there. I'm worried sick that they've missed something? Any advice if possible pls. I see a specialist in three weeks, but it's dragging and I'm worrying because of how long it's been now .

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  • Posted

    Hi sh414.

    The ultrasound scan might be able to identify a visible cyst on your ovary, plus an approximate idea of the size and substance. The ultrasound is a simple and pain free experience so don't worry! Even if that scan can't identify anything, they might still want you to have more scans (like a vaginal ultrasound, where they go in from inside you to get a different angle. I had a big obviously visible cyst from the outside scan.

    The blood tests can help to identify the chances of a cyst being cancerous. A normal "CA125" test makes it less likely of being cancer (though it doesn't guarantee anything, and there are actually other reasons why your CA12 could be high that are NOT cancer, so it doesn't give the whole picture). Thankfully for me the blood tests were already back with my GP and were normal BEFORE we got the Ultrasound results, so we had an idea it might be a benign cyst at that point. Even so, the next stage for me was then to go on the "2 week wait" cancer specialist list, just to definitely rule out cancer. They will not make anyone wait more that 10 working days for that appointment, though mine did take about 8 working days.

    Depending on what the specialist thinks will then alter what happens with you. The cancer specialist was pretty sure mine wasn't ovarian cancer because it looked like it was just a big sack of fluid (which is usually a malfunctioning ovary rather that a cancerous growth). It was also "mobile" ie. not attached to organs much inside me. It was HUGE though (over 8 inches across!) so she sent me for a CT scan to double check there were no solid lumps inside it. Again, CT scan is no big deal, like an x-ray machine but for organs.

    At that point, for me, it became clear that I probably did not have cancer but that I needed to have this removed because it was not going away and was in fact getting bigger. I went on a waiting list for surgery to remove it. People go down all kinds of different routes at this point - depending on the size and substance of your cyst will change whether or not they will want to perform surgery and what type of surgery it will be. 

    Procedures can depend on your age and family circumstances a bit, too. For me, they advised I have the one ovary removed so this doesn't happen again. (And just in case the final tests DID show any cancer, at least that one infected ovary and tube would have already have been removed in the first operation). That suited me because I can cope with one ovary (still fertile) and am less worried about it happening again. If it happens again on my other ovary, I might want them to try harder to save my last remaining ovary! And I have heard of them doing that. For older women who have already had children, they often recommend a full hysterectomy just to eliminate the need for future risk or issues. I'm sure you will be given a full range of options if if it gets to that.

    Of course it might not get that far! I hope I haven't scared you. Just go for the tests for now and see what it is you are dealing with. The NHS took really good care of me in diagnosis, surgery and after, so hopefully everything will go smoothly for you.

    Keep us posted!


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