Hello! I was referred to gynaecologist by my GP because for over a year I was having heavy irregular periods and bleeding every 10-14 days. My appointment was delayed 3 times and I finally saw someone in October. I was sent for an ultrasound and transvaginal scan. You don't get told anything when you're in there and then less than a week later I had a call saying I needed an urgent CT scan. I still didn't know what was going on. I have since had a letter from the consultant saying there is a 4cm cyst on my left ovary with papillary projections which needed further imaging. I also needed an urgent blood test to test for tumour markers.
Nothing has really been explained to me and my next appointment with the consultant isn't for another 2 weeks. I hate not knowing what's going on and I have no idea what to expect. Will I need surgery? Is it possible that I have cancer?
The CT scan I had was thorax, pelvis and abdomen with contrast. Why did they need to scan my chest?
I'm in so much pain made so much worse by the stress of not knowing what is happening. The pain is mostly in my lower back and low pelvis. I do have some bloating and nausea too.
Has anyone been through similar?
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SheRex
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Going through similar at moment and now nearly into a year of it going round the houses. Nothing was really explained to me either so I am trying to get another consultant now and have apt 30th. Just trying to sit tight and not panic. I have already seen 2 consultants but going for third opinion as have found it to be p**s poor. Is there a gynae nurse you can talk to on the team? Try not to think the worst. I was making my stomach worse stressing and that will only increase pain. My pain is same pelvis feels like period pain all the time, backache and bloating. Turned to gluten free bread today to ease back on the bloating, it has helped..hugs, you will get answers. Have you had the tumour markers done yet?
Hello SheRex - what an awfully worrying time for you. Ova104 is so right that fear and anxiety can also bring about feelings of nausea. The waiting is horrendous. I don't see why your GP could not give you some further information on why they want to do the further scans? They will surely have the report from the hospital (the trans vaginal scan and ultrasound). My GP always says that investigations are to rule out cancer - not rule it in. They want to make sure that it is 'not that' before they proceed to advise on anything. I am not sure if you've had your CT scan or not as yet - they do the full abdomen/thorax to make sure that everything is ok. I had to have that done as well. They use a contrast dye as that will show up anything that needs further looking at. I am sure you will get lots of other replies and support. We are always here if you want to talk. Whenever you start to panic about it being cancer, always remember that it might not be. Try and keep a balance in your head with its possible but equally - it may NOT be. Hugs are sent your way x
We've all been through the awful waiting stage. We can't advise, you really do have to wait for your results and see what they say, but on my other group (Ovarian Cancer UK on Facebook) we always recommend distraction therapy - find nice things to do with the people you love most. Ovacome has a nurse-led advice line on 0800 008 7054 or 07503 682 311 - you might find it helpful to have a chat with someone there. Sending hugs!
Thank you SopSinger for recommending our Ovacome support line for anyone who would like to ask any questions or talk anything through. I must highlight that this is not a nurse-led service, but our friendly team are on hand to offer information and support.
Hi, sorry to hear that you are going through this. I am going through something a bit similar.
I had an abnormal period back in July and sought medical help from my GP. She organised an ultrasound scan straight away. It revealed a very large cyst - 17cm x 16 x 10. It didn't appear cancerous apparently, and the sonographer also checked my abdomen including my kidneys (nothing sinister was found there).
Because the cyst is so big, I had the CA125 test. It came back normal, so more investigating was needed. I had more blood tests and an MRI scan with contrast dye. My chest and pelvis was checked and a few weeks later, I received a letter saying that the blood tests results were normal, but they think they can see Endometriosis that is affecting my bowel.
Prior to this diagnosis, I was a complete mess worrying that I had ovarian cancer. I actually fell to pieces - the not knowing was killing me, so I can understand how you are feeling right now. It's easy for me to say not to worry, but it's probable that you've got a benign condition like I do, especially since you are at an age that you are still getting periods (it's extremely rare for cancer at that age).
All the tests that you have received so far are to rule out cancer, and not to rule it in as another answer said.
As for the pain you are in, please go back to your GP and explain how you are suffering - they will try their best to find pain relief that works for you, and may even help with the stress.
I was seen within a couple of weeks, but at no stage was I told what was going on. I kept asking, ‘is it cancer?’ The team can’t really tell you anything at this stage until they know. They just tell you about the next stage in your diagnosis and treatment. The medical teams can’t really tell you any facts until they have had an exploratory operation, or further info from various scans etc.
I was told that I would need surgery so that the surgeon ‘could see what’s going on in there’. It was cancer, in my ovaries and omentum and the surgeon got rid of it all (I still say fingers crossed, even though it was over 20 years ago). The operation wasn’t as scary as I’d thought it would be and I recovered quickly. I did need to take things easy for 6 weeks because it was a radical hysterectomy with a vertical scar. A lot more are done by keyhole surgery now though. The full story is on my profile.
I’m sure that the team on the Ovacome helpline would be able to answer any questions you have. It’s on 0800 008 7054 (Mon- Fri office hours). There is also lots of info on the ovacome website ovacome.org.uk
Hi. As someone said your age is on your side. The process they are following is the correct one to rule Cancer out or in. I think they don’t like to scare you by stating the possibilities as if we wouldn’t be guessing and googling and thinking the worst. When I was told about a large cyst on my ovary/tube I tried to ask about it and the nurse dismissed it saying “let’s not get ahead of ourselves.” Even after a CT and a PET scan showing cancer my gyn oncologist wouldn’t say it was cancer until after the operation and pathology. Try to distract yourself and be reassured that they are being vigilant and doing the right things. Hugs!
Hi sheRex . Similar boat. Not with the periods. Mine are heavy and painful. But the pain u are experiencing is what i have been having now for 2months. My gynecology gave me a month waiting to see them!. But im going back to my gp next week.
You can see your reports on the nhs patient website , what the gp send and the gynaecology aswel as test results too.I have done that and seen the gp wrote my pain was period related when its not. Anything they wrote medical i didnt understand i just googled the meaning of.
So now il be going back to fix it. So hopefully il get seen to sooner.
My pain is pelvic and lower back too when its bad it radiates down my legs makes me nauseous and the bloating comes and goes. Iv gone off food just dont feel like eating and lost a little weight(that i wont complain of)
I had my CT scan over a week ago. It's just a waiting game now until my appointment on 4th December. Trying to tell myself that if there was anything really concerning they would have called me by now but I know that waiting times like this are fairly normal. I'm trying to stay positive.
It's too easy to Google and see all of my symptoms pointing to the big scary. I read that papillary projections on an ovarian cyst ultrasound increases risk of malignancy 6-fold. I think it was the word 'urgent' that really scared me when they booked me for the CT and blood test.
The pain was unbearable during my period last week and I've birthed 3 big babies! I could not sit/stand/lay still. I still have the pain mostly in the evenings now. The GP prescribed cocodomol but I try to just take it in the evenings if I need to. They don't really help too much to be honest.
I have tried looking at my health records on the NHS patient portal but in results there is nothing at all! I'm not sure if it's because the consultant has ordered all of the tests and so the results are going to him at the hospital and not being reported to my GP.
I am trying to keep busy, work and having 3 kids helps. I've had days where the pain has made me want to call in sick but I've pushed myself to keep going. I think I'm just telling myself that they will do surgery to take out the problem and it will all be ok.
I'm so sorry for any of you experiencing similar or having a diagnosis, huge respect to you all for your strength and to give advice when you are going through it too xx
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