My Ovacome
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Ultrasound clear

Hi,

I've been experiencing lower right and central Pelvic pain increasingly for nearly a year. Accompanied by bloating, back pain, occasional spotting, intermittent constipation and diarrhoea, and an increasing pain and weakness in my hip. I've finally met a GP who is willing to listen and investigate, and after an abnormal looking cervix by Pelvic exam by a nurse, I was urgently referred for an ultrasound and colposcopy under the 2 week rule (UK).

I've also had several blood tests which showed elevated levels of esr (15), c reactivate protein (29) and CA125 (45).

I had my ultrasound today (both external and internal), and although the lady said she couldn't locate my right ovary, she said everything looked fine and there was nothing to worry about.

I've got my colposcopy tomorrow.

I'm just wondering if anyone has had an ultrasound return as normal and later been diagnosed with a cyst or oc?

I've also got endometriosis.

Many thanks x

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I'm also a bit overweight and have unexplained tiredness and intermittent overwhelming fatigue x

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Hi Jessie,

I've a history of endometriosis which I'm sure you know can elevate your CA125 and cause all of the symptoms you mention.

However I would press for a CT scan if you are at all worried, unfortunately my ultrasounds were clear.

But my cancer started in the Fallopian tube. So not all diagnostics are totally reliable.

Keep recording symptoms, re visit Gp and if things persist despite the scans I think it would be my instinct to ask for a CT.

all the very best xxx

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Thanks so much for your reply. I've had horrendous endo since I was 11, 5 laparoscopies with ablation and generally a really rubbish time just before and during my period. However, I've never really experienced pain outside of my period.

If you wouldn't mind me asking, how did you suspect your symptoms were anything other than your endo?

Thanks again xxx

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It was the abdominal bloating that didn't come and go. I was finally diagnosed after 6 months back and 4th. The bloating and severe constipation being the final thing xx

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Oh ok. I've gained a lot of weight recently so sometimes it hard to know whether my distended tummy is actually bloating or weight gain. It's knowing your body verses self doubt. Thank you xxx

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abdominal and vaginal ultrasounds didn’t show a problem for me. My conclusion is that ultrasound is not always a good indicator for OVCA. Mine had spread to the peritoneum though likely started in the Fallopian tube. Hopefully this is not the case for you but I’d push for a ct scan. Good luck. D

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Thank you for your reply. If you don't mind me asking, did you have to push for a CT scan yourself or were the doctors pretty sure there was something wrong regardless of your ultrasound results?

I am worried but after yesterday, I started to doubt myself. I've spent a year explaining away my symptoms, excess weight, bad mattress, endometriosis, but I honestly feel like there's something else going on.

Thank you x

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Hi Jessie

Sounds like you have had an awful time of it and still need some answers. As the others have said I would definitely push for a ct scan to put your mind at rest . Especially as she said she couldn’t actually see your ovary .

Is there someone you can take with you to give you some backup ? or you could ask for a second opinion with a different doctor . Are you under a gynea specialist?

It may also be helpful for you to talk through your symptoms with the Ovacome helpline , they are lovely and could provide you with info and facts to take back to your dr to push for the ct scan .

The likelihood is it won’t be OC but you do need to have it discounted , your symptoms explained and a treatment plan you are confident with as you shouldn’t have to be in this pain and need it sorted .

Not sure how long ago you had the CA125 but maybe this could be repeated to see if it is stable or increasing .

Are you in the UK ? Am afraid with all the cut backs you have to be strong and push for answers.

Love and best wishes and let us know how you get on Kim x 💜

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Hi Kim,

Thank you so much for your reply. I am in the UK and it's taken me nearly a year to pluck up the courage to prepare to fight for myself with my GPs surgery, especially given horrendous past experiences with Doctors telling me my endo 'can't be that bad, try smiling more'. Luckily, a young newly qualified Doctor has just joined and having not yet been ground down my the system, is very willing to listen and investigate.

I've been having my blood pressure checked too, recently a 24hr one, and it's been very high. Did you ever experience this?

Many thanks xxx

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Jessiedee, looking at the particulars that you have mentioned, I have reason to believe that a CT scan will be in order. Sometimes an USG may not pick up certain lesions. Forewarned is forearmed in such cases. Moreover, why live in anxiety? There may be no cause to worry, after all....false alarm is also a possibility.

Naimish

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Thank you for your reply Naimish :) x

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Hi. Ive been having tests for a year with all same plus alot more symptoms, nothing on first scan, had bad pap smear had colposcopy and two biopsys. Even tho could see damage on screen biopsys turned out clear. Then sent to gyny was sent for another scan found a hemmarahgic cysts. Id had bloating for 3 months, id convinved myself it was oc then all of a sudden bloating went. After all other tests bloods etc gyny put me in for laparoscopy for endo, none found but did have alot of adhesions. On last scan before lap they said cyst had gone but found cysts on the back wall of uterus so now in for mri for suspected adenomyosis. As you have endo maybe mention adeno as they are more often seen together. Hope this helps as you can see all my stress for a year and nothing to serious thus far touch wood. Most likely end with hysterectomy tho.

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Thank you for your reply. I'm seeing my GP on Thursday regarding very high blood pressure so I'll make sure to continue to voice my concerns.

Many thanks again xx

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I would make an appoint with a gynecological oncologist. Or at least consult with one. Getting a cat scan of your pelvis would be a good idea, better than ultrasound.

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All good advice from everyone above. When I had several ultrasounds, they couldn’t ‘find’ my ovaries either. I was diagnosed with Stage 3c Ovarian Cancer later which I feel should have been caught earlier. Get an appointment with a good gynaecologist and get a CT scan as soon as you can, it may be nothing but better to rule it out. Good luck

Sophia x

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Hi Sophia,

Thank you so much for your reply. That's a scary thought. I feel like the lady saying my ultrasound was clear should have made me feel better, but it just didn't. I was actually shocked when she said she couldn't see anything worrying because I had convinced myself (from my symptoms) that all I needed was an ultrasound and finally everyone would realise I'm not moaning about nothing.

How did you know to trust your gut, or was it the doctors that pushed for more tests?

Many thanks and all the best xx

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Hi Jessiedee

The ultrasounds I had were the year before the OC was diagnosed and were because I had slight endometrial thickening which I was biopsied for and was ok,, but I feel sure if they had ‘found’ my ovaries on the scan or given me a ct scan the cancer would have been caught earlier.

I do hope you get some good help soon and that you are fine. Best wishes Sophia

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When my CA125 reading was high for the first time, I had all the scans, ultrasound and CT. They couldn’t find anything although I knew something was wrong. A year later I discovered a tumour which was quickly investigated and diagnosed as Primary Peritoneal Cancer 3c. I missed some signs too so I have been quite philosophical about the outcome, scary though it is.

I asked my Professor to explore why it wasn’t diagnosed sooner, and the simple answer is that it isn’t always detectable by imaging, even when the other signs are there. He changed the protocol for the Trust so people who presented as I did in the first place are blood tested and scanned frequently to catch it sooner. Look on Ovacome, Ovacare, Macmillan and every other website to be sure you know the symptoms to report. Pain during intercourse was one that I dismissed.

I think you need to be persistent, keep on at them, read, research, question until you are satisfied. All the above advice is useful, but do take a friend even if only to take notes. I always go armed with a list and ask as many awkward questions as I can!

Good luck and I hope you get some answers soon. Ali x

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Hi Ali,

Thank you so much for your reply. I have an appointment with my GP on Thursday to discuss my recent 24hr blood pressure test which came back very high so I will discuss my ongoing concerns with him then.

I feel like I know something is wrong like you said, but I also started to doubt myself when the lady said my ultrasound looked fine. She said she could see the follicle was about to rupture an egg which I thought was strange as I was due on in the next few days, and I did come on 3 days later. I thought the egg is released approx 12 to 14 before your period starts.

It's incredibly frustrating because I feel like all these symptoms can't be nothing, but I don't want to waste everyone's time if I'm being paranoid.

Thank you again for your help. All the best xx

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Get a CT scan from O&G Oncologist.Ultrasound could not catch my wife's bloating which was due to the left ovary tumour. Caught when 3C already.

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Thank you for your reply. I'm sorry to hear about your wife. I will press on with my GP xx

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yes I have....mis reading of the scan....don't want to frighten you but suggest you talk to your gp seriously about your worries....will give you more info if you want to pm me love Cx

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Thank you so much for your reply. I would really appreciate some more info but I'm not sure how to pm on here...

Thank you again xx

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just go on site and say you want to send a message....let me know if it doesn't work! C xx

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Hello, from what you say I should press for a CT-scan.

During my first ultrasound my right ovary couldn't be found either. I was told that because of my age, 67 at the time, ovaries shrink and it wasn't unusual for them to be difficult to find. It was there but hiding behind a tumour the size of an orange. I didn't have to argue for a CT-scan, it was just booked but also I had a CA-125 of 1250.

My only symptoms were increased frequency and urgency of urination for months, perhaps longer, which I put down to the inconvenience of ageing. This was being caused by the tumour pressing on the bladder so squashing it. I then had a slight pain in my right hip / pelvis which I plastered with ibuprofen gel and also consulted my GP who took it all from there, under the two-week rule.

It's not always easy to be assertive, particularly when you feel others training makes them more qualified than you to assess the situation correctly, but you know something isn't right with your body. It may not be OC, it may be something else but it needs putting right.

Good luck!

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Thank you so much for your reply. That's so scary, how is it even possible they can miss a tumour the size of an orange?! Really doesn't put your mind at rest does it.

I've had this increasing pain and weakness in my hip for nearly a year but considering I've gained quite a bit of weight, it's hard to know what the cause may be.

Thank you again xx

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No, they didn't miss the tumour, or at least I don't think they did, it was they couldn't find the right ovary (which was behind the tumour). Whether the technician knew it was a tumour, I don't know but of course she wouldn't have known what kind of tumour it was.

Something isn't right so you do need to push for a CT-scan.

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How did you get on today Jessiedee? Xx

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The results of my 24hr blood pressure monitor showed that my blood pressure was very high so he's put me on some medication for that. He's not sure why it's so high but I am a bit over weight. Did you have any issues with high blood pressure?

He had yet to receive the results from both the ultrasound and colposcopy so he said he'd ring me to discuss when those come in xxx

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No I didn't.

Really hope you get some reassurance soon xxx

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