Do external ultrasound scans (and those who interpret them) often miss early gynaecological cancers and endometriosis?
The gynae doc (not oncology or endo expert) who read my scan said 100% not ovarian cancer.
How can she be so sure???
I’m sure there are people on here who have been misdiagnosed. Or just not diagnosed.
Btw when asked directly, she said possibly could be endo but because of my age (52 but still having periods) they wouldn’t do anything if it was that.
She said it isn’t normal to have pelvic cramp daily but couldn’t say what it was only that it wasn’t OC (not sure she should claim 100% certainty on that).
No further forward.
She also said not to repeat ca125 which has been 58, 65 and 48 respectively.
GP seems to be leaving it at this.
I also thought because bladder is close to uterus that there was a connection because cramps seem stronger after passing urine and lying down.
Anyone have any ideas?
I’ve to hand in urine sample but it’s not an infection I’ve had since February.
I can tell you are worried. So let’s take it step by step. Whilst endometriosis can cause daily pain I won’t from experience say it’s cramping pain. But you are right endometriosis doesn’t always show up on scans but nothing you’ve said jumps out endometriosis from my own personal experience. It’s not completely true specialists wouldn’t operate on endometriosis but if it’s minimal (hasn’t distorted organs within the pelvis which would show up on an ultrasound) it most likely would be non active once you have finished the menopause.
With ovarian cancer there would be clear markers that would show up in your blood. Whilst the CA125 marker isn’t specific for ovarian cancer your numbers are completely normal. If one of your numbers came back as 400 suspicions would be raised and further tests arranged but the fact that you have 3 done and they’ve come back normal is good news.
Ok the connection you have made with the uterus and bladder being very close together is spot on. The number of people who suspect they have endometriosis but it comes back negative and further tests etc show the pain is actually from the bladder. I’ve been rather unfortunate in that I have interstitial cystitis along with endometriosis and adenomyosis. With interstitial cystitis the urine sample will always come back negative as it’s not an infection. I personally would ask to be seen by a urogynaecologist or urologist who can diagnose. A GP can’t really diagnose this condition as it can mimic other conditions. There is lots that can be done to help if you have this condition and it’s not all medications, some of it is lifestyle changes. The first change they often try is dietary changes. I wouldn’t discuss my case as I’ve got a refractory type which is non responsive to the medications + surgery and lifestyle changes. I’m on an off licence treatment. I’m hoping to put together a post about IC in the next week or two which you might find interesting. As it’s likely you will have to wait to be seen by a specialist it might be worth while looking at lifestyle changes and keeping a detailed pain diary. The diary should include whether you e had pain that day, pain rating out of 10, any changes to pain during the day, any medications take + response, anything that caused the pain eg fruit, urine infection etc. I hope this helps
Thank you for taking the time to respond. 🙂Mainly I put things down to my age and peri menopause. I’m on HRT and symptoms coincided not long after switching involuntarily from patches to oral hrt.
I only mentioned the cramping incidentally to a nurse when I was at surgery for something else. She took ca125 and GP requested ultrasound.
Interstitial cystitis definitely had come into my thinking. I knew something in that area was changed. Uterus or bladder or large intestine is my guess! But the feeling is the same, for me, as the start of a period when I feel a heat or cramp in uterus.
It’s more of a discomfort / heat and mild cramp rather than pain but I do think I have a high threshold for pain.
I’ve still to follow up with GP.
I suppose I have to believe gynae doctor that there is 100% no ovarian cancer. I just wonder what’s causing it and don’t want to regret not trying to find out if later it turns out to be something not good.
With both sets of results being clear and consistent in the case of the blood work the doctor can be certain there is no cancer present. That doesn’t mean to say she’s certain that in five years from now you won’t get cancer. It’s almost certain that most of us will experience cancer in our lifetime. The statistics used to be 1 in 3 but I believe it’s thought to be lower. Thankful many of us won’t get cancer but will be screened for it because of age or will get symptoms that need investigation.
Whilst there are some similarities for interstitial cystitis it could equally be IBS which if I’m honest most of us will experience at some time in our lives. It’s a myth that sufferers get either diarrhoea or constipation or a mixed type. Many sufferers simply experience cramping and even severe pain. Even if it’s the same pain you experienced during your periods IBS is known to flare up during a women’s periods. Some sufferers only get it during their periods which again leads the person to believe they have a gynaecological cause for their pain. Strictly they don’t but loosely yes they do as it only occurs during their periods. It’s for this reason that many gynaecologists, patients and other specialists are sent on a wild goose chase. Again I would look at your lifestyle including stress levels and also the FODMAP diet which is known to be beneficial for IBS and also bloating in general. IBS is now thought to be due to wrong messages being sent to the brain from the bowel and back again. It’s not a dustbin diagnosis that many patients/other people believe it’s a genuine diagnosis and genuine illness. So my advice to you would be to again keep clear pain diaries that can be downloaded from the web and note on the top the date you made changes to your lifestyle and diet and what they were eg 15/12/2020 started FODMAP diet - eliminates sweet corn. Started taking peppermint capsules or buscopan. You don’t need to eliminate huge amounts of foods all at once but if it does become confusing you could ask your GP to refer you to a dietician. In some areas of the country it’s relatively easy to get a referral whereas in my local area you have to meet certain criteria, but it’s worth asking as a sympathetic letter to a specialist works wonders. I hope this helps
I have stage 4 endometriosis and prior to diagnosis they kept just saying my right tube was blocked - this is all they could see on a scan.
When I had my first laparoscopy my insides including bowel, bladder, nerves and ligaments were obliterated by disease- the worst being my left side.
I’ve since had both tubes and left ovary removed and will never have children of my own.
Thirteen years they wasted with these scans and fobbed me off telling me nothing was wrong and now I’m in pain every day.
I’ve had 4 pelvic operations, 2 chemical menopause and 1 bladder operation and nothing has god rid of it and scans continue to fail to show the anything near the full extent.
Sorry I’m not more positive, it must be extremely worrying for you and I send you my best wishes.
We know our own bodies and we know when something isn’t right and there is nothing more frustrating xxx
For a true diagnosis for endometriosis I had a laparoscopy procedure. Symptoms for me included severe abdominal cramps and severe bleeding. In the end I had a hysterectomy (aged26).For me I had to have faith in my consultants to diagnose/treat any issues found. It can be really frustrating and worrying that what we may think we have wrong medically doesn't show up on scans.
I have multiple conditions that are all related causing debilitating pelvic pain that have only been diagnosed in the last 5yrs, I'm now in my 50's.
I changed doctors and hospitals as I had lost confidence in my doctors. We know our bodies better than anyone, and as suggested keep a diary and look out for varying symptoms.
Sadly not all conditions are diagnosed easily and can take a long time. I hope you get answers for your concerns and get a treatment that works for you.
Wishing you good health for the future and stay strong!!!!
Please don’t worry about sounding like a hypochondriac. At 16 I had a bad case of glandular fever. Unfortunately the virus never disappeared but instead kept flaring up. I was sent to a psychiatrist by the locum GP who eventually took over my fabulous family GP. The psychiatrist confirmed I had no eating disorder that I had been accused of as my weight had dropped from 7 and half stone to 6 stone. He said that I was suffering from a genuine physical illness. The GP hated that and wanted to send me to another psychiatrist. It was only when I’d just turned 21 and sent to a London hospital they discovered the virus was flaring up still which is why I kept complaining of the glandular fever symptoms. I was then diagnosed with ME which I still suffer from today although I have improved. It was the first of five chronic illnesses that were ‘missed’ despite repeated visits to GPs. My most recent one is Sjögren’s syndrome which unfortunately involves my bones and other organs. This took 23 years to diagnose! So what I’m trying to say is if you or anyone gets sent to a psychiatrist please don’t worry too much. I know it can be extremely upsetting as I felt like that but with a symptom diary to hand you’d hold a lot of power and can demonstrate to the psychiatrist you do have a chronic illness that needs treatment. Please don’t give up!
Thanks Alaine. I’ve been a mental health nurse for just over 33 years. I’ve lots of experience with psychiatrists on the same side! On the ovacome / and other OC site, many people say the ca125 is misleading and that my levels are more raised than theirs was and they have stage 2,3 or 4! Anything over 35 is not normal which is why GP made the referral for scan and gynae follow up. So it does indicate something isn’t right.
Unfortunately the CA125 test is misleading in many cases but you’ve had nothing indicating ovarian cancer on an ultrasound. The ultrasound isn’t good with endometriosis but it’s effective for ovarian cancer. With the CA125 test your levels can be raised either as a one off or as a series of tests. One of these can be depending on what part of the menstrual cycle you are at, if you have an infection even if it’s very minimal, stress, HRT, benign gynaecological conditions including fibroids and endometriosis. With endometriosis if it’s above stage 2 the levels can reach into the hundreds. This is why it’s important that a ultrasound was performed to rule out any malignant pathology. Whilst they’ve mentioned on another forum your levels are higher than there’s the fact your levels haven’t continued to rise is very reassuring. With measuring levels of hormones or antigens such as the CA125 antigen there is usually a normal range, a slightly raised level and a worrying level. Have you asked the GP what range you come into? I think the fact that a gynaecologist isn’t worried about your levels and requested no further testing of this antigen is very reassuring. If there was any suspicion of ovarian cancer on your ultrasound which is the first test used to look for ovarian cancer they would have had you in for further tests and surgery. I completely understand you’re worry as I can feel it from your posts but please don’t. As I’m sure you already know with your job worry feeds into further worry and becomes a vicious cycle which I think most of us have experienced on here. I also think the pandemic hasn’t helped especially with those trying to reach a diagnosis as face to face appts are very limited with both GPs and specialists plus the additional anxiety many of us have felt.
I have another suggestion for you. Why don’t you write to your GP expressing how worried you are and that you’ve been given some suggestions on what it could be and that you are going to keep a pain/symptom diary for the next 3 months along with some lifestyle changes and see what happens. At the same time ask for a face to face appt with the GP not a nurse or PA but them so you can go through it. Ask for a double appt so you have the opportunity to say everything you need to, such as what worked and for what symptom, what didn’t work and why etc etc. That way the GP might be able to say yes it looks like it’s IBS for instance I can see this worked but this didn’t work quite so well so let’s try this instead or actually it looks like you might have this instead so let’s do this test to confirm etc etc. You’d be surprised how effective this is. I often email my endometriosis specialist if something isn’t quite right and it then gives her focus for my appt or my appt is bought forward. I’m always here if you need anything so please just shout I’m never far from my phone
But what I’m saying to you is it can be raised for completely innocent reasons. You are looking at it as though you have cancer. The CA125 was originally thought to be specific for malignant conditions but then further reasons has demonstrated clearly that it can be raised for innocent reasons such as stress, during the menstrual cycle in females across the age range, being on HRT which you have stated you are and is usually given for some women who need it when they are peri menopausal, if you have a cold or other infection etc etc. There will always be exceptions, some women naturally have higher levels of CA125 in their blood with anything abnormal being found during investigation. The draw back is that because it’s not measured for routinely throughout life it’s impossible to be sure that this is the case. The gold standard for ovarian cancer is CA125 and if found to be above 35 then have an ultrasound which has been normal in your case and free from any tumours. The information in bold below is taken from Patient info and supports what I have already said. The article also mentions some of the benign reasons for raised levels some of which I’ve alt mentioned
Does a CA125 result above 35 mean I have ovarian cancer?
No. The level of CA125 in your blood can increase for other reasons. A CA125 blood test result above 35 is not in itself a diagnosis of ovarian cancer. If the level of CA125 in your blood is 35 or higher, your GP should arrange for you to have an ultrasound scan of your tummy and pelvis. The ultrasound scans will create pictures of your ovaries so that they can be checked for anything unusual, and will help your GP gather more information.
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