Can they tell you have no ovarian cysts even if 'ovaries are not visualised?'

[KittyFace]

Hello,

I wonder if anyone could help me... For several months now I've had terrible fatigue but all the normal blood tests (thyroid anaemia, celiac disease, diabetes etc) came back normal. I can barely get through a day, despite sleeping a good 8 hours at night, i always need a sleep for a few hours in the afternoon too.

Two weeks before I turned 30 I was diagnosed with an extensive deep vein thrombosis in my left groin, abdomen and upper thigh. There was no apparent cause for this (non smoker, young, active, no periods of immobility, not pregnant, no family history etc., and no blood clotting disorder that they could find).

My abdomen swelled up a lot, so that I can't fit into my old trousers, but the doctors seemed unconcerned by this.

Last week I ended up in hospital with severe pains in my left and right sides, where my ovaries are, and abnormal vaginal bleeding (heavy, clotting and my period was not due for 2 weeks). The pain is there as a constant ache, and then suddenly it will stab me and make my cry out it's so severe.

They (gynae department) did a pelvic exam & couldn't feel any masses. They did a transvaginal ultrasound and said that everything was normal, but they also said they couldn't see either of my ovaries because they were obscured by my bowel. They said they thought it must be something to do with my DVT and that the bleeding was just a 'red herring' and a coincidental weird occurrence.

The vascular team did a CT to look at my veins (they didn't look at my organs, just the vascular team assessed the pictures) and said the DVT was still there but getting better, and that it did not provide an explanation for the pain or bleeding. So they referred me back to gynae , who just discharged me with some pain killers.

I'm a bit worried about ovarian cancer, because I know that 10% of patients with unexplained DVT are later diagnosed with cancer, and that ovarian is one of the cancers associated with DVT. Also I've had the symptoms of fatigue, and also night sweats for a good few months, as well as strange IBS symptoms, a lot of gas and seemingly alternating diarrhea and constipation. The doctors really seem unconcerned about this and are not keen to do any further scans.

I know I am only 30 and ovarian cancer is rare in my age group, but then so is an extensive DVT for no reason. My great grandmother and great aunt both died of ovarian cancer, but they were quite old when they died. I am just wondering whether I should be reassured by the ultrasound scan not revealing anything, seeing as they couldn't see my ovaries on it. Is it really possible that they can have ruled out anything wrong with my ovaries without having seen them? I'm just wondering whether I should pay privately for an MRI scan, or what the best course of action should be. I know i should trust the doctors' opinion, but I just feel that no one is looking at me as a whole, assessing all the symptoms, but rather treating each individual symptom as one thing at a time. Any advice or help would be much appreciated. Thank you!

[Hidden]

Get a new doctor. Since there is history of OC in the family I would insist on a CT scan (not mri) with contrast and nothing less. Ultsasounds are not the best test method around either. Have they done a CA125 blood test, although not conclusive but it may give an indication if its elevated. You must not let this go, doctors do make errors of judgments so dont be fobbed off. The bleeding should not be dismissed. Your age should not be a decider either soplease insist on a CT scan asap. Love Paul x

[hil65wil]

I agree with Majorbem. Don't be fobbed off.

I hope it isn't OC but your symptoms need more thorough investigations. Get a second opinion.

Best wishes

Love

Hilary xx

[Hidden]

I agree with the comments above and request a ca125 blood test to be taken, but if it is any consolation I didn't get any pain before my diagnosis of ovarian cancer this is why it is called the silent disease, because the symptoms are very vague and apart from me needing to spend a penny more than usual and a swollen tummy there was no other symptoms... Best wishes love x G x

[doodoolatrice]

I agree with everyone above Get a CA125 test done. I went to the Dr's with vague symptoms ( I though I had a prolapse) and my Dr sent me for a blood test which came back at 229 two days later. Love Kerry xx

[Whippit]

Dear Kittyface

I'm really sorry you're going through all this. I really hope the DVT is clearing up with treatment. You are certainly unlucky to have had that.

I think one of the problems with the medical profession is that they're incredibly specialised so you've been sent to the vascular team and they're dealing with the DVT, the gynae is looking at other bits and they're probably not talking to each other. I don't think it's reasonable to accept a symptom is 'just a coincidence', or to put up with the gynaecologist saying they can't see your ovaries but they assume they're OK.

Do you have a good relationship with your GP? If you do I'd go back to him/her and ask a few questions. I agree with the others that it's worth having a CA125 test done. The problem with the test is that it can be unreliable and may be raised for other medical reasons. We wouldn't be aware whether that is the case for you but the GP would be able to advise you.

Ovarian Cancer is rare at your age but it is frequently mis-diagnosed. According to the Target Pathfinder Report 1/3 of women face delays of 6 months or more before they are diagnosed. Please do persist until you find out what is causing the pain, bleeding, change in bowel habits and tiredness. There's a lot of helpful advice on theTarget Ovarian Cancer website and they also have a symptom tracker.

targetovariancancer.org.uk/...

or use the online symptom tracker on the Ovacome Site. You'll find it on the following page:

ovacome.org.uk/beat-ovarian...

scroll down until you see the html 'Track your symptoms with the BEAT Symptom Tracker here' and click on that. I suggest you spend a few weeks monitoring and recording your symptoms print it off and take along to your GP to help with the discussion.

I hope we haven't added to your worries. I'd like to think your problems are caused by something else but it is worth being persistent until you're satisfied you have an accurate diagnosis and the appropriate treatment to clear up all these worrying symptoms.

Please let us know how you get on as we'll be thinking about you.

Loads of love xxx Annie

[Madz]

Hi Kittyface

I absolutely agree that you should seek further investigation and consultation, I work in the health profession and agree with Annie that silos of specialism are not helpful if you have symptoms that cross boundaries. Go back to your GP and request a second opinion, all being well you have nothing to worry about but do not be fobbed off as you have symptoms and there is cause and effect to consider.

Big hugs Amanda

[KittyFace]

Thanks so much for all this support. I think doctors often dismiss you if they think something is rare - I was dismissed initially about my DVT because I had no risk factors for it and it doesn't have often in young people for no reason.

I have asked my GP to refer me for another scan and they have taken blood for a CA125 test as you suggested. At the moment I have terrible pelvic and lower back pain, they just gave me tramadol, but it doesn't seem to be working, so I definitely need to get to the bottom of it!

Thank you all, you have been really helpful to me and gave me the determination and confidence I needed to persist with my doctor. Fingers crossed I find out what the matter is. xx

[Bgee in reply to KittyFace]

Hi I was reading this post from 3 years ago. Did you find out what was wrong? I'm having a very similar situation. Extreme pelvic pain with lower back pain and it radiates down into my right leg. Ultrasound today didn't show any fibroids, but they couldn't see my ovaries. This has been going on for about 7 months, and pain is getting worse, and fatigue is setting in now. Thought I would ask you. Thank you.

[Susan3]

Agree think you should go privately and get ct with contrast , you have enough on your plate without the additional worry .

Best of luck