I know this is the 'silent disease' and I don't want to look like a hypochondriac, but can anyone help?

Hello, I hope nobody minds me asking this, but I am going crazy with worry.

My last period lasted five weeks and was very heavy, bad cramps some days, mild ones on others. When it stopped, my doc did a pelvic exam and said all was good down there, he also did a smear and said my cervix looked fine. The period ended about a week ago.

What is worrying me is that I am extremely fatigued (have been for the past six months and I went to the doc about it). I have been diagnosed with depression and perimenopause (I am 46).

My fatigue is so bad, that I have been awake since 8.30 this morning, have done no more than make tea and read the paper, and I am exhausted and want to go back to bed. I have some time off work at the moment and I am sleeping most of the day. That's not right, is it?

I also have a terribly swollen belly, it has always stuck out somewhat, but now I look seven months pregnant. It is quite solid around the abdomen but a bit jelly like where my C-section scar is. And, my other symptom is needing to urinate frequently, in fact, I am up three times a night.

I have night sweats and this past week I have suffered from constipation - which I never have. I have bad heartburn all the time too. Oh, I also hardly eat anything, I have no appetite, and when I do feel hungry, I am full after eating a few mouthfuls - that has been going on for about two months.

My doc seems to have the wait and see attitude, puts it all down to perimenopause. I have never shown him my stomach as it embarrasses me how big it is.

I am due an appointment with the nurse practitioner on Monday, should I ask her about ovarian cancer? I will show her my belly...even though nobody has seen it for years :-)

I feel like a hypochondriac and don't want to be at the doctor's office all the time, and I certainly don't want to appear to be a drama queen, but I am worried.

Thanks for reading my long list of complaints, and sorry to take up space when you lovely ladies have more important things on your minds

xx

32 Replies

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  • Hi,

    You are not acting like a hypochondriac - there is obviously something wrong, and ov. ca. is one of the possibilities. Do tell your gp practice everything and insist upon a ca125 blood test. I think they should refer you for a scan whether that is elevated or not.

    I hope it turns out to be easily treated - but don't just leave it. If it's the worst, it's best treated as soon as possible.

    Isadora.

  • Dear Teabiscuit

    I'm sorry to hear youre having such a horrible time but glad that you have found this site.

    It's good that you're seeing the nurse practitioner on Monday but I also think you should get an appointment with your doctor and explain about your swollen abdomen, your appetite problems,etc and how worried you are.

    Don't let him delay referring you for other tests. Hopefully all will be well but you need to get answers and to set your mind at rest.

    Check out the BEAT page of the Ovacome website for the symptom tracker.

    Wishing you all the best

    Linda

  • Thank you for your replies.

    Linda, I have filled in the BEAT symptom tracker and will print it out to take with me. I hope I can get my doc to refer me for more tests, but the last time I saw him he just said that if my period is abnormal again I would probably have to go for a scan.

    Isadora, thank you for saying I am not a hypochondriac :-) I really feel like one right now, but I just know that I am not right.

    Thank you again xx

  • Hi! You are not a hypochodriac! About 10 years ago now I was in your position, I kept being told it was TAAT (ie time-wasting;-)), it could be my age, my job, menopause, anaemia, stress, etc etc. However, I KNEW I wasn't right. Don't be fobbed off, I'd try ringing the Ovacome nurse helpline on Monday (0854 371 0554, I think ... ), and get a bit of advice. I would want it checked out, if it were me.

    Good luck

    love Wendy

  • Thank you Wendy, I will ring the number tomorrow. I do have an appt with the nurse practitioner tomorrow for something else, but will bring this up and insist on being tested.

    It is scary how many women are fobbed off, I feel for you, it must have been awful but I am glad to hear you didn't allow them to dismiss your concerns.

    xx

  • Dear Teabiscuit

    I am sorry to have to say this but your doctor needs to wake up! He/she has a duty of care to take your problems seriously and "the wait and see attitude" that you describe is not helpful.

    Doctors' surgeries have been bombarded with information about OVCA during the last two years in order to raise awareness about a disease that is not "silent" if the signs and symptoms are taken seriously. It is all about joining the dots and to this end Target Ovarian Cancer launched a very effective campaign : targetovariancancer.org.uk

    In addition, all doctors' surgeries should be aware of the national guidelines issued by NICE (National Institute for Health and Clinical Excellence). The protocols to follow in your situation are very clearly outlined by NICE and doctors are obliged consider the relevant clinical pathways:

    nice.org.uk/nicemedia/live/...

    You have several problems that need to be assessed both together, as a whole, and separately. The swollen abdomen, difficulty in eating, bloating, constipation, urinary frequency and extreme fatigue that you describe may or may not be OVCA but you need to have the relevant tests and assessment ASAP. You say that you have had a cervical smear but this is not a diagnostic tool for OVCA and a normal smear result, although reassuring in itself, does not rule out OVCA. One of the factors causing the tiredness could be anaemia caused by a five week heavy period. The heartburn may be due to the stomach itself being pushed upwards due to the pressure of the swelling lower down in the abdomen. The urinary frequency may be due to the greater pressure within the lower abdomen or it could be a urinary infection. All these issues need to be looked at closely.

    You say that you are being treated for depression. Although I have never met you and do not know your personal circumstances, I wonder if your depression has much more to do with a debilitating catalogue of physical signs and symptoms and worry that would wear anyone down?

    Finally, I would like to stress that you are neither a hypochondriac nor a drama queen. The Ovacome site will offer you all the support you need. Please let us know how you get on.

    Best wishes

    Isabelle

  • Hello Isabelle

    Thank you for your reply and the links. I have to agree with you about my doctor, he really does need to wake up - but at the same time, I need to take more control and be a little more proactive with what I want him to do (it's hard though). Funnily enough, he told me he had a gynaecological seminar to attend last Friday - I wonder if anything rang a bell for him? Who knows, maybe?

    I think you are right about the depression, although I have had a very difficult few years, I went to the doc six months ago complaining of how tired I was. That was when he diagnosed me with depression - after blood tests for thyroid, diabetes etc. I felt depressed so just went along with it. But my fatigue has just got worse. I think it might all have to do with feeling so poorly for so long.

    I feel awful today, and was so dizzy earlier when I stood up from my chair, I fell against the wall and knocked my head. Ouch!

    I can't wait till Monday to get into the doc's surgery - even though I only have the nurse practitioner. I will insist that they check me properly. I am so fed up of having no life because I am feeling sick or tired all the time.

    I will let you know how I get on.

    xx

  • Hello Isabelle,

    Like everyone else has said ... you are not a hypochondriac. All your symptoms sound suspicious to me and your Dr should have pursued your symptoms more aggressively. After a 5 week period you are probably very anemic. Did your Dr send you for blood tests?

    Really, it's no wonder you're so tired. I was once very anemic due to heavy periods (many moons ago:-) I was one of those people who never went to the Dr unless she was pregnant or nearly dying:-) Finally after 3 successive months of extremely heavy periods, I finally made an appointment because I was getting dizzy and had a throbbing headache that wouldn't go away. I asked him if it was possible for a person to haemorrhage during a period. He said, "Yes, definitely!" He then sent me for a blood test (immediately) and just as I arrived home the phone was ringing.

    "My dear girl" ... he said. "Get to the hospital right away, you need a blood transfusion, in fact it is so low its below survival level."

    I had 2 kids in school at the time and a 2-year old at home, so I couldn't go right then. After explaining this to him, he ordered me to be at the hospital early the next morning. I had 2 units of blood infused on that morning.

    So, what I'm saying is, don't take chances. You have many symptoms that scream for attention. I hope your Dr will do the right thing for you and investigate further.

    Good luck and please keep in touch to let us know the outcome.

    Sandy.

  • Hi Sandy

    Thanks for your reply, although you addressed it to Isabelle, I am assuming you meant me ;-).

    No, my doctor isn't send me for blood tests, just kept telling me that it was perimenopause and 'let's wait and see'. He did do a pelvic exam and said it was all fine.

    I just can't wait till tomorrow now so I can get started on pushing for some kind of diagnosis - whatever it might be.

    Wow, what a frightening experience you had.

    I will most definitely let you know what happens.

    xx

  • Even seeing the nurse tomorrow, if she considers it necessary she can get a doctor involved from there (or should be able to!).as you say, take a full list with you, write it all down beforehand, and take it all with you along with the Beat form. Perhaps a different doctor in the practice would take it more seriously.

    Good luck

    Viv

  • Dear Teabiscuit!

    You are notbeing hypochondriac. See your Gp and demand some attention. This is not depression or your age (the assumption all males seem to make regarding women and any symptoms of this kind) I once told a doctor when asked my age, that if it was the (blank blank) menopause I had been going through it since the age of 8! Can't remember what the symptoms were!

    The symptoms you describe require more investigation rather than prejudiced assumptions. I started a diary to remind me what to ask the doctor about and have kept it up ever since. It helps me to focus on what is long lasting and what is just a pssing thing. Ie to pick up on symptoms.

    My GP fast tracked me! You don't say how old you are but my GP and the nice guidelines say that any woman over 50 presenting with these kind of symptoms should have a CA 125 test as a matter of course.

    Good luck with the nurse.

    Margaret!

  • dear tea biscuit.I went to my doctor with similar symtons and was told i had i.b.s.In my heart i just knew it wasnt and i went back to another lady doctor and she felt the swelling immediately but this was 6wks. laterMy tumour was 13 cms and he never even found it!I was fast tracked through the system then operation chemo e.t.c.All of the o.c. sufferers I have met were all mis diaognoses with either i.b.s, or divuticulitis.I really dont think a lot of the g.p.s take it seriously enough,Us women may not be professional health experts but you know your own body and you know when something is not right.I give talks on early signs of o.c. and I tell all the women to insist on tests if they are not happy.Good luck will say a prayer for you.una belfast x

  • Thank you all for your replies. I am so touched buy the help and concern from this forum.

    I am feeling very nervous about my appointment this morning, but have a list of symptoms for her (my printer won't work so I can't print out the Tracker).

    I just hope I don't allow myself to be fobbed off with everything being either perimenopause or depression.

    I will post when I come home and let you know what happens.

    xx

  • Hello

    Well, I am home now and the outcome is I am going to have an ultrasound within two weeks.

    The nurse didn't seem too concerned about all my symptoms, but did get me on the table to palpate my belly (which I asked if it was just fat or swollen, she said she didn't know). Then she called in my GP - then I felt like an idiot, like a hypochondriac. So he palpated the belly, listened with his stethoscope. When I stood up, I showed him my pregnant looking belly and he said it was my colon causing that. That is odd to me.

    He also said that he would not order the blood test CA125 because he said it can give a false result and he was sending me for a scan anyway.

    I am not sure how to feel about all of this. I am glad I am having the scan, but am scared they are just giving it to me to placate me? Or am I being over-sensitive? The GP didn't ask about the other symptoms at all and as I said, the nurse didn't seem concerned.

    Just before I left, I asked her about them again, and she said that because I had blood tests when I first went to the doc six months ago and they were all fine, we just need to find out what is going on now.

    I am a bit distressed they didn't feel anything - is that because it isn't there or because they just can't feel it? I am really worried about a misdiagnosis because it seems so common to so many women.

    Well, at least I will have an ultrasound soon, hopefully that will tell me what's wrong.I know something is wrong, and I want to know what it is, even if it is the worst case scenario, at least then I know what I am dealing with.

    Thank you again for all your support.

    xx

    PS I forgot to mention in my first post that I have terrible pain under my left rib, I have had it for some time but it is getting worse. I do know that is where the spleen is located. DId anyone have this at all?

  • Dear Teabiscuit,

    What a totally insensitive GP you have, I am getting madder by the minute, he should send you for a CA125 test even though it can give a false result it would give an indication whether something is wrong or not and if so they could then investigate further to find out what is wrong....I take it that when you did get a blood test it wasn't a CA125 ....I hope you get answers soon...

    My thoughts are with you x G x

  • Hi Gwyn

    The last lot of blood tests I had were for thyroid, diabetes, anaemia..I think just all the standard ones, but no CA125. Oh there was a CRP one which was high apparently, but not worryingly high. He said at the time that it showed inflammation 'somewhere' in the body.

    I'm not too worried about not having the blood test though, because I am having the scan. In a way, it might be better just to go right to the scan? I don't know...

    Thank you for your kind words.

  • Dear Teabiscuit

    I am baffled as to why your doctor is like this. It is completely shocking that he tries to fob you off.

    He is right that the CA125 can give a false result but this is usually a false negative and not a false positive. However, it is a lame answer to a perfectly reasonable request.

    Anyway, despite his dilatory attiude, he is ordering a scan. I only hope that he has asked for this to be fast tracked and that you are not kept waiting. Perhaps you can check that this request is in the pipe-line by telephoning the surgery. I would not like to see this referral just lie on his desk and left non-actioned until after the Jubilee Bank Holiday.

    The only other suggestion I have is to request a second opinion with another doctor in the practice. As another option, could you consider pursuing a private opinion?

    The nurse is wrong in her answers to you. Blood tests carried out 6 months ago may not be relevant to what you are experiencing now. Again, this is fobbing you off.

    I am very sorry that you are in this situation.

    Best wishes

    Isabelle

  • Hello Isabelle

    I'm sorry, but I don't know what you mean by false positive and false negative, could you explain?

    I will follow it up with the surgery, I forgot about the bank holiday...

    I suppose I could see another doctor in the practice, but since I have been referred for the ultrasound, I think I will wait until the results of that come in. I don't want to be known as a nuisance at the surgery. I know, I am a bloody wimp!

    I can't afford to go private, unfortunately, otherwise I would. But if the ultrasound shows anything, I am sure I will see a decent specialist?

    Thanks for your concern.

    xx

  • Dear Teabiscuit

    I shall try to explain how the CA125 test works. If there is an ovarian tumour in the abdomen, the tumour secretes a specific protein. This protein is picked up by a CA125 blood test and the levels are elevated out of the normal range, sometimes quite dramatically. A result like this would be a strong indication of what is wrong but to be certain, an ultrasound scan is also necessary. This positive response to the CA125 test gives important diagnostic information.

    Sometimes a positive CA125 test can be a red herring as any "mass" in the abdomen can cause it to rise. For instance, the CA125 test is raised when there are fibroids or even in a normal pregnancy when there is no disease or any cause for concern. This would be called a false positive CA125 test in the search to diagnose ovarian cancer.

    Certain types of ovarian tumours do not secrete the protein and often very early Stage 1 Ovarian tumours have not yet reached the point of secreting the protein that can be picked up on a CA125 test. Thus the CA125 test may come back within the normal range even though there is an ovarian cancer and so it is misleading. This result is called a false negative.

    Having said this, most women with an ovarian tumour will have a raised CA125 level which is why we were all concerned that this test should be carried out for you.

    If your scan shows an ovarian tumour, and I hope that it does not, you must ask to be referred to your regional Gynae-oncologist for further assessment and surgery. This is the correct referral route as these consultants specialise in gynaecological cancers. You should not be referred to an ordinary gynaecologist as you want the best possible chance of successful treatment.

    In asking for this, you are not being a nuisance but you must be a BIG BRAVE girl and stand your ground with your doctor.

    Best wishes

    Isabelle

  • Hmmmmmmm depression certainly makes you feel tired and if you are having heavy periods the blood loss will also make you feel fatigued but I'm a bit angry that they aren't taking you more seriously than this. You could ring the ovacome helpline for some advice

  • Thanks Isabelle for the explanation. I understand what you mean now and can see the importance of having the test.

    ScardyCat, I was going to ring the helpline, but chickened out. I felt I would be wasting their time considering I don't have a diagnosis yet. Yes, the depression does cause fatigue and that long, heavy period i had would do the same, my problem is that when I went to see him six months ago complaining of fatigue, that's when (after some blood tests) he diagnosed depression.

    I didn't argue with him as life has been difficult the past few years and I have found things tough going...so I just accepted it and took the pills. But the fatigue is still there, worse if I am honest.

    I am beginning to think I am a total wimp when it comes to my health, I don't understand myself. I'd fight the corner for my son or friends if it came to their health. Isabelle, you are so right I need to be a brave girl and stand my ground with the doc.

  • Hi tea biscuit,

    I really do understand how you feel.....I too was fobbed off...had normal range of blood tests a few times....heavy periods, very tired, knew something wasn't quite right..but all blood tests came back as normal. Had a scan, then re-scan....then referred to Hosp...ca125 done ..the ovarian cancer diagnosis a week later....but this was over the course of at least a year....so act quick...if all is fine yeh hey....but if not best to get it sorted earlier rather than laterxxxxx

    I hope things are fine of course...but do stand your ground at the surgery!!!

  • Hi tea biscuit,

    the doctor I first saw ordered a full set of blood tests and a CEA test (not ca 125) as I mentioned that my maternal aunt had died of OC. All the blood tests came back normal apart from the CEA that was elevated. My Gp said it was a fluke that the CEA had been done as the labs usually refuse to do this unless you are being treated for cancer (to see how chemo/surgery is working). On the basis of my swollen abdomen and this blood result I was referred to the surgical team at the local hospital. I have just had debulking surgery (one of my ovaries had a tumour over a foot across) and my ca 125 level is still normal. I am glad you are getting the scan done and hopefully they can give you the information you need. My Gp erred on the side of caution rather than wait and see but if he hadnt I would have took myself for a second opinion. This is YOUR life and you have a right to have your concerns taken seriously. I hope everything works out well for you.

    Jane X

  • did you find anything about about the pain under your left rib? I have it also and am always worrying about it :(

  • Hello

    Well, I have heard nothing about the scan yet. I did call the surgery on Thursday and all they told me was that it had been referred. So, I suppose due to the bank holiday, I am unlikely to have it next week, so hopefully the week after.

    Anniebear, no, I haven't found out anything about it yet, was hoping the scan would show something. What kind of pain does yours give? mine is an ache and there is a swelling there. If I find out what is causing it, I will definitely let you know.

    Jane and Florence, thank you both for your advice and support.

    xx

  • I meant to say that I called the helpline and the lady was ever so helpful. And she did give me good advice on making sure the doc listens to my concerns and not to be fobbed off! She was wonderful.

  • Dear Teabiscuit

    How is everything going? Have you heard from the hospital yet with a date for your scan. What a dreadful time you've had in all this. I went to my GP with nothing more than complaining that I felt ill and asked if he could arrange some tests as a health-check. We decided I was suffering from work-related stress as that was the only thing I could think to make me feel less than well.

    Nonetheless my lovely GP put me through all manner of tests and appointments and within a month I was diagnosed with Ovarian Cancer. The CA125 test is only £20. It's worth having the test even though it's not an accurate indicator in its own right.

    I think if I were you I'd be writing a letter of complaint to the local NHS Trust and seeking out another GP.

    You mention having had a tough few years. If you have a decent GP they would ask if you would like to be referred to the practice counsellor not just dispensing a whole load of tablets which paper over the cracks and don't resolve whatever is going on that's been upsetting you for a while. I think you might well see if you can find some sort of listening service to help you with that.

    Meanwhile have confidence in yourself. Don't be fobbed off any more!

    xx Annie

  • Dear Annie

    Thank you for your message.

    I haven't heard anything yet, I think the extra long bank holiday has messed things up a bit. I hope to hear within the next couple of days - I hope I do, anyway.

    Your GP sounds lovely! I don't know about a complaint as yet as he has referred me for an ultrasound - I don't think there is much more he can do at this stage. However, I suppose the blood test would be good, but as he said to me, he was sending me for the scan anyway. I don't know...is he doing his job or not?

    Actually, they have referred me to a counsellor, someone who does CBT.I saw him last week, he seems to understand the anxiety I am going through re my health at the moment, which is good, and doesn't want to push me into doing anything too stressful regarding my mental health just yet.

    I have been feeling poorly all weekend with cramps (mild though, but I am taking painkillers), heartburn and general malaise and am worried sick. I can't stop looking at my swollen belly and wondering if it is getting bigger or not, feeling it to see what it feels like (a balloon filled with water is my best description) - so I don't know if it is just fat or not. The rest of me is quite slim, skinny arms and legs and my bum isn't big :-) so it feels strange to have this massive belly.

    I am also breathless after the slightest thing, vacuuming or going up the stairs - but I am putting that down to the fact that I am a smoker! But it does seem excessive considering I have not felt this way before, I would get breathless if I ran anywhere (avoided that at all costs :-) ) but not just doing everyday things.

    I'm sorry, I am going on and on about how I am feeling. I feel pathetic!

    Thanks again for your concern. I can't believe the support and encouragement on this site, and am so grateful for it. I live alone and am off work at the moment, so don't have many people to talk to. I don't like to call my friends and moan about how I am feeling poorly, it's all I seem to have to say to them and I feel like an energy vampire!

    xx

  • I have my appointment for my ultrasound tomorrow afternoon - so not long to wait now.

    xx

  • We all understand on this site and no-one minds you having a moan or a query or a "why me?" moment!

    Just wondering how you got on at your scan appontment? Did you have a belly-type ultrasound and a trans-vaginal one? Have they given you a CA125 (they can often show a problem, in spite of recent scepticism among the medics)?

    Do let us know, even if ... as I hope ...it was all a false alarm. You will still need the symptoms investigating, even if they are not OC. By the way, I was a smoker until I was admitted to hospital with OC, nearly 10 years ago now. Haven't touched one since, so something really positive came out of my diagnosis! There was nothing like a cancer scare to make me re-evaluate my attitude to something I could have control over!

    Let us know how things are going with you. I hope you are getting the support we all deserve from your hospital

    Love Wendy xx

  • Hellow teabiscuit, Stick with it girl. Have the blood electrolites been done, as for other tests ask for copies. Then if you wish others can explain results to reassure you, dont you worry. Its important to eat well and varied foods, greens, fruit, protien, fluids. at least that is one way to help the body and mind. Sorry about the tough time you are having. discomfort and worry will get you down eventually, but strive to get the better of it and lets hope an explanation soon. Have you lost weight during this time. Again let others worry you just try and get the right help enough for you to manage for now. Forget about being hypochondriac, you are just seeking answers which is normal.

  • Teabiscuit - I notice you are referring to your doctor as he. Is there a female GP at your practice (all practices should have one). Ask to see a women about your problems, they are much more sympathetic and on the ball about female things.

    I see you are getting a scan. Also insist on thde CA125

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