Some advice please not sure if im putting two and two together

Hi Every1, I have been under my doctor for 4yrs now, I have had every blood test under the sun including a hormone blood test these have all come back normal, my original symptoms were pains through my pelvis area which i still have today, back and top of legs to my knee caps its a very strong period pain, I had my first ultra sound and trans virginal scan 3 and half yrs ago nothing found just had an up to date one and everything looks normal again. My other symptoms which have followed from this are feeling bloated and full my body says im full and my mind says i haven't eaten so I do have small meals, my bowel movements have changed, hard border line constipated then just like water, I don't get stomach ache or wind pains but my doctor says it is IBS, I am constantly on a period they never seem to stop and when i think i have finished I start a whole new one I have my normal one then the rest of the time it is black gunk like tar, My hips hurt then feel like they are constantly bruised and sore to touch even have my underwear on hurts and on some occasions my whole body feels the same sore to the touch. Now my newest thing is leakage from my breast milk from one and clear from the other. I asked my doctor if he could send me for a CA 125 blood test he basically refused me because nothing has shown up in any scan or blood test. On my mums side of the family every 1 of the girls has had there womb out due to problems with ovaries or tumors or general problems. My Nan has just be diagnosed with Neuro-endocrine tumor they said it has been there for several yrs and he didn't understand how it has gone unnoticed because she has had every blood test and scans over the yrs and it has never come up. closer to home i have had cells burnt away but i could'nt tell if they were pre cancer or not. Would i be silly to pay for the CA 125 privately which I am considering some advice would be good thank you to all that answer me xx

18 Replies

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  • Hi Gemma,

    I can't understand why your doctor is refusing to get a ca125 taken, it isn't an expensive test, I don't think you are being silly getting done privately, you could give Ovacome helpline a ring they might advice you what to do, speak to Ruth Payne tel 0845 371 0554 best wishes love x G x

  • Thank u so much there is overian cancer on my mums side and breast cancer and also lung cancer on my dads side, my dad has had skin cancer and they removed it all, my mum has always had problems with womb. I will give ovacome a call thanks u very much. Gemmaxxx

  • All the more reason to get a ca125 done, the Ovacome helpline is only open office hours, but you could give Ruth a ring tomorrow,befor the weekend is on you and you might feel worse if you don't, if nothing else she will put your mind at rest.. love x G x

  • Sorry about typos xx

  • just wondering.....have you had a cervical smear test recently? more testing i know, but may be another route to getting some answers? it also may be worth getting a second opinion from another doctor....?

  • I have been having smear test every year for the past 4 yrs due to one of them being abnormal and then the following two after that being the same then they leveled out, then they sent me to have cells removed i wasn't there for long. I have had bowel screening bloods done they were fine, diabetes tests fine, perpetuity hormone glad fine, thyroid gland fine I have collapsed twice I have had three children all without pain relief and this pain was worse than this but is did feel like I was in labor, the second time it happened i went to hospital they x rayed me couldn't find anything but my white cells were up but no enough to worry them but i wasn't sick didn't feel sick they said it was IBS but my doctor has done everything apart from sending me for the CA 125 test because everything is normal and there are no changes on my scans. I just don't want to ignore wot is going on but then again i don't want to be paranoid about this as well but i feel like there is defo something not right with my body even tho everything is telling me that it fine i just don't know

  • Give the doctor a written letter stating the date that you have asked for a CA125 test and that if you are subsequently diagnosed with OV you will both report him to the BMA and sue him for medical negligence. Doctors, especially GP's, are like naughty school children and need to be told what to do in most instances. Don't worry about whether they like you or not, just whether they are doing their job properly, which given the family history I'd say they are not. - Paul (Bunty's widow)

  • Thanks so much I really feel like I will go and do the blood test and even if that comes back normal then at least i can say i have tried everything before i decide to get my womb out because of my bleeding that i am having thank u too every one who has helped me and I think i will ask to see another doctor and ask if they will do the test again and inform then if they refuse to test me then i will go private and if anything comes of it then i will be contacting them thank you Gemmaxxxx

  • Hi Gemma

    It looks as if you definitely need this investigating thoroughly. I went through 3 years of being fobbed off with lots of reasons, with some similarities to your symptoms. Look on the Ovacome website ovacome.org.uk and click on the BEAT ovarian cancer with Ovacome option on the left, scroll down and fill in the symptom tracker, and print it out to take to your doctor. It may be something quite different, but you need to investigate, given your history and family links. Even if you do nothing else, give Ruth a ring on 0845 371 0554 tomorrow. The helpline isn't staffed at weekends, so get some help as soon as you can. It will stop all the worrying you must be doing if you can see a clear way forward.

    All the best

    Love Wendy xx

  • I promise I will give her a call and I have been on the ovacome site it was earlier on this evening and I did the beat test and it does say to get in touch with doctor but i feel because ive done everything that im looking for something to be wrong just so that i can get it sorted and everything that we have tried upto now has been a positive and he just keeps saying that its a good thing but to me its not coz something is not right/normal lol oh well thank u so much i will keep u informed if i get this sorted thank u all Gemmaxxx good nite to all speak soon

  • Your doctor is completely in the wrong to refuse to do this test. I do hope that the test will come back as normal but don't allow them to fob you off with suggestions like IBS. Do speak to Ruth to get advice.

    Wishing you all the best

    Mary xx

  • Hi Gemma

    Please get back to your doctor- you know your own body and I'm sure it is telling you that something is wrong. You have been put in an awful situation with no one really listening to you.

    Love and prayers

    Anne xx

  • The only thing I would say is that the ca125 test is not accurate ... It's used to follow a condition not particularly as a diagnostic tool .Other benign conditions are flagged up by this test and I have late stage with a normal CA125 reading. You sound upset and understandably so. You have such pain that I think a gynae may agree to a have a look via a camera. Just a thought . X

  • Oh dear Gemma,

    I have only just read your ple for help and I am appaulled with your GP for not doing enough for you. I bet it`s a man? Change your GP to a female if needs must sweetheart. Tests may be telling you everything is normal but your symptoms tell me quite the opposite. Ask for a laporoscopy - you should not be refussed this test. its under a general anythestic in order for them to carry out the full tests. Its keyhole surgaery through the belly button and you have it done as a day patient. The camera will give them a much clearer picture than any vaginal scan. or maybe you should have a CT scan as well if they haven`t already done that for you. A Ct scan gives a more detailed picture than an ultrasound scan which is usually the first point of call.

    As for the CA 125 test, I wouldn`t worry too much about having that at this stage because it may not give you a clear enough reading and it isn`t usaully used as a dignostic measure. Of course onece cancer is suspected they should offer you the CA 125 test. This measured the protein levels in your blood, not the cancer if you have a cancer there. Some ladies with OV cancer produce high levels of protein but also a common cold or virus can increase the levels in the blood too. Some ladies potein levels with an OV cancer will remain within the normal range, we are all so different so therefore it won`t be used as a diagnostic test.

    A laporoscopy is your next step in my opinion but then again I am not a doctor.

    I know this because my daughter had problems with her periods as a teenager , she also has IBS with similar symptoms as you have described. She was offered an ultrasound scan, jelly on the tummy and a vaginal one before being offered the key hole camera. The scans showed nothing up, all was normal, but the laporoscopy showed that she has polisystic ovary syndrome. I don`t think you have that because usually periods cease for months at a time with that but it could be indemetriosis (sorry, I`m not sure how to spell that).

    Trying to put your mind at rest here hun, but 4 years is a long time to be suffering as you are and because of that reason I doubt that it would be a cancer. Most OV C`s are growing for a long time before we even have symptoms and then often by the time that we do, catching it early is often too late. I`d imagine though that your problem could be an hereditary one and who can say that your problems can`t or won`t lead to cancer.

    Please, please, please persue this further sweetheart, promise us you`ll take immediate action.

    I would also insist on genetical testing for the faulty brca gene mutation.

    Don`t be fobbed off with this because I was, and I was told that no one in this country would offer me a prevention hysterectomy with removal of the ovaries just because I only had one member of my family die from ovarian cancer at a young age (this was my mother on her 47th birthday). THEN the results from my own scan was cancer and immediatelly they reffered me to genetics. Sure enough I carry the faulty brca one gene mutation. Both of my daughters were then offered the test and they are positive too. If only someone had listened to me.

    So, follow your gut insticnts and use my story as an example if you so wish too.

    Get tested NOW luvie!!!!!!!!

    All the very best of luck, let us know how you get on, Gentle hugs from Tina x

  • Your doctor is wrong, period. It is your life not his. Listen the advice posted above. It is spot on.

    jackie x

  • I am I have had letter and he has put me to go and see a gynacologist i go on the 1st week in march so i am going to have a good chat and see what they will do and thank you all so much for the advice and I will keep all up to date. I will tell u now that I am very forgetful but we shall speak soon my love to you all

  • Xxxxxxxxxxxx

  • Hi everyone its been a while, just an update really to let you no whats been going on. I have been looking after my Nan who sadly has now passed, so that is why I haven't been on here, but I have just been having a look at some of the posts on here catching up. I have an appointment tomorrow for a hysteroscopy they want to check that there is nothing inside my womb before they do a laparoscopy to put my mind at rest. The gynecologist lady that i see is saying that there is not point in a ca125 because all scans and all bloods are normal there is nothing to suggest that I would OC. So my plan is go for the camera tomorrow hope all is fine the go private and get blood test my self and fingers crossed it comes back fine.

    Thanks Gemma xxx

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