Scared and need advice please!

Hi, I am very scared and worried and don't know where to turn.  Apologies in advance for the long post.

In July I started with bloating and upper abdominal discomfort.  My GP did the CA125 test and cane back at 77 so referred me on the 2ww for an Ultrasound for the abdomen/pelvis.  The woman doing the scan said there was nothing to be worried about.  At my follow up appointment the consultant said my CA125 had gone down to 50 and that the scan showed Adenomyosis which he said could be treated with a hystorectomy or with an injection of Zoladax that will send me to menopause, neither of these options I took as it doesn't cause me any discomfort other than heavy periods.  I'm 48 so will wait for the natural menopause.  Anyway end of August upper abdominal discomfort getting worse so my Gastro consultant prescribed me some antacids which I told him I wouldn't need as I don't have indigestion, I took them for 2 weeks and no change.  Endoscopy at the end of September all ok.  H Pylori stool test negative aswell.

I am getting really worried and very scared as I have awful abdominal discomfort every day, all day.  My insides feel sore and by the end of the day it has radiated down to my pelvic area.  It is getting to the stage now where every day tasks are getting difficult.  I am exhausted.

If anyone out there has anything similar I would love to hear from you as I am getting very anxious it could be cancer.

Thanks for reading x 

  • I had a similar story in terms of going to the gp with symptoms. Mine were slightly different main one diahorria then the discomfort feeling full and bloating has started. They didn't suspect as I'm in 30s and to be fair main symptoms were gastro. I think I had them before just more noticeable now I know somethings up. It now does impact things like when the kids sit on me, bending down housework and gardening as I can feel it it's like when your heavily pregnant.

    I was further along than you as they found a hard mass so sent for ct and awaiting blood results.

    I would go back and ask for further investigation. Are u still under gynae? they will hopefully explore everything.

    im sure if you already have diagnosis it's nothing sinister and ultrasound a are accurate but you are further on now so would be good for them to do further tests.

    like me your still in younger category so risks are less likely.

  • Hi, thanks for telling your story.

    Yes I am still under gynae and have an appointment in 2 weeks.  I also have a CT scan at the beginning of December but I don't know how my state of mind is going to be by then. 

    I just feel at a loss as I have been to a&e twice when my gp hs fobbed me off and they can't do much for me unless I go in in severe pain and vomitting.  

    Apparently my CEA tumour marker levels are low and I don't appear to have any inflammation.

    With my ultrasound being clear I am really not sure what can be causing the discomfort.

     

    Does yours get worse when you walk?

  • I feel drained when walking the actual pain and discomfort is mostly associated with bending over however I know I have a mass which is what is clearly causing it.

     

    you could ask for quicker ct if your worried due to how your feeling or ask your gp or gynae to explain their concerns if they will further? I personally think the fact your ultrasound was clear and your tumour markers are t raised that's a good sign. Also fact they said there's nothing to worry about. Typically tumours are found on ultrasound. I would have also thought they would get u in for ct quicker if they were worried eg evidence of suspected cancer. Suspected cancer should do referral to diagnosis in 2 weeks and mine they were honest they were concerned so did ct within one day.

    a ct should offer more of the whole picture

    they might just be ruling out different things and that's the natural next step as imaging is better to aid a diagnosis. There could be so many reasons for pain but I totally recognise how u feel with the anxiety it's such a horrid situation to be in. 

  • Thank you for your positive comments, they have made me feel a bit better.

    My gastro consultant is the one who arranged the ct because of the discomfort to try and find out the cause.  I'm at the stage now where enough is enough and I want to find out why my body is behaving this way.  I want to feel healthy and have energy to enjoy time with my kids.  It's all very frustrating.

     

    How long have you had your symptoms? Do you know when you will be getting your results from the ct scan?

  • Had upset stomach 6 months the other symptoms on and off since. 
    I get my results Friday I'm really hoping just tumour but not cancerous and like you they can just get it ou. Best wishes for you. 

  • Thank you.

    Sending posotive thoughts your way for friday