Confused by doctors

FormerMember
FormerMember
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Hi i'm new and confused. 

Been having lots of problems with periods to the point where I needed an ambulance as I couldnt stop bleeding. A&E sent me to gynecology where they said oh yes your here for a biopsy as they have suspicions! First I knew about anything, but went with the flow.

They took biopsy and history, told me they were checking for endometrial cancer,  and I was sent home and told to wait for results. Two days later I got call asking me to come in for scans the next day, external and internal, the lady looked slightly concerned and took lots of measurements, said I would most likely need an MRI but my consultant would tell me more.  

Already booked an appointment with a gp for something else so went along and asked what was going on, she knew very little other than my biopsy wasn't good enough and I would need another. She said not to worry they will sort it at the hospital.

Next appointment a week later with consultant who asked who had rereferred me and why?????  I told him all of the above and he said the others have worried you, you are too young, you will be fine! I asked about MRI he said not necessary as you are young, you will be fine!! (Im 47).

He said I had a lining of 20mm and so he would have a look and he could tell me I would be fine! He has booked me in for a hysteroscopy and further biopsy.

The fact he kept saying you are young you will be fine on repeat really stuck in my head. I could clearly see on my scan notes that the lady had put malignancy of endometrial hyperplasia and she looked genuinely concerned.

He talked about further treatment options should we need to go further, but you will not need them you will be fine!!!!!!! Arrrgghhhh

Now I feel like I don't trust him or anything he does.....am left waiting for hysteroscopy appointment with no idea of when this will be.... am I over reacting here......time is ticking past and I feel he has put the brakes on a process I felt was moving swiftly without even examining me.

Sorry if I've waffled.

  • Hi. Will it be the first time you have had a hysteroscopy? Some women find it ok but also some find it painful. If you find it hard to tolerate the hysteroscopy, you can ask for it to be done under general anaesthetic. So, if it turns out to be difficult experience for you, don't suffer in silence, ask for anaesthetic. Good luck.

  • Hi Mindmuddle

    Although my experience has been different to yours snd yes that seems to be due to my age, I can understand your worries-waffle all you like! The staff were really lovely when I had my hyteroscopy and a nurse held my hand snd chatted to me all the time.  It wasn’t pleasant and I had some strong period type pain for a few minutes during the procedure.  You will be advised to take pain relief before and afterwards.  I had some mild pain which went off after a few hours and some bloating for a day or two.  My consultant did show me the photos of the lining of my womb and said she couldn’t rule out cancer but the biopsies would confirm either way.  I don’t think your consultant was helpful by saying you will be fine as you just want the tests done and your results as soon as possible.  I hope you get your appointment date through soon.  Hugs to you xx

  • Hi  and welcome to our spot in the Online Community. Here you'll find a lovely group of supportive ladies who have all been exactly where you are now. A possibility of cancer diagnosis brings all sorts of stress and fears and if anyone can hold your hand and reassure you we will. We're all at the start, in the middle or the end of what can only be described as a roller-coaster ride. The ride no-one wants to get on.

    I get so angry when professionals make stupid comments like you're too young. Endometrial cancer isn't reserved for post menopausal women. This is the time to get pushy, you need reassurance, not being fobbed off, demand a second opinion, I certainly would - you must have trust in your healthcare team.

    It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. If you’re not sure what to write, just click on my username.

    If you want to ask any of us any questions please come back and do so. There's always someone around and we can offer a shoulder to cry on, a hand to hold or listen to a rant, we’re here for you.

    It might also be a good idea to download this booklet Understanding Womb (Endometrial) Cancer. I found it invaluable on my journey. 

    Click on the link I’ve created to find out more information covering diagnosis and treatments for Womb cancer.

    You might also find this link to what to take in my overnight bag useful for if you have surgery.

    It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00  8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .

    There is also an Ask an Expert section, but you should allow two working days for replies from our expert team.

    Sending you welcoming hugs, and don't worry you haven't waffled!

    Barb xx 


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  • Hi ,  I don’t  think your Consultant is necessarily  being dismissive of you - he could well be wanting to offer you some reassurance at this difficult time  before he can give you more information.   The hysteroscopy is the key to that knowledge and I would hope you hear soon about a date. I would agree with Barb that if you don’t hear soon you should chase it up.   If when you do get a date and it seems to be too far ahead, you could always say you would take a cancellation at short notice.  However even in the pre-Covid time 5 years ago I waited nearly a month for mine so I know how tough the waiting is.

    XXXX

    Anne

    (Class of 2015!)

  • FormerMember
    FormerMember in reply to LittleRunner

    Hi Little Runner, thank you for your reply. Yes it will be my first, the biopsy was crampy so I hope its not too bad, but yes I will ask and GA if I feel I need it. I am never quite sure what is going to happen next.

  • FormerMember
    FormerMember in reply to Walkinglady

    Hello Walkinglady, Thank you for your reply. Yes all I want is biopsy done so I know what I'm dealing with. I feel I am being impatient.

  • FormerMember
    FormerMember in reply to MrsBJH

     Hello MrsBJH, Thank you for your reply. I was annoyed by his attitude, he even said if I was post menopausal then he would be worried!

    How/who would I ask for a second opinion? I'd rather not even be at the hospital I have been given but I'm not sure how to change it or even if I can.

    I will download the booklets and look into the further information, I like to know whats what and feel like im completely out of control and the last to know anything. 

  • Hi Sorry for late reply, had a couple of bad days.

    I'd have a chat with your GP. They refer you to the hospital who in effect take over your care. If they're not reassuring you enough the GP should be able to make some calls on your behalf and sort something out. I was so grateful the surgeon who did my hysteroscopy and failed to spot my 4 cm tumour wasn't going to do my laparoscopic hysterectomy.

    I have read of people changing hospitals, especially those in London. I'm in rural Lincolnshire so don't have a lot of choice!

    Form some questions from the literature you've got and be well prepared, then they'll sit up and take notice.

    Sending, hugs, Barb xx


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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    "Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett

  • FormerMember
    FormerMember in reply to oldady

    Hi, oldady .Maybe he was trying to reassure me but as I am still waiting I didnt feel reassured. I rang the hospital , only to hear that there is a 4 month wait!!!! I should contact my GP and get her to ring them... filled in one of the e-consult forms to contact dr, she will ring me in two weeks!! thanks for nothing, i'm really getting worried.

  • Hi Mindmuddle

    In my opinion I am surprised the GP has not referred on the 2 week pathway initially.

    Please get back to the consultant and see if he will  to take your concerns seriously and refer you for gynaecological assessments under 2 week pathway. Your womb lining of 20mm should surely be a concern? Ask him '

    '"what if its cancer and I've been denied the healthcare I need, will you take responsibility for this?'"

    If you cannot speak to consultant  then send email to his or her secretary .

    Be assertive and make sure you get the healthcare you deserve. 

    Good luck x

    Madesp