How to cope with the unknown

Hi all, 

 

[TLDR] Post coital bleeding, bleeding between periods, missed periods. Negative STD tests, abnormal cells on pap smear. Should I be expecting them to look into it more? And how do I stay calm during the wait?

 

I'm new here and until three weeks ago I never thought I would be posting on a cancer forum, but I guess here we are...

For the past three months I had a lot of bleeding after sex, as well as random bleeding between periods, and have actually missed at least my last three periods. I am on the pill so I didn't overthink it but after one time where I bled a lot after sex my partner expressed concern so I said I would get it checked out. I went into the doctors surgery expecting chlamydia or some other silly STD and a telling off and some disapproval followed by some antibiotics.

I am only 26 and the doctor only initially planned a pelvic exam and an STD check. After having a good look at my down there he started to look concerned and told me he was also going to run a smear test to be safe. He said my cervix looked inflamed and that he couldn't see any sign of infection. I also asked when I would get my results back and he only mentioned the time I would get the smear test back.

The next day he rang me twice, I finally got in touch and he apologised because he mixed up the two tests (STD and smear) so I would have to repeat them. He said I could repeat the STD test at home but that he thought I should go to the hospital gyno for the smear to be repeated. Over the phone I agreed due to my state of relief hearing that it was something as daft as mixing up the swabs (I work in a lab so I know how easily that can happen and I have no ill feelings towards him). 

The same day I repeated the STD test in the doctors loo, a very awkward process. And I got the referral for the hospital gyno, the wait was going to be six weeks. Over the weekend I decided that was a ridiculously long time because it's just a standard smear test and there is no reason to go to hospital for that. I called up and asked if they could repeat it at the GP so that I didn't have to clog up hospital time and so that it could just be over and done with. My last doctor was off sick so I spoke to another doctor. She was very dismissive, sayign I didn't even need a smear test at 26 and suggesting I would have to pay for. Eventually after repeatedly explaining that I wasn't the one asking for a smear test, and that there had been a mix up with the last tests, and asking her why I would need to go to hospital to have it (a question that she couldn't answer), she finally agreed to do it.

When I came into the surgery, she was quite dismissive but as soon as she looked at my cervix she became super nice. She explained to me that she could see an area of unusual cells around my cervix which could maybe be cervical ectropion but that the smear would hopefully confirm that. Her shift in demeanor was very noticeable. She told me I would have the results the following week.
Fast forward a whole week to this monday, an easier wait thanks to her reassurance that it was likely to be ectropion, I called to ask if they had my results. Over the phone the assistant told me my STD tests all came back negative, but that he couldn't tell me the results of the smear because that had to be a doctor. I finally got put through on a phone call with yet another doctor. This doctor unfortunately told me early on in the call that my results had come back showing abnormal cells. This shook me so I didn't explain myself well in the rest of the call. This doctor was clearly under the impression that this was just a standard smear test, and not aware that this was triggered by symptoms and a visual lesion of unusual cells. She told me that she couldn't say anything about what the results mean until she had the HPV virus test results back which would take a further week.

 

The HPV test to me seems a little unnecessary now. I know that most cervical cancers are caused by HPV, but surely I have enough concerning symptoms that they should check it out a bit sooner? Also the gyno appointment that I have is still only for a smear test, when really that probably doesn't need to be repeated. I am wondering about pressing them to change it for a colposcopy but maybe I am overthinking it.

I will find out the HPV test results on monday, but I am starting to worry that the hospital gyno appointment which is still 5 weeks away and made back when no test results had come back should really be brought forward. Does anyone have any experience of cervical cancer diagnosis and how urgently these things should be investigated? And also does anyone know how to keep yourself distracted during the wait? I did very well keeping it out of my mind for the first few waits, but now I am finding it harder and harder not to worry? Am I being a "worry wart" as my nana would say and stressing over nothing?

Thanks for reading this ridiculously long explanation, and have a great evening all :)

  • Hell Savnav71

    I'm sorry to hear about your recent health issues. It's good to hear that you recognised that something wasn't normal for you and that you made an appointment to see your GP. 

    I think from your post that your GP will have all the test results back on this coming Monday. Following those test results you could ask your GP to contact the gyanecology department to update them on theses results and ask for your referral to be triaged again. If the Consultant feels that you need to be seen sooner then hopefully your appointment will be moved forward. 

    I think that most of our members here will understand how difficult this period of waiting for appointments, tests and results can be. I wish that there was a magic wand we could wave to give instant answers but unfortunately it is a case of keeping busy and trying not to think too far ahead as that will cause you to worry more. 

    Jo's Trust have lots of information about cervical changes on their website and they also have a helpfline that you can call if you'd like to speak to someone about your concerns. 

    Hopefully you won't have to wait too much longer for your appointment and the Consultant will be able to give you some reassurance about what is going on for you. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

  • A quick update, the HPV test came back negative which is great news, although the doctor said there were signs in the test that I have some other viral infection but they don't know what. She said I should come back in 6 months for another test and started trying to end the call. So I asked her what I should do about my symptoms?

     

    She said "what symptoms?" sounding surprised, and finally started to read my file and saw the post coital bleeding and evidence of either cervical ectropion or other growth of unusual cells on my cervix. I was then certain that this whole time she was under the impression it was a standard smear test, not one triggered by unusual symptoms. She started to say the virus was probably responsible for my symptoms and should clear itself.

     

    So then I asked if she should cancel the hospital referral I recieved after my first examination, because obviously if I just have a viral infection that will cure itself I needn't worry and the hospital appointment is unnecessary since it was for a pap smear which I have already had and that she had just given me the results of (abnormal cells, HPV negative, evidence of another virus unknown). And then she started to doubt herself so now she said she is going to talk to the gyno at the hospital and see if they think I need a follow up. And again I am left waiting until Friday to hear back!

    I am so frustrated, because I wouldn't mind if they had just said it's all fine, you have a virus and it will go on its own. Or if they said we need to give you further tests to check it. But this middle ground where I have the two first doctors I saw tell me they're a bit concerned and I should get checked up at the hospital gyno, and this third doctor who has never actually examined me but has only ever spoken to me over the phone, and hadn't even read my notes telling me I'm fine and should just come back in 6 months, it's just all very contradictory and I don't know if I should worry or not!

     

    I hope of Friday they will have actually read my symptoms and test results and made a decision so I can just go back to my normal life. Also on a side note, I can't find any information on any other viruses of the cervix except HPV, which I don't have. Has anyone ever heard of anything?