Looking for advice.

  • 11 replies
  • 23 subscribers

Hi everyone, 

I didn’t really know where else to post this so please bare with! 

6 months ago I had to go for a LEEP procedure due to CIN2 changes. I’ve had the HPV virus for a many years and have a smear every year. I got a letter to say they are confident they got all the cell changes and to attend a smear again in 6 months (in about a months time). 

since my LEEP I followed all after care instructions and I eventually stopped bleeding and was healed. Unfortunately since then I’ve been bleeding in between periods, had periods lasting about a week and a half, bleeding after sex every single time and a majority of the time sex is very uncomfortable. I’ve been getting period type stomach pain and Back ache all Throughout the months and I only realised yesterday I’ve had an extreme loss of appetite. I can go 3/4 days without eating a meal because I’m just not feeling hungry and only realise I need to eat when I start to feel faint! I’ve been ignoring these symptoms for months but last night my partner nagged me to call the GP. 
I called this morning and felt really silly as I thought they just brush me off but she’s actually fitted me in with the out of hours doctor for this evening as she said these symptoms are pretty worrying. 

naturally I’m very scared now and very concerned about what’s going to come from it. I was just wondering if anyone else has experienced this before? Perhaps the results of the LEEP procedure were incorrect? I know it’s rare but I guess it does happen. 

  • Hi  and welcome to the group

    Please don’t feel you are overreacting in making a gp appointment-it’s much better to have these issues investigated rather than worry about them. 

    You have symptoms which are a concern, so it’s good you are being seen today. I haven’t had the same experience myself as I unfortunately went straight to a cancer diagnosis after being referred to a gynaecologist, but I am not for one moment suggesting it would be the same for your situation.

    The gp will want to record all of the symptoms you’ve been having and may refer you to a gynaecologist for any further tests/examination. She may want to do an internal check today. The cells which were removed in the LEEP procedure would have been tested, but it is possible that maybe not all were removed. However, the best thing to do is wait until you have seen the gp, and see what she advises as a next step. 

    I hope you can be reassured by the gp, but I appreciate this will be very worrying for you. Please come back and let us know how you get on.

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

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

  • Hi! Thank you for your reply. 
    sadly the doctor completely brushed me off and told me just to wait for my next smear. 

    He said it sounds like I’ve been super ‘unlucky’ and it taking me 6 months to heal from the procedure. I’m not sure I buy that as I’ve only recently been having regular intercourse with my partner (so I had plenty of time to heal from the procedure). 

    He didn’t even bat an eyelid at the fact I am barely eating to the point I feel like collapsing at least once a day. 

    No test, no follow ups, no advice. Just sent on my way home. 

    what can you do hey! He didn’t take me very seriously at all and it felt like a massive waste of my time. 

    Guess I just have to wait for my next smear and see where it goes from there. 

  • Hi  

    I am really disappointed to read of your poor experience at the gp and I am not surprised you feel brushed off. It may be that you are taking a long time to heal, but 6 weeks is normally enough, not 6 months! And you followed the correct procedures after your LEEP. 

    He didn’t event give you an examination?? That is actually shocking. I don’t want to scare you unnecessarily, but some of the symptoms you have described are cervical cancer symptoms-uncomfortable after sex, bleeding after sex, longer and unusual bleeding, and pelvic and back pain. Those warrant investigation. And the fact that you are not eating should be a real concern.

    I see you have about a month to wait to go back for what is called your “test of cure” so at least your cervix will be examined. However, you need to make sure that you explain about all of your symptoms when you go. I feel that doctors can fob women off and not deal with something, especially if they know you have an upcoming smear. 

    Personally, I would write down what happened at the gp appointment and  make a complaint to the practice manager, asking why none of your symptoms are being investigated. Having a smear soon is no excuse-that’s a test for hpv and potentially any abnormal cells if hpv is still present, but is not a diagnostic test for cervical cancer. 

    I really don’t want you to be scared, but I would hope that you can speak up about this and raise your concerns. If you make a complaint to the practice manager, that will need to be responded to and actioned and will be on file should anything further happen with your symptoms developing. And next time you need to attend a gp I would ask for it not to be this one, and ask for someone else.

    You should not have been fobbed off like this. Please keep in touch and let me know how things go, and if your symptoms continue to get worse before you have your smear, please make a further appointment with another gp in the practice.

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

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

  • Hi Lillyanne

    Please do not wait for the next smear, get a second opinion.  This needs to be checked now.  I am appalled the doctor brushed you off with the symptoms you are describing and after having LETZ.  
    My smear was on time and I am diagnosed at stage 2 with it being advanced but localised.  I have just had my 11th round of radiotherapy and my 3rd chemotherapy today as hysterectomy was not on option.

    I still have another 6 weeks to go and also having internal radiotherapy afterwards.  Also can I say I had NO symptoms whatsoever it was a routine smear that picked all this up so a big shock!!

    Please please don’t wait.

    Let us know as we are all behind you.

    much love, jennefer x

  • Hi  

    How are you getting on with your treatment? Hope things are going smoothly enough for you. 

    Your experience of cancer being picked up with no symptoms makes it even more astonishing that a doctor is not acting on actual symptoms, especially with a history of persistent hpv and symptoms which have lasted a long time. 

    We shouldn’t accept without question what a gp says-they are generalists, not specialists, and women need to advocate for themselves and push for answers.

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

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

  • Hi Sarah,

    My treatment is going well thankfully - I know I have still quite a lot to go but just taking each day as it comes.

    I am so disgusted with the way Lillyanne has been brushed aside.  I had no symptoms whatsoever and even knowing the symptoms now I can still say that I did not have any so cannot even say I mistook any for anything else.  I do hope they do something for her as I found the waiting and not knowing far far worse.

    Hope you are doing well also xxxx

  • Hi Jennefer

    I’m glad you’re doing ok, but it’s a hard slog, isn’t it? It’s just so important to get things checked out if there is even any suspicion of cancer-I have a friend who went from a clear smear to a stage 2b diagnosis in 6 months and was similar to your own situation. Happily she is fine now, several years later after her treatment, but it shows how things can be. 

    Not being listened to, or taken seriously by a gp, just puts some off from speaking up, and I have learnt over the years (with other things apart from my cancer) to speak up (I was misdiagnosed over the phone last year with a life threatening condition and it was an awful time for me, but the gp wouldn’t even see me in person at the time) I learned to speak up the hard way! So I would always encourage everyone to do that when something clearly isn’t right. If a gp fobs you off, ask to get another opinion. I won’t ever see my particular gp again, I know that! 

    I’m doing ok thank you, but following my misdiagnosis last year I have had a difficult year of dealing with other problems, where my surgery probably now sees me as a “difficult” patient. I couldn’t care less-my health is more important than how they see me.

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

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

  • Just a quick update, 

    had my smear this morning and the nurse was very upset the doctor didn’t run any tests or anything like that. 
    she said my cervix looked very healthy, infact she said it looked much healthier than expected as she said usually after a LLETZ you can see some sort of evidence of the procedure whereas I had absolutely none at all. So bleeding from being ‘unhealed’ has now been ruled out (which i knew would be the case). She is baffled as to why the bleeding is happening every single time and recommended a face to face with a female doctor. I have booked this (nearest appointment is 5 weeks away!)

    praying the smear brings up a clear result and I don’t have to go through all of this again. Everyone is baffled and can’t make any sense of it or give me any answers at all so I’m none the wiser and was told that maybe I’ll just bleed every time I have sex from now on. Not ideal at all! Also my periods are super messed up, just had a heavy 4 day period, 2 and half weeks after my last one! Back to the drawing board I guess and just a long waiting game. 

  • Hi  and thanks for the update.

    It’s astonishing really that you are not getting any answers for this, especially since bleeding after sex is a frequently reported symptom of cervical cancer.

    While it’s good news that your cervix looks healthy, there are other things to be considered. It isn’t normal to bleed every time after sex for example.

    A “clear” smear doesn’t mean someone can’t have cervical cancer. If the test doesn’t indicate the presence of hpv, the cells aren’t tested further, but hpv can come and go-be dormant and not causing issues, or active when it can cause cell abnormalities so you can still have cervical cancer though a smear shows no hpv. In addition, not all cervical cancers are caused by hpv, although it is a small number.

    Cervical cancer can “hide” further up the cervix and the brush used during a smear can miss it-I had adenocarcinoma which can start higher up and I’m not the only person I know who had an issue with it being missed. 

    I would not recommend relying on a smear test being confirmation that you definitely don’t have cervical cancer: it isn’t a diagnostic test for cancer-it’s a screening for the hpv virus. 

    You have symptoms which need to be investigated, and I hope if you see a gp you will be referred to a gynaecologist for further in investigations. I am not trying to frighten you or suggest you have cervical cancer, but for your own peace of mind I think you should push for answers. 

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

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

  • Thank you very much for your reply and advice. Your message is extremely informative (probably the most I’ve ever been informed about this kind of thing) so I really appreciate it. 
    we often put our trust and faith into the GPs but things can so easily be missed I’m learning. 
    i will continue to push for some answers. I’m so frightened I’m going to be one those woman who go to the doctors for months just to find out something is wrong and it’s too late!