HPV and Low grade Dyskaryosis

Hi Laides,

so I had my second smear test around three weeks ago and this Friday recieved a letter telling me I have HPV and Low grade dyskaryosis. I have an appointment for a colposcopy on the 11th May. I am going out of my mind with worry and just feel absolutely terrified. It's really effecting me eating and sleeping because I cannot help but think the worst. I feel like the 5 week wait is just going to be tortuous. 
I am terrified about the colposcopy as I always feel quite a bit of pain with my smears so just dreading it completely. I've read up about some women needing the LLETZ procedure and I'm petrifying myself and I honestly don't know if I could do it being awake :(

 

so sorry for rambling but I am honestly just terrified 

Amelia x 

  • Hello

    This sort of result is really not uncommon for a smear test. I've had it, my mums had it, my mother in law, my manager at work, a few friends!  It can feel really scary, but the screening is there to help catch this sort of thing before it possibly turns into cancer, and low grade is the best abnormal result you can get. You've done the best you can by going to your smear and it's a good thing you're getting it looked at. 
     

    I had exactly the same result four-five years ago. I've had a lot of colposcopies since. And several biopsies, between two hospitals. The biopsies found it was indeed low grade and I've never needed any treatment, it was just left to see if it went away on its own. Which it is doing, so I'm back to regular smears. They can give you an idea at the colposcopy itself if they think they're looking at anything majorly sinister. They can't tell you 100%, but they can still be very reassuring. They may want to take a biopsy and will only offer the LLETZ if they are sure you need it at the time of the appointment (which they're not usually with low grade) You don't have to say yes and can return another time. 

    If anything it's more comfortable than a smear because they have more equipment to make you comfortable and the modesty sheet is much bigger - plus this is their area of expertise. And they don't have to scrape any cells off, they're just looking and perhaps taking a biopsy. There's always a nurse in with the colposcopist and they are always great. The biopsy (if you need one) is uncomfortable but I wouldn't say painful, though it can be a little sore after. Results can take a while to come back and the wait is hard if you're worrying, but concentrate on any reassurance given at colposcopy and this can help.  
     

    I haven't had a LLETZ because my changes weren't enough to warrant it, but if you do need one they can do it under general anaesthetic if needs be. 
     

    If you're feeling really worried, phone the gynaecology department you'll be going to. They're usually great at reassurance. I also ask to only see females as they're a lot

    less unwieldy with the speculum I don't fear going now at all and prefer it to a smear. 
     

    I hope that helps a bit - I felt exactly like you did first time round until my friends and family shared their experiences and I realised I really wasn't alone. 

    all the best x 

     

     

  • Hi darling,

    First off, feeling nervous is completely normal! I've had HPV for a long while and had a colposcopy last year. I was exactly the same as you, couldnt sleep, googled everything (which made me worry even more) I too find smears awful, they're so painful. The colposcopy, was absolutely fine! I think because I'd worried myself silly, I'd mentally prepared for it to be Awful. I had 3 biopsies taken, which didn't hurt at all. I just coughed as they took them, and I didn't feel a thing. When I went, there was a screen that you can see what they're looking at, but I just looked at the ceiling, and a health care assistant held my hand and chatted to me. 

    I promise you, from one woman to another, you will be fine. But voice your concerns and ask someone to hold your hand, cause that really helped me. 

    Take care,

     

    Kate xx

     

  • Hi, 

    firstly I just want to say thank you so much for responding and your experience and knowledge has already made me feel a whole lot better. I am honestly trying not to worry but it is just so hard. 

    So if I needed the LLETZ would I be able to tell them I would prefer under general?

    again I cannot thank you enough for repsondingvand giving the experience and information you have you really have put me at ease. 

    Amelia x  

     

  • Hi Kate, 

    Firstly I just want to say thank you so much for being so lovely and reassuring, I actually felt a little bit emotional reading your reply. 
     

    I feel ever so silly for being as scared as I am but I just cannot help but think the worst and I am just terrified. As I'm 27 I've only ever had two smears which both really hurt so when I saw the words abnormal cells and colposcopy I burst into tears.

    Do I need to do anything about the HPV or will it go away on its own?

    you really have put my mind at great ease seeing you find them more comfortable then smears and that you too find them painful as I know I can really relate to you now. 
     

    I was thinking about ringing them and asking if I could have a women do the procedure and ask if I can have a healthcare assistant in there to hold my hand but I really don't want them to think I'm being rude or over dramatic I just don't want to cause anyone any hassle. 
     

    Again thank you so much because you really have helped shrink my worries a little knowing it's not going to be as painful and dreadful as I am terrified it will be.

     

    Take care, Amelia xx 

  • Hi Amelia 

    Oh bless you, you're so welcome. I didn't have any friends or family that had been through it so found it extremely hard to relate to anyone. 

    I still to this day have HPV but it's in my mouth as well as my cervix. Today I've got an urgent referral with ENT to have a look, so that should give me some more answers.

    We're very similar in age, I'll be 29 later on this year. 

    Please keep me updated, and if you need Someone to chat to, I'll always reply.

     

    Take care of yourself sweet, 

    Kate xx

     

     

     

     

     

     

    But in terms of hpv, there is no "cure" as such, your immune system should be able to fight it off within 1-2 years. But for some people like me, it lingers around. I've read that keeping healthy, making sure your immune system is as great as possible gives you a better chance of ridding it quicker.

    I absolutely would give them a call, they are lovely and will completely understand. Anxiety plays a big factor in a lot of things, but having someone with you chatting to you will definitely put your mind at ease. 

     

  • Hi lovely sorry it's taken a while! I know it's so hard not to worry and I was really anxious with my last lot because I'd been told the HPV would go away and I was examined two years later  during pregnancy at a new hospital and they kept throwing around the word "lesion" with no further explanations. The wait was honestly the worst bit, the biopsy post baby really wasn't that bad.

     

     I was 27 when they first found mine too, and also pregnant then so I had to wait 12 months to have my biopsy and even leaving it that long it didn't change much. likelihood is if it's low grade you'll be ok, and even if it is something sinister it sounds like you would have caught it very early.  
     

    Yes you can request general for any procedure (even the colposcopy) but it can make the wait a bit longer. Usually with low grade they just leave it and see if it gets any bigger. Just remember most low grade changes are PRE cancerous, not actually cancerous, and it's a positive thing to catch them at this stage :) 

    glad to provide some reassurance! 
     

     

  • Hi Amelia,

    It's absolutely normal to feel sick with worry and terrified after receiving an abnormal smear result. I've been there before myself and I've also worked as a nurse in colposcopy so I understand even more so. I still worry about my smears despite my experience!
     

    Please be reassured this is not uncommon. It is not cancer. In most cases HPV can go away on its own. Low grade dyskaryosis often resolves on its own and treatment usually isn't required. LLTEZ can be done under a general however as someone else has mentioned the wait is much longer. Hopefully you won't have to worry about that though. The staff you see you colposcopy can talk you through your anxieties and provide support. 
     

    I know this will be on your mind constantly however I hope I have eased some worries. Wishing you all the best for your appointment. 

  • Hi Kate , Hi Amelia, 

     

    sorry to jump on your post. 
    kate how did you appointment go at ENT? 

    I'm 29 too, I don't have HPV however I do have mouth cancer, well actually cancer of the salivary glands. 

    Hope your both ok. 
     

    and hope results are nothing to worry about.

     

    take care 

    S x 

  • Hello!

    All went ok, nothing to be immediately concerned by. They want to see me again in 6 months to see if anything has progressed. But unlikely to be cancerous. 

    I'm so sorry to hear of your diagnosis, are you all ok? 

    Take care,

    Kate x

  • Hey,

     

    that's great news!! So relieved to read that.

    I'm actually ok thank you, it was hard to swallow when it was first said because I have a 6 year old at home and I just kept thinking this can't be happening. But I had staging tests and stuff and it came back Stage 1 contained. So Iv had a couple of operations , 1 invasive one last week, that's a bit rough , struggling with speech and stuff like that. But hoping he got all of it. I'll know in a couple of weeks if they plan on extra treatment. Can't complain with the NHS tho within 6 weeks of seeing the GP, I had had 1 op, MRI , X-rays tests, diagnosis. Everything's best to get checked out :) 

     

    thanks and take care 

    S x