3 year follow up after HPV positive, now have symptoms :(

Hi all, I posted on the colposcopy forum last night but ive got a question that's still aying on my mind.. Back in 2013 I had an abnormal smear (borderline changes and HPV positive) The colposcopy nurse said ny cells looked fine so no treatment was needed but she noticed a blood blister on my cervix but she didn't seem concerned. I couldn't wait to get out of the room so didn't ask any questions. The following year I asked tbe gynae clinic if I should be having a follow up smear but was told that I had been discharged back to gp care. I asked my gp who checked on the letter from gynae but said the same thing, I had been discharged which meant I don't need a follow up smear. I took her word for it but felt uneasy about it. Fast forward to this week and I've had bleeding after sex, bright red blood and quite a lot of it. I have also been having mild period like cramps but because they're so mild I haven't thought much of it, until now! Went to the gp yesterday who examined me and said that my cervix looked red and inflamed and could also see the blood blister. She's referred me for another colposcopy. im now thinking the worst and that this thing had been developing for over 2 years :-( Has anyone else not been followed up after an abnormal smear or have I been lost in the system? :-/ Feeling terrified at the moment... So if anyone else has tested positive for HPV and been put back on 3 year re calls, kick up a fuss and demand a smear sooner, I wish I had :(

Hi Looby

i was in the same position sort of, abnormal smear (mild) plus HPV. Clear colposcopy though so told to have a smear in 3 years which would be next year ! I asked my practice nurse if I could have a smear in a year's time and she said no I didn't fit the criteria and if she had done one without me having an official recall it would have been put in the bin. Google the NHS smear test protocol flow chart it tells you what you are entitled to. A 3year recall after a clear colposcopy and no treatment seems to be standard .At least you are now back in the system. I had to pay for a private smear a year later and have had a private colposcopy this summer. Now back in the NHS system as I have severe abnormalities but no visible lesions. Waiting for another colposcopy in Dec as cervix not visible on the last one and MRI before that.  I'm not very good at taking my own advice but try to not worry. Lots of positive advice and support on here. keep in touch x

 

Hi Noni, thanks so much for your reply. Sorry to hear your still having problems, hope the next colposcopy goes well! I really wish id had the hind sight to pay for a smear privately, it's the last time I ignore my instincts! I think it's so wrong to not check women sooner when they know they have HPV! I've rung my drs today to ask if my teferral had been sent as an urgent 2 week wait and they confirmed it has, and the fact the dr has done this without even referring me for a smear first tells me she saw something bad :-( On the upside I've lost 4.5 llbs since Monday! Thanks again and yes I've found this site really helpful since I found it a few days ago, im sure I'll be sticking around lol x

At least you're in the system now. and haven't had to wait for the smear and then results first. You could take a friend with you, I did on my first one just to make sure I asked the right questions and didn't miss the answers ! She was able to come in while I had it done too lol....so she saw everything on the screen ! I've changed hospitals and consultant now though and feel better for it.  I got fast tracked after originally being in the 4 week waiting list after someone read my notes . The thing with HPV is that it can in cases of mild dyskaryosis revert back to normal which is why they leave you to see if it does and not give you unnecessary treatment  but I totally agree with you that we should get more frequent tests if we have HPV .Mine have always been mild except for the last one . Being older too which I am apparently means it can be more difficult to shift the virus. Just try to keep your diet healthy and yourself fit, plenty of sleep etc and don't spend all day reading horror stories on the Internet, just stick to this site. But there is a good Facebook site too called Abnormal Smear results, lots of lovely girls supporting each other. Keep in touch xx

 

 

Thanks so much for the advice Noni and I will definitely look up the facebook site. Not sure how old you are but Im 40 so not exactly a spring chicken anymore lol... The thing that troubled me about the HPV business is that Ive been happily married for almost 19 years (was 17years when I initially tested positive) but I know me and my husband are 100% faithfull to each other. The Dr told me that it can lay dormant in people for a very long time and that its possible on of us had it before we met (not that either of us have had many other partners but just my luck I guess) A few months before the last smear I was diagnosed with an auto immune disease (where the immune systmen attacks itself) so she said that it could have been triggered by that. Im sure people assume one of us has been unfaithfull though which is annoying but hey ho. I rang the clinic this morning and Ive got an appointment for next Thursday (5th) so not too long to wait :eek!:  Glad you're feeling better with changing hospitals. Good luck and keep in touch xx

Hi, I have had the same problem....

i had a boarder line smear result a year and a half ago but no hpv so I was to carry on 3yr smears.

after going to the docs for slight bleeding they did a smear but it was refused! So I went private last week. I have got myself into such a state that I went back to the docs crying telling them I can't cope with all the stress, that was last Thursday, she referred my for a colposcopy that day and they have got me in for tomorrow. I am hoping with all my mite that I am ok and my cervix bleed is down to treatable cells but it is mo worrying knowing they were happy to let me go another yr and a half! 

I hope you ladies had good news xxxx