Please help, I’m am terrified and don’t know where to turn.
A little background info - I am 32 and stupidly choose not to have smear tests (until now). I started bleeding after sex 4 months ago, at first I thought nothing really of it but after my partner pointed out that I had mentioned this on a few occasions, I contacted my Gp. They rang and said I need to be seen urgently so I went the same day for an examination, smear and sti swabs (April 21). The swabs came back clear.
Yesterday (June) I received my smear result, Hpv positive and servere dyskaryosis and a colposcopy is needed. My heart sank reading the letter and I just cried thinking the worst!
I managed to speak to my Gp after googling for hours for what this meant and I told her I was so worried, anxious and upset because I have been having the bleeding symptoms and lymphoedema (swollen feet and legs) for about 4 months too.
From what I’ve read, both symptoms point to the worst?
All my go said was I know, I know, try not to worry! An appointment has been made for a biopsy?!
Well that hasn’t helped! I am convinced its going to be the c word because of the symptoms and today, I’ve had a letter for the colposcopy appointment in 10 days, stating I will need loop treatment.
I feel like I’ve been handed a death sentence and doctors already know but aren’t telling me?
I’m in bits
Anyway sorry for the long post and thank you if you read this far, I have no idea what I hope to achieve even writing this but I have mental health problems too and the not knowing is unbearable.
Sorry to hear you are so worried but pls try not to think the worst and definitely don’t use google.
I have had exactly the same but I have been going for regular smears and was shocked when it came back this time the same as yours.
I have made myself so ill with worry and feel I have given myself other symptoms with the stress.
I had my biopsy on Wednesday and like you in the letter said about loop treatment but the consultant said she wanted to wait for the results of the biopsy first not sure if that’s a good sign or not.
Stay positive and think it is good they have found the cell changes now and are acting on it.
Hi, thank you for the reply.
I’m really sorry you are going through this too! I’d like to think them wanting to wait for your results first is a good sign. Maybe that will happen with me?
I’m really struggling to be positive tbh and I know this is my own fault for not having any smears previously (please don’t judge me).
I’ve had family members have,cleared then cancer again with a vengeance and they passed away. None was CC but after seeing how poorly they were, I chose not to have smears as I was ill educated and thought these were cancer tests! I decided I’d rather not know if I ever had cancer so didn’t go.
What I never thought about was that actually symptoms would develop and I’d probably find out anyway! I wash someone would have told me smears are to prevent Cc not diagnose! But here I am…
I don’t really know what to expect at the colposcopy? Is it painful?
I’m terrified of needles and so worked up over examinations! I wouldn’t even let a doctor examine me in full labour. Stupid I know x
Hello Sarah0621 . I would recommend you call the Jo’s Trust helpline if you haven’t already. They are amazing and will be able to answer all your questions about your results and what to expect at your appointment. The lady I spoke to really helped me to feel less afraid. Good information and a listening ear really helps. Be kind to yourself. X
The biopsy was fine it hurt a little but was more uncomfortable than anything had some cramping straight after and have bleeding but feeling ok.
They should talk you all through it and really doesn’t take long .
Last week I’ve received the exact same result as you from my smear.
Im booked into have a colposcopy on Wednesday, which if I’ve read right is being done by a nurse, Sure I read somewhere if it’s a severe result it should be done by a doctor ? Do you know if a doctor or nurse is doing yours.
Like you not knowing anything about this scary ‘SEVERE’ diagnosis, I’ve worried myself sick reading mountains of info on google, I know that’s a bad idea but what else can I do to find out more. I too have convinced myself after reading up on it with words of highest grade, severe, cancerous, that this can only be bad news. I suffer with severe anxiety mixed with disassociation as it is, so I really can’t cope with the thought of the waiting for test results. I keep looking at my young girls & bursting into tears.
Hi Laura, thanks for replying. I haven’t called jo’s trust line yet but I think I will tomorrow when I get the house to myself for a while. I hope all is well with you. X
Hi hun, I’m so sorry that you are also going through this and I hope you receive good news on Wednesday.
Yes my letter states a doctor will be doing the loop excision. Like yourself, I have severe anxiety and I’m constantly crying . Everything is going through my mind and google is my worst enemy right now but like you said, what are we supposed to do?! My son is 14 and I’m trying to be “normal” when I’m around him so he doesn’t suspect something is wrong. It’s 5am now and I’ve been awake since 4 crying.
I’m thinking of asking if they can bring my appointment forward so I can get it over with?
Whatever my results, I intend to keep posting on here with the hope all will come back fine and maybe someone will read all this 1 day and see the worry wasn’t necessary just understandable.
Please let me know how you get on on Wednesday.
I wish the doctors would tell me more, they are so vague and it doesn’t help at all. X
Thank you Sarah,
Sorry to hear your so upset, I feel the same when I look at my young girls 8 & 3. Waiting & not knowing is definitely the worst, I’m ringing my doctors tomorrow to find out why a nurse is doing mine.
I had my smear well over a month ago & assumed it was ok as I hadn’t heard back, until I walked through the door to a letter about the colposcopy appointment.
I want to know when I had my last smear (sure it was 3 years ago) & if they picked/tested for HPV then. I’ve just read HPV can be picked up in urine, I’ve had recurrent urine infections over the past year, with numerous samples sent away, surprised it hasn’t been picked up on them.
Yes I’d definitely ring to try & bring forward your appointment, explain how upset & anxious you are, ask to check or be notified for any cancellations.
Oh guys I’m so sorry to see your posts! This was literally me last week, I had my colposcopy a week ago today .
I started having bleeding after sex months ago and finally decided to go to the GP thinking it would put my mind at rest only to be told I had cervical ectropian which, after consulting doctor google, I discovered looks like early CC. I had a 2 week wait to see a gynaecologist then another 2 week wait for the colposcopy itself and I’ve never been so anxious in my life, all I could think of was leaving my 4 year old without a mum, I’ve honestly never felt so awful!
The colposcopy itself was fine, I was taken into a private room with it’s own toilet to get ready and one woman came in to talk through the procedure and sign consent forms. She left me to get ready then took me through and introduced me to the other ladies who would be helping, there were 3 ladies and they were just amazing. They’re used to dealing with women who are absolutely terrified and are very good at helping you maintain your dignity and putting you at ease so don’t worry. I had a biopsy and didn’t find it painful, although it was a weird sensation it was over so fast it didn’t bother me, I’m still waiting on the result but the nurse told me she couldn’t see anything sinister.
If you do need any treatment they’ll use local anaesthetic so you won’t feel anything.
Try not to google, I did and I’ve had symptoms such as bleeding after sex and after bowel movements, vaginal discomfort and urinary pain, pains in my groin, back and legs, mostly symptoms which I’m fairly sure I was either imagining or were caused by stress! All my tests for infections including urinary tract have come back negative so I was really freaking out. The problem is all the google searches always come back with cancer rather than the many other reasons you could be having these symptoms! Only made worse for me by having an urgent referral for suspected gynaecological cancer!
Just remember that the likelihood of any of you having cancer is ridiculously low. CC is very slow to develop often taking 10-20 years. I hope everything goes well for you and please keep us updated. Sending love
Hi Nicnak, I’m sorry you are going through this too! Sorry for the late reply, I have been a little withdrawn the last 2 days. Hopefully time is going by quickly for you and Friday doesn’t feel so long away?! Google is our worst enemy yet we all head straight there don’t we?! I’ll be thinking of you on Friday, please let me know how you get on xx
I’m so sorry to hear what you’re going through. I had an incredibly similar experience 6 months ago.
Bleeding after sex, went for a smear and it came back with severe dyskaryosis and high grade CGIN changes. Hpv positive.
I was invited in for my colposcopy, during which they took a biopsy (wasn’t painful, just uncomfortable) and the nurse who did the colposcopy told me that she would wait for the biopsy results, but from what she could see, it looks like I would need a loop excision to have the abnormal cells removed.
I had to go under general because the location of my cell changes was awkward, but I think most loops are just under a local anaesthetic.
The doctor told me that the procedure went well and that he would contact me in a couple of weeks when the cells he had removed had been tested to see if he got clean margins when removing them.
Luckily all went well and I’ve just had the results from my smear 6 months later and it’s all good!
The whole thing was terrifying, but the NHS team who looked after me was amazing. If you can, see if you can get hold of a nurse from the colposcopy clinic. She/he should be able to talk to you about what to expect and also what the next steps are if it’s not good news. I spoke to an amazing nurse who made it really clear to me that severe daykariosis and CGIN cell changes were NOT cancer and were easily removed. Even if they come back it’s easy to have more treatments (although she then said this would impact my risk of pre term delivery if I fall pregnant, although would not impact my fertility at all).
I really hope everything goes okay for you. The good thing is is that you’ve caught it early. As the nurse said to me - the people im worried about are the people not showing up to these clinics. You’re getting treated so you’ll be fine.
I completely understand how you are feeling,. I received an abnormal smear in March last year having never had one before. I coincided with lockdown and people dieing of COVID. My appointment had been set for August of which I thought was too far away, I read the leaflet that came with the appointment letter. I had had bleeding after sex too. It had only really happened a couple of times, but it had happened. I phoned numerous time, but heard nothing for 9 weeks. Then I started receiving letters bringing my appointment forward.
A whirlwind then occurred with colposcopy, biopsy Lettz. Then I discovered it had gone into the lining of my cervix. I then had a radical hysterectomy in July 2020, which then followed 26 radiotherapy and 6 chemo treatments which ended in October.
I have to admit it’s been a whirlwind of events as they had to removed 7 lymph nodes which has caused some swelling and an infection and 2 clots on my lungs at Christmas.
This is life saving treatment and I’m grateful that they’ve been able to do something about it. My first check up showed that I was ‘clear of cancer’, so although awful and upsetting I’ve been treated and am fine. You will be fine. Here’s wishing you all the best. It’s a job you just need to get done. Xx
Just to let you know, I went in for my colposcopy & Lettzz yesterday. I was so nervous I felt sick, made worse by the fact my bf wasn’t even aloud in the waiting room let alone in the room due to covid.
First I spoke with the doctor (quite a character) he asked lots of questions, do you smoke, no, drink, no etc he then said Well well you’ve gone from clear smears to confirmed HPV with severe Dyskaryosis, that’s unfortunate (Thanks for that) I asked would I have been tested for HPV last time & he said no not necessarily because most people who’ve had sex have it, most people’s immune system gets rid of it or it can linger & get triggered by things such as autoimmune problems, or stress & anxiety which I suffer badly with.
Anyway colposcopy was actually just like a more detailed smear, the Lettzz was a tiny bit uncomfortable, but nothing painful for me, didn’t even feel the injection & over surprisingly quick, had worse dentist appointments.
Now it’s time for the 4 week wait for results . After being told anxiety & stress make it harder for your body to fight HPV, I’m starting vitamins & just going to try & keep busy & positive until I hear anything further.
Hi Sarah.
This was me in April 2019.
I know it’s hard to do but try and stay calm.
You can request to have the loop under a GA if you need to.
I had 2 loops under GA.
Advice for the colposcopy… when you are laying down try to push your bum down and breathe. It makes it easier for them and more comfortable for you.
Take a couple of paracetamol about an hour before you go.
Do some breathing exercises before you go in. It really helps
Remember you are now going to get treatment and care from experts.
You are not alone and you mustn’t beat yourself up about not going for smears.
All the love
Merryjean
Welcome to the forum, you’ve definitely come to the right place!
Try not to beat yourself up, you are certainly not alone… I’m 33, went for a smear at 25, and then not again till last year. Was HPV positive but they didn’t check for abnormal cells (because it was my first time showing as HPV) so invited me back for a repeat smear this year (March) which came back as HPV Positive and High Grade (severe) Dyskariosis (I cried… a lot!). Since then I have had my Colposcopy, biopsies and LLETZ, now awaiting results.
Part of me thinks this could’ve been avoided if I attended regular smears, but then that is beaten down by my smarter side that knows this could have been completely new last year. There are so many women who get regular smears and are here right now going through the same as us with us. We cannot change our past decisions, all we can do is hope things turn out well and make sure we attend in the future.
Try not to worry about the upcoming procedures, they’re not as bad as they sound. Let us know how you get on.
Hi all, thank you for your kind words and support. Also for explaining how lletz went for you. I hope you’re all feeling a little better now?
I decided to come away this weekend to the family caravan hoping it would distract my thoughts but to be honest that hasn’t worked at all lol. (Nice to be away anyway) I’m totally dreading my appointment on Tuesday but I do seem to be thinking less about how I ended up in this position and more about the future! Hopefully this will be a happy ending and I’ve just blown everything up in my head but If not, I also feel more prepared for whatever comes my way.
I think my biggest worry this weekend is how will I feel after the procedure?
I had a couple of missed calls from the hospital too but I’m trying not to over think this?! I did ring back but had to leave a message and I haven’t heard back.
I did speak to a colposcopy nurse though who confirmed that a doctor will be doing the procedure, I’m not sure if there’s a reason for that??
Gosh why do us women overthink everything? It’s self torture and probably unnecessary!
Anyway ladies thank you for all your comments, I’ll definitely keep you posted!
I’m going to go for a long stroll on the beach in a minute and hopefully clear my mind for a while, it’s the most calming place for me when I’m stressed. It’s the only place I feel so free!
. I would recommend you call the Jo’s Trust helpline if you haven’t already. They are amazing and will be able to answer all your questions about your results and what to expect at your appointment. The lady I spoke to really helped me to feel less afraid. Good information and a listening ear really helps. Be kind to yourself. X
. Everything is going through my mind and google is my worst enemy right now but like you said, what are we supposed to do?! My son is 14 and I’m trying to be “normal” when I’m around him so he doesn’t suspect something is wrong. It’s 5am now and I’ve been awake since 4 crying.
(Thanks for that) I asked would I have been tested for HPV last time & he said no not necessarily because most people who’ve had sex have it, most people’s immune system gets rid of it or it can linger & get triggered by things such as autoimmune problems, or stress & anxiety which I suffer badly with.
but I do seem to be thinking less about how I ended up in this position and more about the future! Hopefully this will be a happy ending and I’ve just blown everything up in my head but If not, I also feel more prepared for whatever comes my way.
