1a1 diagnosed aged 25

Hi everyone,

I've been a silent member of Jo's trust forums since the start of my journey and have found it so helpful and the people so supportive. I don't think i would feel quite so relaxed about all this if it wasn't for all you lovely ladies. I thought it was about time i shared my story to see if anyone else is in a similar situation at the moment. This was my first smear (eek) so i was pretty scared and confused when it came back abnormal. I found the colposcopy quite difficult, painful, and it made me quite sick afterwards. My boyfriend attempted to come in with me but didn't cope very well. At least he tried! The biopsies confirmed i had CIN3 so i then went on to have the lletz treatment. This wasn't anywhere near as bad as the colposcopy and i didn't really have any sort of reaction until 8 days afterwards when i started bleeding. I recieved the horrible letter on 1st July saying 'we're pleased to offer you the following appointment' with no indication as to what my results were. I was pretty sure at this point that cancer was going to be mentioned because i couldn't think why else they wouldn't tell me by post. I rang my GP and she confirmed that yes i should prepare to be told they found cancer, but she thinks the margins may be clear already. I went in to see the gynaecologist yesterday (7th july) who confirmed they had found cancer (1a1), 3mm deep. They're not sure if the margins are clear and the margins for the CIN3 weren't clear so i need to have more treatment and have an appointment with the oncologist on friday to discuss this. I'm worried about my family and boyfriend who are clearly worried sick, and feel a bit bad that i actually feel ok about it (should i be freaking out..?). That's not to say i'm not scared, i'm terrified about the next bit, i'm dreading waiting for the next lot of results and i'm pretty down about the effects this could all have on my ability to have children (i'd love to have a family one day). I've only told 2 of my friends but my mum has told alot of people! So i've been getting a lot of emails, which is lovely, but i do feel like i need to reassure everyone that it's not as bad as it sounds, and i'm slightly surprised that i'm coping with it so well. If anyone else is in a similar situation i'd love to hear from you. I know some of the ladies on here have been through hell and back so i feel incredibly lucky that it's been found so early. Oh, also, at my appointment yesterday they checked me over (i had been bleeding for 2 weeks following lletz) and found i had an infection so they applied silver nitrate and gave me antibiotics. I was quite surprised at some of the bits coming out of me yesterday (sorry for tmi!!!). But i feel like it's calmed down a bit today so i guess it's just because she irritated the wound or something?

Anyway, thanks for being there you lot :) it's great to have a support network like this. Fingers crossed for the next bit!

Hello there,


My experience has been a little similar to yours. I'm 26 and had been bleeding for about a month prior to my smear. My nurse wouldn't carry out the smear due to this and referred me to a gynaecologist. I'd never had a smear before so wasn't even sure what to expect. It too two months for me to get my appointment where I was given a colposcopy.

At the colposcopy I had two nurseswith me and they made me feel a little better, but as I'd never had a smear it was very painful and uncomfortable. At one point, they told me they needed a consultant to come and look, so I worried. However, she assured me that I had a little fibroid growth in my cervix, but no abnormal cells. I was told I'd be referred to a surgeon who would have a look before removing it.

Two weeks later I met another Consultant, who  informed me that in all three biopsies taken at the colposcopy, they had found cancer. He says it is rather large, but hopefully has not spread. I've had an MRI this week and get my results on Friday. However, I'm being referred to another hospital. 

I feel like we've had some rather similar experiences on our journey too. My boyfriend hasn't really taken any of it in. I've only told a couple of friends but my Mum has told loads of people which has resulted in family members I haven't heard from in years getting in touch. I'm pretty unsure how to deal with them all. My boss knows, but keeps hassling me about going back to work!

Like you, one of the things making me the most down is future regarding children etc. I'd very much like to have children with my partner in the future, and the idea that this may prevent it is rather upsetting to me. My nurse has assured me that everything will be done to prevent the loss of my fertility, and she's hoping I won't need a hysterectomy. I'm also struggling already with financial issues so I'm hoping for more information soon.

It sounds like we're at rather similar points on our journey, so if you ever want to chat, I'd appreciate that also. This group has already been very helpful for me, but it's good to know that I could talk to someone of a very similar age as well!

All the best for your nextappointment!





Firstly sorry to hear of your diagnosis but well done for being positive it is definitely the best attitude to get you through this. 

I was staged 1a1 too and was told that if I had wanted more children then there would have been options, another lletz under general cobe biopsies etc so I am sure your consultant will discuss those things with you. 

maybe it would be better for your boyfriend and mum came with you to your appointment as I think my husband benefited by asking questions and being reassured by consultant  

I would be asking once they do the next treatment how often will they be checking on you etc  

Good luck for Friday and let us know how you get on xxx



wow i'm so please to see some replies already, i thought i might have rambled a bit too much, i tend to do that! Hani i'd love to stay in touch and find out how you get on with the next bit. I don't know about yours but i think my mums way of dealing with it is to talk to as many people as possible so she feels supported. That's rubbish about your boss, could you get the hospital to contact them maybe. I've been assured the same thing regarding children and it was one of the first things they brought up, i get the impression they'll do everything they can to sort things out in ways that won't affect fertility if they can. Good luck with your MRI results, and similarly if you ever want to talk i'd love to hear from you. Sarah, boyfriend and mum both came with me yesterday and will both be there on friday too which is great. I tend to forget the details of whats said within 5 mintues of leaving so any extra ears is handy. I think it sounds like i'll be getting a cone biopsy but hopefully they'll clarify that on friday. Good luck to you as well with the next stage and thanks for both of you for replying to me :). What a great community!

Glad they are coming with you and good luck for Friday. 

maybe write a list of questions you want to ask as annoying when you get home with unanswered questions. Xx

Hello ladies,

I too have been silently following the forums onhere and mums net for the last 6months of my journey. Unfortunately it cumulated to beingdiagnosed with 1b1 yesterday. I am a bit she'll shocked to say the least, as I had an Mri scan first which came back clear, as at the same time a biopsy sample which also came back with "only"cin3 and Cgin. I thought I had got away with it. I felt so lucky. Within a week I had the letz procedure carried out, and was told I would have another smear in 6months. I knew the removed areas would be sent into the lab, but didn't give it much thought, as I thought the worst that would happen would be they wouldn't have the clear margins, and there might be a micro tumour, And they would just suggest another letz. Instead they called me in yesterday and sat me down and told me they found cancer. After a few seconds if stunnedsilence I asked them what this meant, and asked about the margins, but they kept shaking their head, and I didn't understand. They said if I already had children, they would just do a hysterectomy, but because I don't have any children yet, and would like a family they suggested I may be able to have a trachelechtomy, where they remove the cervix only. I would still need to have lymph nodes removed also. 

Every time I had one result and thought it was fine I wouldhave another worse diagnosis than I thought, and I'm so scared that there is more than they know, and I'll end up needing more invasive treatment. I'm not sure why they havent just offered a cone biopsy first. The cancer they found was just 7mm wide, but was an adenocarcinnoma, which is the cells on the innerlining of the cervix. So this might be the reason? The trachelechtomy is just an option at the moment, and as I said I'mpreparing for the worst, as it might have spread to my womb already, although just on a mircscopic level, as the MRI was clear. 


Out of interest has anyone Had a coil fitted in the past, as I am wonderiNg if this pushed the hpv higher up into my cervix? The dr said it wouldn't have. Also I have an ectopy, which is where the inner cells protrude from the cervix thereby making them More prone to being attacked by hpv?


On a positive note my ex has agreed to donate his sperm to freeze some embryos for me later, and another friend out of the blue offered to be a surrogate for me. I am so happy I have the support form my family and friends but at the same time I hope it doesn't come to this! It is hard to stay positive for my friends. I could hear the shock in my exes voice. Also all my family live abroad, and So do many of my friends. So I am quite lonely in my flat although I have one or two close friends where I stay. Finding a support group would be really helpfull. Does anyone know of any  in Scotland?

Thank you all for listening, and I hope to find somE support on here.

Sorry for all the funny spelling. 

Nat x


Smear test 2nd jan 15 - hpv16 positive, smear normal

Smear test 5th feb - minor changes

Went to gum clinic to ask for colposcopy 12th feb due to vaginal bleeding after sex.

Colposcopy 18th march - results took six weeks, unsatisfactory sample

Colposcopy 11th may - cgnic and cin3, possibly cancer cells too, but they weren't sure

Colposcopy 26th may - cgnic and cin 3 only

Blood samples for kidney and liver 27th may -normal

Mri scan 12th June- all clear

Letz treatment - 19th June. Two 1cm bits removed.

Results 8th July - cgnic, cin3, and cancer 1b1 <7mm

Waiting to see gynae-oncologist





Hi Nat I'm sorry you have had diagnosis too it's such s difficult thing isn't it. 

I totally understand when you say each time worse diagnosis and I think it is natural for us to worry. 

Maybe could you visit family or family visit you? I go to church and find support and general feeling I get there really helps me I don't know if this is something you would consider. Often people at churches are kind people. :) 

I'm sorry can't answer questions re coil etc but know that I did same thing trying to blame something but truth is we will never really know Unfortunately 

Big hugs and well done for posting please keep in touch with us, lots of ladies who are in same boat so can all be here for you xxxxx


Hi Sarah, 

Thanks for your reply. I started this again on a new thread.

I know what you mean about church, but I do see how that might be helpful. Over the last femonth this I felt a bit like I was going nuts, praying to a god I didn't even know existed to just give me some sort of guidance. But I can certainlysee how the community of people might help too. It can be quite healing to just pray and let it out. I will consider this. 

What helps me at the moment is going to yoga, and trying hypnotherapy for sleep. Unfortunately my Gp had felt the need to give me some medication for anxiety which had helped in the past, starred that back yesterday. 

Its funny, but I feel a lot calmer now I have this diagnosis, then I did before waiting to have the MRI. have looked up all the treatment opptions, and I could be in a much worse boat. Of course I will feel very anxious when I will have my lymph nodes analysed. Now I think it will be important to keep my head on right and try and ask all the important questions, and find out my options in terms of what type of surgery and where. My sister lives in bristol and I in Scotland, but I will see if it's possible to have treatment/surgery closer to her.

As well as trying to find a reason,I'm also trying to clutch atstraws asking them if I really need all this, and hadn't they just removed it so it would be fine. It just seems so unfathonable.

Iwanted to say to jojo, there seems to be lots of options before hysterectomy, and I would explore thhas to have children later. I also consider myself young still , 32 lol, and desperately want a family,even though i am currently single. Lots of things to think about, but I'm sure the doctors have our best interests at heart.

Hugs to everyone too :)



Hi Nat I'm sorry to hear about your diagnosis and I know exactly what you mean about the waiting being the hard bit and feeling better after the diagnosis. I saw my oncologist today and I asked what would happen if they found more after cone biopsy. She said they would then talk about a tracholechtomy (however you spell it) if it was upgraded to 1b1 so I imagine at that's why they haven't offered a cone biopsy to you. She also told me if that happened I'd still be able to keep my fertility. Keep us updated and stay strong. It sounds like your family are being very supportive. It's know it's very easy to worry that there's more because that's exactly what I'm doing but just try and take it a day at time and focus on the present :). Hani I hope your MRI results went OK today. Hugs all round xxx

Hiya Hun I know how you feel I'm 23 and have been going through similar, I had my colposcopy and biopsy done 5 weeks ago and got called today and told I needed to make a appointment... Damm it thought I'd got away with it! No idea what they have found bur I'm gueasing its pretty bad if they want to drag me in and haven't told me via post ect...  Told one or two of my friends what's been happening but of course they don't understand, nobody does until it happens to you god I thought I was invincible! 

Stay strong xx

Hi Ruby thank you for your message and sorry that you're going through it too :(. I have my cone biopsy tomorrow under general anaesthetic so I'm getting a bit scared, eek. The hospital wouldn't tell me anything over the phone either but that doesn't necessarily mean it's awful news it's just that the reception staff aren't qualified to read the results. I rang my gp and she told me over the phone so I would try that if I were you. I also went in to see her yesterday just for a chat because I was feeling anxious, she wasn't able to answer many of my questions but it still really helped and she gave me a copy of all the reports she'd been sent in relation to this which I found useful. She's been great through all this actually. When is your appointment? I know how difficult it is not knowing and feeling like your in the dark. Try and focus on the fact that you're in good hands, and even if it is something a bit more than everyone expected it's all very treatable and it's great that it's getting sorted. Let me know how you get on and I'm on here pretty much every day if you ever want to talk xxx

Thinking of you tomorrow Jojo! (having my lletz too)

And you! Hope it all goes smoothly xxx