CIN 2, biopsy taken, panicking & worried

Hiya,

I've been crying since my colposcopy this afternoon and am so stressed that I can't think about anything other than this, so I would appreciate any advice.

I'm 26, had the usual smear test at 25 (18 months ago) and it was clear. I had another smear last week simply as part of a routine full body health check-up that comes with my private healthcare, I didn't think much of it seeing as my last was clear. The results came back yesterday as CIN 1, with HPV 16 high risk. I went for the colposcopy today, and the doctor confirmed CIN 2 at least. He took a biopsy and I now have to wait for the results.

I'm absolutely terrified. I'm trying to reassure myself that it's very likely that it's just abnormal cells that can be treated, but I can't help dreading the risk of cancer, and also the fact that this can affect getting pregnant (I am looking to try for a baby in the next few years and can't bear the thought of anything affecting this.)

I'm not coping very well, and am kicking myself for being in such a state but I just can't help it. The tears just won't stop coming and I don't know how I can handle getting on with life until the results come in. I'm so scared. My boyfriend is fantastic, so supportive, but in so many ways I feel completely out of my depth. Thanks in advance for any advice x

Hi Sophie

I had CIN3 and did not cope very well at all. In fact I let it ruin my Christmas. Luckily my results came back yesterday all fine. They have removed all the bad stufff and I just have to go for a smear with my GP in 6 months now.

I know you must be really anxious at the moment but please try and focus on there being an extremely positive outcome. They may decide that you might need further treatment after the biopsy, such as LLETZ but it is not too hideous and over very quickly. They may equally be really confident they removed the abnormal cells in the biopsy and just want to monitor you.

If you do need LLETZ treatment, it will not effect your ability to conceive in any way, just that if you have had several procedures, or a lot removed, it can weaken the cervix and occasionally cause pre-term births. If this were to be the case, which is very unlikely, you would be closely monitored and they can put a stitch in your cervix to hold the baby in until it is ready. 

For now, try and think of the here and now. If they suggest you have treatment it will be entirely in your best interest and fully conscious of preserving your fertility.

Please do try not to worry, having had a clear smear recently it is extremely unlikely to be anything worse than they suggest.

Big hugs

x

 

Hiya,

I'm so happy to hear your results came back fine! You must be so relieved. I am just so scared about what my results could be. He said it's CIN 2, but I can't understand why he didn't remove it there and then if he thought it was just CIN 2. It scares me that I had a biopsy because I'm worried that he thinks that means it could be CIN 3 or worse. I was crying too much to focus on what he was saying so I'm struggling to remember what he said after the biopsy itself.

I'm feeling so so anxious - I think the best case is that it's CIN 2 and he can remove it. And the worst case I guess is that it's cancer, which is just unbearable to think about.

How did anyone else get through the wait? I've managed to stop the constant tears but I don't have the energy (mentally) to do anything other than lie on the sofa with a hot water bottle and googling statistics etc (which I don't think is helping.)

What did everyone else do to get through it? I can't bear the thought of going to the office on Monday and having to work, it's just too overwhelming.

Thanks for your response, it's so helpful hearing from others xx

Hi Sophie I'm the same as you I had my colp on the 23rd Dec and 2 biopsies were taken I was so anxious at the thought of the procedure that everytime i tried to say something i burst into tears so here i am 3 1/2 weeks down the waiting line I havent had a full nights sleep I can't concentrate on anything I did ring up the clinic this week and ask to speak to someone because I was so desperate for some info and a nice nurse reasured me that my cells are only mild so i do feel a little bit better, I think the postman thinks I'm stalking him I wait every day for him put the letters through the door my 4 weeks will be up on tuesday next so fingers crossed my letter should come but the nurse did say it may take a little longer because of the christmas holidays hope this helps to know that your not the only one that is freaking out I think its a really cruel system to make people wait so long with nobody to talk t

Hi Sophie

Firstly, thanks. I feel a bit of a fraud now having made such an incredible fuss...

It is completely understandable. I have barely left my sofa and actual real comfort blanket for weeks! It is a very real way of coping with a scary situation, and the power of the magic blanket should not be underestimated. Unfortunately it also led to an obscene amount of internet shopping.

I am no expert but what I think is likely is this. There is a lot of pressure on health care professionals to show due diligence and essentially not get sued. If your smear showed CIN1 but to the naked eye showed 2, the colposcopist has a bit of a dilemma. If they go in gun ho and remove the suspected CIN2 with what turns out to be an unnecessary procedure, you might be angry. With any procedure there are risks of (very rare) complications, and should you have one of these, for unwarranted surgery they would be hauled over hot coals. So the best bet for them is to do a biopsy to cover themselves and ensure that any treatment is justified and documented. 

If your biopsy comes back as CIN1 I believe they would not normally treat and just watch and see.

If it comes back 2 or 3 then further treatment would be really likely.

I don't like the idea of this as would gladly have been overtreated than undertreated, however the culture we live in today does not really make such judgement calls that viable. I know this makes it awful for you facing the wait of a biopsy and then also the possible return for another procedure and then another wait for another biopsy, however they are doing it with everyones best interests at heart.

It doesn't make it any easier on you, but should the biopsy come back as mild changes you will have been saved an unnecessary op. Although it is not that bad having LLETZ, you do bleed and feel a bit rotten for a while, you might need time off, and you will undoubtedly feel anxious waiting for the results. So if you can be spared that it would be a great thing.

I will eat my new shoes if it comes back as anything worse than CIN2 :-)

Big hugs

x

Thanks for your responses x

Carol sorry to hear you're going through the same thing - the waiting is just awful. I wish it was a set day that we get the results and then at least we can focus to getting to that day, rather than anxiously waiting to hear back 'at some point.' Were your biopsies also for CIN to see which level it is? It's all a little confusing and I keep thinking now of all these questions I wish I'd asked.

Suzy I am exactly the same, still on the sofa, with my blanket. I also would rather be overtreated than undertreated but I see exactly what you mean by the doctors wanting to err on the side of caution. It seems a little confusing how it came back as CIN 1, yet by eye is CIN 2, and yet with the biopsy could yet to turn out to be CIN 3. I wish it could be clear right from the first look / test, as the unknowing is really tough.

Today has been so up and down - I've gone from crying my eyes out, to feeling quite calm and even managing to distract myself for 20 minutes at a time at some points. However I am just terrified, and can't shake it. I can't help thinking the worst, and thinking how will I cope if it's cancer. I hope so so so much that it's not, but I just feel so powerless :(

Thank you for your support, hearing from others really helps x

Hi Sophie

I really was exactly the same. I went for a smear feeling something was wrong as I had some bleeding. My smear was extremely painful (never had this before but guess she must have poked me in the dodgy bit.) and the letter came back worryingly quickly. Annoyingly, because of Christmas I had to wait from 8th Dec to 2nd Jan for my appointment. From that second forward I was a mess! I cried through both my childrens school nativities, was glum at the Christmas parties and events I could not avoid, smashed the iPad, burnt my arm twice, forgot everything and broke in to tears all the time. A lot of this in front of my very confused 4 year old son, which I am not proud of. At the doctors he even offered to buy me a lollipop.

Anyway what I wanted to say is it is completely natural. 

I know what you are saying about feeling powerless. My poor husband thought I was going round the twist as I decided to start juicing. It really helped me as I felt that it was the only thing I could control and do to make me feel I was helping make myself better. I also read a lot of books. If you have a hobby or something to throw yourself into it will really help. Not saying this is a time for dieting, but for boosting optimum health :-)

It is really rotten waiting. I am so very aware that I could have easily had some invasive cells in there too and be going down a different route. Just try and know that this is extremely unlikely for you.

Carol,

4 weeks is a long time, you have been very patient. Did you try your consultants secretary? Mine read my letter to me over the phone (hope it was not the wrong one!) and saved me the agony of waiting for the snail mail. Worth a try if you do not hear early next week. I was expecting an earful for having the cheek to call up after 2 weeks but she was lovely.

Try and enjoy your evening

x

 

Hi Sophie I've not a clue what biopsies were looking for my smear results came back with Mild Dyscaryosis and HPV I was so angry and anxious that i had to go and have another investigation of my private bits. I had really bad periods when I was 38 and the doctor advised me to have a Mirena coil which was in 2003 that did the job till 2009 till it needed to be changed thats when all the problems started with not being able to find the threads and now my cervix doesn't like to put in an apperance when its smear time i've had 14 internals and 2 transvaginal scans since 2009 so when the abnormal result of this last smear turned up i was devastated i just want to get away from all this intrusion I asked the colp doctor to let me have a hysterectomy i just can't face Lletz then all the follow ups 

Hi Carol,

Feels a bit like I am stalking you today. I just wanted to say I am really sorry you have been through so many exams. I can completely understand your anger and frustration. 

Hi Sophie,

Wishing you a better day today. If you feel up to it try and maybe go for a little walk or something, maybe reward yourself with a stop at a nice pub. It is a very lovely morning. I found little things like that really helped, although took a lot of encouragement to get up and out. You can even take your blanket :-) 

x

Hiya,

Thanks again for your responses. Today I woke up determined to try and get out and do something to take my mind off this - I woke up and got ready straight away so that I didn't have time to dwell. I went to a zumba class and managed to get through two thirds of the class, and then left and went to meet my best friend for lunch and coffee. We chatted and chatted, mainly about this, hard to focus on talking or thinking about anything else. I went to a health food store and spent nearly £80 on food supplements (I was googling what to take to help prevent cervical cancer) and not sure if it's psychological or actually will help but I think it certainly can't do any harm to take these supplements. 

But my mind is in complete overdrive - constant pounding headache from the stress. I've not cried so much today which is good. I'm trying to keep reminding myself that it will most likely come back, confirm CIN 2, this can be removed, and I can look forward to a clear smear result in 6 months. I need to keep focused on this and hope for this outcome. This works for a couple of hours and then the chance of it being cancer hits me like a brick and panics me.

Carol sorry to hear you've been through so many examinations, it's so unpleasant and uncomfortable especially being such a personal and delicate area. 

I really want to call my doctor and ask him, what are the chances of it being cancer and also what are the chances of it being CIN 3. I'm wondering, wouldn't he have seen if it was CIN 3? This is when all the questions are whirring around my head.

x

-

Aug 2013 - turned 25, clear smear result

Jan 2015 - smear taken as part of routine 'full body' health check-up. Results show HPV 16 - high risk, and CIN 1 confirmed

Jan 2015 - colposcopy, CIN 2 confirmed, biopsy taken. Awaiting biopsy results

Hey Sophie,

Great attitude. Glad you were able to have some fun today.

I will be honest with you, that panic will probably sit with you until the moment the results are in your hand. The trick is trying to manage your anxiety until then. It is such a huge scary experience and I am really confident that you will be one of the very fortunate ones who will need a bit of treatment and not have to look back despite how you feel at the moment.

Wish I could tell you for certain it will be ok and sorry that it is so painful waiting

x

 

 

Hiya,

Today I struggled to get up and ready for work through my floods of tears. I was a few minutes late and when my manager snapped at me I thought I was going to burst out crying. I waited until 9am and then called the doctors and asked for my doctor (who carried out the colposcopy) to call me. He called back 10 minutes later and I asked him a couple of questions

1 - why didn't he laser the cells there and then during the colposcopy if it was CIN 2? He said that he's not certain it's CIN 2 and because I'm young and healthy he wants to wait and see what the biopsy confirms that I have before he decides the best course of action.

2 - I asked him the chances that I have cancer, and he said that although he can't guarantee it's not the case, he said it's really not something I should be worrying too much about - he said that I am most likely just suffering from CIN 2 which can be treated and cancer almost certainly prevented.

Hearing this was like a weight lifted off my shoulders - although he said nothing different to what he said on Friday, I was able to digest it much more rationally today. Chances are I'm going to be absolutely fine, and there's no point in me worrying about something that most likely won't be.

Really working on a positive outlook until my results come back. It's not pleasant waiting but I feel much calmer now than I did over the weekend. It's very easy to google and scare ourselves silly with what we read. I woud urge anyone who's feeling the same as I was over the weekend to try and remember that although our minds might go into overdrive imagining the worst, chances are it won't be as bad as that. Easier said than done but my fingers are crossed for a positive outcome and I'm going to try and stay upbeat until they results come back x

-

Aug 2013 - turned 25, clear smear result

Jan 2015 - smear taken as part of routine 'full body' health check-up. Results show HPV 16 - high risk, and CIN 1 confirmed

Jan 2015 - colposcopy, CIN 2 confirmed, biopsy taken. Awaiting biopsy results

Hi guys,

I’ve just read all of this thread and can identify with all of it! I had colposcopy and lettz last Monday and I’ve been a wreck ever since! It’s the wait!!! It’s unbearable. I’ve been okay when my minds taken off it but I can’t sleep at night, lie awake until the early hours googling ( although I’m trying really hard not to) and then walk into work a zombie.

Anyway my jos trust posters and fact sheets came in the post today so tomorrow I’m going to focus on putting them up.

If jos trust has helped us it can help other people too!

Lots of love girls

Xxx

Hi Sophie

Really glad you made that call and feel a lot more reassured. Great attitude, hope you get some news soon.

Hi Sam

Sorry you are having to do the dreaded waiting game. It really is so gut wrenching.

Love that you are spreading the Jo's word. If you are on Facebook I think there is a selfie campaign next week which should cause a stir :-)

I rang in after 2 weeks and my lletz results were back. The consultants secretary read the letter I was due over the phone. That was 5 days ago and still no letter through my door. I honestly think I was on the verge of a breakdown, and not sure how I would be doing this week if I was still being polite and patiently waiting. If you are brazen enough, wait until 2 weeks and give them a call x

 

 

Yes the wait is simply terrible! I was an emotional rollercoaster at the weekend. I've never cried that much or been that worried, ever. I've been better since yesterday, feeling much more positive and trying to focus on getting through to results day, which is next Thursday as it stands (I'll get a call if it's any sooner.) Over the weekend I couldn't manage more than 20 minutes of distraction before something set me off into panic mode. I've managed to stop googling and each time I'm tempted I come on here and read some forum posts!! Try doing that, it helps distract you from the things you end up reading!

Ah until you guys posted this, I wasn't aware that it's Cervical Cancer Prevention Week next week! I'm trying to think if there's anything I can do (at this late notice might be tricky to fundraise) but I shall defintely use Facebook to raise awareness. Already, since telling my friends what's happened, one has booked in for a smear. Spreading the word obviously makes a difference! I knew nothing at all about cervical cancer before this week - I didn't even know it was related to smear tests.

x

Aug 2013 - turned 25, clear smear result

Jan 2015 - smear taken as part of routine 'full body' health check-up. Results show HPV 16 - high risk, and CIN 1 confirmed

 Jan 2015 - colposcopy, CIN 2 confirmed, biopsy taken. Awaiting biopsy results