Worried newbie with concerned Colposcopist :(

Hi all,

I came across this group while googling (always a silly idea I know!) but I could do with some advice or other people's experiences. 

I have just turned 25 years old so have just attended my first smear test. 

10 days later I received a letter saying I had severe high grade dyksarosis (not sure on spelling!).

I was quite shocked by this but after some research I did realise this is actually more common & less scary than it sounds. 

I attended a colposcopy appointment wednesday (17 days after my smear) where I had 4 biopsies taken. 

The woman & staff were all lovely but I did walk away feeling very unsure. 

She explained she was using a vinegar like solution to highlight any areas which basically turned everywhere white! 

She explained it was quite extensive & was not only on my cervix but had spread to my vaginal walls & up through my cervix hence why she took 4 biopsies. 

She explained she was referring me to a specialist hospital & I would hear from them once my biopsy results were back but I would definitely need an operation whatever the results were. 

What has worried me is that she discussed some possible outcomes. She said some areas where pre-cancerous but there was other areas that would have to wait for the results. She then talked about outcomes such as being offered a hysterectomy & discussed cancer. She did say she was only mentioning these words as a worst case scenario & purely so I had heard this words already & wouldn't come as a shock if they are discussed with me at my next appointment with the specialist. 

Now I'm abit worried & confused. 

She never mentioned who this specialist is or what they can do so differently to her or why I needed to be referred elsewhere when I know the clinic I attended does the usual treatments as several friends have been there. 

Had anybody else had these abnormal cells whatever they may be spread to vaginal walls & into your uterus? 

I have had 3 children so I'm guessing she wouldn't of mentioned a hysterectomy if I was childless but it has left me wondering if she has mentioned this as she knows something she hadn't told me? 

I know it is purely a waiting game but any advice would be appreciated.

Thanks.

xxxxxx

Hi Johanna, Im really sorry you too have had these results back and completely understand the hell you are going through! I have recently had my first smear test too at 26 as I was pregnant with my 4th baby when I turned 25. My results also came back as severe dyskaryosis and a high grade lesion was confirmed at my colposcopy appointment. My cervix also completely changed white which I was really concerned about. They told me there was too many abnormal cells to take away there and then and that they were up to the vaginal wall so I was booked in for a GA for the Lletz procedure and biopsies. I had my op 10 days later and they said they think they have removed it all but am now waiting on the histology results. The Lletz procedure was fine for me with very little pain or bleeding. The waiting and not knowing is the hardest part some days I feel like I'm going crazy! I too have exhausted google over the last few weeks, I have seen some worrying things but also lots of positive things where lots of people have had severe grade, abnormalities removed and all clear results so I am trying to remember them when I feel myself getting in a panic! I think a positive thing to remember is that these abnormalities have been detected and all the urgency is in our favour to treat us quickly and give us a really good chance of getting rid of them! I know it's easier said than done and some days I convince myself that I have cancer and worry about how it will effect my children but we have to be strong and not make our selves Ill with worry. My consultant too seemed really concerned and I keep replaying the whole appointment in my mind but at the end of the day no one will no for sure either way until the results are back from the lab. I will be keeping everything crossed for both of us and hope we both get good results :) sorry I couldn't tell you anymore but wanted you to know your not alone going through this!

take care

Nikki xxxxxx

Hi Nikki, 

Wow your case seems quite similar to mine. Iv found it hard to find any info as most pesinus with  similar results have been older than me. 

I also was expecting a simple Lletz pride user during my colposcopy but then she said she wouldn't be able to as was too extensive & needed to refer me to a specialist. 

She couldnt say exactly what procedure I would need but did go through a few options that may happen but what worried me the most was her talking about how I'd feel if a hysterectomy was reccomended. I felt like maybe she knew something I didn't as was abit of a drastic thing to mention if it could be something & nothing really!

She said my biopsy results could take a few weeks to get back but then I'm not sure if she will send them to me & then refer me or she will just earns them straight to the new doctor at the new hospital. 

i am very greatful so far everything has happened so quickly (only 3 weeks since my original smear!) but time just seems to be going so slowly! Iv seen some people have waited near 8 weeks for biopsy results :-/ 

Im finding my recovery from the biopsies quite challenging actually. How are you finding your recovery now? 

Xxx

I haven't seen many post from people as young as us to be honest and the thing in really struggling with is that this was my first smear test so there is no actual time frame that you can go on and no previous normal smears to judge how long things could have been abnormal for. My consultant said as soon as she looked at my cervix that things didn't look good which instantly put me in a panic, she also spoke very briefly to be about a hysterectomy being the worse case scenario but sort of suggested it didn't matter too much as I already have children. I was in such a state of shock that I couldn't even think of anything to say or ask and could just about walk out of the room. Now I'm kicking myself I didn't ask more! I'm not sure if she said those things to make me aware of what could happen or if it was because she saw something that was really concerning but I keep thinking that if it was just a simple case of having the Lletz followed up by 6 monthly checks that she would have been more reassuring and said its probably going to be nothing its a simple procedure and you will probably be fine after sort of thing. from what I have read online and other posts if the biopsy results are normal and don't show cancerous cells you get the results through the post and they take up to 8 weeks But if they do show cancerous cells you get called in and told of the results, this seems to be between 2-4 weeks. So the longer you wait the more likely they are to be good news i guess. I am going to call the colposcopy secretary when the 2 weeks is up just to check if they are back yet. The consultant did explain that she couldn't do the treatment there and then because it was such a large area it would be harder to do and because the cells are so close to the vaginal wall there was a risk of burning me with the loop instrument that they use to remove the cells. I have had period like pains since the Lletz treatment but only a slight bit of bleeding for the first two days so it definitely wasn't as bad as I was expecting. I didn't get to see my consultant after the op I just saw a nurse who said they thought they had removed it all and that the results will be back with in 8 weeks so I am still none the wiser. Also on the day of my op the hospital had no beds for day surgery patients so had to cancel all the other patients ops that were waiting with me but they still did mine. Not sure if I'm reading too much into everything or if these should be alarm bells. It's all really hard but all we can do is wait. I did call my Gp who was really good at explaining the initial procedures to me and said when he had received further info from my consultant he would explain the rest to me, so might be worth calling your Gp to see what reports they have received so far for your case Xxx

Gosh! We really are in pretty much the same situation. It’s be good to keep in contact if you fancy? I’m left wondering how long iv been sat with abnormal cells too with this being my first smear. My cells have spread to my vaginal walls & come about 2cm down. They also go through my cervical canal but obviously she could only see so far. She said I would hear something within 1-3 weeks & would know exactly the plan of action by this time next month but I wish they’d just an exact time lol. 1-3 weeks is a big difference! I’m completely the same about the hysterectomy thing. It completely threw me off course. I have several friends who’ve had abnormal cells removed but all have just walked in & out with no such chats exactly the same as I had planned. My GP is pretty useless so probably wouldn’t offer my much in advice other than to wait it out. The hospital she is referring me to is around an hour away aswel! No idea why the hospital I went to can’t do it, my friends had their treatment there?
I hate the waiting game!
Xxx