High grade (severe) dyskaryosis)

I am really worried… I am here to get some encouragement…
I have received today my smear test result - high grade (severe) dyskaryosis. Wat worries me the most is that the letter said “în almost all the cases this is not cancer, but we would like to see you for a colposcopy”. “Almost” and “but”…
My story starts in 2013, when my test came back HPV positive. I had a colposcopy at that time, but they did not find anything and the doctor said to wait, as my immune system migh get rid of the infection. The next smear test was after 3 years, in 2016 - negative, then another negative test in 2019 and in 2022 my result was HPV positive, but no changes. I have been in the same relationship for 20 years. However, this year this changed from “negative” last year into “severe dyskaryosis” … I have been reading online all day, tying to understand my situation. I am 45 years old and I have a 15 years daughter who is very anxious, I don’t know how she would cope with bad news and I so much would like to protect her from all of this…
My colposcopy letter should arrive in 5 working days, my head is spinning but I try to stay calm.
Anyone woth similar experience and positive outcomes?

Thank you so much for listening to me.

Hi
Sorry to hear what you are going through this, I have had CIN1 for 7 years with high risk HPV, i have had yearly colposcopies and every time biopsies taken, the wait for the results was the worst part, in May my Results came back CIN3 i have just yesterday had my Leep under GA as i had multiple Lesions, the GA its self went ok better than i ever imagined i was petrified and so far although i did have some pain on my right side last night I’m a little uncomfortable but glad i went ahead with the Leep. The best thing to remember is we are all in good hands and Cancer takes years to develop, its easier said than done but please try not to worry xx

Hi Zeebey,

Thank you so much for your message and for your encouraging words. I didn’t sleep much last night and I can’t eat much as I am anxious…
Part of me is trying to stay strong and think in a positive way, but I still have so many scenarios in my head. Like how quickly this moved from no changes into severe high grade dyskaryosis…
For how long did you have to stay in the hospital?

Your welcome, i was the same 7 years of little more then mild CIN1 and 12 months later bam Severe CIN3, I was only in at 12.30 yesterday and was home by 6.30, i went under about 3pm and woke just after 5pm. Just got to wait for 4-6 weeks to find out if they got clear margins and the will be seen in 6 months for my test or cure. I spoke to my consultant before the procedure and she is happy to discuss Hysterectomy should my margins not come back clear. Im at the stage now with years of colps and biopsies i just want it all gone don’t wanna go through the last 7 years again. From what I’ve read CIN can skip numbers but we have to remember CIN3 to cancer will take years. Over the last few weeks i convinced myself of the worst as i watched on screen over the last 7 years the cell changes grow bigger but always staying white and in May i seen then all over my cervix a bight orange and Dr Google is the worst thing anyone can do. This forum has been a life saver I’ve used my own post on here as a kind of diary. Reading through everyones posts and experiences really does help. Please make sure you do come back and update us, many posts don’t have that closure and i often wonder what happened in the end to some of our posters xx

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Thank you so much! I am on holidays now, so free to write messages at any time. However, the situation will change when I have to go back to work. But for sure I will keep you updated as I also noticed that many posts have no updates and I wondered if they are well…
I would definitely consider a hysterectomy myself, if that would be accepted. I am 45, dealing already with pre menopause, so I would not mind…
I understand exactly what you mean by Dr Google, my husband took my phone away yesterday as I was scrolling through so many websites…
I am thinking that I had this HPV for a long time ago, before meeting my husband 20 years ago. I had a C-section when I had my daughter, but didn’t know about my HPV until 2013 and I also I am also worried abut me passing it onto her (I know, it sounds crazy, but I worry…)
She had her HPV vaccination and I hope that she is okay and she will never ever have to deal with anything like this…

Good morning,

I have received a text with a date for my colposcopy. This is is on the 22nd of August, at 8.30. My heart is beating very fast, they moved very quickly with my appointment so I presume it is quite serious.
Last night I went to bed very late, just read a blog of a nice young lady whose severe dyskaryosis turned to be cancer…
So many things in my head right now…

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Try not to worry it’s good that you are being seen soon xx

Hi there,

Try not to worry, most of the time CIN3 gets treated with LLetz which will remove the dodgy cells and from what I’ve read, this has been known to clear hpv too.

Don’t worry about passing on HPV to baby, I’m pretty sure it’s not possible.

Smears aren’t always accurate and unfortunately sometimes cell changes can be missed (e.g. if whole cervix wasn’t swabbed etc). This happened to me when it looked like I’d gone from normal or cin 3 in a year. This most likely wasn’t the case, what is more likely is the first smear wasn’t done properly and the changes were missed.

Doctors say CIN 3 can take years to develop to cancer so try not to think the worse. I’ve had CIN 3 for my whole pregnancy and doctors were happy to leave it and ‘keep and eye’.

Wishing you all the best!

Hi Lucky,

Thank you so much for taking the time to reply to my post - it is really appreciated.

Yes, maybe the previous smear was not accurate, which makes me worry even more, as I would’ve had the colposcopy earlier… However, it is what it is.

I am happy that you have managed to be well during your pregnancy, how are you now?

My daughter is not a baby anymore, she is 15 and a half and she had the HPV vaccine already. I hope she will never ever have to get through this. But I think I had the HPV before getting married and having my daughter, it only was discovered in 2013, so that’s why I worry for her.

My HPV story is strange as well.

2013 - HPV positive, clear colposcopy, back to 3 yearly testing
2016- no changes (the result did not mention if I was still HPV positive, just no changes.
2019- no changes (again, the result did not mention anything about HPV)
2022- HPV positive and no changes
2023-HPV positive and high grade dyskaryosis (severe).

I am anxious and I feel for everyone dealing with this virus.
Sending you a big hug, I hope everything is well with you now. xxx

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Hi Ellie, just came across this, i am also in the same position as you and to be honest im spiralling. Ive had hpv positive with no cell changes the last 3 years and this year i have high grade changes and referred for colposcopy. My anxiety is through the roof. I read that you are having colposcopy tomorrow, just want to wish you all the luck, hope it goes well. Please keep us updated

Hi Natty,

I am so sorry for your result, I know how you feel… I didn’t sleep well for the last couple of days and I didn’t eat much either, I am too stressed although I have tried to stay positive and optimistic.
My husband is very supportive and he is very positive, so it is good to have someone to reassure you that everything will be OK and give you a hug. I told my daughter today that I am going for some further investigation as somethings is not quite well with me, but I didn’t tell her anything more than this as she is old enough to read for herself and the last thing I want is her being worried too.
Thank you so much for your message, I really appreciate it.
Will update you tomorrow, I hope.
Take care. Xxx

Good luck today Ellie hope all goes well :sparkling_heart:

Hello lovely ladies,

My appointment today was ok. The doctor and the nurses were the most wonderful people on the planet, very kind and caring - I will always be grateful for having the chance to be treated by such good hearts.
The doctor talked to me about my results since I have tested HVP positive in 2013. She had all my records: clear colposcopy in 2013, negative results for 2016 and 2019 and HPH positive, no changes for 2022. However, she told me that this time I need treatment and that I should not worry because my result does not mean cancer, but she can tell me more when she sees me. She was very kind, calm and reassuring. I then went on the chair, I did not see the screen but I completely trust the doctor. She said she’s found the affected area and that is small. She treated that area and she told me she removed the cells. The nurses talked to me all the time, trying to keep me at ease - they were so incredibly kind, same as the doctor. I had local anesthetic (the entire process was not painful but I am quite ok with the pain, so I can’t say how someone else would feel). All done in less than 30 min. The Dr said she will send me a letter home in a few weeks time and they will also update my GP. She did not mention anything about biopsy and I didn’t think to ask (I was so relieved that she didn’t say I was terrible I’ll, as I convinced myself for the last couple of days). She told me that I will have another smear test in 6 months time and we will see from there. Everything finished in less than 30 minutes. I didn’t ask too many questions.
Came home and took my daughter out, I really wanted to enjoy the weather.
After this experience I learned a lot of lessons. I know this might not be the end, but I decided to think in a positive way. My work was incredible stressful last year and this year so far (until the summer holidays), it nearly killed me. I blame the stress for this entire story and also the lack of taking care of my self, my mind, especially, as I was in a bad place for a while now (I said “I was” because I decided today that this is not the moment, I have a child and I have to fight to be next to her for as long as God will allow me, that was my prayer).
I have decided to work on healthy eating (no sugar, more fruits and vegetables, etc). I bought some supplements today (AHCC, vitamin C, some elderberry syrup with Zinc) and I will take just one day at a time.
I will update you here when I have news and I will reply if anyone asks me a question related to my post. Hopefully I will bring good news. I’ve read so many sad stories here, my heart goes out to all of you.
Thank you so much for thinking of me today, I really appreciate it.
I hope everything will be okay will you and me as well, sending you my best wishes, you are all in my prayers.
PS. I am not in pain and still not bleeding at the moment. Just mild pain occasionally. However, I didn’t need any painkillers so far. I was on my feet nearly the entire day, I am sitting now on my bed, in my comfy pyjamas (I am still on holiday, so I try to make the most of it).
Sending you lots of hugs. Xx

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How are you feeling? Im 8 days post LEEP now and still getting cramps and up until this morning was still wiping charcol, ive just had what looks like a clot and some quite heavy bleeding but not enough to soak a pad in full.
Ive read its all normal unfortunately im hoping you get an easier ride.

Sorry to hear that, I hope you feel better soon. I am day 4 after LEEP. I did not bleed one single drop, I do not have heavy discharges and nothing smelly. Discharges are clear, nearly like my normal ones. I was in a bit of pain just after the surgery, but very mild. I did not take any painkillers and I did not stop doing my daily activities (no heavy lifting or sports, though) . No pain or other issues. All I know is that the Dr said there is a small area of abnormal cells, so I can only hope that this was not as bad as the smear result, but I will only find out when I will receive the letter… In the meantime, I try to stay mainly optimistic, I started taking some supplements and I enjoy the last days of holiday. Going back to work will be tough!
Sending you a big, big hug. xxx

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How you getting on post Leep?

Hello,

Sorry I didn’t write lately, but I don’t have much to say. I am back to work and life is very busy, work stressful…
I feel well, I didn’t bleed after my operation, as I said earlier. I had my period as usual, 9 days after my LEEP (this was the actual date for my period, so I don’t think it was related to the operation…) I have heavy periods usually, but this one was ok. Not very heavy and not very painful. Normal, I would say. This is my 7th day (usually my periods are about 7 days) and I have only some brow discharge (very little). I don’t know how much of this is to do with my normal period or with my LEEP, but it feels like my normal staff.
I didn’t receive my letter yet, so I don’t know the actual grading (I do hope for less that CIN3, but I don’t know…).
I will update you when I receive the letter.
How do you feel now? Did the bleeding stop?

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Hi, I am same situation with u, I got colscopy and have been told high grade CIN (didn’t tell me 1,2 or 3), and I did LEEP yesterday in Chichester hospital, now need to wait for the result to know that I need further treatment.

I am 44 and my daughter just 13, I am so worry that that high grade CIN is worse than I imagine.

Besides, I leave hospital and stay at home now with painful stomach, waiting for the hospital contact me, so depressed.

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Good evening, everyone. Sorry I didn’t write for such a long time but I did not have news. The letter from the hospital arrived about a month ago and said that they did not find any abnormal cells (no CIN) and that they will let me know what’s next. I have received today a second letter. It says that I will need to go to hospital again in a month time, for them to have a look and see if there are any changes to the skin in my vagina, to ensure there are no abnormalities away from the cervix. Then I will have another smear test in February, in hospital rather than with my GP.
It sounds worrying, but I will try to stay as positive as possible and think that everything will be fine. Waiting now…

Hi @queeniechan2004. How are you feeling? Do you have news?