I had my 6month test of cure follow up smear at the colposcopy unit last week. I had lletz under GA in July, and it came back with high grade CGIN with clear margins. I’ve not had the full results but I was CCd into a letter from the colposcopy unit to my Dr about the appointment. And it said that “colposcopy showed HPV changes on posterior lip”.
So I’ve worked out that due to where it is it’s not CGIN as it’s not in the right place for my understanding. So I had CGIN removed with clear margins 6 months ago, and in that time I now have a type of CIN.
But I don’t know what the next steps are, and the letter said that they’d have to wait until the results of my smear before deciding what to do. But my last results look near 6 weeks to come so I’m going a little crazy, as it’s only been 1 week so far. I have some anxiety around gynaecology issues as I also have endometriosis, and anything with a speculum usually hurts/makes me have a panic attack or makes me want to pass out, and some things trigger an endo flare like having the lletz.
Has anyone else been in this position or know what’s next? I tried calling the hospital when I got the letter but still waiting for a call back. I can’t seem to find anyone else who’s written on this forum about it. All the info around second lletz etc is from unclear margins or when there are years between them.
Hello sorry you find yourself here, but I believe what your results ar saying are HPV changes this could be just low grade or borderline and maybe they will just give you the waiting and see option to see if it clears on it’s own and retest again in 6 months or 1 year, or if they believe it needs treatment you will just have a 2 Lletz but is not a terrible result don’t panic you definitely caught it on time so it won’t turn into something worse. Stay positive.
Don’t panic, hopefully it will just be low grade changes. I know it is easier said than done and you can’t help wishing they found nothing at all and that the dreaded HPV was rid! I have my 6 months TOC on March 1st after two LLETZ to remove CGIN. On the second LLETZ it came back as no CGIN in the sample but they confirmed active HPV and cell changes. It didn’t change my next appointment so possibly it is just low grade changes for you that won’t require immediate further treatment, if any at all. I am dreading my TOC now. Hope the wait isn’t too long! Let us know how you get on. Sending lots of positivity. X
Thanks to both of you. I wasn’t expecting to get half a result, which didn’t help as if I was the full result I’d know that I’d shortly be getting a call, or appointment to discuss next steps. But I’m instead in this weird limbo where I know something has been found, but not what and I think that’s worse than not knowing anything at all until the result is actually back.
Yes I’ll be sure to update this thread once I have more information and an update, on what was found and the next steps. And let me know how you get on at your TOC.
I guess silver lining is, it’s better they pick up this stuff early. But was definitely hoping it would all come back negative so it could be over and done with.
Update. I called colposcopy unit today to ask if they can give me an eta on when the results will be back. They said they’ve had the result back today, but she couldn’t give them to me over the phone. But her colleague who is it of the office today can, so I’ll get a call tomorrow with the results of the smear and hopefully they’ll let me know the next steps then too.
So I had the call back from the colposcopy unit. My smear can back HPV negative. So they don’t want to see me back at colposcopy unit in 12 months for my next test of cure smear.
I said I was concerned (okay so I cried and said it didn’t make sense) given the letter said HPV changes were seen. She looked at the photos whilst on the phone and she said that while there is an area that looks a little paler (guessing the photo was after some solutions had been put on). She doesn’t think it’s of concern, and thinks it’s likely new skin growth, that’s still coming in after the lletz, given that the smear has come back HPV negative.
She said I can call her back at anytime, if I want to discuss or think of more questions. I’m honestly just confused, why write a letter that says “showed HPV changes” if there are other things that could caused the visual difference.
Right now I’m not convinced on this plan, as I don’t know which to believe right now, the visual report or the smear. As I know false negatives happen on smears. And the visual is someones interpretation of what they are seeing.
We’re Not In The Same Boat, But I Did A Smear Which Came Back HPV+ & Low Grade Dyskaryosis…Had A Colposcopy & No Changes Were Seen…So Im Due To Go Back To Have A Repeat Smear In 12 Months…I Hope You Find Some Closure.
@Letsdothis HPV Negative, that is fantastic news! Whilst you are right to be cautious as it is your health, I think the odds are in your favour that it is more likely that somebody visually misdiagnosed the changes then a false negative HPV smear. Perhaps if you are really anxious you could see if they would be happy to test you in 6 months. I know after periods of such uncertainty it is hard to get over invested in something you fear might change, but try to see the light in this result. So happy for you and hopefully you’ve kicked it.
Hello, no they didn’t do any biopsies when doing the smear, potentially because I was really struggling painwise with just getting the smear done.
So to help settle my mind, as I felt uneasy about having conflicting results from the letter and the smear test, I paid for a HPV test from superdrug. It also came back HPV negative for the 2 that the NHS check for, so I feel much better about waiting until next year for my next smear test.
Hopefully this is the same result you had my friend will have.
Any idea why the saw low grade changes on your smear then none on your colposcopy.
As yhis can be frightening for the letter to say low grade then none on the colposcopy which is great news but frightening when u gwt the letter back to say u been reffered
X
