Hi, looking for some support or advice from anyone who can relate or has been through something similar.
long story short I had my first smear in March (I’m 25) which came back HPV low grade changes. Colposcopy was done they said looked very mild so thought nothing of it. Was told not to worry. Came back CIN3. Was told to wait 6 months for repeat colposcopy to see if it regresses. Got 2nd opinion privately he agreed with the approach given my age and risk of pregnancy complications (he said 10% increase in risk of late miscarriage or prem birth rising to 20% if repeat treatment needed) . Was told not to worry. I really want nothing more than to have children in the next couple of years and the thought of this being potentially affected or causing me anxiety throughout pregnancy is heartbreaking. Im so scared the results could come back after the lletz as even worse and actual cervical cancer and worried what that would mean for my health & fertility. I am a wreck.
Monday I got a call from NHS colposcopy clinic bookings team saying to come in for treatment - no other info as to why. I said I was advised to wait. I have done a lot of research and the treatment doesn’t sound pleasant, and given the side effects relating to pregnancy, fertility, loss of sexual sensation etc (I’ve seen a few stories about people even having permanent mood & creativity changes if the nerves are severed) every single time I think about having the treatment and the thought of the big chunk of me being removed I break down into tears.
I was hoping to avoid it if I can and attempt to live healthy in the hope of regression in 6 months. I am at a complete loss feel totally ill informed. Essentially impossible to speak to a doctor or nurse at NHS colposcopy clinic. I have another appointment on the phone with my private doc next week. The letter the NHS have finally sent re treatment said to refer to the enclosed leaflet which they failed to include in the envelope! It feels like a joke.
to make matters worse I’ve got 2 groin lumps which I noticed around 2 years ago which never went. Saw GP was told probably from shaving (even though they’re really deep and movable like glands) so now convinced myself it’s not CIN3 it’s cervical cancer that’s spread to my lymph nodes. I haven’t even been sexually active for 10 years so not sure how it’s got so severe so soon. And I did have the HPV vaccine age 13. Basically losing my mind any advice would be really appreciated. This is my 2nd cancer health scare in less than a year the other was a bad bowel polyp which again I’m super young to have so I’m starting to fear there’s something wrong with my body and things like this will just keep on happening.
Hi @S257
I can relate so much to alot of what you have posted with some differences and it really is a nightmare for any of us to go through, it helps alot when you know your not alone in this 
Im 29 and had the vaccine when it first got rolled out in 08 so i know what its like to be cheated in that aspect! Lol the best advise would be to try and stay away from DR Google he is not your friend when it comes to health he does more harm than good lol it sounds like hes been giving you some misinformation too, CIN3 can and has been known to regress on its own without treatment they just like to treat it as it can be a true precurser… its really important to remember that not all HPV postives develop CC and its even more important to remember that not all CIN3 cases will either, a little insight into my rollercoaster lol like you around 2 years i noticed some lumps in my groin, one after the other untill i could feel 5 i had an ultrasound but they looked normal then i had my second smear due in jul20 which came back hpv positive 16 borderline changes, the biopsy at colposcopy came back cin1 so i was advised to have another smear 12 months later, in this time my periods went haywire intramenstrual/heavy bleeding wasnt the word lol (tbh they still arnt right) now in my mind everything is related and this is it lol fast forward to nov21 smear hpv positive low grade dyskaryosis however my biopsy 5 jan22 showed CIN3 massive kick in the teeth lol i had to wait untill my biopsy results came back before treatment was offered, i tried to have it done with local but i was too distressed so i had to be booked again under general this time i wish id just chose that in the first place tbh i found the experience much better being put to sleep lol (this is something you can chose btw not sure if you know) so with the faff on the treatment itself wasnt untill 24th march nearly 4 months after the biopsy which came back still CIN3… like you i was terrified of the future side effects, i do have a little girl but i would like to have more in the future, i was told by my gynealogist that generally with the first lletz although they have to give you the percantages of miscarriage/prematutre births its more if you need a second or third that they are more worried about that but if you go ahead with a lletz treatment any future pregnancy would be closely monitored during the pregnancy you would generally just inform the midwife youve had a lletz before, any wishes or concerns you have they have to take them into consideration when it comes to treatment
There could be a number of reasons why you have the lumps but by the sounds of it it really doesnt have anything to do with your biopsy results lymph node involvement is when CC spreads and you definitely don’t have CC …they usually only worry about lymph nodes when they of certain size, hard and fixated and if they get bigger over time, mine looked normal to them so no biopsy was taken and they havnt got bigger, there wasnt a link between the 2 despite how much i and DR google had convinced me lol which is very likely to be the case with you too , when it comes to research i would stick with this website/forum its one of the more accurate sources and it me helped alot when i struggled
This page gives you an idea of how likely things are to progress regress or stay the same https://www.jostrust.org.uk/information/abnormal-cells/about-cell-change, could bring you some peace of mind
Hope this helps xx
Hello, I am also 25 years old, and had the HPV vaccine at high school. I was found to have high grade changes in my smear. I went to my colposcopy and had biopsys, she sat me down at the start and said she would only have a look that day and take biopsys because of my age she didn’t want to do treatment if she didn’t have to.
After having a look she said I would most likely need treatment and my biopsy confirmed CIN 3. I have just had my LLETZ today.
There are percentages on this site https://www.jostrust.org.uk/information/abnormal-cells/about-cell-change that there is a 32-47% chance it would regress and a 32-40% chance it would progress. For me I didn’t want to take any chances and decided to have the treatment and I didn’t think they even monitored for CIN 3.
For me possible side effects around pregnancy were not worth the risk of cancer.
With the lumps as with all lumps you find definitely get them checked out by the doctor.
