Hi HEH0
Oh bless you. No it’s not daft at all, I would be exactly the same! I hope everything goes ok next week and it’s not too awful for you. Will be thinking of you.
I’m a stresshead too so I’m not expecting to clear this either =(
I do hope your doctor looks into things for you though and rules out other things if you’re having other symptoms and your coil was painful. I do feel like women’s health care is somewhat lacking and GPs just don’t have the knowledge or care to help us.
Xx
Hi Beki
Thanks for messaging.
Oh really! I had been thinking the vaccines had been a waste of time but if it stops the worst strains then that’s a glimmer of hope to hang on to. Have they said what they will do about it going forwards for you?
You’re very brave. I can’t even cope with knowing I’ve had it for 4 months let alone 3 years! How have you dealt with it?
I hate that online it’s stated as an STI. It just makes it have a stigma and brings shame and embarrassment and makes it difficult to discuss.
Xx
HEH0
If you do manage to find anything out about what strains they test for and what the vaccines are supposed to cover, that would be really useful to know please. Xx
Hi Kimberegg
Thanks so much for your kind words.
It’s awful isn’t it. The mental impact and strain on you about what happens next is absolutely horrid.
Have they given you any ideas about what happens next or is it just a case of testing again in a year’s time?
Xx
Hi Elizabeth
That’s a good idea. I think someone else has suggested it too so I will explore that option.
My doctor has been so rubbish! I don’t mean to sound sexist but I’ve found that with this and also everything throughout my pregnancy, male doctors just do not seem to understand or have any empathy for women’s issues unfortunately.
Xx
Hi Peachy
I haven’t seen a gyno…just my ordinary GP.
Are you in the US?
Yes, I’m super grateful there’s no cell changes, but I do feel like I’ve got a time bomb inside me now just counting down my time until it becomes cancer or abnormal cells. I’m hoping my body will clear it but so many women seem to have it lingering on for years and years, or it suddenly comes back.
So sorry to hear you’ve had to have treatment 3 times. Had they got your results wrong if you went from cin3 to nothing and then to cin1 again? Or did they treat it and it came back again?
Omg, I just googled what a stitch is and it’s horrific! There’s no way I could have that done unfortunately. Looks like maybe my little baby boy will have to be an only child 
Xx
Hi Roses
I know it’s really difficult at the moment as it’s so fresh, but having HPV does not destroy your life. In fact, knowing about it can save your life.
I had three smears, HPV positive, no abnormal cells. The colposcopy was fine, I don’t feel embarrassed, as those staff are looking at cervixes all day long. All they care about is making sure you’re ok. The thing is, the Colposcopist took three biopsies (which yes, were uncomfortable but it isn’t that bad), and said she’d be happy to discharge me there and then, that it simply looked “viral”, but she’d write to me in four weeks with the results. Exactly four weeks later, post arrives saying I have CIN2 and need cold coagulation. I’m having that Thursday next week, but haven’t found a lot of info on it, just that they burn the cells off. I’ll let you know how I get on. But the point to this is, imagine what could’ve happened if they did not test for HPV? They would’ve sent me a smear three (now five in Wales) years later and my CIN2 could’ve been worse. What if they still hadn’t picked up my abnormal cells then? So being tested for HPV has been a blessing. Yes, it’s shit to be told you have it, but nearly everyone has it, it’s almost impossible to avoid. I’d rather know and keep on top of having my smears, than not know and remain blissfully ignorant until it’s too late.
I’m not sure why the smears didn’t detect CIN2, I will ask. But perhaps the abnormality wasn’t in an easy to reach area, maybe deeper in my cervix so the smear didn’t pick it up? Also, I don’t believe having treatment will affect my chances for having children should I wish to have any more (I have one who is 12), so it won’t negatively affect my future. In fact, treatment positively affects my future, as it gets rid of my dodgy cells!
Like I said, I know it’s really difficult at the moment… mentally, it can be a difficult thing to process. But it should not destroy your life. This knowledge can save your life.
HEH0
just saw your message re pregnancy.
They don’t test for it during pregnancy. I only found out from my smear after my pregnancy. They don’t even test you for strepB when you’re pregnant which can be fatal to baby. So awful considering it’s easily avoidable if the mother has antibiotics in labour.
They don’t really test for anything really from my experience, except the usual iron levels, thyroid, blood count etc.
Xx
Hi Roses92
It does seem that the worst thing about HPV primary screening is the amount of anxiety it causes and I’m so sorry you are having such a difficult time at the moment. The cervical screening programme is highly effective in preventing cervical cancer, even more so now because of HPV primary screening which will mean you be more closely monitored.
To give a bit of perspective, in the UK invasive cervical cancer which requires a lot of treatment is rare - about 3200 women a year which is a tiny percentage of the 20+ millon adult women in the UK. About 27,000 women a year will be diagnosed with a non-invasive ‘cancer in situ’ which is usually cured with relatively minor treatment in an out-patient clinic.
It might not feel like it at the moment but really it is better to know if you have HPV than not. Knowledge is power and better than blissful ignorance.
x
Hi Jazza
Thanks for that info. It does make it seem like a small possibility of getting CC when you put it like that.
Do you have any stats on how many women have to go for treatment each year? Would be good to know how often hpv causes the abnormal cell changes.
It’s awful how much anxiety it causes and how little support there is and how little info they give you about it.
Everything I’ve read about the treatments sounds awful and so many women say it’s really painful, that the hospital don’t offer much pain relief or anything to help with anxiety or embarrassment. There’s just no way I could have anything done. I had an awful experience when I was pregnant and had to have a CVS test done because my baby was screened as high risk of down syndrome (thankfully it was a false alarm) but the procedure has left me with crippling PTSD and a fear of doctors and hospitals because of what they did to me… I basically decided once I saw the needle that I didn’t want it done and told them to stop but the guy carried on and did it anyways. The nurse even held my legs down at one point because I was trying to get up…I know it was probably for my own good because I had a big needle stuck through my tummy at the time, but still. It was horrific and has made me not trust any doctors, especially when it comes to gynae and other sensitive issues
Xx
Hi Roses92
Sorry, I don’t have the stats for the number of women who go for treatment other than what I’ve given above.
Remember when you’re reading about treatments for cervical abnormalities that it’s mainly women who’ve had an unpleasant experience who are motivated to tell their story. There are many more whose treatment goes smoothly and they don’t feel the need to talk about it.
I’m sorry you have had such a traumatising experience during your pregnancy. Have you considered asking for counselling to help deal with your health anxieties/PTSD? One thing to consider is in future ask to discuss your fears prior to consenting to any treatments.
x
I’m a bit of a geek when it comes to statistics I feel more in control when I have data to analyse and I was reading this from the office for national statistics.
https://digital.nhs.uk/data-and-information/publications/statistical/cervical-screening-annual/england—2019-20/cervical-cytology
Hi Roses,
I just want to add that last month I took my neighbour for her LLETZ for CIN2. She had a male gynaecologist, who was absolutely lovely and she said the experience was painless, and the staff made her feel comfortable. She is nearly 60 and has a massive intolerance to pain. I think people are more likely to report horrible experiences rather than better ones.
I’m not sure whether they test for HPV in pregnancy. Maybe if there’s a history they might.
Hi Roses92,
I’m in the UK, it was the gyno at the hospital when I had the colposcopy, biopsy and then lletz.
She did my first 2 procedures 7 or 8 years ago too, so felt comfortable asking her all my queries, eg whether it would put me at a higher risk of getting cervical cancer, she said no, that’s why they do the treatments and smears to try and catch it.
I’m not sure whether it cleared up the first time, or just lay dormant for my second, I also have a new partner this time as my husband passed away 4.5 years ago, so could potentially be too do with this.
I haven’t researched the stitch and we’re currently TTC, ignorance is bliss!! But my gyno said it’s a pretty standard thing they do quite regularly. Xx
Hi Emmal87,
Your comments re pregnancy- it depends how much of the cervix they have to remove during the lletz, it can significantly weaken it, but the gyno that does/did the procedure will be able to advise how much they’ve taken and whether it could cause problems.
Hi Peachy
I’m not having LLETZ, I’m having cold coagulation, so they don’t actually remove any of the cervix, just burn the abnormal cells.
Hi I’m so sorry to hear that hpv has impacted you similarly to me. I had a hpv and abnormal cells smear in April 2021 followed by a coloscopy after an anxious 12 week wait and another 4 weeks for the results. I am aware this can take over your life as it certainly did for me. I try to do proactive things so I know I’m doing all I can to “cure myself”. I took a hpv test with superdrug to see what strain I had although they could only say it’s not 16 or 18. I also take immune boosting vitamins and ahcc tablets. I have now also had the hpv vaccine. I dont know whether any of this will help but for me I felt there is some peace of mind in feeling like you’ve done all you can. Wishing you all the best x
Hi Roses,
I too have PTSD, and I had to have a colposcopy last year, followed by a lletz loop procedure. I wrote a brief note before my appointment, explaining that I have PTSD, what my specific worries were, and what they could do to help, and gave it to the nurse specialist when I got there. She was brilliant with me - kept reassuring me that I was coping really well, offered to explain each action before taking it or to talk about other things to distract me, whichever was likely to be most helpful. I definitely think writing the note beforehand helped a lot with the colposcopy, not least because I felt like I was doing something proactive to help myself cope, rather than surrendering it all to the staff, if that makes sense.
For the lletz, I decided to ask for a general anaesthetic, as even with a supportive nurse I’d found it very difficult to relax enough, and having had general anaesthesia in the past it felt like more of a “known quantity” for me. I anticipated having to fight my corner to get this, but the nurse on the phone just immediately booked me in! Again, I took a note in with me, and the staff were all really good with me, especially the anaesthetist, who took the time to come with me into the recovery room and be with me when I came round, which I really appreciated.
I hope some of this might help and reassure you, that you CAN deal with whatever you need to, despite PTSD. I also highly recommend looking at www.ptsduk.org as they have lots of helpful info on PTSD, including things that may be helpful for your friends and family to read, in order to be able to support you.
Hi there. Look into taking the AHCC supplement. I’m taking it. It’s been proven to clear up HPV. It’s a blend of mushrooms. Can’t hurt to try! Also look at ways of boosting your immune system. Drink fruit+veg smoothies, take herbal supplements (tumeric, vit d etc) drink green tea. Google it there’s lots of advice. Many have this. You want to strengthen your immunity so it doesn:t turn into something worse, and help your body fight it.
We all get discouraged when we find out we have this but don’t let it take you down. Take action, be proactive. Don’t jump to conclusions. If your partner had sex before he was with you and you didn’t that’s all it takes. Didn’t mean he cheated. you could have had this for some time not knowing it.
Hope that helps a bit… You’re not alone as you can see… And it could be way worse!
