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Low Grade CIN chat / advice?

(18 Posts)
cincity Wed 24-Nov-10 11:14:56

So... In October I had an abnormal PAP smear, indicating Low Grade CIN. I just followed this up with a specialist gyny appointment for colcoscopy and HPV testing. The results confirmed that it is Low Grade CIN associated with inflammation of the cervix - in fact it seems there is infection in that area and I've been prescribed an anti-bacterial gel to clear this. From the HPV testing, it seems two of my three strains are high risk. I've been advised to get the gardisil vaccine to help produce anti-bodies to fight this.

My gyny is great and I think we've got the science covered, but I'd love to chat to others who've experienced / are experiencing this and share info, specifically about;

1. I'm a bit woo (and my gyny definitely isn't), so was wondering whether anyone could recommend any additional supplements that might help my body fight the infection and inflammation in the cervix? Or more generally? Am happy to take extract of bilberry of eye of newt if others have found it helpful.

2. I do find the idea of high risk strains a bit worrying... Does anyone have experience of diagnosis of L-CIN with high risk HPV? Preferrably positive stories (!) or advice on helpful things I Can Do.

3. Pregnancy... Was hoping to start TTC early next year. Am happy to wait 4 months and see what happens in next PAP smear, but if that doesn't come back clear should I just keep waiting until it does? Anyone have experience of CIN and TTC??

(oh have namechanged, btw, don't want to feel restricted in discussing details because of people I know here in RL here...)

BelaLugosiinStripes Wed 24-Nov-10 22:48:19

1) colposcopists usually advise to quit smoking if you do
2) See the NHS CSP website for further information about HPV. Link to HPV testing leaflet

Essentially most women have had HPV at some point, most clear it pretty quickly. Some women it hangs around longer and causes low grade changes. This doesn't mean that you will definitely develop high grade CIN in the future but close monitoring is advised.

3) ask your gynae. Lots of people on here who've been treated for CIN and had children subsquently. Do an advanced search on LLETZ.

Did you have the opportunity to ask the specialist gynae any of this?

cincity Thu 25-Nov-10 09:48:14

Hi Bela,

Yes, as I said, I am happy with the medical support I've had, just looking for personal experiences and an opportunity for chat and support with others with the same diagnosis.

louise90 Thu 25-Nov-10 12:00:24

hi i had a smear test whoich came back borderline changes 6 months ago and was told they would do another one in 6 months but 5 months later i hadd bleedin after intercourse so she done my smear earlier she said she ssaw an erosion on my cervix and that could of been causin me to bleed i also have some bleeding in between smear came back abnormal again and now have to go for a colcoscopy. has anyone had this im not sure if my erosion would be coming up abnormal on my paps?

cincity Thu 25-Nov-10 15:44:20

Hi Louise, I'm not a doctor and I don't want to try and diagnose you, but also didn't want to leave you unanswered. From my understanding yes, the erosion (or possibly lesion?) on your cervix would be what causing your pap results to come back as abnormal. The colcoscopy is, I think, a way to examine your cervix more closely and get a better understanding of what is going on. Does that help? I wrote a list of questions to take to my colcoscopy appointment so I understood exactly what was going on, maybe that would be helpful for you too?

rabbitstew Thu 25-Nov-10 20:13:36

Hi, cincity. I've had low grade CIN and confirmation of high risk HPV in the past (back in the days when you were just told: high risk, medium risk or low risk, rather than which specific strains). One of the high risk strains is a slightly greater risk than the other for development of endocervical abnormalities (most cervical cancers start on the ecto-cervix and these are the easiest to detect on the smear test). I can't remember which out of types 16 or 18 is the the one that may cause endocervical abnormalities. I have considered being retested in the past, to find out which strain (if I still have it) of HPV I have, as I would be slightly more concerned about the type that can cause the rarer abnormalities and cancers, because these are less easily picked up through smear tests. However, they are also more rare... I'm VERY interested to know you were advised to take the vaccine, as when I thought about that, my research indicated that this was not recommended, because it was more or less thought it was too late by the time you've already got the virus for the vaccine to protect you. No harm in having a go, anyway, provided it isn't considered a possibility it can actually increase your risk of getting further developments in the abnormality! Your expert clearly doesn't think so, so that's nice to know.

Anyway, after CIN1, I had several normal smears. Then I got pregnant and had a baby. Another normal smear. Then pregnant again. Then CIN3 after birth of baby no 2 and a bit of a panic on my part. This was successfully treated and I haven't had any abnormalities since, nor have I ever had a repeat HPV test (still considering whether to pay to have one done privately, but a little bit scared incase it does still come back positive rather than negative, so for the time being just sticking with smears and wishing I could get an HPV test as part of the NHS package so that the decision could be taken out of my hands).

I hope this answers all your questions!!!!!!!

rabbitstew Thu 25-Nov-10 20:15:10

ps I should imagine all types of HPV can cause ecto- or endo- cervical abnormalities, it's just that some are more connected to particular things happening than others.

BelaLugosiinStripes Thu 25-Nov-10 21:44:50

An 'erosion' is also known as an ectropian or ectropion and is a normal physiological process. It's where the outer cervical skin or epithelium meets the endocervical canal. The epithelium here is quite thin with lots of blood vessels close to the surface.
This means it looks 'eroded' but actually isn't.
It does however bleed easily, get infected and inflammed easily.
This is also the area most likely to develop an abnormality, as its HPV can get in far easier. The cervical cells are very active as well because the body develops so much - this level of activity can be difficult to read in the lab and get called borderline changes.

Rabbitstew - there's some evidence that type 18 is more associated with endocervical abnormality, but testing for this is not being advocated for general use.
HPV testing can be useful in certain circumstances but for many women, it may not aid their management, as if their cervix looks normal but they have a positive HPV test, it doesn't mean for certain that there is an abnormality.

cincity Fri 26-Nov-10 09:25:50

Hi Rabbit, thanks so much - exactly the kind of thing I was looking for... I have managed to pick up 2 rarer high risk strains (39 and 52), so am not sure whether they have endo- or ecto- links and don't have time for too much googling right now (or frankly the energy to obsess any more about what I might find...). I hadn't heard that certain genotypes were more strongly associated with different regions (tho of course this makes sense).

Re: the vaccine, my gyny (and he's a Prof. specialising in HPV / cervical cancer research, so I have to assume he knows what he's talking about!) "strongly advised" me to get the vaccine. As I understood it, the vaccine is comprised of type 16 and 18 genotypes (i.e. the common high risk ones) but he felt that stimulating my immune system to produce antibodies against these would also strengthen it against my rarer strains. I'm not sure whether if you already have 16 or 18 vaccination with more would help (tho I suspect not..?)

I'm not living in the UK at present and sadly doubt that my medical insurance will cover the vaccine, so need to juggle my finances to cover. (Or try to get it on the NHS on a UK trip...)

rabbitstew Fri 26-Nov-10 09:56:49

I think you'll be out of luck there - I suspect the vaccine is only offered on the NHS to 12 year old girls!

Thanks very much for the useful info., cincity, and belalugos whose last bit of the name keeps changing!!!!

rabbitstew Fri 26-Nov-10 09:58:59

Interesting the strains you've picked up! They do say that different strains are slightly more common in different parts of the world! (I'm sure I read the more common high risk ones in Latin America are not the same as the 16 and 18 types over here).

rabbitstew Fri 26-Nov-10 10:03:33

ps I wonder if the theory that we can boost our immune system against HPV we already have if we immunise ourselves against types we don't have yet will ever stretch to suggesting that if you are going to get one type of HPV, it's better to find as many men as possible to infect yourself with more and more types!... (Would make sense in my biased opinion, since I have never been promiscuous, just incredibly unlucky!). (Sorry, that's just my malicious humour making light of scientific research).

rabbitstew Fri 26-Nov-10 10:05:41

pps bela - I do understand that HPV testing in the context I want it does not help diagnostics. I think it just has a role in either increasing or decreasing anxiety - problem is, you don't know which it will do until it's too late, so not a good way to spend NHS money!

rabbitstew Fri 26-Nov-10 12:14:46

ppps (there are a few questions in here that Bela may be able to answer, so please read!!!) managing my mild anxiety about potentially getting cervical cancer one day (which I get approximately once a year when I have a repeat smear, increased by the thought I might have an abnormality that is missed...), I wonder whether, if I knew I had the type 18 strain, I would control my anxiety about this (since I can afford to) by maybe paying for a colposcopy from time to time, to enable a slightly closer look at my cervix than that offered by a smear (in the hope that might be marginally better at picking up endocervical changes). If I knew I had the strain that was unlikely to cause endocervical changes, then I might consider that a waste of money and therefore stick with the NHS level of care and rely on an abnormal result being picked up in time. And if it turned out I no longer had HPV (is this possible after having had extreme changes?), then I would be able to relax altogether! (I trust my husband...).

So, I guess the question is, could this approach decrease my current intermittent anxiety generally, or just keep it at the same level because the bad news is being dealt with by a sense of positive action?

Of course, an alternative approach is just to have a private colposcopy from time to time - but then that is focusing on the thing I am worried about and leading me to believe that there is definitely cause for concern when maybe there isn't, so potentially making the anxiety worse!!!!!

Anyway, another question to Bela is: would a colposcopy be a better diagnostic tool for me in terms of being more likely to pick up abnormalities, or could it increase the risk they find "abnormalities" that aren't abnormalities, resulting in me currently barking up entirely the wrong tree, anyway? Surely a smear at the same time as a colposcopy is better than a smear without colposcopy?????

BelaLugosiinStripes Fri 26-Nov-10 12:43:25

Hullo again rabbit

Briefly about HPV and vaccination:
There are different families of HPV, it's like a branching tree. The vaccine used in the UK has cross-reactivity to types other than 16 and 18 because there are some common structures between them.

I will come back later with my thoughts on the other part of your question, as its a bit complicated!

BelaLugosiinStripes Tue 30-Nov-10 20:59:25

Hi rabbit,
I think your question is really interesting and the dilemma you're facing is why the people working in cervical screening are very uncertain as to how commonly HPV testing should be used and in what scenarios.
Its a mixture of psychological and philosophy - and possibly not that dissimilar from people considering genetic screening - and they have counselling before going ahead. If you are seeing a colposcopist then it could be a good idea to discuss it.

What the screening programme may bring in the future is "test of cure" - someone testing negative for HPV post-treatment would go back to having routine recall. We're waiting on study findings to see whether it will go across the programme.

Colposcopy is a good diagnostic tool but it also has it's limitations as well; you're correct that it's generally thought that there is greater strength of combined cytology and colposcopy.

rabbitstew Wed 01-Dec-10 12:51:30

Thanks, Bela. I might pay for a colposcopy in a year or two, then, to have whilst I have a smear. Just to reassure me that they probably really are correct that no abnormalities have returned in the last 4 or 5 years since my treatment! I like the thought of someone using a microscope for a better look!!!!!

cincity Wed 01-Dec-10 14:58:16

Rabbit, I had to fork out for colcoscopy and HPV genotyping - and I think I'm glad I did both. The latter was something I considered a few years ago, but it seems Drs also fall down the different sides of opinion you mention, as one advised me to do it so I was informed, another said why bother as it doesn't change treatment, would just make you worry more.

Whilst I'm a bit gutted to know I'm high risk (and 2 of them!) I think it will help make me be better disciplined about having regular smears. Was also reassuring to get a colcoscopy from someone who clearly knew what they were talking about and who could answer my questions. I have already booked my 6 month smear and would definitely add more colcoscopy to that at some point in the future for peace of mind, depending on how results turn out...

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