Link between CIN & VIN diagnoisis

Hi everyone 

 

I have recently been diagnosed with both Lichen sclerosus and VIN 2 abnormal cells. after I was referred to a Gyne-Oncologist  I was told that these conditions are linked to abnormal smears. I was shocked as i had never heard of either.  

In fact I had to contact my surgery to find out what my abnormal smear diagnosis was as no one ever told me it just that it was abnormal and needed treating and was routine. All those years ago I never really thought much of it.  Now i wish i had been so much better informed as my LS was undiagnosed for some years and I have fused lower vulva making penetrative sex almost impossible and increasing my risk of getting VIN. 

Have just had surgery and now worried this is the start of the slippery slope as it seems unlike CIN VIN is a gift that keeps on giving anreturnsrs with a vengeance. 

 

Am i the only one wondering why we don't knowe anything about these conditins, their risks or ll;inks to abnormal smears? why dont they check the vulva at the same time?   I findit all so hard to come to terms with as no one seems to know much about this condition until its too late and you have it.  

 

Anyone else had a similar expereince or be told anything about it?

 

Hi jivegirl,

I know this comment is a few years old but I completely agree with you. Vulval and cervical abnormalities can be linked and I also don't understand why GPs do not connect the two or check both. I am in a situation where I have experienced unexplained vulva itching for over a year (had all the usual tests for things that cause itching all negative). I have had a very quick vulval examination by the GP and been fobbed off with creams and ointments that don't help.

 

A couple of months ago my smear came back with HPV and abnormal cells and that I'd have to come for a routine colposcopy. Me having a science background, read up on loads of research papers and found out the same strains of HPV that can cause CIN (HPV 16 and 18) also causes VIN. So called up my GP before my colposcopy to say all of this and asked if they could also put in a request to do a colposocpy of the vulvar due to my itching and these conditions being linked. They basically said "we're not going to make a formal request but I guess you could get them to have a look at your cervical colposcopy appointent".

 

Fast forward 3 weeks (yesterday), the day of my colposcopy, I told the consultant about my vulval itching and that my GP told me that you could also check the vulva. The consultant was flabbergasted that I had had the itching for over a year and had not been referred to a gynecologist. She also said she couldn't check for VIN as they didnt have the right equipment as that department was only for cervical colposcopies. She very nicely had a look though and after seeing some questionable raised areas of skin  she told me to forget about my GP and that she'd make the referral to the gynecologist and she would let the GP know that she had done so. 

 

It is so dissapointing that I had to make this link myself between my unexplained vulval itching and cervical diagnosis. Also that when I actually told my GP it didn't seem to raise any alarm bells? At least the consultant at the hospital felt it necesarry for me to get my vulva thoroughly checked considering the situation. 

 

I really hope all is well with you and that you're managing the lichen sclerosus as best you can xx

 

Hi

Mine's a long story but it's left me with a strong opinion that women need regular and routine gynaecological check ups with a specialist as opposed to just a 3/5 yearly cervical screening test with a GP based nurse.  For this reason I am backing the petition as per following link: https://www.change.org/p/minister-for-women-and-equality-penny-mordaunt-yearly-gynaecological-check-ups-for-every-woman-in-the-uk-from-adolescence

x

I couldn't agree more in that we should get be getting regular check ups. After having CIN 3 years ago, a couple of dodgy smears since, I was ok up until about 3 years ago. During a routine smear, I asked the nurse to check out a small lump on my vulva. Fast forward and I've since been diagnosed with LS and had 8 high grade lesions removed. I'd never heard of LS or vulval cancer! When my first lesions were excised my consultant said I needed 6 monthly check ups. I fell out with my then doctor as she wasn't impressed when I asked for a check up as said it wasn't routine screening!! My consultant has since got me into his clinic albeit out of my area.