Need some explaining

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Hi all,

I've been doing some reading online about LS - bad idea as I always work myself into a frenzy after. I'm wondering if any of you could explain this to me and maybe put my fears aside. I've read that there's a slight risk of cancer with LS but what about VIN? I read that a risk factor of VIN is LS. If you treat the LS and have it well managed does that lessen the risk of developing VIN or does it just stop it progressing to full blown cancer? Sorry I hope the question made sense!

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15 Replies

  • Posted

    Hi Jules...I am feeling pretty dumb, because I don't know what VIN is....now I have to wonder if I have it??  cheesygrin  would  you please explain VIN so I will know if I have to worry???  Thanks............
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  • Posted

    I am not medical so this is just my understanding of it. LS damages or changes the cells in the skin so we are more at risk of these cell changes turning into something a little more nasty for example when you go for a smear they may see cell changes so they decide to watch you or treat you I look at it like that but they can never tell you if those cells would have turned to cancer. All we can do is watch out for changes down there that's why a mirror and a light to look at least once a week is good. It scares me too and I also wish there was a clear test to put our minds at rest. hope this helps any others lady's out there with more medical knowledge and understanding of why we are more at risk please tell us so we can understand
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  • Posted

    VIN is bad cells, not cancer yet. We really don't have to worry about any of this as long as we treat our LS, keep an eye on it (we know best what's changing if we look daily with a shaving mirror) and get examined by a specialist (not just a GP) twice a year. Even squamous cell carcinoma is slow-moving and totally curable by surgery. The horror photos online are images of neglect. That said, some of us seem to have a more aggressive version of LS, which needs even more vigilance.

    I have a slower version – for 40 years. I believe two things have contributed to my fairly mild case at present (mildly uncomfortable, not mildly atrophied). 1) many years, on and off, of celibacy; 2) mindfulness-based stress reduction. If you keep having painful sex and keep tearing and scarring and worrying about and fighting with your sex-hungry man as I did during a few 5-years-or-less periods, this I think increases the chance of bad cells thriving.

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  • Posted

    Just keep looking after yourself and treat LS well.  Chances are that the risk will be minimal.  
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  • Posted

    Jules, that is what the specialists keep an eye on it for. The cancer risk is not high especially if monitored. They watch it for you.
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  • Posted

    Thanks for the replies. So good to have a place like this where I can ask questions. The only person who I can ask is my specialist and I don't really want to be contacting him weekly and coming across like a pest lol. And my partner or family don't really know much. So yeah it can feel pretty isolating especially being 22.
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  • Posted

    I wish I had known about VIN when I had an abnormal smear result about 9 years ago. I had another smear test with the same result. After two colposcopies (Cervix biopsy) I was assured that a hysterectomy was not necessary as the cells were only pre-cancerous. I decided to have a hysterectomy anyway so that I wasn't constantly worrying if things were developing where I couldn't see, I just couldn't settle not knowing. At 50 with endometriosis as well I couldn't see any point keeping something that I no longer needed that was causing me so much pain and worry.

    I discovered that what I had infact was the HPV virus which apparently 80% of us have without knowing, anyone who suffers with a coldsore or who has had chickenpox, genital herpes has been infected with it. I also had LS although this was discovered a few years later. I am curious as to how many LS sufferers also have the HPV virus. I was informed that LS and HPV virus can give abnormal smear results too.

    I am now glad I had the hysterectomy as I no longer have to suffer smear tests which with this condition would have been horrendous. I feel for any woman having to go through those with LS...ouch!!!!

    I know this is all a bit personal but unless we are honest I don't know how we are going to help our medical teams find a cure.

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    • Posted

      I agree Christy the more open and honest we are the better for everyone including ourselves, and of course any future sufferers.
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    • Posted

      Hi Chrisy,

      I had the same with the female organs and resulted in hysterectomy. (I was 42 at that time) (too much cancer in the family, so wiser to do so)  HPV virus also causes the singles, which I endured twice.  Way prior I had complaints but didn't know I had LS till fairly recently.  (LS diagnoses was about a year ago.)  Is there a link with HPV virus and LS?  Who's to tell.  Research is scarce.  

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    • Posted

      I didn't know HPV was connected to herpes. I had chicken pox in my teens and a one-time bad outbreak of genital herpes around the time LS symptoms began. Very interesting.

      I agree there's no such thing as Too Much Information on here!

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    • Posted

      Oh, and I had 'bad cells' in my forties, two conizations of my cervix.
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    • Posted

      Hi Chrisy,

      I don't blame you for going through with the hysterectomy. I would have done the same. From what I understand there are two types of VIN. Usual VIN and Differentiated VIN. The usual type is seen more typically in younger women and is associated with the HPV. However the other type is more commonly seen in women with a background of LS.

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    • Posted

      It is amazing that we do not have more information readily available about the causes of abnormal smear results.  It would certainly help when making decisions about out bodies.

      Why do doctors presume to make these decisions for us?

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    • Posted

      Why can't they tell you which type you have?  Thanks for this. slightly clearer now.
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