Possible VLP & OLP
Posted , 6 users are following.
Hi everyone.
I'm so pleased to find this group. Sorry in advance for TMI. I think I've probably got VLP & OLP. For 3-4 months I've felt a bit of itch/irritation when washing down below, but didn't think much of it, and it seemed to improve. I'm 35 and not currently in a sexual relationship. Anyhow, I had a look with a mirror the other day and found two vulval lesions, one each side. One is very small and just inside labia majora, and on the other side its a bigger area, extending from labia minora outwards towards labia majora. Both lesions are kind of lilac/white colour, and I cant see any erosions. GP didn't seem too worried but suggested gynae assessment, and prescribed betamethasone cream. I'm seeing a gynae next week.
I was worried about VIN but all smears have been clear, and GP said it might be LP. I've now looked in my mouth and can see white lacy patches inside both cheeks, mainly by my back teeth, but again no erosions and it isn't painful. The vulval lesions aren't sore, although with hindsight it does burn if I pee right after having a shower.
The more I read about LP, the more terrified I am! Given the oral lesions, I'm guessing this will be the diagnosis, and I have been going through a period of stress. I am wondering if it's possible to have a mild or non-erosive form of OLP/VLP? From what I can see, no erosions or loss of structures at the moment.
Thanks in advance for any advice or support. Feel so alone and scared!
0 likes, 14 replies
carol48091 Jane2503
Posted
Hi Jane
I've had OLP and VLP for 17 years now. Please don't be so scared. See the Dr and things will start to improve. Xx
Jane2503 carol48091
Posted
Thank you so much Carol for your kind words. I am seeing the gynae tomorrow. May I ask how you are getting on with your OLP/VLP? I am sorry to know you have had to deal with this for so long xx
carol48091 Jane2503
Posted
Hi jane
Over the years I've had a few erosions cut out with biopsy.
Removed from inside my mouth, and last year I had a lip shave to remove a erosion from my lower lip. No scar healed perfectly.
Funnily enough after the biopsy, it's not sore or painful.
It's amazing what the correct cream that your gynocologist prescribes, can achieve. And if there in any doubt they will make a referral to a dermatologist.
Ive learnt, My worst enemy is my own anxiety. If I keep my head in the right space the rest just follows.
I've had 3 other cancers throughout my life, but none linked to l.p..
I just take them one step at a time, but don't let it interest with what I want to do.
Please try to put your care in there hands. Your job really to keep looking for any changes and keep talking to your health professionals.
Good luck for your appointment 🤗
Let me know how it goes xx
Jane2503 carol48091
Posted
Thank you so much for your post Carol. It sounds like you have been through an awful lot and I can't imagine what you've had to cope with. I understand your point about anxiety, and sadly it's an old friend of mine too. At the moment I'm scaring myself silly on Google and so need to distract from that.
I now feel that my mouth is sore, but I don't know if that's psychosomatic. Whatever the gynae says tomorrow, I will try to see the GP this week to have a look at my mouth to figure out whether I need to worry about it. I honestly don't know if it's an erosion or not. I will try to post a picture. I understand no-one can diagnose me here but it is very helpful to hear from people living with this.
I will definitely let you know how it goes, and thank you once again for your support. It means a lot! xx
AB1308 Jane2503
Posted
Hi there,
I've been where you are only last year. I have similar thing in my mouth which is something called Lichenoid which is like Lichen Planus. I saw my dentist who referred me to an Oral / Maxofacial Surgeon. Had to have a biopsy and confirmed it was Lichenoid which is what the surgeon thought. I'd suggest going to a Dentist rather than a GP.
I had awful anxiety over it though but touch wood it only sensitive if I accidently bite it or change my tooth paste. I have a weird angled tooth withh a filling right next to it and debating whether to change it.
I'm concerned I might have Lichen Schlerosus but not sure and not had that diagnosed by a professional. I did have thrush confirmed so hoping it's that.
Please don't worry, like Carol said the anxiety is worst! I'm also 35!
stazstaz carol48091
Posted
Jane2503, wow!!! Great post, great words, and thanks for sharing your experience!!!
Jane2503 AB1308
Posted
Thank you AB for your kind words and your experience. It's interesting that you mentioned toothpaste, as I changed toothpaste about 3 days ago, so will try going back to my original. I did have a new filling in December so I guess it could be a reaction. I've booked to see dentist tomorrow. It's scary isn't it?
I will keep my fingers crossed for you that it's thrush and not lichen sclerosus.
Thank you again for sharing your experience with me xx
AB1308 Jane2503
Posted
There's a chance it could be caused by your filling because mine started not long after I one too. My dentist is reluctant to change my metal one right next to it and its the only one in my mouth. They don't seem to think there is a link but on some sites they do suggest a reaction to fillings. I'd have to pay privately to get it changed which I'm still thinking about.
I've not heard of ViN maybe that's what I've got!
Hope you get yourself sorted soon and try not to worry. (easier said than done!):-)
Jane2503 AB1308
Posted
Thank you, and you too! I will definitely speak to the dentist about fillings as the timescale fits. I very much hope you manage to get yours sorted, and also hope you don't have VIN. All best wishes to you, and please do let me know how you get on with the filling xx
Jane2503
Posted
Just to update on this after seeing gynae yesterday. She thinks the vulval lesions look most like VIN but has told me to use the steroid cream and go back in 2 weeks. If no improvement she will take biopsies, but says some VIN can just disappear. If not, she will refer me to oncology.
I'm not sure what to think. I agree that it doesn't really look like LP/LS (from what I've seen on Google), but the oral lesions made me think LP was the most likely diagnosis.
The waiting game continues xx
Jane2503
Posted
Just an update on this, for anyone who might be going through similar.
I still don't have a diagnosis, but the vulval lesions appear to have resolved with betnovate cream. I've seen two gynaecologists, neither of whom could give me an answer, but today's one told me to stop using the cream and monitor, and said it could have been VIN or something else which has resolved. I still think its VLP, and just hope it won't come back.
My dentist agreed my mouth looks like OLP and I'm waiting to see maxillo-facial team, which has a long waiting list. In the meantime I am using a steroid mouthwash, which isn't helping much, and the lesion seems a bit smaller but maybe deeper. I still don't know if it's an erosion or not, or how long it should take to heal. Meanwhile, the insides of my cheeks, my gums and the top of my tongue are now covered with a white layer, but luckily the skin seems to be intact, apart from that one area.
Seems like a real coincidence that both things should show up at the same time, both with white striae in mucous membranes, if they aren't related. Would be glad of any thoughts. It seems to be so difficult to get answers with this thing.
Jane2503
Posted
Hi everyone.
Just popping back to update this. The vulval lesions came back within a month and I asked the GP to refer to dermatology rather than back to gynae. I saw a specialist GP who'd done training in vulval dermatology and she was easily able to diagnose VLP. I had a month of daily betnovate and am now on maintenance twice a week.
I've also seen maxfax who said it was typical OLP. I had a biopsy taken from inside my cheek to confirm, and am waiting on results. Slightly nervous about that but definitely calmer than I was when I first posted here. Maxfax think it's reticular so I feel fairly lucky on that front.
Anyway, just wanted to update as I was so grateful for the support I received here when I felt really frightened and alone with all this. Thank you x
cheryl45329 Jane2503
Posted
Hi Jane,
I have read your posts with interest as I have had a very similar experience.
Just had an oral biopsy and unfortunately im having a flare up whilst coping with tight stitches etc.
consultant wont prescribe anything til he has results. Im so fed up had it for 6 mths now. I find it so difficult to eat, speak and drink.
VLP was treated with dermovate and has brought some relief.
Please keep posting, it helps to see how other cope.
x
Jane2503 cheryl45329
Posted
Hi Cheryl. I'm sorry you're having such a horrible time with it. When I was desperate, I used Beconase spray in my mouth. It's not licensed or recommended for this, but a pharmacist gave me the hint and I was willing to risk it. Probably better to wait and see what the consultant suggests though, especially as you've just had your biopsy.
My biopsy results were not quite as expected and showed "lichenoid keratosis" and mild dysplasia, which might be due to the OLP or could be a bit more sinister. I'm going back early next year, and trying not to worry about it. I hope your results are ok, or at least as ok as they can be with LP.
Very glad you've had some relief with your VLP and dermovate. I'm still on maintenance betnovate cream but trying to see just how often I need it. Right now, I use it every 5 days, and will slowly try to get it to weekly if I can (on GP advice).
Keep talking, if it helps Xx