Lichen sclerosis vin 3

Hi Janice,

Yes I've had the same effects. I was fine the first 8 weeks - mostly irritation (itching, burning and tingling). But I was using it with Dermol - so my consultant said it may be diluting it! (He could have told me!)
then Ive had to stop twice (in total 4 weeks). First time my vulva ulcerated. And then it completely swelled. Ever since i've had to try and prevent severe reactions - Scabbing, itching, swelling and ulcerations, just by laying in bed for most of the day. (it's tricky with 2 young children - but it really made a difference).

Ice helped to soothe it and washing with cold water rather. And applying Dermol and Epiderm when not using the cream.

I found that these four weeks I can't sleep on cream days. I just lay in bed wide awake. I'm a bit like a zombie, have no energy and just want to stay in bed.

The lack of sleep and pain is really draining too and does make me feel low too and I dread the nights I put the cream. My days were the same as yours - I decided to switch a few weeks a go to Sundays, Tuesdays and Thursdays. That way I have the weekend- some how it doesn't seem such a long week when I do this!

But I keep going hoping it works, but anxious it may not have worked because of the misapplication in the early weeks and missing 4 weeks. But let's see I have my mapping biopsies 29th july so I need to stop this week.

It's nice to have someone else to talk to there are so few of us with it.

Hope this helps

Shars x

Hi Janice, 

It's good to hear that you're healing, but so sorry to hear that you're having to cope with the vin3 and imiquimob. 

I havent used that cream, but I wondered if in order to help with the pain when it gets really bad, would you be permitted to use some of that topical  lidocaine gel that numbs everything? If it helps you cope & persist with the horrible side effects of the cream to get rid of the vin3, maybe worth asking.

Like you I still get teary, worried and even sonetimes frustrated angry tears. In my case after dealing with the cancer its now  the lichen sclerosis thats destroying my genital tissue, most noticeably the cltoris. Im not in pain though, so I do feel for you! 

Its very difficult to get on and not think about our issues when all your nerve endings down there are nagging or screaming for your attention or even just the mundane regularity of having to apply ointments and moisturisers or doing the checks you're supposed to do.

Im not going through the pain and discomfort you are at the moment but please know you arent on your own on the emotional battering youre going through. 

I really hope you can keep going with the imiquimod if it means you can shed vin3 and wave goodbye to  the worst of this........p.s. pls do ask if some energency lidocaine is allowed.

XX

Hello Shars, 

I just read your response to Janice and see that you are saddled with similar issues. Very sorry to hear it!

I share a few of the issues on this thread, but thankfully NOT the imiquimob.

I did pick up quite definitely on the DERMOL though. My consultant prescribed it for me when started on longterm steroid for LS. I had to stop the dermol as wiithin 24hrs it caused light blistering, redness, swelling similar to effects of bad sunburn. Not very nice and my whole area front to back peeled. I think dermol has an antibacterial ingredient which may not agree with everyone. I stopped immediately & was put on epaderm & doublebase with no further issues.

It was just a thought, but please just ignore if you arent having any issue now. 

I hope your mapping biopsies bring good news and relief from all this. 

Kind wishes LC XX

Hii Jane45, 

Thank you for sharing the Win Hof reference which im going to look up. 

I share a few of the issues on this thread but it was really helpful to read your comments about how all this makes you feel. It's all pretty rotten but there is some firm reassurance that we're all normal in feeling how we do.

When I first got my cancer diagnosis i didnt sleep for a week, think i was in shock, could barely function and had to get sleeping pills for the first tine ever in my life and im glad now i asked for them. After a few good sleeps I ditched the pills and cynic/sceptic in me and started to do mindfulness sleep talk down.

I highly recommend, especially some on youtube that do breathing and muscle tensing relaxation exercises. You just have to find the right one for you with a good voice that wont irritate the heck out of you. I use the same one over and over and rarely get to the end of the 40 minute run. I will try and post the link.

I hope you dont mind me saying, but i think you are being very positive, especially in looking at healthy ways to help get through this emotional battering.

Success with the talking therapy and the very best wishes for a good outcome with the AIN checks.

Take care LC xx

Hi LC, 

thank you for your kind words. Not looking forward to tomorrow at all. I know I won’t sleep tonight. I would be interested in the link if you can post it. Thank god it’s an early morning appointment, hopefully I’ll be home by the afternoon. I am trying to pull myself up hopefully when I get tomorrow out of the way I can focus on what I need to do. I’m really not sure if knowing is worse that not knowing! I been off work since the end of February. I really need to get back and concentrate on something else. I must like talking as I’m on here every day! Everyone has been so kind it’s nice to share experiences and helpful tips of how to get through this.
Regarding Wim Hof he says ‘get high on your own supply! It is definitely a strange experience so be careful I’d be interested to see how you get on.

thanks again

Jane45xx

Hi LC,

Thanks for the advice, i've not noticed any adverse reactions to the Dermol - but thanks for sharing it's something i'll look out for now.

i was speaking to my pharmacist and she said there are two types of Dermol.  The one I use is the thinner one.  but it's still antimicrobial so may well still have the same reaction with you.

It sounds agonising the reaction it caused.

I also use instillagel - to numb the area.  It didnt' seem to be very effective. I spoke to my pharmacist and she said to apply it 1 hour before the cream and it seems more effective.  

I was just wondering how long you others are managing to keep the cream on for ?  Because I'm not managing to sleep I usually end up needing to go to the toilet!  Do you ladies using the cream reapply?

Also when you swell or ulcerate do you wait for the skin to completely heal before restarting?

Final question. I know imiquimod causes inflamation - to the abnormal skins.  But has your healthy skin been effected?  I've looked for this online and asked my consultant and I'm none the wiser.  My entire vulva area is inflamed and swells and I' m unsure if this is a sign that the entire area contains abnormal cells.

I'm keeping everything crossed for the biopsies.  But my consultant has said if there's improvement then i can continue with the cream.  Otherwise i'll have to have the vulvectomy which they're not keen to do given my age.

They did speak about radiotherapy but i think as mine is widespread the pain may be far too much for me.  but perhaps an option if it wasn't so. I have chatted with some one who is about to start.

Shars x

Evening ladies

Thank you so much for your support.  I have been  prescribed lidocaine to use but it stings when I do apply it. They have stopped my steroid cream nerostone( not sure spelling is correct) which this is not helping on the other areas where I keep getting vin 3. I have now had 4 operations and am back at hospital on the 28 th july. They have said if the imiquimod  has not worked this time then my clitros will have to be removed. I am so frightened.  

I cant seem to find anyone that has to have there clitros removed as I dont know how this is going to affect me or what to expect

I know I probably sound a wimp but I just cant help thinking what's going to happen.

Thank you for reading this  Janice xxx

Hi Shars, 

I used the cream on my perineum after my wide local excision. I had to use it because the margins were positive. I’ve had pain and two small areas that get sore but they quickly repair again between applications. I know what you mean about going to the toilet. I worry I’m removing it too. I never reapply it. I just hope it’s been absorbed into the skin. Regarding the healthy skin I have developed a very red painful Irritation on my right labia and I was worried about the same thing. When I saw my gynae consultant on Friday he said it could be just Irritation but it could also be VIN 1. I’m seeing another specialist tomorrow. I plan to ask her about this. In my head it seems logical that if there is disease else where the cream will fight it. I’ll let you know if she gives me a straight answer. I dreading it as I’m sure she will end up doing a biopsy. 
take care

Jane45 xx

Hi Janice,

someone who has had 4 operations and going through what you are going through is not a wimp in my book. Please give your self credit. We are all going through such a rubbish time yet we all still get up and carry on going through the motions of life. Plus we are all managing to be there for one another on this forum. 
I’m not sure if anyone can answer your questions on here regarding the possible surgery. If it’s not possible maybe your consultant has a patient that has been through this surgery. Maybe he could put you in touch with each other. 

Hi Jane45, 

Sorry, only just saw your response. 

I hope today goes swiftly. I wasnt sure if you are expecting an immediate result today or if its going to be another waiting period to endure. Really hope it turns out well. 

This is the link to the sleep talk down video on youtube. Its about 40 mins long. Hope it works for you. You might need to copy and paste

https://youtu.be/Zljg2ptExHc

Take care XX