I wanted to provide info for any other ladies faced with a VAIN 3 diagnosis and impending Imiquimod treatment.
VAIN is effectively the same as CIN but the VA bit stands for vagina instead of cervix. Having gone through many treatments for CIN 3, finding out about VAIN was pretty horrendous especially as the laser surgery didn't work and the next stage of treatment and possible surgery wasn't something I wanted to think about.
So when I was told about Imiquimod treatment, I naturally googled it to find next to no useful information, other than it had some pretty horrible side effects including blistering and burning. So back in January I was pretty apprehensive and quite frankly scared. It didn't help that I was given various tubs of cream to wash with and apply to help healing and numb the area. Apparently it is more usual to treat the vulva/ labia for VIN and this can react more.
The treatment has effectively involved two visits to the hospital a week to have the cream applied with a giant cotton bud. Kinda like having two smear tests a week.
I'm thankfully down to the last 4 sachets and I can say other than some initial discomfort and sensitivity it has been a fairly pain free experience. It does help to try and relax (I know this is easier said than done) and it's almost become routine. I've got to know ALL of the nurses, and last week I got to see my vagina on the big screen. I can report it's looking fairly pink and shiny. There is still a tiny 'patterned' area but overall the lesion they have been treating has massively improved.
I won't know for another month or so if it has been a fully successful when I have a biopsy but I'm feeling more positive.
Thanks so much for posting this! I’ve been troubled by VAIN 3 for 2 years.... I had laser, which didn’t work, then surgery to remove a chunk of my vaginal wall and unfortunately I still have some VAIN. Pathology showed very early invasion but I’ve always wondered about the Imiquimod- I was put off from the reports of awful side effects, but it sounds like you’re doing really well? I was scheduled for a hyster 2 weeks ago but I backed out, I just got the fear! Every smear test is showing high grade abnormality but they don’t know if it’s from the cervix or vagina as biopsies are always clear.
please post and let me know how you’re getting on, would love to hear if the treatment has worked! Out of curiosity where are you? I’m in Scotland and the doc said I’d have to administer the imiquimod myself??!
Sorry to hear you're going through this too. I think I probably read the same stuff as you on imiquimod but figured I had to give it a go. I'm in Cardiff BTW.
I'm being treated for a 1cm lesion at the top of my vagina near the scar tissue from my hysterectomy. The lesion has been around since my hysterectomy and plainly refused to heal. It was causing light bleeding a pain during sex so pretty miserable really. They lasered it twice I think and talked about wanting to avoid further surgery so they wanted to try this next.
As it was still quite sensitive I was also given cetavlex to use for two weeks prior to treatment. This is an antiseptic cream. I had to apply this myself but thankfully managed to get a cream syringe applicator otherwise there is no way I could do it myself.
The Imiquimod comes in tiny sachets, not even quite a pea size amount. I think this is because people over apply in fear which can then cause the nasty side effects you read about. My consultant and many of the nurses haven't done this treatment before internally so I get the impression I was a guinea pig As they all seem very interested in the progress.
The cream was applied in the exact spot and they needed the magnifying glass and light to do it.
It was sensitive initially when they applied it but mainly because that spot was a bit raw. Plus I felt a little queasy afterwards from being prodded but absolutely no other side effects. I should say I'm quite laid back now about smear tests so I'm pretty good at just getting on with it these days. I appreciate not everyone will feel this way.
There is no way I could do this myself as it was such a small amount of cream and the plastic syringe applicators wouldn't work either as there is no way I would know where to put it. Just applying liberally doesn't bare thinking about.
The team here in Cardiff are fantastic and they have all squeezed me in between appointments. On a good day I've had a five minute wait on a busy one almost two hours. Thankfully that only happened twice.
I guess for you knowing where to treat e.g which exact spot would help, mine was pretty obvious. I don't think I would want to apply it myself unless I knew where it was going and that I could easily reach it.
I finished my treatment last Friday, with a little bumpy ride at the end. I think the last two weeks brought all my fears to the surface again knowing I've got another minor procedure under anaesthetic and a wait for the dreaded results. That combined with a slightly painful application and a bleed gave me more than a enough reason to cry at the hospital when the really nice nurse asked 'how I was?' For some reason that question always gets me!
In truth I don't think it was the actual cream giving me problems, just my mental state of mind basically having enough.
So if you do get offered the cream treatment I think it's worth a go. It's definitely not as bad as all the stuff I read which was mainly for vulva treatment.
Apparently I'm being 'mapped' when I go in for the next hospital visit on 14th so everything is crossed its all clear
just had really good news from the hospital as the treatment seems to have worked. No sign of VAIN anymore and almost 5 weeks without having to wear a pad for any unusual bleeding or discharge.
I'm back in December for my 6 month check up but fingers crossed this is all good.
Really pleased that that the Imiquimod cream seemed to have worked. I too have VAIN3. I’m feeling really fed up as having had hysterectomy only 6 months ago for 1A1 cervical cancer and given the all clear I was hopeful that was the end of it! It’s taken a lot to get through all of the staging investigations and treatments (I am a cancer nurse myself so knew too much which didn’t help). I am waiting to find out what next. I have a general anaesthetic procedure on Monday to assess and take more biopsies. Of course I have read best and worst case scenario and my mind seems to be focusing on the worst case so I’m trying no really hard to focus on only what my consultant tells me not what I have read.
It’s comforting to know that the Imiquimod worked, did you have any further problems? I really don’t want more surgery when they did my hysterectomy they found advanced endometriosis involving my bowel and ureters so going back in won’t be easy and I just hate having any procedures
Realise it’s a long time since you posted but if anyone has any other experience would love to hear from you x
I’ve been treated with imiquimod twice. The first time it cleared the VAIN 3 for two years as well as clearing up various symptoms. Then is came back, so I was treated with it again last year. However this time it was less successful and although I didn’t really have any pain or side effects, it did leave the skin on my vaginal wall quite thin and ‘sloughy’ - I think that’s how the consultant described it.
Unfortunately I’m back again right now for 3 treatments a week for 6 weeks with a drug called Cidofovir. It’s a local application applied with a giant cotton bud. I think it’s shown promising results with about 50% efficacy. But as per any trials in this area it’s only been tested on small numbers!
I’m halfway through treatment and although it’s not causing any pain, having a small amount of cream applied using a speculum, is starting to cause bleeding. So in-between I’m using estrogen cream to help protect the skin.
So I’m not having the best of luck but I still hasn’t developed into cancer, so that’s one positive I guess.
Thank you so much for your really helpful reply. It’s very reassuring to talk to someone else experiencing a similar journey! My mind has gone into overdrive and thinking of the worst case scenario of further surgery which really didn’t appeal to me at all. I’m hoping that because I have already had recent CT Scan, PET CT Scan, MRI Scan and multiple examinations that whatever is there is high grade changes and not cancer but if it is it has to be microscopic. They didn’t see any lesions at the last colposcopy 2 weeks ago just the abnormal vault smear. It seems as though I just have to get used for trying to manage it and be thankful that the close monitoring will hopefully prevent cancer.
Hope your next treatment goes as well as it can and you find some benefit. Would love to keep in touch. I will try an update too!
Once again thank you so much for replying
It’s really difficult not to let your mind go into overdrive about the what ifs… I completely get how that feels. I guess being a cancer nurse comes with a whole load of extra worries. I’m torn sometimes about wanting to know everything and taking in the info. one step at a time so I’m not worrying about something that might not happen.
I’m really trying to avoid more surgery too, as the next step is pretty distressing if I have to go down that route. For me, the current treatment might be the last time I can choose this route. It’s been 10 years of annual treatments and my vagina is basically reached its limit!
I do have one persistent lesion in the top of my vagina in the vaginal cuff. It sounds like this can be quite common after a hysterectomy.
I thought that operation would solve everything and that’s why I’m hesitant about more surgery being the right option.
I was diagnosed with high risk HPV and cervical cancer in April last year, I hadn’t had a smear for a while (traumatic birth with my son and difficult repair after put me off! But also painful experience and now I know that was probably also the advanced endometriosis I didn’t know I had). Because of this my consultant has opted to take me to theatre and do most of my procedures under general anaesthetic. I had biopsies initially then a Lletz procedure and then a hysterectomy in July. This was my six month follow up and I was hoping because the hysterectomy didn’t show any residual cancer or CIN meaning the Lletz had treated it that I wouldn’t have any further issues. It was a 1A1 cervical cancer. But now the vault smears show high grade changes so booked for general anaesthetic procedure on Monday to have more biopsies and to assess the vaginal vault.
I guess then it depends on what they find as to what they recommend. I’m hoping treatment with creams will be an option I really do t want anymore surgery and my surgeon said that going back in would be difficult because of all the scarring from the endometriosis. Thank you for your reply it’s really helpful to talk to someone who is experiencing a similar journey and gives some encouragement to focus on the now and not the what ifs! X
