VAIN 3

Hi Looloo and welcome to the group. 

I’m really sorry to read what you’ve had to deal with so far. I’m not sure if you meant imiquimod cream as that’s normally used externally rather than internally? perhaps it’s something different you’ve been told.

I can’t relate exactly, as I had cervical cancer which recurred and I had to have my vagina removed, but I’m aware this group can be quiet and so I wanted you to know that your post has been read. 

This is difficult-especially as it can be hard to discuss this with anyone who has had a similar experience. I know you are concerned about the financial impacts of having treatment, so why don’t you give the support line a call (the number is in my signature) and you can have a chat with the team about what help may be available for you. It’s hard dealing with difficult news and having financial concerns but you can chat to either the nurses or the team who can assess any financial help available to you. 

I hope this might help a little, and that you’ll receive some support from others in the group who’ve gone through anything similar. Please let us know how you get on.

Sarah xx

Thank you, the cream is to be used internally so not sure? 
sorry for your news, hope you are ok. 

I’ve not ever heard of imiquimod being used internally in any of the groups I’m in, but hopefully you’ll be able to get confirmation of this, although it still sounds as though you’ll need more surgery from what you’ve been told so far. 

Keep us posted and I’m sure it will be helpful for other members in the group to hear about possible treatments. I’m doing ok thank you, but I was in a different situation having had recurrent cancer and very radical surgery. 

Sarah xx

Hi Looloo,

I also have VAIN3 and started using topical imiquimod inside my vagina about 8 weeks ago. There is hardly any info out there about it being used for this - especially internally. From what I understand, treatment with imiquimod for VAIN is very new. The disclaimers state NOT to use internally and all the side effects relate to external use, and add that it should be washed off (!).

I built up to applying 3 times a week, but after a break of a few weeks it's now been agreed for me just to do 2 a week. Also, originally I was applying it myself at home but now they are applying it at hospital so that it is targeting the right areas and not damaging the healthy tissue. 

They are recording my symptoms as they simply don't really know the side effects. And I guess every case is different. For me, it is sore, but bearable. The worst is the systemic tiredness, headaches and feeling pretty miserable. That's why I stopped in the first place as it felt like it was all building up in my system.

Second time round I'm coping. I haven't taken time off work yet but am very tired the rest of the time. The 3rd/4th week is apparently the worst but it remains the same after that.

If it starts to build up again, I will take another pause.

So basically, I think everyone reacts differently and they don't have enough data to know what is likely. None of it is very pleasant but neither is the option of leaving it. I personally think the systemic effects are more exaggerated because it's internal and you can't wash it off

On a positive note,  they are already seeing improvements. The right side is almost completely clear.

It's easy to feel alone as I think it's quite rare. Hopefully my ramblings have helped a bit.

Thank you for that info it’s really helpful, I was told it can make you very tired and sore , the treatment actually sounds positive for you ! Sending hugs , thoughts are with you during this difficult time x

Hey,

I also have VAIN 3, I have had an exploratory surgery to look at all the areas affected. My surgeon also removed a few areas as well as taking biopsies.

She then found pre cancerous cells on my cervix too, I forgot to ask what stage. So I am due back in to have those removed and for her to decide if I will also be starting the imiquimod cream for the VAIN 3. She was hesitant to have further surgery to remove it as again it's not so easy like the cervix.

Annoyingly I had a call from my surgeon today asking where I was. Apparently I had my appointment but I had no letter or text!

So now just waiting for another to see what my next steps are.

Hope you get some clarity on treatment soon too.