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VIN/ VAIN imiquimod treatment update round two

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kontikitoo
kontikitoo's picture
VIN/ VAIN imiquimod treatment update round two

Hello,

I've recently completed my second round of treatment for VAIN/ VIN for abnormal cells in my upper vagina near my scar tissue following CIN treatment and a hysterectomy so this is more of a useful info update for anyone going through similar treatment.

This is my second treatment (one year later) as the first treatment did initially clear the cells but it returned again. However in positive news the imiquimod cream did keep the abnormal cells at bay for almost a year and reduced the systems which was continuous light bleeding and watery discharge. 

The treatment both times was 6 weeks of having a tiny amount of cream applied in colposcopy twice a week as 1) the cream is pretty hardcore so you need the smallest amount and 2) I don't know about you but self applying a less than pea-sized amount of cream to the upper parts of the vagina to a precise spot is near impossible! So once again I am very grateful for the staff nurse team for doing this for me. They have been excellent. Turns out I'm only one of two women in my area having this treatment right now.

On imiquimod, applied internally it was more or less pain free. I always felt a bit weird afterwards but that seems to be having a colposcopy in general. According to the nurse there was some reddening and slight blistering towards the end and it felt a bit more sensitive each time.

As a treatment for me it has now cleared abnormal cells twice but I've yet to get past that one year all clear. 

In terms of mental health, it has been easier this time too as I know it works to some extent, so at the very least it's keeping it at bay and I know longer have visible symptoms which was previously getting me down. So fingers crossed and if anyone is facing similar treatment please feel free to get in contact.

x

44, persistently CIN 3 now VAIN 3. No cervix and minus a womb. 

2013 loop & Lletz 

May 2014 1st cone biopsy

March 2015 2nd cone biopsy 

Feb 2016 keyhole hysterectomy (kept ovaries)

March 2016 CIN3 found in cervix (now removed) awaiting a date for 6 month check up

Nov 2016 silver nitrate treatment for granulation

Dec 2016 confirmation of granulation all clear on biopsy

March 2017 laser, biopsy and a ovary scan

April 2017 Biopsy ok but now have VAIN

October 2017 2nd biopsy confirming VAIN 3

Dec 2017 lasered & biopsy

Jan/Mar 2018 start trial of Aldara Imiquimod

14 May next op examination 

D0tty

Hi, 

It's good to read about someone with VAIN. Last month I was told I have VAIN2 - the consultant said it's very rare in women my age (36) and there have only been 2 cases at the hospital in 10 years! Yesterday got a referral to another hospital (because mine doesn't do the treatment for VAIN) for August to discuss treatment - I presume it will laser, not under GA I hope. 

I think what worries me is the consultant said they don't understand VAIN as well as CIN and don't know how quickly to can progress or if it goes away on its own. I guess it's good it has been found but it's damn scary. My family always say don't worry about it but it's very hard not to. 

kontikitoo
kontikitoo's picture

Hi Dotty,

Absolutely feel your pain. I think it's normal to worry but it's also good to find more positive ways to help you cope. Mostly it sits at the back of my mind and it's only when i have impending treatment or test results the anxiety comes to the front at full pace! 

I haven't really told my familiy the full extent of what's happening but my partner and close friends know whats happening and I do talk to them but your right it's hard to expect them to understand.

VAIN seems to be much more mysterious and I get the feeling the treatment is trial and error. The cream definitely worked better for me than laser and there was a limit on how many laser treatments as it was gradually thinning the tissue. Going in twice a week to colp is actually quite reassuring as I know it's being dealt with. Chances are I will will probably have more as I'm not expecting it to clear any time soon.

In the 5-6 years I've been having various treatmenst my body hasn't been able to clear the hpv virus. I've been tested for all sorts of immunity related stuff as well as being asked about diet, health & smoking (I score pretty well on this front), so it's just simply bad luck for me.

The positive it isn't cancer and as long as the treatment keeps working I'm happy.

All the best,

K

 

44, persistently CIN 3 now VAIN 3. No cervix and minus a womb. 

2013 loop & Lletz 

May 2014 1st cone biopsy

March 2015 2nd cone biopsy 

Feb 2016 keyhole hysterectomy (kept ovaries)

March 2016 CIN3 found in cervix (now removed) awaiting a date for 6 month check up

Nov 2016 silver nitrate treatment for granulation

Dec 2016 confirmation of granulation all clear on biopsy

March 2017 laser, biopsy and a ovary scan

April 2017 Biopsy ok but now have VAIN

October 2017 2nd biopsy confirming VAIN 3

Dec 2017 lasered & biopsy

Jan/Mar 2018 start trial of Aldara Imiquimod

14 May next op examination 

Saoirse8

Hi, 6 months after a total hysterectomy(8 year history of cervical abnormalities) I’ve just been told today by my gp that following my vault smear I have high grade vaginal abnormalities that need urgent treatment. Really worried as I thought this was all behind me! Have to wait 2 weeks to see the consultant and feeling very emotional about it all. Any advice greatly appreciated x

Petesdragon
Petesdragon's picture

Have you had radiotherapy? That.can cause inflammation. If not, that may be a treatment they can offer. Plenty of options for you I think.

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Saoirse8

Thank you for your reply and sorry to see you have had a lot to deal with too. I haven’t had radiotherapy but my gp thinks they will do this now. I’m just very worried as I thought after the hysterectomy it would all be behind me. I will keep positive knowing I have options and hope all will be ok. I’m just so tired and it has all taken it’s toll. Warmest healing wishes and God bless xx

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