13th operation for vin and ain 3

Thursday the 10th October - I woke up from what I am hoping is the last operation I will need to have. It’s been an agonising 11 years but hopefully I’m out the other side. I have a lot of healing to do before I can see properly. Just hope it doesn’t come back within the first two weeks like the last lot. I paid to have the hpv vaccine I’m 36 but figured it can’t help to try anything that may prevent the return. I will keep you updated on my progress. To anyone else suffering the same, good luck, stay positive and keep going xx

  • Hi jodspods83...im shocked to think u have had to have 11 operations....i too have vin 3 was told last week and i need an operation in 3 weeks to remove it ...did yours come back each time? ..sorry to ask..my head is all over the place ...so scared ..im only 38 with a 6 month only baby girl and am petrified i won't see her grow up ...my consultant said its a 30 percent chance of it returning ...but was thjnkjng in like 10 years or summit..once u get the op do they test it for cancer too? ..sorry for all the questions ....hope u are ok..sending lots of love xxx

  • Hi jodspods83...im shocked to think u have had to have 11 operations....i too have vin 3 was told last week and i need an operation in 3 weeks to remove it ...did yours come back each time? ..sorry to ask..my head is all over the place ...so scared ..im only 38 with a 6 month only baby girl and am petrified i won't see her grow up ...my consultant said its a 30 percent chance of it returning ...but was thjnkjng in like 10 years or summit..once u get the op do they test it for cancer too? ..sorry for all the questions ....hope u are ok..sending lots of love xxx

  • Yeah it’s actually been 13 operations but that was after the first one in 2015 for vulva cancer. It’s been a long hard slog but I can honestly say it’s worth it. Just stay positive and be strong not only for yourself but for your 6 month old little girl.

    i can honestly say that is my biggest fear but I don’t have children at the moment I lost my son back in 2009 but nothing to do with the vin3. I will say as long as you keep checking yourself and getting to know your body you will be fine just do regular checks in the mirror. 

    stay strong and good luck with your journey. I’m a rare case where for some reason my immune system doesn’t fight infections so well. Don’t be panicked by my story just know that there is an end in sight. 

    after the operation they will test all pieces removed to let you know the outcome. I believe you will be absolutely fine though, sending you lots of love, hope and positivity! Take care hun xx

  • Thanks so much for your reply...i think its the shock more than anything ..once i get my head around it all i will feel a lot bettter... im so sorry u lost your son that must've been horrendous, u are so right i will be checking my bits forever now and if i seen the slightest change ill be straight down the docs ..i do hope you are ok, thank you for your positive words they have really helped me and keep me posted on how u are ..sending lots of love back at u...u take care xxxxx

  • Aww bless ya!! Of course I would reply. When I had the cancer it looked like a milk spot about the size of the end of a cotton bud pure white. Just so you know what your looking for. If you get any lesions come up after surgery then get yourself straight back I think you need a 3 month window in between but I truly wish you all the luck in the world and hope that you and your daughter love a long and happy life. Just be fun, have fun, live your life and make so many memories. Take lots of pictures and if it makes you feel any better write all your fears and troubles down then after you have had surgery and healed go back to the book and write down how your feeling now. It works and you look back going all that worrying and for what?! There’s a saying... worry is the interest paid in advance on a debt you may never owe! I found that helped me in my weak times xxx

  • I will keep you updated on me but I don’t find out for 11 more days xxx

  • Oh thanks chick...ill defo be checking my bits constantly and ill be telling them of any changes .. its nice to know what im looking put for tho ..you have had to go through so much and are too young for all this ..life sucks sometimes ..i hope your results all come back soon and are good news..u deserve a break hun....that sounds like a fab idea of writing it all down, and like u say ..enjoy now as life is too short...we both will get throught this and live long and happy lives ...wishing u all the luck in the world ...xxxxxx

  • Yeah just keep checking it doesn’t need to be excessive because you will drive yourself mad and like I say you need to enjoy each moment for what it is. Don’t let it consume you because you will feel awful. You will have days where it’s harder than others and if you find yourself exhausted don’t beat yourself up just wake up each day and try your best. I’m always here if you are having a tough day. I really don’t mind. 
    I hope so to as I plan to start a family myself soon. It makes you so strong Muscle tone3 after you come out of the other side so with all the heaviness you feel just imagine how great your going to feel once all that shit fucks off!! We all have to roll with the punches girl and when we want to live, we will take everything and anything that’s thrown at us!! Your a mummy so I’m sure that’s where your strength will come from. Look after yourself. Have you had the hpv vaccine? I’ve only just had it this year well September and October then the last one in January. I only ask as this is the first time it’s not come back. The thing with people our age though is that you have to pay for it. 
    we will get through it your right Muscle tone3Muscle tone3Muscle tone3 xxx

  • Oh my god thanks for ya lush message even though it made me cry ....i will beat this shit and life sucks sometimes but u are so right ..i need to be string for my baby girl...it took me 4 years to have her and im not going nowhere ...i wish u all the luck in the world for being a mammy and u so deserve it chick....im at the docs on sunday as i think...ok o know i have post natal depression ...i had iy once i had my baby but then was feeling great then after the news last week i feel like i gone right back to square one but ill be back to myself in no tome im sure...i will ask the doc about the HPV vaccine..it can only help..ill pay whatever the cost is..im buzzing yours hasn't come back ...we defo keep in touch and keep me posted on how u are too...u take care my lovely xxxxxx

  • Your totally welcome I think it’s better to know what to expect instead of doing re runs in your head of how it could be but never really knowing. It’s all unnecessary stress. 
    As for your post natal depression don’t beat yourself up about it but do speak out because I’m sure anyone would understand why you are feeling the way you do with everything going on. 

    The hpv vaccine cost me £465 for 3 injections. You can book it at your local boots or Superdrug stores and some chemists. 

    I'm buzzing its not returned to and just look forward to tomorrow and being told for sure. 

    We will defo stay in touch and like I said I’m here if you need to vent at all. Deep breathe in, shoulders back and game face on you have got this girl!! Muscle tone3Muscle tone3 Stay strong xx

  • I will defo stay in touch ..thanks again for the message ..i love the game face bit ha ha ..we got this girl .i been to the docs about the post natal depression and i have a telephone conversation today at 3.30 so im hoping  I feel better soon..its mad i have the most perfect baby girl and yet I feel so lonely ...talking does help and ill be fine soon im sure...keep me posted on ya results as wont be long now ..u take care hun xxxxx

  • Did your doctor suggest the HPV vaccine?  I read that the MD Anderson in the US (I'm from Atlanta, GA) is doing a trial to see if giving the HPV vaccine has a positive effect on women who have had recurrent VIN/Vulva cancer?  I have never tested positive for HPV--although my doctor assures me I likely have it.  

  • Yeah the doctor suggested it to me but also told me that they were still doing research to confirm whether it makes a difference. I can only speak for myself but this is the only operation that I haven’t had more lesions reappear within two weeks. 

    my case is a bit rare as my immune system just won’t fight infections for some reason. since the last op I’ve not had an infection and the wound is healing nicely. It’s cost me £465 but it was money well spent in my eyes. 

  • Can you not get on the trial at all? Xx

  • I can get on the trial, but it has to be after I have the surgery to remove the lesion. I just got back from the Gyno-oncologist and made my appointment of the surgery. So, hopefully I can get in after that happens. 

  • Yes do it honestly I feel so much better after having it and even my wounds have healed a lot nicer. 

    I wish you all the luck in the world and let me know how you get on Grin xxx

  • Sorry I missed this message... I hope your telephone conversation went well and you are getting the support you need. 
    we could have all the people in the world around us and still feel lonely because your battle your fighting is exactly that, yours!! All you need to remember is how much you wanted that beautiful baby girl and once this fight is over, how much of a good life your going to give her. Please don’t beat yourself up take weak days on the chin and good days just run with them Grin 

    I got my results my vin3 lesions are gone and haven’t returned, wounds healing nicely so I’m happy about that. 
    The Ain3 they found another abnormality so just waiting to hear what that is. 

    I hope your well girl xx

  • Thanks chick...oh im so buzzing the vin hasnt returned that is awsone news...keeping everything crossed for the ain3.keep me posted on how u get on. ..the docs went really well and i will be getting counselling after the op to help the post natal depression...summit had to help..and u are so right ..i need to take each day as they come in future and not beat myself up if im having a cack day...ill keep fighting as i aint leaving my baby girl for a long time yet...sending lots of love xxxx

  • Aww thank you Pray I’m sure you will be just fine after your operation to. 
    There really is no point beating yourself up for something you can’t actually change, it just makes everything more of a struggle. Your little girl will be so proud of you in years to come when you tell her what you went through, what you survived and how much you love her! 

    I am rooting for you from the side lines girl and I’m always here if you need a chat xx

  • Hey hun how u doing...hows ya bits...are they healing well...oh ive had a nightmare..they cancelled my op for this Thursday as ive got a bad cough and they think its a chest infection so its postponed till 5th dec...ggrrr..im gutted as was all ready for it ...never mind..least ill know what it is before xmas ...keeping positive tho...did u get your results for the ain3 yet..hope u are well..xxxxKissing heart