Hey Hun
so i recieved a letter saying no signs of cancer or pre cancer found...and to wait for the 3 month check up ..which i presume is the appointment sent the other day for april.
Im so happy im guessing that means the VAIN situation was sorted too....a little confusing but over all im so relieved.
How is the new hair do? and how did you get on on Tuesday?
Sending hugs and hoping your well x
Hello,
That's great news, I bet that's a relief albeit a weird one. It's always a bit of a strange feeling I think.
i started the treatment on Tuesday which was oK and over fairly quickly. I still had a little cry at the end though when we were talking about the treatment plan and the lovely nurse game me a hug.
At some point I'll do a post about it on here as I was given some useful advice involving Vaseline and paracetamol, which may be handy for anyone else going through this.
The hair is ok I think, I've gone for a super short fringe which I'm liking I think. It will soon be immortalised on my new passport for the next ten years, so ask me again then to see if I look back with fondness or not!
Goodnight and hugs to you too.
x
Hey
Just checking in and seeing how your doing?
Did you get your new passport and immortalize your new hair do.?
Wondering if you ever had stitches? I keep getting a dull pain/achey feeling lower back... wondering if im being paranoid or is it the stitches ...should i be concerned? Or is every little ache and pain gonna freak me out now...
Sending you a massive hug! x
Hello,
Passport back today do officially immortalised for the next decade. I look slightly grumpy but the new fringe is good.
I've had stitches inside and out from my hysterectomy but I don't remember them giving me back pain, just a weird pulling feeling from the inside.
The treatment is ok and I've had 5 now in total. No pain or burning thankfully and the vaseline prep seems to work! Tuesday the doc said it looked like it was improving but I guess the real test in a few months. I think I've met most of the colp nurses now and one made my day last week by guessing my age as 10 years younger than I am!
How have you been and when's your next check up?
L
Hi
So hopefully your new passport is with you now, and your booking a fabulous trip somewhere lovely. :)
Thats great news ...fingers crossed your getting all better. And always a great boost when someone thinks your younger .... so grab that swimsuit and go treat yourself to a fab holiday in the sunshine.
My next appointment is April thats a colproscopy. Im feeling a bit nervous as the last one hurt a lot ... my consultant found it difficault to get to the area he wanted to look at, i swear i almost threw up or passed out i wasnt sure which was gonna happen first. Thankfully hubby was there to hold my hand.
But want to get it out the way and know if all is definately good. Trying to not think on it all
Take care hun and sending you big hugs x
Hi, hope you don't mind me messaging you so long after your post. I'm new to this forum thing but feel so alone and don't know anyone who understands what I'm going thru because I find it too personal to talk to people about. I think everyone thinks I'm making a big deal out of nothing.
My story seems pretty similar to yours... 1993/1994 treatment for cin3. 10 years clear, then it came back. Since then, 14 surgeries to cervix, hysterectomy & cervix removed. Then got vain 3 and lots of vaginal surgery, imiquimod (didn't work after 3 horrendous courses), more surgery... now told it's never gonna go away so just have to deal with it every 2 months. Went in for partial vaginectomy but cudnt do it cus my bowels, vagina, bladder and both kidney tubes are fused together from all my surgeries so I'd have to lose them all. Not sure what else I can do.
Hi DP,
Really sorry to hear you are going through this. It sounds pretty traumatic. Have you spoken to your consultant about what your options are?
It might also be worth finding out if there is any support or counselling that can help you with this? It's sometimes so much information to take in that some outside support could be helpful.
L
Hi,
Thank you for responding, I am usually so positive and accepting of my situation, but now and then I have down days.
Ultimately, I know that the end result is probably going to be removal of vagina, bowels and bladder . Not sure how they'd tackle kidney tubes?
This is because of all my surgery, everything is stuck together inside. One goes... all goes!
I'm 49, married, and not ready to face that so at the moment I'm going back every 2-3 months and dealing with whatever we find each time.
Unfortunately, even after all vain3 removed with clear margins, only 2 months is enough time for it to back.
I've tried counselling but found I spent more time explaining everything and got very little back.
Thank you for being an understanding ear when I needed it.
I hope that you are ok
hello all. Hope you are all keeping well.
This is one of my first posts I've put on here. Found this site when I was going through my cin3. I'll give a brief back ground of what's happened. In Feb 2018 I went for a smear, came back cin3 and vain. Had cone biopsy and part of my virginal walls lasered. Was due to go back for smear 6 months later but ended up going back after 5 as didn't feel right in myself. Smear done came back as cin3 and vain3.
I've got 2 boys and am happily married so i was given the choice of a hysterectomy even though I'm 29. I had the operation on Nov 26th. They took all but my overies and took part of my virginal wall that was effected by the vain3.
I have to go back for a smear in May. I'm a little worried that I may have vain3 again as it grew so quickly last time. Having sex hurts still and I find that I do bleed once we have had sex a little. Is this normal after having a big op like I did or shall I discuss my problems with a doctor. I'm just so worried as I just want all this worry to end.
Many thanks
Charlotte x
Hi Charlotte,
Sorry to hear you're going through this too.
I think it's normal after surgery to experience bleeding and some pain up to a point but I would get any unusual bleeding checked out just for my own piece of mind.
Can you ring your hospital colp team? I found mine really helpful and they always ring me back. It was more useful than my doctor who didn't know my case.
L
Hi Thanks for the reply. I'm having some swabs done tomorrow. Most people I've spoken to (friends) have said it's just my body is just healing and maybe I have had sex too soon.
Charlotte
I'm sure you'll feel better for having the swabs done.
Fingers crossed it's all good.
Hi all. Had a check up at the hospital today. Swobs came back normal. However when I was checked she said I had quite a big area on the left side at the top of my virginal wall where I was cut of what she thinks is genulation tissue however she's not sure if it's possibly a fallopian tube that has come through where i was stitched as it's quite long. Since coming away from the appointment I've had time to take it in and I'm now worried what if it isn't. She said I've healed well apart from that. Anyone else had this ???
Hello back again,
How's everyone doing?
Turns out the VAIN is back again so I'm expecting more cream treatment as it worked last year. This time I have two areas not one to treat.
Bit of a kick in the teeth though as I thought briefly I had the all clear.
If there is a silver lining it will be having almost a year of normality which has been nice, with no weird symptoms or pains.
Hope you're all doing ok.
L
Hello, I hope you don’t mind me joining in the chat!!had RH 31/12/18 for Cervical Cancer. The pathology found VAIN 3. I have my first colposcopy for the VAIN 3 on 26th march. I’ll ask my gynaecologist lots of questions but I can’t help thinking I’m eventually going to end up with no vagina or worse yet, pelvic exenteration. Can anyone help me with this? Am I being paranoid? It just seems like they don’t know how to treat VAIN and it always reappears. Thank you in advance for any advice.
Hi sorry to hear this. Hope your appointment went ok.
Please can I ask all what we’re if you had any the symptoms of VAIN 3 after your hysterectomies ?! I’m 7months on from mine and have my checkup on the 20th July. However I currently have what the medical practitioner (from doctors surgery) thinks is a cyst on my virgina have been put on antibiotics for this. But I can’t help worrying I’ve got CIN 3 again as it came back last time after just 5 months! I’m getting bad back and lower abdominal pain by my private’s. Should I call the hospital or just sit it out. Worried I’m making a mountain out of a mole hill
thabks
Vain what exactly is this is it like CIN but to do with your vagina? I may have this waiting on biopsy results taken this week how long do u wait for these results second colposcopy after LLetz have high Stain Hpv and this I'm hgigh risk cat Doctor mentioned some cells possibly on the Vaginal wall and 1 area on cervix posslby wher they had removed previous cells I am so worried any advice would be great thanks
Vain what exactly is this is it like CIN but to do with your vagina? I may have this waiting on biopsy results taken this week how long do u wait for these results second colposcopy after LLetz have high Stain Hpv and this I'm hgigh risk cat Doctor mentioned some cells possibly on the Vaginal wall and 1 area on cervix posslby wher they had removed previous cells I am so worried any advice would be great thanks
I've had VAIN twice now at the top of my vagina following a hysterectomy. I basically don't have a cervix anymore so it can't be CIN but it seems to keep reoccurring in the area closest to where my scar tissue is from surgery. So yes VAIN is like CIN but in a different location.
I now have vault smears every 6 months and for the last two years have had to have Imiquimod treatment as it keeps coming back. In slightly good news it has stopped all my previous symptoms e.g watery discharge and this year the area with VAIN had shrunk in size, from a 1cm diameter to almost microscopic.
I've just had a positive 6 month all clear but I've yet to get past a year. I'm told is incredibly rare and I've been particularly unlucky.
I've written a few posts on my experience as I struggled to find many people in a similar situation, so have a read and hopefully they will help.
Always remember though we are all completely different so don't see what has happened to me being the same outcome for you.
Hi Sunflower,
I missed this message so I was just wondering how you were getting on and what treatment they offered?
L
