I have a feeling there are fewer ladies out here with VAIN 3 but hopefully one or two of you can share your experiences Or lend a supportive ear.
I just received a dreaded letter today confirming my recent biopsy showed VAIN 3 abnormal cells in my upper vagina. Certainly left me with a sick feeling in my stomach as I was hoping things might improve after my hysterectomy last year. I get the feeling I'll be going through all the same test and treatment cycle of the last 4 years for CIN 3, which fills me with dread, starting with laser treatment again.
Still trying to remain optimistic as it is supposed to be pretty rare but can't help feel like I'm rolling cycle of bad luck At the moment.
Are there any questions I should be asking? Any support or advice or distraction much appreciated.
there aren't many VAIN ladies... which is rubbish. I've had it for 2 ish years. In Feb this year I had quite a large area removed , and they found microscopic cancer cells. I'm still getting abnormal smears and they don't know if it's coming from the cervix or vaginal Wall. Currently deciding if I want a hysterectomy or not.
All I can say is good luck, it's so rare and nobody seems to know how to get rid of it- make sure you're under a gynae oncologist- not just a gynaecologist.....
Thank you for replying, sorry to hear you are going through it too. It all sounds pretty horrendous. I can't believe I'm having to go through more treatment.
I hadn't really heard of it until the they mentioned it in April at my follow up appointment. I was in too much shock to ask exactly what it was as I didn't trust myself not to cry and be able to get any words out. Naturally I googled it just to see what I was in for.
Mine is in the upper vaginal wall and I apparently have some weird layers of tissue/skin that haven't healed after my hysterectomy. They originally treated it as granulation And I've had silver nitrate treatment twice which temporarily heals it.
I seem to have a good gynae/ oncologist here in Cardiff and the service has been pretty good overall but it's amazing how little is known. I've also been fortunate that someone I know has a husband who specialises in hpv research so he offered to answer any questions I might have. Apparently my consultant is well respected in this field.
I should be going back in soon for laser treatment (second time for this) but I'm not convinced it's going to work.
I'm just amazed at how quickly it all seems to develop. The VAIN 3 has just seemed to sprung out of nowhere!
Hi - I also have VAIN3. About 8 months ago I had my first colposcopy. The doctor suspected CIN3 and scheduled me for a cone. While she was in there, she noticed abnormal cells on the vaginal wall as well and lasered them. The VAIN was apparently on the areas adjacent to the cervix so she seemed to think it was all related. Results of biopsies taken from the cervix and vaginal wall confirmed CIN3 and VAIN3.
Fast forward 6 months - my followup colpo still showed some abnormal areas on the cervix. It was unclear to me whether it was areas that were missed the last time or "new" bad cells. Frankly it concerns me either way - either I had these things growing for an extra 6 months or it developed incredibly quickly.
The Doctor seemed to think the laser did the trick on the VAIN, but scheduled me for another cone to deal with the cervix. That was only a week ago, so I am still waiting for results. Im hoping to hear that the vaginal walls were all clear. I will let you know if I learn anything specific to VAIN. I'm also interested if there is anything special I should know/ask.
Thanks for the update. I've got my laser treatment booked in next week but I'm less and less confident these days of anything working as I keep get abnormal results regardless.
I guess each treatment keeps things at bay but like you it's scary how rapidly these abnormal cells grow!
Keeping all things crossed and likewise I'll keep you posted.
Hi i have just been told i have Vain3 ... waiting now on a appointment to have it removed. Feeling a bit worried as begninning of the year i had CIN3 they found a small amount of cancer staged 1A1. Which was taken away with the LLETZ treatment. But after my first check up after all of the CIN issues its now VAIN. Which i understand is the same as CIN but different area?!
I will be keeping my fingers crossed for you for a 'all gone result' xx
There is hardly any infomation on VAIN which is a little unsettling, i didn't even know it had a name till i recieved a copy of the letter sent to my GP ... all i was told in my meeting with the gynae after the colproscopy was he believes my cervix was now clear of the cancer and precancer cells....there wasnt much left of my cervix. But he was getting abnormal results and found a few bad cells he will need to remove from the top of the vaginal wall but by surgery not the LLetz this time. So waiting now two weeks to find out what my date for this surgery is.
Ive just had my outpatients appointment today and they want to try me on Aldara cream for the next four weeks. I can't say I've read amazing stuff about it's side effects but it's worth a try.
I've now got to go to the hospital, twice a week for application. Turns out the area that needs treatment is a little tricky to reach! I've also got a bunch of creams to wash with, numb an area and an antisepti.
It all kicks off next week so I'll keep you posted on my progress.
Will be thinking of you and hoping things get better soon...
such a weird place we are all in...im still not sure how im supposed to be feeling ...kinda plodding along and nodding along with whatever the consultant suggests.
I go from 'everything is fine' to mass manic and hysteria then back again. I was super emotional before the recent laser treatment as it feels like I'm back to a point of unknown again and I've no idea how I'm going to feel about the next round. Also the new consultant this week said something about not wanting to operate as I was young and it comes with pyschotraumatic / sexual trauma. Which just sounds wonderful!
I've also started not telling people the full story, including my family as it's a bit of a coping mechanism. A few close friends and my partner know the full story plus my boss at work which helps.
A few friends have suggested councilling but I'm not sure I want to open that box just yet.
The whole thing is pretty crazy.
So my plan now is legs in the air hoping that the cream does its job and to finally finish book 5 of Game of Thrones whilst waiting for each appointment. #WhatWouldAryaDo
I can relate! Some days im all ... yeah its fine just whip it all out and hopefully its all done and dusted....some days im sick with worry...
Your new consultant ...wow bit harsh! I wish they would remember we are actually people not just a job sometimes. I'm unsure what to say to friends as many keep saying i should be having scans, chemo, radiotherapy etc...and so far its all just surgery every few months...so i get anxious thinking (prob too much) about it all.
lol 'Legs in the air' #WhatWouldAryaDo #BeMoreAyra (I've not read the books....but love the tv series)
I had my appointment on Tuesday with a new doctor who will be administering Aldara on a weekly basis. Only snag is I'm not healing inside so she couldn't do it. Just the process of the examination made me bleed again and pretty much had me in a stiff board position as it was pretty painful....'relax' they say!
As I was the last appointment and she hadn't expected that result (she was somewhat puzzled) I was handed some cream to help the healing and sent home.
Now the next problem was how on earth I apply the cream to my highest reaches twice a day. Turns out you can get vaginal applicators, so my next challenge was asking the local chemist if I could buy some. This turned into an ordeal as the lovely pharmacist took me into a private room to ask a few questions, naturally I started crying as it's all been pretty stressful. The pharmacist was sooo lovely though that she was checking I had friends to talk too, asked about my diet and generally was very supportive and helpful (We looked at vaginal applicators online together) and we talked about how to manage stress.
Vaginal applicators bought as part of a vagina moisturuser pack. So the cream application is a little easier albeit I'm lying on my bathroom floor wondering how the hell it got to this point.
So a disappointing and emotional week, peppered with lovely people who make it all more bareable.
I'm now taking multi vitamins (pharmacists recommendation) just to make sure I'm not missing any vital stuff for healing and searching for ways to help healing inside - some interesting advice from porn stars no less. Turns out salt baths and coconut oil can all help.
Any other healing advice welcome. What has worked for you?
Thank you Pocketpixie, virtual hugs are much appreciated. It certainly helps being able to share with other women online going through similar things. Likewise I'm here if you need me.
For me the forum is a chance to vent as well as hopefully comfort others, at least it feels productive.
I think a planned treat is a good idea and it is my birthday coming up so a few things in the pipeline.
Hope you managed to book something lovely for your birthday?
I'm still waiting for the results so nothing new. Other than im now stalking the post lady, and getting a little stressed out ...people say no news is good news...wish i could settle with that.
I've asked my partner to arrange a surprise plus I've got my old college friends coming down soon fir an early treat so plenty planned!
Me, but i'm on hold until next week to start treatment but the good news is that things are healing. So hopefully the aldara cream will be slightly more bearable.
I'm also hitting the multi vitamins hard as I figure it can't make anything worse.
Glad you have some fun things planned. I have a friends wedding so far.
I received a letter from hospital today.... No real infomation. Just said outpatients appointment booked 6th april. I've rung to ask if that's the results after the operation to remove the vain...or colproscopy follow up. They didn't know just that's it's likely to be nothing to worry over... Feeling this year will be crappy as I'm so confused with it all.
Those letters often leave me more nervous than not. They are always so vague.
Last Year I was called in twice within a few weeks and when I queried it with my consultant he didn't know why and said to go anyway. When I did go the new consultant wasn't sure why he was seeing me either. Must have been a gremlin in the system!
Sounds like it's just a follow up check if it's in April. Fingers crossed that means things are all ok.
Im back in on Tuesday now so that will be day 1 of the new cream. Not looking forward to that.
