More of an update for any other people out there experiencing VAIN as I struggled to find much info when I first got told about it. Also if anyone else is going through similar treatment I’d be keen to hear how you’re getting on?
I’ve had VAIN 3 now for about 5 years now following a hysterectomy for CIN 3 and it just keeps coming back.
Mine is situated in a small spot at the top of my vagina where my scar tissue is from my hysterectomy in the vaginal ‘cuff’.
I’ve had laser (not so good) and imiquimod treatment (a cream applied twice a week for 6 weeks) - which has helped to keep it at bay and imiquimod has by far been the more successful treatment. Although I’ve had to have a break for a couple of years as it does damage the vaginal wall - and yes that sounds as much fun as you imagine.
It’s a pretty horrible groundhog day situation and I’m starting to run out of options which is the scary bit as the next possible step involves more surgery - but I’m not quite ready to face that one yet.
I was also told about a long-named-cream today that early research is showing is good for VIN (vulva) treatment so that could be an option.
Anyway feeling a bit flat and making Christmas biscuits to soften the blow, so any good news also welcome!
Hello thanks for sharing your experience , I really hope they could just figure out an antiviral for the HPV with so many developments on the virus front because of Covid I am hoping that it will help speed up the knowledge on virus as a whole and we can soon have a final cure for this horrible hpv.
On the meantime I really hope that the treatment that they’ve offered you will give you and end to this again thanks for sharing
I had LLETZ for CIN3 and CGIN and still HPV positive after 6 months no cell changes that is good news but this stupid virus seems to like me a bit too much. Lol
Hi, i am 13 days post op from having hysterectomy and salpingectomy. I also had cin3 and cgin but for 7 years once the hrhpv got hold of me the damn thing wouldnt let go! My family is complete and it was the safest option so hopefully my results are clear and i can finally put it all behind me. Hope you get some good news soon and the virus buggers off
Hello Jenna.84 , hope you’re feeling OK and recovery is going well . HPV just seems to stick for some people not even Lletz helps
. Were you positive always or did you have some negative results for hpv in between?, were cell abnormalities also present after Lletz? Or managed to clear them and they just came back?
Sorry for all the questions just trying to figure out the different possible scenarios for CIN3 and CGIN. Thanks and you must feel so relieved after surgery take care.
Hi, ask away if theres anything i can tell you that can help.
I had high risk HPV for 7 years cin 3 and cgin the letz got rid of the cin 3 but i had borderline nuclear cell changes in the endocervix. Which turned out to be CGIN. I had 7 lletz treatments in 15 months to try get it but it was so deep so hysterectomy was my only option.
Waiting my results and final diagnoses so hoping its all clear. Hope your ok its so daunting isnt it. CGIN isnt really talked about as much so i round it hard to get any support and i felt like my consultant was sick of me when i asked any questions so i suffered in silence through it all
O wow 7 Lletz treatment that is a lot can’t imagine the level of stress you went through with all this specially with a consultant that made you feel that you couldn’t ask questions definitely he or she is not in the right job. I am lucky my gynecologist is incredible nice and understanding she is brilliant and is giving me the option of Hysterectomy or Lletz if I have cell changes back, I think I will probably try 1 more Lletz and then Hysterectomy if I get bad results again. Already had my kids and I am 43 .
Thanks for answering my questions. Is true that there isn’t much information about CGIN is probably a small special club Lol. Good luck with your results let me know how you get on
Ah thanks so much i def will.
The colopscopys and biopsies were a walk in the park its the waiting for the results some have taken up to 6 weeks and its a form of mental torture. Also let me know how u get on fingers crossed for an all clear. The best thing is ur been watched closely and looked after and given the options x
Hi, ah really that sucks! I have severe anxiety about the first vault smear.
Im struggling with the whole hysterectomy thing i have a feeling of emptiness and i keep thinking of lying on the bed in colposcopy and seeing this nothingness on the screen at the vault thing.
Will they take biopsies at the vault no one has explained anything to me.
Im 3rd week of recovery and i have a nasty infection now its really took me from all ends.
Thank you for the well wishes and id appreciate any support re the vault smear im so scared x
Hi Jenna, I completely understand you feel anxious, it’s all pretty scary when you’ve not experienced it yet!
I didn’t know what a vault smear was until it happened and I now have 6 monthly check ups in colposcopy. For me they are pretty routine now and don’t cause me too much discomfort. I think I’ve also learnt to relax…just!
I’ve probably had about 3 biopsies in 6 years, and only when they had cause to do so. They generally just sting a little with some light bleeding.
Well I’ve just completed my 6 weeks of Cidofovir treatment which is a relief, as it has caused a fair bit of bleeding in the latter sessions but they were generally happy with it all once they could get the cream to stay in place.
On the last day I had an examination and my consultant found something that meant he wanted me straight in for a MRI scan. So that was pretty scary…worse bit is telling other people.
He said it ‘could’ be inflammation from the treatment (as after 18 treatments in 6 weeks in the colp position) things were getting pretty angry down there). I also mentioned the pain I’ve been having since October, around my tailbone / inner bum cheek, which the GP had said is likely to be sciatic pain as it was also traveling down one leg. Whether it is related, I guess I’ll find out soon. Either way it’s been no fun.
So today I had my MRI and now I have a two week wait
Hello well done for finishing the treatment doesn’t sound like an easy thing to do at all , hopefully is just inflammation from all the treatment what your doctor saw
And I had sciatic pain during my 2 pregnancies and it sounds exactly like you described it so your doctor is probably right to suggest is that. Good luck
So a bit of a fast forward today. I had a phone call this morning asking me if I could come in today. I knew it was bad news as there was an extra nurse I haven’t met before in the room.
Basically the MRI showed a mass they think is highly likely to be cancer. So they are sending me for a PET scan to confirm staging etc. and expect treatment to start pretty soon after!
The mass is most likely pressing on my nerve, hence the pain.
So a bit of a strange day coming to terms with what was said and then telling close friends and family. I think I feel worse for having to give them bad news!
I am so sorry for your news I was hopeful thinking it was just extra precautions from your doctor but glad he made you go for the scan and you can now start a treatment plan on time. Must be stressful for you and I know what you mean with telling them bad news us women I think we always try and protect everyone around us, but now is your turn to get that . Please keep in touch and let me know next steps . Take care and stay strong
can’t imagine the level of stress you went through with all this specially with a consultant that made you feel that you couldn’t ask questions definitely he or she is not in the right job. I am lucky my gynecologist is incredible nice and understanding she is brilliant and is giving me the option of Hysterectomy or Lletz if I have cell changes back, I think I will probably try 1 more Lletz and then Hysterectomy if I get bad results again. Already had my kids and I am 43 .
