Vin surgery

Hi, firstly I’m sorry you’re going through this. 
I too had to have a wide local excision to remove VIN. I was gutted to have to attend alone, but I can honestly say it wasn’t as bad as I expected. My sister dropped me off, I made my way to the ward and by the time I had been shown to my bed and got changed into my gown I was ok (ish). I took a word search and my iPad, but didn’t actually use them. I spent my time doing things on my phone. Friends and family left me with a constant flow of text messages to keep me busy  

With regards to your question around disfigurement- honestly... it looks pretty much the same down there, but it is tighter and the only way I can describe it is the side closest to my back passage is further forward. Mine was at the back there though hence the tightness in that area and it seeming to have moved forward a bit. All of that said I can honestly say if someone that hadn’t seen it was to take a look I don’t think they would think it looks odd, it’s more that I know exactly what it was like and it’s changed a little. 

With regards to then removing the area, plus 1cm, I have no idea how it works! But it did. My area was 2cmx2cm plus they aimed for a 1cm margin... I have no idea how they took so much from such a small area, but somehow they did. 

My biggest piece of advice- take regular pain killers for the first week. I slept like a baby the first night and woke in the most almighty pain! I then learnt to set alarms to take my pain relief as I found it was manageable if I didn’t allow the pain to build up. 

Good luck

Thankyou so much for sharing this, it's calmed me alittle ( until Tuesday morning!)  Can I ask how long you were in hospital for? The information leaflet they gave me says 2 to 10 days!!  I'm hoping  to be out by Friday as its bank holiday weekend .

Have you remained clear since the surgery or as it come back?  What with this and the AIN ii just see a lifetime of surgeries and treatments to keep of  top of the  both .

No worries at all, if there’s anything I haven’t mentioned feel free to ask and if I can answer then I’m very happy to help. 

I came home the same day, but my new hospital have made it clear that’s not how they work. They have said 1-2 days. I think it really does depend how much you have removed and how quickly the individual recovers. 

I only had mine removed in February so I’m only 9 weeks post op, so I can’t comment on remaining clear as haven’t made it to that point yet. I am off to have some more removed next month as my margin was too close on one side  I know exactly how you feel, I often worry that this is going to be my ‘new life’. 

Do you mind sharing what the symptoms of AIN were? Like how did you know you had it? Since my op my anus has been very uncomfortable. I’m so worried I could have something going on there, but feel like no one is taking me seriously

With me it was the AIN first. I've updated my profile with my journey. Basically I thought I had piles! It started with a itchy sore anus then a small lump. I started using anasoll to treat.It was only when the doctor asked to do a rectal examination that I was told otherwise.

Back in 1996 I had pre cancerous cells removed from my cervix. I was 24 at the time. I think that was when the HPV virus shown it's ugly head. The doctors have said the virus then lays dormant for years.....24 in my case . Your story with the vin seems very similar to mine with the AIN. I had 3 lots of surgery in 6 months . Can I ask where you VIN is? Mine is currently just inside vagina walls but I'm starting to get the  unmistakable ' itch' going between my outer and inner lips, so I'm now worrying that its spreading up. Back with my collerectal I did ask if I would be able to have a shot of radiotherapy to my bum to hopefully kill the cells? But he explained it's a very fine line between the pre cancerous cells and stage 1 cancer but in the treatment world is very different. To have radiotherapy you need to be under an oncologist and theres alot of ' red tape' with regards to radiotherapy/chemotherapy. Radiotherapy would only be given once because of the area at to which it was treating. So the way I see it theres not much of a treatment option unless it turns into the big C.which non of us want. Xx

I didn’t realise we could look at profiles until this morning lol, I shall take a look ️

Mine isn’t itching, but it’s incredibly painful to go to the loo and after I’ve been. It can ease up a bit in between, but it’s always there. I too have considered whether it’s piles and have been using anasoll for the last few days, but it doesn’t seem to be helping at all! I’m really hoping it isn’t AIN! It’s odd that it started immediately after my op. I did have some symptoms here and there prior, but nothing in comparison to this. My consultant said that my Previous consultant would have looked during the procedure, but when I asked my nurse she said it wasn’t checked I’ve told my new consultant this, but he said it doesn’t matter what anyone said, they would have checked it. I will ask my new nurse for advice and see what she says. 

I too had cells removed from my cervix, mine was back in 2013. I’m not sure if I have the virus or not. My GP initially referred me as she thought I had lichen sclerosis or lichen planis. I asked what type of VIN I had and my previous consultant said there wasn’t any comment. I’m now wondering if it is the virus as I’ve had the cells on my cervix too. I’ve tried to research whether the HPV vaccine may help at this point as I would be happy to try that due to the lack of confirmation of the skin conditions previously suggested. Some places say it wouldn’t help, but others suggest it could help protect against future infection of other strains. What I can’t work out for sure is whether it would help protect against future infections  in the event of the virus not being active at the time of vaccination. So could I get it whilst in the dormant phase and that then stop it reoccurring. 

I’m not very good with the technical terms, but my VIN started on the left, but at the back. So it was at the opening of the vagina, closest to the perinium. When they done my op they found more, so it was all up the left side, from the clitorous to the perinium, slightly up the right hand side, slightly up into the vagina and between the vagina and the perinium. (Excuse my spelling) I also had the itch between my inner and outer lips along the left side, which probably explains the extra tissue taken from there. 

Mine has progressed to cancer, however I have had an intermittent itch for around 12 years that was initially diagnosed at dermatitis. I then had a 5 month delay in being treated due to COVID. Mine only contained a small amount of cancer, which was successfully removed, but the margin wasn’t big enough hence the further treatment. I haven’t been offered any radiation at this point xx

Just had a read of your profile... I too have fibromyalgia and wouldn’t be at all surprised if I had ME as I’m shattered 24/7 and have been for years! Xx

Hey we could be twins lol! I've had fibromyalgia since 2012, the chronic fatigue was diagnosed in 2018 after many trips to the g.p and telling them this " tiredness' isn't normal. It got to the point I was falling asleep on the bus to work, even at work on a few occasions! I was finally referred to a chronic fatigue nurse for assessment. This basically involves lots of questions. These are then ddiscussed  in a MDT meeting. If i remember rightly i also had a number of blood tests to check certain vitamin levels.. As you probebly know theres no magic pill to help you feel better, it's all about pacing yourself. If I have a day out somewhere I know the following day I'll feel totally wiped out! So I plan ahead...I make sure the following day is my 'recovery day''  which I tend to spend sleepiing, these days are tough but worth it if I want to lead any kind of normal life   xx

Yes I've also thought about the hpv vaccine. I'm going to mention it to my consultant Tuesday to see what he thinks.  

Going back to VIN/AIN I did ask if my AIN procedure could be done at the same time as my VIN? My Gynaecologist said it was possible but it's the planning of getting 2 surgeons available in theatre at the same time! I think the problem is one area is Gynaecology and the other Colorectal so different specialists in different areas. I don't know if I mentioned I had a call from the hospital Thursday offering me a date for the AIN ( 5th May) but couldn't accept due to my VIN surgery.

Maybe ask your consultant if they could refer you to colorectal?  Express your concerns, at least it will put your mind at rest knowing it's being checked.

When I was diagnosed with AIN they told me they automatically refer you to Gynae to check for abnormal cells so I wonder why they don't do it when it's the other way round?? Xx

P.s I've just ordered myself a peri bottle from amazon! Oh the Joy's! Lol

I was only diagnosed with fibromyalgia last year, but that’s after many years of symptoms. I didn’t know much about fibro at all and then my doctor suggested it may be that. Now she thinks I may have pots too! I’ve slowly learnt to pace myself or pay the consequences! I think I’m doing everything as I should if I was to have chronic fatigue, so I guess a diagnosis isn’t too important right now, but once everything is sorted then it would provide answers. I’ve suffered chronic fatigue for as long as I remember. They’ve put it down to all sorts over the years- stress, anxiety, vitamin D deficiency, but as you know even when these things are corrected the fatigue still persists! I’m the same when it comes to falling asleep... I’ve been very close at college  on several occasions, but make an excuse to stand up to keep myself awake xx

It’s definitely worth asking! If you find out anything before I do then it would be great if you could share the info. If I get any info I’ll do the same. 

Its such a shame they can’t work on both areas at the same time. If you’re anything like me then I would just want it all out if the way. I don’t like the recovery period or to have it hanging over me. On the plus side it would probably be rather uncomfortable to have both done at the same time!

It feels like everything is taking such a long time at the moment. I’ve had another 7 week wait from seeing my new consultant to getting back in to widen my margins and and check my nodes.

Nobody has ever mentioned a referal to check for AIN, it could be the hospital I was at though. I’ve found them far from helpful and feel I was treated appallingly! When I spoke to my new consultant (I’ve been referred to a different hospital) he insisted it would have been checked whilst I was in theatre. I’ve asked my previous nurse on more than one occasion and she said it definitely wasn’t checked. Good idea about asking to be referred to colorectal! I just need someone to check me over and tell me all is ok and help reduce the pain I’m in! The idea of them having to insert anything to check it terrifies me, but am at the point where I just need to know what’s going on. 

Oh the joys! I wasn’t advised to get anything like that last time, but my new nurse has already suggested getting something. This nurse seems so much better than my last so hopefully with my knowledge of my previous experience, along with the correct support I won’t have any nasty surprises xx