My update and a question about recovery and scarring

Hi. Welcome to the "Club". I had the same worries as you, it's terrifying. I had a WLE in March for SCC vulva cancer and VIN3 in Exeter (lovely lady surgeon). It took several weeks for me to recover (still not back to normal). My stitches split & had a 2nd op to remove Granulated Scar tissue which resulted from my split stitches (not restitched) in May. 

I had 7 lymph nodes removed on both sides. One side had fluid which was drained off. No other problems (so far). 

I had 3 nasty infections, was on 2 lots of antibiotics, not nice.

This is what I'd recommend:

When you leave the hospital...

1. Don't wear nickers (I still don't wear them after 6 months, lovely)

2. Walk very slow & careful no big strides.

3. Get a cushion to sit on & something slippery to put on car seat (i bought lots of disposable bed mats which soaked up the blood and you can slide without ripping your stitches and less pain, I put it  over the cushion). DO NOT TWIST, move the slippery slide sheet around with you on it. Recline the seat back, legs open, sit on your bum cheeks not upright.

3. Get in/out of car slowly and gently with help lifting you up.

I sat/lay on sofa with disposable bed mats under me as bleeding for a few weeks. Legs up, reclining back, big cushion behind me, legs open "frog like". Couldn't (still can't) sit properly for a long time. Cushion goes everywhere with me now.

I used lots of disposable bed mats, very helpful. 

Laying is fine, I kept legs open resting knees on a cushion each side. Couldn't sleep on my side for long time.

Walking was slow & painful for a few weeks, little steps.

Be gentle listen to your body.

I showered in a couple days when got home. DO not spray water on wound, let it gently trickle over it, not on it or in it. Do not bath for a few weeks. No shower gel /soap, only warm water.

Toilet, do not wipe, gently dab or get a spray bottle and gently spray warm water above wound (not on it) when or after peeing. Dry with hairdryer on cool setting. 

Every time I sat /lay my legs were open for fresh air and keep dry as possible. 

I was worried I wouldn't wake up after GA too, but all was ok. The anaesthetist was lovely. 

After a couple weeks I used my Sitz Bath (warm water only), then dry with cool hairdryer (still use it now).

I love my spray (Peri) bottle (portable bidet). Still use it now. Don't spray directly on wound until completely healed.

I bought my Sitz Bath & spray (Peri) bottles from First Days Maternity.

You can buy Disposable bed mats online or pharmacies.

Sorry for all the info, I hope it helps and wishing you a speedy recovery. Anything else you wanna know, just ask xxx

Oh my…. I know I wanted specifics… now I am really worried.  well not worried, concerned as I was thinking it wouldn’t be bad.  But I guess I’ll have to rejig my mental thoughts about it.  

Thank you sooooo much.  I guess my 8 weeks recovery thinking is out of the window, 

I have a sits bath, I have a bottle and will get some pads.  

when you say ‘bleeding’ can you describe this?  Was it from the wound?  And I suppose if you were not re-stitched then this would.  I’m hoping I’ll be stitched.  But I suppose once it’s cut off then that’s the recovery thing.  

Again, thank you so much.  

I’m back agin,  sounds like you been through the mill.  

can I ask: 

your age, working status, do you have good support and finally, which part of the vulva did you have removed?  Was it the outer part?  Mine is the labia so hopefully they won’t take any outer vulva and I’ll have some cushioning.  

I ask the above just to gauge stuff.  I’m optimistic about my recovery but think I need to rethink it a bit.  

thank you x 

This is so helpful, thank you so much for all the tips and honesty xx

In our situation, I’m finding honesty no matter how mentally upsetting and draining is the way to go.  

I’ve researched my issues so I know every thing about it.  It’s helped me cope.  Even research into images etc which are not nice but are helpful for me. 

WE HAVE GOT THIS !!! We can deal with it.  We are not alone.  Xxx

Hi, please don't think you might have the same experience as me, everyone is different. I can only tell you my experience and what helped me.

I bled lightly for the first couple weeks, not heavy, but enough to need the bed mat / pad as I didn't want to stain the sofa, clothes etc. I also had some discharge. 

My WLE was left side labia going slightly into the vag and close to perenium 3cm x 2cm. Stage 1b. Luckily caught early. Started as VIN3 then turned to SCC Vulva cancer. 

I'm 61, married, he has helped me massive. I'm very lucky. I'm retired so didn't have to worry about going back to work. 

My recovery was longer because of the 2 infections and stitches opening. Not everyone has infections or stitches coming apart. Also the Granulated Scar tissue took longer to heal.

I was told about 6 weeks to heal, sadly for me it was longer.

Just take plenty of rest, no lifting or heavy work, relax often, do as little as possible. I slept lots in first 3 weeks. It takes a lot out of you. Allow 2/3 weeks before you start to feel a bit better.

Drink lots of water, eat healthy, fruit & vegetables, kimchi, saurkraut, beetroot, Flaxseed,  I Took Yakult every day. Vitamin D and other vitamins if you like.

You'll probably need paracetamol and ibuprofen, I did. 

I understand all the anxiety and wanting to know as much as possible, I'm the same. 

Hopefully you'll be fine within 2 months or less. 

Rest lots and listen to your body xx

Oh thank you.  

we’re lop sided twins or soon will be!!! Mine is the left labia, and possibly the same size.  Literally my whole labia is a melanoma!! So I am expecting them to take a chunk of good tissue.  The consultant says about 5mm around it.  Just to make sure, so it may come close to the vagina etc.

Thank you for answering me.  Now it’s getting close, the anxiety is kicking in. Like you I have a wonderful partner, he doesn’t work so he’s going to be my rock.  I’ve supported him in his time of need, so now it’s him to return the love.  

I’ve given him some of your info, ie sitting like a frog, no knickers  , cushions etc.  so he can be prepared.  

thank you so much x 

Lucky you have a wonderful partner, ask him to do as much as possible for you (cooking, cleaning, getting something from upstairs etc). I only went upstairs once a day, very slowly step by step. Even bending down to pick something up you mustn't do! Keep at waist level.

It's hard not doing your normal everyday stuff, you have to stop yourself. Even stairs are difficult. You have to get out of habit mode.

I've not heard many having Melanoma, but all vulva cancers aren't nice. I think we're all quite rare in some form or another! Never heard of it before I got it.

They usually cut out a 5 or 10 mm margin to make sure. I said get it all out, I want it gone !! 

How old are you?

P.S. I love not wearing nickers anymore!!

You're welcome, if you have any questions just ask xx

I’m 54.  And a police officer!  Luckily I’m restricted due to other medical issues, this is literally just another one to add to the list!!

Im office based so thats another thing to contend with, but we have riser desks which I can use.  

Vulval cancer is 1:1500 in Uk.  melanoma is 0.2 in 100,000!!  

Very rare.  My consultant had had others come in for a look!  I don’t mind I’m all for teaching.  

I called it Veronica as it’s better when talking in the office.  The men know me very well we’ve worked together for years, and I’m not bothered about anyone knowing about it.  

I want it gone as well, and I’ve researching everything!  

I knew cancer could be anywhere, but yes we never think, I’m now an advocate telling women to check their bits!!  The menopause group at work gets a bit tmi, but it needs to be out there, we check our boobs.. so why not our other parts.