Post Op

Hi

I'm due to have a total vulvectomy within the next couple of weeks (plus lymph nodes and AIN lesion removal). I'm really scared and worried about how I'll cope after but I'm trying to be the strong one for everyone around me. If you want to talk about it feel free to message me. xx

Hi  actually I'm having a bit of a shit day.  It's 3 weeks exactly since my surgery and I am a little uncomfortable today.

Yeah it's rubbish all this.  The only positive is I have not been in pain. Just uncomfortable. Can't sit  walking is uncomfortable, just got a donut to sit on but it's not as comfy as I hoped.  I am sad it's happening to you also. Also you don't have to be strong for anyone else. Take all the support when you want it. 

Where and when is your surgery?

Take care 

It'll be at Birmingham City Hospital even though I'm from Stoke. My consultant said the middle of February but it could be sooner if there is a cancellation. I had a cushion from a company called Putnams when I had a load of biopsies removed in November - it might be worth having a look on there website to see if there is anything they make that could help you? x

Thanks for that I will have a look. 

I had mine in The London Hospital but I live out in Essex.  It's not an easy journey travelling to London.  Do you know what the cause of yours is?

Have they explained everything to you and are you OK.

As I am ahead of you is there anything you want to ask. 

I was originally told I would have a wide excision including removal of my clit (that was huge for me and still devastates me). Then it became removal of all the  lymph nodes on one side and some on the other. 

Honestly my lower body is scared like the road map of London although I can't see it and don't really want to. 

Tips for Hospital x eye mask x long phone cable x snacks x a nice smelly spray for your pillow x mags x 

Take care x

Kind of but I am waiting for a phone call from a specialist nurse so I've got a list of questions ready for that. 

I've got HPV and have always have pre-cancerous changes - first on my cervix then on the wall of my vagina and now my vulva. I've got VIN 3 pretty much all over my vulva and some AIN 3 lesions at the back. Some of the VIN 3 changed into cancer last year which is how I have ended up here.

How long were you in the hospital for if you don't mind me asking?

I'm going to make a list of all the stuff I need to take with me - thanks for the tips. xx

I was in hospital for a week. 

I also took my night moisturiser instead of my daily one. 

I took in some individually wrapped chocolates my Daughter bought me. 

I have had for about 7 years Lichen Scelerous. Most flare ups are treated and go in a day or 4 at the most but one patch did not.  A biopsy showed it had developed legs. Vulva Cancer. 

Ask anything you want and I will answer 

X

Did you have a catheter? I've been told I'll be in the hospital for at least 2 weeks and will need to have a catheter. I'll be on complete bed rest for the first 7 to 10 days to make sure it heals.

Have you had any reconstruction surgery? Can you recommend what I should wear after and what I can use to keep the area clean? 

Thanks xx

Yes I had a catheter.  It was removed on day 3. It was easy. Just relax breathe in and out  and you feel a plop and its out.

I had drains also in both sides of my groin from the lymph nodes removal.

I was helped out of bed onto a commode later that day. The small drain was removed 2 days later,  it's uncomfortable but did mean I could walk to the toilet. 

On day 6 the large drain was removed.

I just pour water over myself when I go to the toilet.  Then pat myself dry and use a hairdryer on a low cool setting to completely dry myself.  I don't wear underwear.  Have not been out yet. 

I have a bidet at home   it's wonderful. 

Thanks for answering...if you ever want to chat just message me. I'm working from home at the moment so I'm constantly on a laptop.

Take care xxx

I'm at home recovering 

You can message anytime also.