Vulva cancer

Affected by VIN (a pre-cancerous condition) or vulva cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

The future following vulvectomy and lymph node removal

LauraKR
Posted by

Hi

Ive just joined and am wondering if anyone has experience of a vulvectomy and lymph node (groin) removal. I had my surgery at the end of March.  

i was diagnosed with cancer of the vulva 6 months ago aged 33 and have really struggled to find others who have had similar treatments and particularly who are of a similar age. 

ive been finding it so hard to readjust to my ‘new normal’ and would be great to find someone else who has been through  something similar? 

Thanks, Laura 

SarahT57
Posted by

Hi

I had half my vulva (including my clitoris) and part of my vagina removed and skin grafted at the end of January. I also had a lymph node removed but that hasn’t had as much impact on me.  I’m afraid I’m a bit older than you as I’m in my early 50s.

It is very hard to adjust, isn’t it? I’ve healed pretty well (and am 2 months further on from you), but I wouldn’t say I was back to “normal”.

What support do you have? I was lucky enough to get support from a gynae nurse specialist and a woman’s physio, who have been quite helpful on the practical / physical side of things.

There are a few of us in this group who have been through similar, I think. It’s not a fun club to be in though, is it?!

xx

LauraKR
Posted by

Hi

thanks for the reply. I have had the clitoris removed and the top part of the vulva. 

And as part of my lymph node removal I’ve had nerve damage which has made the the fronts of my thighs completely numb which hasn’t really helped things either!

i haven’t had any support in terms of physio but am thinking this is probably what I need so I may see if that’s something I can access. Did you have to request that or were you offered it? Macmillan have been supporting me through the hospital which has been great actually.

Everything is healing well apparently, to be honest I’m finding it all really difficult mentally in terms of the changes and I have only just started to have a look and I’ve found it all quite shocking. My husband has been great throughout the whole thing but I really don’t think he understands how big a change this is actually. 

Definitely not the fun club ;) xx 

SarahT57
Posted by

Hi

I was referred to the physio while I was still in hospital, so maybe ask Macmillan or your GP.

I went through a phase of having to use a lot of creams for discomfort, and I found frequently looking at the scar in a hand mirror very upsetting.

Sorry you’re going through this x

LauraKR
Posted by

Glad I’m not alone in struggling to look.

I’ll speak to Macmillan then about being referred for physio.

Thank you x 

Penloc
Posted by

I have never looked at myself so much as now and I'm 75.  All inhibitions disappearing

Keep smiling Laura, life is worth the struggle

Judith

Penloc
LauraKR
Posted by

You’re right there-thanks Judith :) 

I’m very used to different people having a look all the time so need to get used to having a look myself!! X

elmslav
Posted by

Laura, I would say the removal of my clitoris, at that time, was the worse surgery I'd had to that date. It really was the one that messed with my head the most and felt no one really understood how I was feeling. Heck I didn't even know how I was feeling. I looked after about 1 1/2 weeks and was mortified, it was so swollen I felt like Frankenstein. I balled in my mother's arms for hours never wanting my husband to see everything I was feeling.

You will find your new normal and it will suck sometimes, especially at your young age but it definitely gets better. Talking to a therapist may really help. We are always here for you too.

I've now started seeing a sex therapist and she has told me that our clitoris tissue is truly so much larger than we originally thought it was. If you google actual size of clitoris tissue you will see how large it really is...you may still find intercourse very pleasurable. I did for quite some time; you may need to be introduced to dilators but in the end if your goal is for intimacy to come back into your life it really does work.

Thinking of you,

Lisa

Lisa from USA Michigan

LauraKR
Posted by

Thanks Lisa

My consultant has mentioned the use of dilators so we will be discussing that in my next appointment as he has said it is something I will need to do.

I think they do some sex therapy stuff through my hospital so am going to ask to be referred to that. My surgery was a few months ago now so I feel like the way things look now is how it’s going to be and I still really don’t like to look. I feel like I’m going to really need to explain things to my husband before he sees too as I don’t want it to be a shock to him and got him to not know how to react.

I didn’t know that about the clitoris either actually-What’s been really apparent through all this for me, is how little I actually know about my own body-which is something I’ve never had to think about I suppose. 

Hoping that things will get easier over time like you say and I’ll get used to my new normal - think because of my age too I’ve felt like everything has been so unfair, but I realise that’s the case for absolutely everyone going through their own cancer treatments. 

Thank you, Laura 

SarahT57
Posted by

Hi  

I’m using dilators too. They’re not like I expected - they’re just a set of non-vibrating vibrators (if you see what I mean!) in a range of sizes. So you start small and then gradually increase the size. You can order them from Amazon but I got them on prescription from my GP - mainly so my kids didn’t find them in my “recent orders”!

My trouble is getting round to using them. I’m supposed to do it 3 times a week, but now I’m back to working full time, and kids at home at the weekend I never seem to find the time. And although it’s uncomfortable rather than painful, mentally it’s tough - it’s medicalising something that used to be fun.

My gynae nurse did say that some people just go to Anne Summers and buy vibrators in a range of sizes!! I’m not sure if that’s better or worse, but the thought made me giggle!

xx

LauraKR
Posted by

Hi  

Thanks for this! As I was wondering what they would be like-I have visions of the ones on prescription being some really medieval looking contraption for some reason so was wondering if there were other options out there that might be more suitable and less scary! 

Im not sure how often I’ll have to use them yet-thought they did say they will become part of my routine like brushing my teeth so I’m assuming fairly regularly and like you say, I think the whole thing will be really daunting as I’ve stayed away from from even looking down there so this is going to be quite hard work I think - all steps in the right direction though! 

I’ll probably be ending up in Ann summers, trying to pretend it’s my decision and something I want to be doing!!! Xx