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Hello! I feel like a bit of a fraud joining this group as I have not been diagnosed with invasive vulvar cancer.
I had terrible itching for quite a while and was diagnosed with thrush. I was prescribed various thrush treatments but then noticed the skin on my vulva was changing. To cut a long story short, I saw another GP at the beginning of February this year who made me an urgent referrel to see a vulval dermatologist. I had two 4mm punch biopsies on 24th February and two weeks later had the results which showed I had Vin 3. The dermatologist then referred me to a gynaecological oncologist who recommended that I had a partial vulvectomy which took place last week (15th April). I am now recovering from the surgery during which I had both my left and right inner labia removed, together with part of my perineum. I had two further biopsies taken from the remaining part of my perineum.
I have to see the consultant in 4 weeks' time when I will receive my results to see whether there is or has been any invasive cancer.
I just wanted to get in touch with women who have experienced vulval surgery. I'm a bit shell shocked by everything. I'm not in too much discomfort, but I feel very weepy and frightened by my wound if that makes sense.
Anyway, hello to everyone - I'm so glad I found this site!
Don't feel like a fraud. Most of us join before we get a definite diagnosis - usually at the biopsy stage when everyone is chewing their fingernails. We've all had bits of ourselves cut out. One thing we all seem to have in common is the fact that it seems to come out of the blue - it's not somewhere we've ever thought about in terms of cancer.
It's good your'e not in too much discomfort but I do understand the weepy. Talk to the dogs (they're more understanding than a lot of people!) I found I couldn't bring myself to tell most people where the problem was so this group was a godsend - that and my Jack Russell - the most sympathetic listener I've come across!
In my experience consultants are not the most sympathetic when it comes to concerns about appearance etc - but my hospital has a couple of specialist oncological nurses who know perfectly well how it's the little things that really get to you. I found them very helpful.
Keep in touch and let us know how you get on. Thinking of you.
Thank you for replying! I know what you mean about the dogs - I just can't wait to take them out for walks again.
I am finding 'this problem' a bit difficult to deal with. While recovering from the operation, it's the little things which are getting to me - going to the loo is a mammoth task and setting up a mirror with antiseptic swabs and a torch to make sure I'm clean without disturbing my wounds is a nightmare. I seem to have been able to deal well with gross things for other people and my animals, but dealing with myself in that area is something I'm finding really tough. Just looking at my wound reduces me to tears.
With my sensible head on, I know it will get better, but I'm feeling rather fragile at the moment.
Thanks for listening!
Might be worth contacting your practice/district nurse to see if they have any practical tips.
My surgery was not, I think, as extensive as yours but I relied heavily on lots of warm water from a shower head, a hairdrier on cool for drying and steadfastly tried not to look, especially in the early stages. I didn't use antiseptic swabs at all, though I did use sterile saline solution on the wound itself. For peeing I got a purple whiz which worked very well (see amazon under whiz). Get as much fresh air on the wound as you can. Lying around with no cover (preferably when no-one is around unless they are very good friends:-)) letting the air get to it is good.
Wounds always look horrid in the early days - I had both groins reopen which was not pretty but they just suddenly started to heal after a long and despairing wait, needless to say the day after a load of dressings I ordered arrived!
Hang in there!
After reading both your previous threads I thought I might join.
I'm 25 and recently diagnosed as having VIN 2 &3 and have had it by all accounts for the last 14months but have been misdiagnosed!!!
My self confidence is already rock bottom, I am due to get married in August and am unable to be intimate with my part because of how I feel.
Am now scared and apprehensive of the surgery to come and what to expect?
My first smear has also come back abnormal so I am beyond worried that I'm going to get cancer or be unable to have a normal sexual relationship and have children???
any words of advise about what to expect from my surgery would be much appreciated as I feel very alone in this! even though my fiance is AMAZING!
It would be nice to hear from women going through the same thing!
sorry you are having a rotten time,i completely understand the anxieties you have., as have recently been through them all myself.
When i was diagnosed with vin3 i had never even heard of it.I was initially treated by GP for thrush and bacterial infections.I had a nagging feeling something wasnt right so saw a differnet GP and got refered to hospital.
I had an extensive wide local excision.Stopped in hospital one night .Pain was well controlled and had no problems
For the first 2 weeks i just lay on bed most of the time.As other ladies have mentioned it is important to let air get to wound.Although a bit undignified it really helps.Every time i went to toilet used a showerhead to shower area or used a jug of warm water.Toilet paper when having a wee wasnt an option so used a hairdryer on a cool setting.I had dissolvable sutures and was lucky i quickly healed.After the first 2 weeks it was very much a case of listening to my body and gradually built up walking.I started to drive short distances after about 3 weeks.I did have 6 weeks off work which i defiatley needed.
recovery rates do vary depending on how extenive the surgery is.
Unfortunatly as well as vin3 i did have a very small area of early stage invasive cancer.This was thankfully all removed.It wasnt so much a shock to me to be told this as i was warned of this before surgery so i had some time to prepare.It was just a huge relief to know it had been removed.
Although the margins were clear to reduce the risk of reoccurance i did have further surgery 3 months later to get a wider clearer margins.This surgery was minor in comparision and as i knew it was preventive surgery flew through it within 3 weeks was back at work.
I was terrified at the thought of having sex ,fortunatly my husband had no issues and was very patient.I took my surgeons advice when it was safe to start intimate relations again ,even so it was weeks later until i plucked up the courage or even felt like it.
Its 4 months since my second surgery and i hope it reassures you when i say i am now leading a normal life again .I have a healthy intimate relationship with my husband and we are also trying for a baby.I was told pregnacy would cause no harm and my chances of concieving have not been affected.
Its a scary journey to go through but you can get through this and go on to lead a normal life again.If you want any support i am here!
hope ive helped a bit
Hi, just saw thse posts and thought i too would take the plunge and join! I am a 39 year old mum of 2, and have recently been diagnosed with VIN 2/3. I also have had my latest smear comeback as abnormal. regarding treatment, my consultant has given me some cream called Aldara to try for 12 weeks, this is to start and as it is not always successful i may have to have surgery at a later date. this is to use on my vulva and it is very sore and itchy and uncomfortable but i am trying to persevere (on week 5) . re the abnormal smear they are going to do a colposcopy in 6 months as it is a mild abnormality at this stage.
Im sorry to hear of your worries Hollie, especially as you are about to get married - so glad your fiance is supporting you!
my partner is very supportive too although i feel bad that i cant even think about sex! would be much too painful plus psychologically i feel really fed up and not in the mood!
its good to feel that you are not alone, other people are going through the same/worse things.
my next appointment ill be in may 2011 to see if this cream has done its work or if i need surgery. do you know when and what you need to have done Hollie?
best wishes to all
Its been a few weeks now and I've been in for my surgery!
Had a partial Vulvectomy where they have removed alot of the lower half of my labias and perineum.
I had extensive HPV on my upper labias which even though I have tried every treatment under the sun to get rid of them they were still present!!
(Aldara caused me to have a major illergic reaction so had to stop)
During the 40min Op I had those burnt away! whilst the VIN 2&3 were removed and I was stitched up.
Spent two nights in Hospital due to Morphine induced complications and got to go home the other day.
All was well until I felt more sore than usual and checked with a mirror to find a load of stitches had disappeared?!?!?!
My body must have either sucked them up or split them?? lol!
Either way I've been left with open wounds that are very sore! and nasty to look at as I honestly can't make heads or tails of what the surgeons have done and its very upsetting to see! :(((
and am due to go back to the surgeon tomorrow to see what can be done, I defineatly do not want to heal in the state I'm in now!
Going to the loo has been very difficult even though I'm on laxitives and I appear to have hemmoroids to boot!!
Sigh!........................ Apart from that everything went swimmingly! haha
Have been struggling with my emotions since the op, examined myself the other day and spent the whole evening crying! :(
I look like a mess down there with burns, bits missing and the stitches.......
Hard to see ever being able to have a healthy sex relationship again which scares me to death considering I'm 25 and due to be married in August!!!!!!!!!!!!
Trying to cope and fingers crossed the surgeon can correct the way it looks.
Have a feeling that this is only the beginning of problems for me though as HPV stubbornly still remains after 16months!!!!!!!!!!!!!!
Thanks for your pearls of wisdom I have relied on skirts and the most action I get these days if from my doughnut shaped inflatable pillow! lol!
stay strong ladies!
Hi Hollie how are you now??Did they sort out your wounds?? I had my vin 111 op on april..it was very painful and i got an infection..AGH!! Still i am an old hand at this as i had my original vulvectomy nearly 10 years ago!! I have never looked at the area..just cant bring myself to..so you are very brave.I hope you are fully recovered now hun..we gothru so much with this disease ,it being where it is and such a shock to be told you have cancer or vin..hugs to you .hope all is well.love M.xxxxxxxxxxxxxx
I'm on the up thank u!
Well I had my Op on March 17th
All my stitches split setting my healing back by a few weeks but its June 13th today and my skin has healed really well, almost like new!
I don't look the same down below! they took a far portion of my perineum away but the VIN 3 went with it so I'm pleased!
Feeling more confident every day..........
Still haven't been able to be intimate with my partner yet but I'm hopefully it'll happen sooner rather than later.
Had recent signs that the HPV which caused my VIN was returning, so I used some medicated cream to get on top of it which fingers crossed seems to be working! :)
Seeing my surgeon 2morro for my final assessment, he's amazing and a huge help. (DR FISH- BRIGHTON)
Have good days and bad, the bad involve a mahoosive glass of vino, the good I feel confident to wear nicer underwear and dress up........a BIG step for me as sweats and baggy clothes have been my day to day wardrobe since the op! lol
How are you healing? sorry to hear you developed a infection.
I was in and out of A&E a few times with various issues, I was paranoid it was going to heal wrong... silly I know!
Its tough staying optimistic but its really the only option we have, I for one will not let this ruin my life!
It was a massive shock and the chances of it hanging around or re-developing again are high so I'm prepared for the future although I have everything crossed on a daily basis it never comes back!!
Am due to speak to a homopathic therapist this week, see if I can take anything to boost my immune system.
Hope today is a good day for you! and your healing well.
Never loose hope M!........We'll get back in that bikini sooner or later! lol
love Hollie xxxxxxxxxxxx
Hi Hollie,that is good to read ..shame you had the wounds breaking down ,but it is soooo common 'down there!!' Glad to hear you are on the mend : ) My oncologist is amazing too Mr D.J Murphy..i am quite in love ..ha ha ha ha!! So kind and understanding ..i have known him that long now he feels like a friend!!I t makes so much differnce to have a good caring person taking care of you ..it is a HUGE thing for any woman to have to go thru..Yes just go a day at a time ..the future will take care of itself: ) I am sure things will be fine with your partner too.I have issues in that dept and have chosen to sleep alone.That area is never covered by anyone really ..what to do afterwards!!???Hey the homopathic route..that is a good idea..i never thought iof that one .Erm as for bikinis..lol hun..i have never had the figure for one so nothing has changed there..ha ha ha ha : )
Nothing silly about being scared you are healing up wrong..i said to Mr Murphy..it's as tho i had a map of africa and have ended up with a map of australia..it all seem strange and foreign to me!! I still wont look!!! Just put the map away so to speak ; )
I am with you and the mahoosive glasses of vino too : ) I raise my glass to us both[well i will the next time i have one ; ) ]
Take care and keep in touich ifyou would like to Hollie.
Love Mary Rose,
I'm new to this site as well, and have been having problems with VIN III. I was first diagnosed with this back in January, had minor surgery in February, only to have it return and am due to go in for a wider excision tomorrow. Needless to say, like all you other gals on this site, I'm frankly DREADING it. Last time went OK to be honest; not too painful and I was only off work for 2 days. Last time, it was a "long" excision, but this time it's a much bigger, wider area. The gyno wants to get the margins correct this time. She said that although the pathology report showed no cancer last time, it's not to say that it won't be there this time. i suspect that I have had this condition for years, but just put it down to thrush and continued to self-medicate. She told me that if there are any cancer cells present, then they will take out the lymph glands in my groin and that will do the trick.
I feel a bit of a fraud sitting here telling you all how scared I am when I am one of the lucky ones. The healing process is scaring me a bit, but I keep thinking about how well it went last time - so fingers crossed ladies.
It is very reassuring to read your stories as I had never heard of this until my diagnosis. Also, I am an engineer and my workmates are all men - you should hear the lies I've been telling them about being off work for the next few days!!! I only hope I can remember what I've told them - HAHAHAHA!! I am living in Australia at the moment, but am from Scotland, so being so far from my family and friends is making me feel very sorry for myself as well.
Anyway, this time tomorrow, it will all be over and I will be sitting with an extremely stiff scotch!!
thank you for your stories ladies.
Thinking of you for your operation and fingers crossed they find no new signs of cancer!
Even though your new op will be more invasive than before, to give u a glimmer of good news I came outta my partial vulvectomy looking like a battlefield and now 3 months on I have a brand new bajingo!! LOL!
Its amazing how quickly the body does heal its self.
The one thing I will say is if you do self examine keep an open mind after surgery as I totally freaked out after seeing myself........there were stitches everywhere and I couldn't figure out which bit went where??
So keep a open mind that it'll be early days and the way you look after surgery won't be the way you look forever., that and plenty of painkillers, loose fitted clothes and bed rest!!!
I also found chocolate icecream aided my recovery!
If not its a Tim-Tam in a cuppa tea!!
My family are from Oz so pretty sure they still do those yummy biccies?? haha.
let me know how you get on
be strong and takecare Kath.
Your far from alone on this one! :)
Hi there, hope all goes well for you tomorrow.
Dont feel a fraud for feeling scared its only natural.
I did the same initially self treated myself thrush and had numerous vists to GP before finally having a biopsy.It is a shock to be told you have VIN 111.Like you i had never heared of it before diagnosis.
I just wish there was more information and awareness out there for ladies on this.
good luck tomoorow,please ask dont be afraid to ask for advice or support xxx
Hi there..you are no fraud my lovely ..Gosh we are all rather marvellous in my book : ) Best of luck for the op..take it steady ..and dont peek to soon ; ) Do let us all know how you are getting on .It must be difficult being away fro your family AND surroundxed by male colleagues!!: 0 Maybe you should tell them the truth..i think they would be very sympathetic you know!!
Thinking of you ..and semnding big hugs ..Love Mary Rose.xxxxxxxxxxxxx
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