Newly diagnosed

Hi Michelle, I don't have the same condition as you, but I am overseeing this group whilst there is no champ here with Vulva experience. 

I am sorry you haven't had a reply yet, this group is very quiet at the moment. I'm sorry to hear you are having to have the excision. You are bound to be worried that this may turn into a cancer diagnoses. It is only natural to worry about this. 

I know you are worried about the financial implications, 12 weeks recovery is a long time. Here on the online community we do have an ask an expert section where you can ask about any financial issues you may have. I will put a link HERE for you which will take you straight to that page. You can also phone the Macmillan support line, for both financial advice and emotional support. It is a free call number, and they are available 7 days a week from 8am to 8pm on 0808 808 00 00.

I hope that someone else from the group will be along soon to share their experience with you.

Hi Michelle,

So sorry to read your story. I thought that I would share my story in case it helps. I had a wide local excision and lymph node clearance for vulva cancer in 2018. I was in hospital for 9 nights and signed off work for 6 weeks. Once I got over the surgery  and I was back home I felt so much more comfortable than I did before the operation. I felt able to return to work 2 weeks after the surgery-the first week part time. I do however have an office job and appreciate that things will be very different for anyone with a more physical job. I am also lucky to have a supportive partner and family and friends. Do you have anyone who can help you get through this? I am happy to go into more detail and answer any questions you may have about recovery from the surgery if this would be helpful.

Hi, Michelle sorry to hear you are going through a difficult time. 

I have been having treatment for VIN3 for the last 18 months, first had the topical cream, the lazer in Nov and had an appointment 2 weeks ago and was told I need excision and not to leave it. 
When excision was discussed months ago they said recovery would be 6 weeks as it is on the perineum and would require a skin graft. However, I haven’t been told that this time. Actually I have been very little info of what to expect from the consultant, so I have no idea what’s going to happen. 
Had a letter in the post saying I was booked to have Polyps removed in June. I haven’t got Polyps. I rang the medical consultant who said they had booked the wrong procedure. Good job I rang to check. Anyway, I have been booked in now for May. 
I am a private person and haven’t told many people what I am going through as I was embarrassed.I feel quite scared and alone. I started a new job (dream job) this week and had to tell them today, they haven’t acknowledged my email and worry this my jeopardise things. The position is working from home remotely so it shouldn’t impact anything, I just asked if I could work my shifts around the procedure. No response. 

If you get any answers on what to expect or recovery time please let me know. 
Take care, your not going through it alone. 

Hi Jamae, Thankyou so much for replying. I go for my pre op next Tuesday so hopefully I will be able to fill you in alittle more. What has concerned me is you had the cream and laser treatment before deciding on the surgery. I haven't been given that choice? Also the speed at which it is going, had my date already, the 27th of April...maybe it's because there's a large area? Who knows. When I saw the consultant last week he said to me  " I could take biopsies today but I dont see the point in putting you through it " we need to bring you in. Did they give you the information pamphlet? The NHS one. It says in there it takes 6 to 12 weeks to return to work. Also be in hospital up to 10 days. I shall ask all these questions Tuesday. I understand where your coming from with the employer reaction. My first 3 surgeries for my AIN I was with the NHS, they couldnt do enough to help. Since then the department I work for was tuped out. Basically the service was overtaken by a private company last year while I was shielding. Started with them back in August before shielding twice more. Once I received my news I emailed my team leader, area manager and H.R. Didn't go into personnel details, said abnormal cells where found during a colposcopy and I would be having surgery within a matter of weeks, I also prepared them by saying my return to work could be between 6 and 12 weeks. You know something, haven't had 1 reply ! Not an acknowledgement or any support from anyone. I feel because it's a private company they dont have anytime for compassion! Anyway enough of me ranting lol. I shall message you once I know more. Take care, stay positive xx

Hi Molly, thankyou for sharing your story....I have so many questions going through my mind!!! Can i ask, was your surgery inside or out? Sounds daft but at the minute both sides of the vaginal wall are affected. Also the perineum then obviously the AIN 3 around my bottom so I don't know to what extent they will be operating until I get into theatre. I'm not looking forward to a lengthy stay in hospital without any visitors. I think during all this time  is when you need your loved ones near, even if it was just my partner that was allowed to visit.  Not sure I would want my children seeing me in such a mess, they're adults now but still wouldn't want to put them through it. It's  promising to hear you were back at work within a few weeks, I know with all 3 of my anal surgeries I was off 2 month at least. The stitches where so uncomfortable I had to spend my first few weeks played on my side, then moved to a doughnut cushion. 

After your surgery how did you manage stitches and underwear. I've already bought some knickers off amazon that are aimed at ladies who have had perineum surgery so I'll see how they go. I've also invested in a couple of maxi skirts ( for the first time ever !) Not normally a skirt person but I have to think comfort here ! Then a few pairs of harlem trousers. Anything else you think I may need to help recovery would be much appreciated.  How are you doing now? Have you been clear since the surgery? Xx

Hi Molly and Shelley,

I wish you all the best in your surgery and hope it goes to plan. You have done amazingly so far, you can do it! 

They did recommend surgery in the first instance but I wanted to explore other options. I read online the chances of it turning to cancer were slim, stupidly I thought it was worth a shot and keep my lady parts in tact. My vin3 is a relatively small area but the consultant said I would need skin grafts etc. Sounded a bit to scary, a wimp I know. Time to get my big girl pants on and grow up. 

I am in my 30s with 2 young kids and was worried things will never be the same down there. I am pretty active and didn’t want slowing down. They didn’t mention about having any time off to me. The consultant was pretty rubbish actually and said very little. No details of what to expect. Someone suggested asking the specialist nurse but no details have been given. 

I have still had no response from my new job so don’t know what to think. I am a little embarrassed as I feel I have bared my soul to pretty much a stranger. Prob over thinking it.

Anyway, it’s friyay. Wine o clock, think we all deserve it. Thanks so much for reaching out. It really helps to hear others going through it, I thought I was the only one.

thanks 

Hi Michelle and Jamae,

My surgery was to my vulva and not to my vagina or perineum. I did however lose virtually all of my vulva - I was shocked at how much was removed as I was told that it would be a partial removal. I did not have a skin graph. I did need a catheter for a few days after my operation and there was a possibility of permanent damage to my urethra. Fortunately my surgeon was able to avoid any permanent damage. I had a drain for several days due to lymph node clearance, The scar from this looked really horrible but is now covered by hair. All my stitches were dissolvable and did not cause any problems. I did not need chemotherapy or radiotherapy.

After my operation I wore pads and net knickers which were provided by the hospital. I bought some more knickers from Amazon. I poured water over the area whilst weeing and dried myself with a hair dryer. I continued with this when I returned home. I did not wear trousers for several months. I bought some open gusset tights for work.

I did not go into any details at work. I only told my line manager. She supported me in my decision to be vague with everyone else and to take as much time off as needed.  I hope that your employers will come round and be supportive - better late than never.

I still have some lichen sclerosus on my perineum. This is treated with Dermovate ointment - a steroid. I have regular check ups so that any recurrence will be picked up early.

I am so sorry that you will have a long stay in hospital without any visitors. Will anyone be able to bring things in for you? If not don't forget a hairdryer. 

Things do look different and it took a lot of getting use to. However as well as being free of cancer I am now no longer itchy, sore and uncomfortable. I know that it is scary at the moment but it is doable and you will recover.

Wishing you both all the very best.

Thank you MollyMabel, it does help to hear what you have been through and that you are feeling a lot better. How long ago was your surgery? Just wondering how long recovery was?

many thanks 

Hi Jamae,

My surgery was in 2018 and it took about 3/4 months to recover.