VIN 3, pre surg how did you feel? Oh then post-op?

Hi Catloving75, 

Sorry to hear of your diagnosis and your anxieties around it. Everything you’re feeling is perfectly normal,  I can remember the shock and the worry well! 

I had a wide local excision to remove VIN3 and would be happy to answer any questions you may have. 

I am not sure what you do for work and the recovery will be different for everyone due to the exact location, size of the area to be removed and variations in individual recovery times, but what I will say is that I totally underestimated the recovery time for myself. I thought I would be back to my usual tricks straight away. I pushed myself to far and extended my recovery time. So my advice would be to wait and see how you feel afterwards and then go from there.

You will still be a woman and depending on the area to be taken will depend on the appearance down there. Mine still looks relatively normal now I’m healed.

I found that afterwards I probably should have done very little for a few weeks. I didn’t give myself the rest I needed and prolonged my recovery. It may be different for you but any lifting and bending needed to be avoided for me. 

Good luck with your surgery next month and if you have any questions in the meantime or want to chat then feel free to reach out and I’ll do all I can’t to help. You can also contact the Macmillan support line on the number below, where you can speak to a lovely member of the team for emotional support.

Take care,

I am a custodian/janitor and walk around 10k steps a day. I lift 25 lbs+, push things, pull things. My plan is taking 4 weeks off of work, I put surgery on Friday for a reason. Surgery then 4 weeks for rest and healing. The first week is going to be on my behind, couch to kitchen amount of walking. 

I am hoping that by week 3.5 I'll be able to walk and lift things, and even do light duty at work, half days. I'm scared that it may take longer than the 4 weeks to heal which will effect my financial situation, that's one heck of a stress pile. I know I'm a woman but the idea of damaging? changing? and even possibly LOSING sensation there really bothers me, a LOT. 

I'm just plain scared because I don't know what will happen after this is done. Oddly enough I've had my tubes tied and my gallbladder removed and was overall ok with those. Maybe because those things were *inside* and had really not served much purpose whereas this surgery is outside and hits a place that's for both functioning and fun. 

Hi Catloving75 

4 weeks off and a week of doing very little sounds like a good idea. Your job sounds very physical and I know I wouldn’t have been able to push, pull or lift. Everyone heals at different rates and complications add time on to the recovery time. For example, I got an infection which slowed things down. Recovery in  4 weeks is possible. I was initially told 2 weeks, but they took more than planned and then with the infection on top my recovery time was 6 weeks. That said I would have been able to do some light duties from 4 weeks.

The financial worries on top sound difficult. Sorry, I didn’t word my reply about still being a woman very well- I mean looks wise, I still look like a woman down there. I do understand your worries around changes and loss of sensation down there though. Again, it is something that varies from woman to woman. Your consultant should be able to give you some idea of the area to be moved and this would give you a clue on what to expect. The waiting to see the final result is difficult. At first I was shocked, but when the swelling went down, things were much more normal. I had some nerve damage initially, but sensation has returned now. 

I can completely empathise with your fear, the vulva is such and intimate and sensitive area. Like you say, it is both for functioning and fun. I would try to ask your consultant as many questions as you need to. That way you can prepare yourself as much as possible. I didn’t do that and like I say it was a shock for me. However, what I also didn’t realise is that things for me would return to near on normal within a couple of months. 

Hi catlover, i hope your ok i had my first vulva op and they only took half of one thats effected. Unfortunately mine managed to return for the second time again surgery to remove it. They do their best to leave the clitoris. I am a few years down the line and go for regular checkups as they said it will be back as margins were not clear. I have had to make a few adjustments over the time, but that is nothing compared to the pain from the vin, as the gp said it was pheceriacis. 5 years this went on!  

I also have had previous surgical procedures but this is your lasy parts and yes its horrid at first, but we are all here to help you through that part. Just know you will be ok in the end xx

Thank you for your reply. I'm sorry you'll have to do it again, the margins not being clear. You'd hope, right? Big ow snip cut happy ouch all done. At least that is what I'd think! As I've been reading around, the idea is 1 cm margin around the whole thing..which on me would be on my clitoris. That's one of the big reasons I'm freaking out, that's an important spot. Then, the out of my control part gets me. Plus the fear of it coming back. Allll of these things are scary and new. 

I do feel much better with the knowledge shared here, as it's getting closer to the surgery. 

Hi, I can relate. I had VIN surgery 4 years ago. I am not in UK but was born there. I will share my story and hope it helps.

It took a while to be diagnosed.  Went through several  GP visits etc. Then had unusual brown patch and bumps on vulva near vagina. Was referred during covid to gynecologist,  who said have to operate and didn't explain much. It happened very quickly which during covid made me worry more. Tried to find out more and prep for what expect.

After surgery was very sore. First milestone was peeing without it stinging like he'll. I am in my 70s and never thought I would celebrate that so much.

Get yourself prepared for after. Have stuff organized for meals you can microwave or drink etc. Make life easy.  Self care so important. Doing that kept me focused on what I could do while I waited and fretted

I had very little info but new mums blog gave me great tips for after. Investing in a peribottle was best money I ever spent. Ice packs which you can buy or make yourself. Have a donut cushion. Plus have a cushion for ride home and easy to put on clothes. Buy some organic cotton sanitary pads for after ready. Give yourself time to heal and rest. Binge watch favorite shows.

When its all healed check yourself down there just like you would your breaststroke regularly.  I would recommend anyone to do that now. I never did before. It's important as it can come back.

I just had a it reoccur but as am checking and being followed by specialist, she saw it. I had got a bit less vigilant so was surprised when we did biopsy at visit in June. Freaked out while waiting for results to confirm VIN/HSIL again. It was small so was removed in her office this week and recovering again. But was prepared for after. In first visit she had discussed options like laser and cream. So spent weeks fretting, researching etc.  Was so happy it could be done in office.

This is a a rare but becoming more frequent disease for women.  Not much talked about. Most research is older and with very small groups of women but we need to know we are not alone and we can handle it. Unfortunately it's much harder to talk about our lady parts than say our breaststroke so without forums like this there are few people to share with. Please reach out if I can help in anyway  even if small. Sending good thoughts and a virtual hug. You took the first step by reaching out and that was so brave!