Hi, I’ve just come across this group. I’ve been suffering with re-occurring VIN3 for 13 years .
I'm just wondering does there come a point that you actually are free of having to have surgery? I’ve literally had 22 lots of surgery and turned 38 this year , so was 25/26 when started this journey.
Has anyone been free from surgery for many years or does it always come back?
I am due a check up next month to see if need surgery again hoping I don’t. I’ve not had the normal symptoms for a while, itching and soreness so I’m hoping that now I’m having excisions rather than laser it will give me a good break.
I've previously had a break from surgeries due to having a cardiac arrest while under for procedures (metranodazole) caused it. But I personally think having constant surgeries for the last 13 years my body has just had enough.
Hoping it does eventually get better and people have had a positive story because mine has been anything but that.
Jodi
Hello Jodi
My name is Steph and I’m part of the team who look after the Online Community here at Macmillan. May I wish you another warm welcome to the site, I hope you will find the forums to be helpful and supportive.
I am sorry that you have been suffering with re-occurring VIN3 for 13 years. Having 22 rounds of surgery is a lot to go through and it's understandable that you're hoping for a break from all of this.
We have other members here, diagnosed with VIN , who understand at least some of what you're going through. By replying here, I have bumped your post so that more members might see it and offer you some support.
I'd also encourage you to speak to your doctor/nurse about how you're feeling so they can discuss your options and put some more support in place.
We also have a Macmillan Support Line if you would like to talk things through with someone who is there to listen. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.
Macmillan have some information about VIN here. You may also find the following organisations helpful:
Please do let us know if you need any further help using the Online Community. You can contact the team by email at community@macmillan.org.uk
