2 years on after Vulvectomy

Hi Ex Lancashire Lass 

I’m bumping your post here as I see you haven’t had any replies yet, in the hope that some of the other ladies will see it and reply. My different surgery means I don’t have any experience to share, and I am lucky enough to be able to sit comfortably nowadays. It sounds difficult for you to be 2 years on and still be having discomfort, so I hope you’ll get some relevant responses.

Sarah xx

I am new to the group but wanted to share my experience with a valvectomy I had in Dec of 2024. I am still very tender in the area and also have been having nerve flair ups  that feels like electricity at times from where they cut on me. The doctor says it's just a response from the nerves. But it sure don't feel good when your the one dealing with it. So sorry you are going through this! Take care!

Thank you for replying, yes I know the feeling, my op was 2023 and still feel the pain.

Hi. I had a full radical vulvectomy in January this year. It started with a ulcer in the vulva area, turns out it was cancer. I also had 9 lymph nodes taken from the left groin and 5 from the right. I know have lymph fluid in my stomach, which is like a dull ache and causes problems with my mobility. The left thigh is numb in parts but improving.  Different story on my right thigh. Since I woke up from surgery I felt a dull ache near my kneecap and thigh. It hasn't gone away at all, I also have quite a bit of nerve flare ups in that thigh. No one knows what is causing the pain and why my mobility is limited. I had an appointment next week with NIMS, which hot cancelled today and I need to rearrange.  I don't know if it is nerve damage or something pressing on something. It is getting me down. I can not go back to work with these issues, I feel like my life has been put on hold. It was hard enough coming to terms with the cancer and what surgery I had done, but now I have to deal with this. P.s I should also say I suffered from Lichen sclerosus and I had a total skinning of the vagina area, which new skin is growing back but still sore to touch 

Hi Lizzy58

I just had two lymph nodes removed, one from each groin and haven’t felt any discomfort, one formed into a cyst which they drained, no problems since.  9 lymph nodes sounds problematic for you with the build up of fluid, I hope you can get something done 

It's so hard to understand what is going on. I think my surgery was bigger than I thought

Obviously being just 7 weeks post op I can't answer this one. But I'm glad you shared, really interested to hear from others too, or what your "professionals " have to say.  Just came to post my update too, things not going so well. 

Sorry to hear you are still having these issues,  you've been a great help to many here x