Short/long term issues

Hi Lizzy58 

I’m sorry you haven’t received a reply to your post yet-I know you’ve posted before about the post surgery issues you’ve had. 

Has your consultant got any plans to deal with the fluid and the possible nerve damage? I have a very different life after my own surgery, and for me there definitely wasn’t enough guidance about post surgery issues either short or long term-both mental, and physical. I’m sorry I can’t share advice about a similar experience, but I definitely can sympathise and hope that you might get some further answers now I’ve bumped your post.

Sarah xx

Hi Lizzy58

I am sorry to hear that you are dealing with some issues after your vulva cancer treatment. Have you spoken with your CNS about the issues that you are facing? Sometimes they can do things to help.

My own cancer was endometrial and although the cancer has gone I am dealing with long term effects from the treatments. I know how hard it is to live with these effects. 

With the lymphoedema it is important to get this checked and there is treatment available to help manage the condition.

Lymphoedema treatment - lymphatic drainage massage, exercise | Macmillan Cancer Support

My nerve damage is peripheral neuropathy and is in my feet, legs and hands/wrists. I personally found that when it was discussed at my check up appointments- it was just seen as a late effect and the focus was more on the checking for signs of recurrence. I eventually consulted my GP and was prescribed medication. I also had a physiotherapy consultation. 

My advice is to get each side effect checked out. There may not be something that can completely deal with them- but there will be things that can help. Also in time, you may find some of them begin to settle. Focus on recovery and work may well happen again in the future but give yourself time. 

Jane

Thank you. I've got an appointment with my consultant at the end of this month, hopefully he can answer my questions. I go back to my lymphadema nurse in 2 months x

Thank you for replying. My cancer nurse keeps looking at other things it could be, but i know my body and what issues I have since surgery. Both my doctor and lymphadema nurse say it is nerve damage due to surgery. I see my consultant at the end of this month, hopefully get some answers. I also suffer with circulation problems and constantly cold  x

Hello Lizzy, I also had a radical vulvectomy and bilateral lymph node removal and removal of my clitoris in 2023. Fortunately haven’t developed lymphoedema but just one swollen groin cyst, which was drained and clear, it still remains slightly swollen.  I notice you have an appointment at the end of the month, I hope they can allay your fears and offer help.

My problem was psychological with the change in my body and missing my femininity etc.  I am extremely grateful that all my cancer had gone and feels wrong to moan about my missing “bits”  I still have weepy moments and always the fear that the cancer will return.  I do feel that the mental aspect of our situations could be addressed.

Hope all goes well with your upcoming appointment.

• Thank you. I too have issues with what was removed. Feels strange as I have no feeling there whatsoever