Anterior Vulvectomy and lymph node removal

Hi I had surgery to remove my upper vulva and clitoris along with the lymph nodes at both sides. Cancer had not been detected in the nodes but my surgeon decided it was best to take them out now rather than me having to go back later. I am in so much pain and the swelling is unbelievable around my vulva is this normal? I feel Iike I have a water melon between my legs! The swelling has increased since the operation again not sure if this is normal.any help advice would be greatly appreciated as I don’t want to be continually hastling my GP. My emotions are all over the place.

  • Hi

    I had a total vulvectomy in February and then had all of my groin lymph nodes removed in April. I had a drain either side of my groin...these were removed the following week. That's when my swelling started. I had 2 huge and very painful swellings either side of my groin.....I could barely sit on the toilet because they were pushing into my thighs. At one point I had to ring and see my GP because I was in that much pain and I was worried that the swellings would burst because they were that big! He sent me to the SAU at my local hospital. The Dr's were reluctant to drain them and instead prescribed me some cocodamol and antibiotics incase there was any infection. They told me that the swelling was to be expected and that it would take weeks for them to reduce...which unfortunately it did. They told me that it takes a while for your body to figure out where to "send" the fluid in the groin once the lymph nodes are removed. They also recommended gentle massage of the area to encourage the fluid to move.

    How long ago was your surgery if you don't mind me asking? Have the hospital given you any painkillers to take? Don't be worried about calling your GP or even the ward where you had your operation....that's what they are there for and they'll be able to advise you what to do. Please don't suffer in pain.

    Feel free to message me if you want to chat or have any questions. I hope you feel better soon.

    Take care x

  • Hi I've just had a similar op 3 weeks ago and stil suffering the pain in the wounds where the nodes were taken we don't realise that is also major surgery. I have the district nurse attend me daily due the swelling had strong pain killers and antibiotics daily the fluid bursts out the wound and eases the pain for a few hours till builds up again.now I have dead tissue inside my wound that's getting treated. I never expected this to happen to me. Life on hold can't sit can only feel comfortable when lying down Its getting to me now and still waiting on final pathology results from lymph node removal. Feel free to ask anything at anytime not as if I'm going anywhere . X

  • Hi everyone

    I had original partial vulvectomy end of March, 2 lymph nodes were removed which turned out to be cancerous although scc removed successfully.  5 weeks ago I had operation to remove 18 lymph nodes and was fitted with 2 drainage bottles.  I had these until today when one was removed, the other one will be removed when it's draining 30ml or less over 2 consecutive days. However, last Friday I was told all 18 lymph nodes removed were free of cancer, I could have kissed my wonderful Consultant! I have to have radiotherapy on the 2 lymph nodes adjacent to the cancerous ones that were  removed, but merely a cautionary measure and a small price to pay!

    Chin up ladies, we all can and will beat this body invading enemy and come out smiling. I've been helped by a great team, both in hospital and at home, but especially in hospital.  Trust your Consultant and your Specialist nurse.  Mine hasn't been an easy journey for a 74 year old woman living on her own, but I'm getting there with the loving support of family and friends.  Always happy to share my journey, past and future as no idea what radiotherapy will bring me so any advice from anyone who's been through it is more than welcome xxx

  • Hi sandy ann I hope you are feeling better,I'm still struggling with my left side, had both drains removed after 10 days and now I get the build up after 10/12 hours then swoosh a burst, been home 2 weeks and everyday it's still the same now they are thinking about going back into hospital to put a drain in I'm loosing to much fluid and feels now its going up  across my stomach , hooefully tomorrow after MDT meeting I will getbthe results of the nodes, they took all away I was told its getting me down and everyone has been so supportive let me know how you get on in the coming days x

  • Hi  I had a small patch and my Clitoris removed in January and all the Lymph nodes on one side and some on the other all at the same time.  Its Horrid.  I couldn't sit, lie, walk or stand for any length of time. I did buy a special cushion so I could sit. It takes time to recover.  If you are uncertain about anything ring for help.  

  • Hi i know the feeling I've had a tumour and a few white patches removed and nodes at each side  5 weeks ago horrendous is an understatement believe me. I have daily nurse visit my left side wound constantly bursts open and projects fluid my right side has dead tissue and beenninfected twice ,the right side is easing with fluid but now swells up and now looks like I have a solid lump under my wound. The nurse has been massaging the fluid out every day and my partner at night  yesterday resorted to a colostomy bag to catch fluid not a success,back to bed changing 2-3 tines a day. I can't see an end to it everyday new problem. In my experience it wasn't explained properly to me what was involved in lymph removal no matter how muchni read and was told in the days leading up to op. Now a hois chance I will have lympodema. I'm not ready for that I'm only 55 !and still have a lot of life in me my mental health is struggling with this as I feel some folk think it's just a small incision they have no idea big empty cavity to heal its going to take months .

    Keep in touch on your progress please, can I ask what region in country you had operation ? 

    1. Sending  big hugs to us all suffering this horrible illness and aftermath complications x
  • Hi,  This Lymphoedema risk is massive. I look at my legs every day to see if I notice anything. I'm healing well and don't look like the road map of London anymore.  The scars in my groin, one is massive and other smaller are doing ok.  Most of the fluid has drained away.  I didn't have as much trouble as you did but I was vey swollen everywhere.

    I Live in Essex and had my surgery in London.  I travel to London for all my check ups. 

    I am definitely on the mend physically  although I am not sure I will ever get over this mentally.  

    People say you look well and that frustrates me as I feel like a freak under the clothing.

    You take care xxx

    Lots of Hugs.  

  • I really struggled with my right side, left bottle was removed after 5 weeks, but right one was still draining 100+ ml.  However, a week later it suddenly almost stopped.  District nurses attempted to remove it and couldn't, went back to hospital ward and nurse there couldn't, by which time I was really sore.  My cancer specialist nurse arranged for me to see my Consultant urgently, he took one look and said they should have let the pressure off, he did this, one small tug and it was out! 

    Now almost healed and been to see Oncologist 're radiotherapy, have to go Tuesday forgiven and mapping, I'm to have 5 weeks, every week day of small doses.

    I've been under the care of Royal Devon and Exeter hospital and my care has been excellent!

  • I've had excellent treatment also in London.  Really pleased you're healing ok. I understand from someone  who I did correspond with that radiotherapy can be harsh. Ask lots if questions and take plenty of rest during the treatment. 

    Hopefully it will be easy for you. 

    Sending lots of hugs xx

  • I'm hoping it won't be too bad, Have seen Oncologist who told me about side effects. I'm having 5 weeks of small doses as it's a precautionary procedure and hopefully, if there are any renegade cancer cells still existing, it will kill them.  

    I think I will always be fearful it will return and sad that it's existence has prevented me from ever having a close relationship (my partner left when told I couldn't contemplate a sexual relarionship) but so very very grateful I'm still here and to the wonderful people at my Exeter hospital who have helped me through this, as well as my wonderful family and friends who are here for me! I decided during my journey that I no longer wanted negative and depressing people in my life and this has helped me.  Strangely enough, the most positive people I have come across in last few months have been the amazing people in the 2 local cancer groups I have joined, so I would recommend anyone seeking out or even starting a local cancer group! Xx