Lonely and upset

Hi Plutonium, I would try ringing your surgeons secretary and asking what they suggest for the itching, I know it drove me bonkers too and Dr prescribed some cream which eased it.  Have you tried rinsing with cool water?  No underwear will help and the air will circulate.  Sending hugs. x

Hi you are not alone & I can assure you that I feel the same way, my operation sounds just the same as yours & was done on the 3rd of June, I now feel so down & awaiting a follow up appointment for reatment with cream to get rid of VIN  still at perineum. I do have people around me for support & still find it difficult to talk with them. If you ever want to just rant on or vent out any frustraion there are lots of us who will try & help  & listen to ️️

Hi plutonium, i too had the exact experience that you did regarding telling my male GP about my sores for approximately 8 years only to be told it was scar tissue and tears from having my children…they were both 27 & 13 at the beginning, even to the point of my GP saying I had to attend the STD clinic which was horrendous and embarrassing as I’d not been in a relationship for over 7 years. I had HPV in my last smear test which they knew about but still nothing. Finally the last pain was so bad January 2023 I called my GP only to be told no appointments but call 111, luckily they got me an appointment with an out of hours female GP who took one look and referred me to Gynaecology, within 2 weeks I’d had appointment, biopsy taken and diagnosed with vulva cancer. Like you I had partial vulvectomy and both lymph nodes in legs removed. I’ve since been made redundant from my job and I still suffer with numbness in my left thigh and slight swelling in my leg (lymphoedema). I’ve developed a rectovaginal fistula since my operation so I’m still unsure whether I want to go through another 2 operations to repair that as it involves a temporary stoma bag, and reversal operation to remove said stoma. Your feelings are normal and speaking to people on here has helped me massively, I also had a “buddy” organised thru Macmillan who called me to discuss my feelings every week which really helped. You will have your good and bad days but don’t think you’re on your own and call your Buddy if you have one in place, they have been through cancer of some sort so know how you’re feeling. I hope you’re feeling more hopeful after reading this x

So sorry to hear what you have all been through, I’m the same and had a WLE for my vulva cancer back in 2022. I too developed a lump the size of a golf ball in my groin (lymphoedema) due to the removal of lymph nodes.  You can have a special massage to get the fluids moving but you will have to have it done privately which I did.  When I went back to my surgeon for my 3 monthly check he was most surprised as it had completely disappeared.  I paid £35 for the massage a the lady showed me how to massage the area every day and that was the best £35 I have ever spent.  If anyone needs anymore information ora chat please just message me. X

Hi Sharon0308, I’ve been to the lymphoedema clinic, they showed me some exercises with a small ball to roll around my groin and showed me how to push fluids up my leg, I’m struggling to fit these in and find them hard to do as I’ve got arthritis in my hands and my fingers cramp up if I bend them. I’m definitely going to contact the clinic again to see if there is anywhere locally I can attend to have massage done, I don’t mind paying if it helps as I’m getting hard lumps in my groin area where the lymph nodes tissue is scarring and still numb x

Hi Debs,

have a look at The MLD UK register to see if there is a therapist near you offering MLD.

I’m not sure if links are allowed but the address is www.mlduk.org.uk

Hi Debs1311, I went to the lymphoedema clinic but did not find them of much use if I'm honest.  They just gave me socks and tights and I find them very uncomfortable.

The massage I was shown was very easy and just gentle moves around the area, I used to do it about 6 times a day whilst sitting watching the telly or when I was sitting in the garden.  I too have arthritis in my thumb and these moves were easy.  As Lilla M has suggested below have a look at the MLD register.  I was going to a cancer charity, Helen Rollason Cancer Charity for reflexology and one of the other ladies there recommended the lady that I went to.

I wish you good luck and please let me know how you get on.

All the best

Sharon x

Hi I had the same surgery  as you a 1b cancer with both lymph  nodes removed.Dont worry you are doing great. I felt the same as you numb in my legs and sore down my groins and in surgery area. My surgery was October last year. At times I thought I was never going to get better and never able to work again. It took me over 5 months to get back to work. Itryed lots of times to do the odd day but my body wouldn't let me do it.Mentally I was getting down thinking am I ever going to feel myself again. You will get there it just takes time. I am working 5 days week now in a kitchen. 

Hi MAS79

Only just read your post.....I'm also a bit older than most with vulvar cancer which evolved slowly over 40 years of a fungal condition called Lichen Sclerosis.

After lots of small operations over the last 3 years I now face an operation called Total Pelvic Exenteration. They are going to Jake me into Barbie's Grandmother. I will also have two stomas.. It's not something I get to talk about much.

So have you recovered a bit now.....how are you? 

Sending you hugs

Dannelchen