You have genital Lymphoedema by Zoe Breen

I’m a glass half full kinda gal!
So when I had to have two lots of surgery to remove cancer from my vulva and lymph node extraction I put the lymphoedema leaflet in my ever growing medical file. I left hospital with a vulva the size of a small continent and one node site weeping! At this point no one mentioned that leaky wounds usually need antibiotics and to remain covered! So unsurprisingly I became very right side swollen as I had an infection. We all assumed that the swelling would go down as the antibiotics kicked in. However what then followed was a few months of a wound ejecting fluid in a very dramatic and terrifying way, swabs constantly taken to ascertain the correct antibiotic and pain in my pelvis, groin, buttock and pubis. Slowly the swelling subsided but my right side was , and to date still is painful and often swollen. It was at this point that lymphoedema was to be investigated. I had to be measure and probed for moisture levels to then be told yep I can confirm you have genital lymphoedema! Right I better dig the leaflet out and establish what this means.
In layman’s terms lymphoedema is swelling caused by a build up of lymph fluid in the body but if the lymphatic system is damaged or inadequate it cannot handle the usual amount of lymph and fluid builds up in the tissues.
So now I have to wear compression tights, slight issue I’ve been allergic to any materials other than cotton since I was a child! So I had to wait to have some special cotton ones made and when they arrive you get one pair, that you wear all day until bedtime. Pre operation I was a very flexible girl and proud that at fifty I could still do the splits and get myself in a crab position. Now I can’t even cross my legs! So getting compression tights on is like an Olympic event, coupled with the fact that half my vulva has been removed and I suffer from a chronic skin condition, vulva lichen Sclerosus. Which means I prefer to be commando and cool!
I’m only recently diagnosed so I’ve just started having physio, I’m to be taught massage techniques and my lymphoedema nurse is exploring the use of low light therapy.
I used to love driving but now it causes a dull ache and pain. Due to recovery time I am carrying more weight, which in itself does not help. To be honest it’s manageable but pretty exhausting and until now I’d been proud not to have had cellulite on my slim legs! I’m beginning to feel pretty gross about myself and everyday is a battle of what I can wear that’s comfortable and if I’m going to need pain killers to get through the days activities!
Zoe Breen aka ‘flumpy foof’