Janet Scott - Living with Lipoedema

"I remember as a little girl, going to those winter pantomimes…. I knew the local pretty girls on stage, dancing in their elegant costumes. One of them was in my year at school, so if she could do it, couldn’t I?... Then I looked at my legs (again) and thought…’No one would want these to spoil the performance!’

 

So life went on and I lived with ‘heavy legs’. I loved horse riding, but had to have my boots cut down to cope with the growing lump on the inside of my knee. Then I had to give up riding because I simple couldn’t grip well enough. My legs were becoming so round, especially around the knees which looked like they had beanbags glued on to the inside of them! Forget shorts and above the knee skirts, my legs were firmly undercover…

I was on holiday in Gozo with some friends. One, Pam, a nurse, had recently undergone training at the Vodder Clinic in Austria where she had learned about the condition. We were taking in the rays on the sun bed and Pam said she thought I might have Lipoedema…. She described it and had a prod at the pudgy knees. "Yes, I think it is Lipoedema, but you would need to get a proper diagnosis". Fantastic!!! I thought, I can have lovely legs after all !! Back in the UK, I went to see my GP, who referred me to the local Hospice where they ran a Lymphoedema Clinic. I found this very strange, when all I had was misshapen legs…. It was 2003. Treatment at that time was circular compression and not a lot else… The practice tights cut into me like a cheese wire and I gasped in pain.

Over the years, the team at the Hospice became an integral part of my life. Compression garments improved, flat knit stitching and even 'made to measure' my own personal contours! Manual Lymph Drainage (MLD), then amazing garments you could put on and which simulated MLD. Deep Oscillation therapy came in and Pam (by now with her own MLD practice) was one of the first in the UK to use it.

Treatments continued to evolve and the term liposuction was whispered… Could it be that simple? Of course not, it was early days, not available on the NHS, mostly offered abroad – Germany seemed to be at the forefront of the revolution. I was very wary of travelling abroad to have any kind of treatment, not least because it was done using local anaesthetic. Being of a VERY Squeamish disposition when it comes to anything blood or scalpel related, I decided it was not for me. Roll on to 2015 and we had formed a local group of about 20 ladies. One of our group had seen an article about a lady from Northern Ireland who had undergone surgery with a UK surgeon – under general anaesthetic! The surgeon, Anne Dancey, specialised in microsurgery breast reconstruction and had honed her craft on repairing the bodies of soldiers who had suffered blast injuries in Afghanistan. So here was someone who would be familiar with the intricacies of what was required.

I booked a consultation with her and she made me cry. She said, ‘this is not your fault’. She talked me though what would happen and was calm and gentle – and she just ‘got’ the whole emotional and mental disfigurement, as well as the physical. I had my first surgery in January 2016. The following day I was shuffling about, black and blue, but upright and pottering about the room. My second surgery didn’t go as well. The surgery was fine, but the pain afterwards was difficult to get under control and I was put in a wheelchair to be taken out of the hospital. I had booked private MLD after both surgeries and I am convinced that this helped to reduce the swelling more quickly and to get back to some kind of normal.

 

The following video has been made with photographs supplied by Janet,

missing are pictures of Janet's teenage years which she says "would have been binned!"

Heartfelt thanks to Janet from Mary and Julie, Sisters and Directors of PhysioPod for sharing her story and photographs in order to help create awareness of Lipoedema and liposuction as a treatment which really helps ladies living with Lipoedema to improve their quality of life x

Communication with Janet began three years ago when Janet heard PhysioPod were going to train Lymphoedema Nurses at her local hospital (picture below) and Janet sent a direct message on Twitter:

"Hi there Mary! So happy that you're training in this area... I had physio a couple of years ago at that hospital and waxed lyrical about deep oscillation therapy for Lipoedema and Lymphoedema which I had had privately with Pamela de Chaumont-Rambert, our local Deep Oscillation/Hivamat practitioner since retired. Enjoy your trip oop North, Janet x"

That training happily resulted in the supply of 4 new devices placed at The Centre For Health, County Durham, see feedback..

Julie Soroczyn, MD of PhysioPod, Patricia Lawson and Julie Smith, Lymphoedema Practitioners

"Following a successful grant application with MacMillan the Specialist Lymphoedema Service has purchased two Deep Oscillation Personal Sports to facilitate Deep Oscillation Therapy for patients suffering from complex Lymphoedema.

Our service has clinics throughout the county therefore we required equipment that was easy to transport. As the Personal is light and comes with its own case with everything we need it is ideal for our use. We are using deep oscillation for a variety of lymphoedema conditions; head and neck, arm, leg, truncal and breast swelling.

Initial treatment has been for patients who have been having manual lymph therapy or complex decongestive therapy top up where deep oscillation therapy was utilised for the full sequence of manual lymph drainage. Where fibrosis is present in the tissues we have used deep oscillation therapy for 10 minutes on these areas starting gently.

Patients report that the treatment is very relaxing whilst having the therapy. Initial results are positive. Subcutaneous tissues soften and patients report that they feel more comfortable as tightness of the limb has reduced making movement of limb/head and neck easier.  We have also noticed that undertaking the manual lymph drainage technique with the deep oscillation unit reduces the impact of massaging on our hands.  However, we are in the early stages of using deep oscillation therapy and are learning all the time."

Patrica Lawson, Lymphoedema Specialist Practitioner, Specialist Lymphoedema Service, Centre for Health, Whitehouse Business Park, Peterlee, County Durham, SR8 2RU

Telephone Number : 0191 569 2870

Referrals Agents: GP, Hospital Specialist or other healthcare professional