Privately Funded Liposuction Significantly Improved Lipoedema Symptoms and Quality of Life

Nikala is now 32 years old, she was first alerted to the fact that she may have Lipoedema in 2016, aged 27, by her now Mother-In-Law, Julie Soroczyn, Managing Director of PhysioPod UK.

Background

Initially, Nikala visited her GP to ask if it was possible that she had Lipoedema because of her symptoms but the GP said "you mean Lymphoedema?" and Nikala went home feeling dejected.

Nikala relayed the comments of the GP to Julie, who gave her a GP information pack produced by Lipoedema UK and armed with the facts, she made another appointment to visit her GP. This time the GP was most interested in the information and completed the RCGP Lipoedema course online. After taking the course, she referred Nikala to the Royal Derby Hospital for a Lymphoscintigraphy, a method used to map the lymphatic system. A further appointment was attended at Queens Medical Centre in Nottingham with a Vascular Consultant and a blood test was carried out. In 2016, Nikala was diagnosed at the Lipoedema Clinic by a Consultant with Lipoedema Stage 3 and secondary Lymphoedema.

What is Lipoedema?

Dudek et al, 2021, confirmed:

"Lipoedema (also known as lipedema) is a chronic, progressive disorder of adipose tissue that occurs almost exclusively in women. The condition has only recently been included in the International Classification of Diseases (ICD-11) of the World Health Organization as a separate clinical entity in the category “Certain noninflammatory disorders of subcutaneous fat,” code EF02.2. According to the ICD-11 description, “Lipoedema is characterized by non-pitting diffuse ‘fatty’ swelling, usually confined to the legs, thighs, hips and upper arms. It may be confused with lymphoedema” (1)

Stages and types of Lipoedema

Nikala felt 'strange' but happy with the diagnosis, she had always felt 'something wasn’t right' because she didn’t look the same as everyone else.

At the clinic, Nikala was measured for compression tights and advised to reduce any excess weight and she was also given treatment for three large varicose veins in her legs.

From being small, Nikala has had joint hypermobility syndrome, with very flexible joints that caused pain. Nikala's legs started to increase in sized at age 14, her thighs rubbed together and would chafe so much they would bleed. At school, she would make excuses to use the toilet at PE so she could get changed in a cubicle, rather than expose her legs to others; she was already bullied for her weight. However, none of this stopped Nikala from taking part, she loved sports.

As stretch marks developed all over her body and she gained more weight in her lower half she really disliked having photographs taken and would often refuse to be involved in family photos.

Though not formally diagnosed, Nikala's Grandmother had also showed signs and symptoms of the disorder.

Pregnancy and Contraception

With each pregnancy symptoms worsened, Nikala's legs got larger after the birth of her first daughter and were very painful. With her second daughter, her legs were the biggest they had ever been and remained that size for many years despite losing weight. Nikala "hated her body". Working full-time in the catering industry, she was on her feet all day and did try to exercise, but it was hard on her legs and very painful. At the end of day, it was a huge relief to put her feet up. Her legs always swelled further in warm weather. Contraceptive medication also worsened symptoms, Depo injections had a massive impact on weight gain, in both arms and legs.

Co-morbidities

Nikala has Raynaud's Disease, her hands and feet always feel cold. She has osteoarthritis in both knees, is asthmatic, has Scoliosis of the spine and obsessive–compulsive disorder (OCD). Nikala loses small patches of hair, her hair is very thin and her skin is dry and 'very elastic'. When it is sunny, her feet tan but her legs do not. She has flat feet and her preferred footwear is a 'comfy pair of trainers'.

Obesity Stigma

"Stigma and discrimination toward obese persons are pervasive and pose numerous consequences for their psychological and physical health. Despite decades of science documenting weight stigma, its public health implications are widely ignored" (2)

Prior to a formal diagnosis, every visit to the doctors, even if for a chest infection, her weight was always deemed the issue. At one point, she was asked if she would like a gastric band fitting. Another GP diagnosed her with a mental health condition "Body Dysmorphic Disorder', when she had booked an appointment to voice her concerns over the pain and size of her legs. This diagnosis still remains on her medical history and she is fighting to get it removed. Though physiological counselling has been offered in the past for post natal depression it has never been offered for Lipoedema.

Nikala has lost count of the number of diets she has tried "there have been hundreds", which have resulted in a loss of weight from her face and upper body only, never from the Lipoedema affected areas. The Slimming World approach is the only food management plan that has worked for her. She now actively avoids refined carbohydrates and sugar and limits her intake of sodium

Liposuction denied on the NHS

Nikala requested Liposuction on the NHS and was asked to lose a certain amount of weight before Liposuction would be considered. The weight was lost through Slimming World and she returned to the clinic, yet liposuction was still declined, on the grounds that she had 'no health issues caused by Lipoedema that were life-threatening'.

In a study entitled LIPOEDEMA - A CALL TO ACTION (Buso et al, 2019) wrote:

"Several investigations have shown tumescent local anesthesia (TLA) is highly effective in terms of both cosmetic and functional outcomes. Schmeller et al. described an average reduction of 9,846 mL of subcutaneous fatty tissue after treatment, with an additional amelioration of sensitivity to pressure, edema, bruising, functional limitation, and cosmetic complaint (P < 0.001). Moreover, no serious complication occurred following the procedure, with wound infection rates of 1.4% and bleeding rates of 0.3%. Very recently, Wollina et al. reported on 111 patients mostly with advanced lipedema treated by microcannular liposuction in tumescent anesthesia between 2007 and 2018. They described a median total amount of lipoaspirate of 4,700 mL, a median reduction of limb circumference of 6 cm, and a median pain level lowering from 7.8 to 2.2 at the end of treatment as well as improved mobility and bruising" (3)

Impact of Privately funded liposuction on quality of life

Pre-Lipoedema Liposuction, the condition affected both upper and lower limbs, lower back and abdomen and after liposuction and now, to a much lesser extent, it still affects upper and lower limbs. Her legs have continued to reduce in size since having the operation because she is now able to exercise. Her legs pre-op she described as 'very tender to the touch' and post op, only 'slightly tender to the touch'. The OA pain in her knees is greatly reduced.

Prior to liposuction, Nikala rated her normal pain between 4 and 5, when at work then a 7 and now, post liposuction, most days are graded "1/2" and if she has done three nursing shifts in a row then a '4'.

The day after Body Jet water-assisted Liposuction, carried out in Germany with Dr Stutz, Nikala raced her very fit mother-in-law up a huge hill in Germany!

Since liposuction, Nikala has more than tripled the amount of exercise she is able to take. She attends multiple fitness classes, has run a 5K to raise money for pancreatic cancer with her nurse colleagues and can do so much more with her young girls. The heaviness she would feel at the end of the day is now described as "slight" and nowhere near as bad as pre-liposuction.

Nikala now enjoys longs walks and does not feel the need to avoid high impact exercise, she embraces them. She works a 38-hour week and she ensures that she avoids sitting for long periods of time and has also set up a little gym in her back garden.

Nikala is compliant with her compression garments, washing at 40 degrees, never using fabric softener and never tumble drying. She takes excellent care of them and says she now "forgets" she has them on and loves them because they allow her to exercise (which she is addicted to!). Her Lipoedema Nurse, she describes as "amazing" and though it has taken a while, they have managed to get her tights to be the "perfect fit".

She moisturises her legs twice daily and performs dry brushing to stimulate lymphatic flow and also performs simple lymphatic drainage on a daily basis.

Deep Oscillation electrostatic lymphatic drainage (4-12) is performed three times a week via her personal unit via applicators. (It should be noted that Deep Oscillation was "a lifesaver" pre liposuction to reduce pain and heaviness at the the end of the day). She has a deep oscillation bespoke card programmed for the unit which is based on successful feedback from practitioners and Lipoedema patient feedback.

Nikala has a very loving and supportive family. Pre-liposuction, her husband even adapted her wellies so that she could attend a music festival and feel like everyone else. He cut the back of the wellington open and threaded beautiful red ribbons through to lace up comfortably. Her work colleagues are also tremendously supportive of her and understand her condition.

In the past, Nikala felt that the GP's she saw did not understand Lipoedema at all, but now she is very impressed with her current Lipoedema management team; she says they are very supportive, and her GP really understands Lipoedema. Great news for other ladies living with the same condition.

Nikala feels

"everyone should have the right to liposuction for Lipoedema, without a shadow of a doubt - it's life-changing!"

VISITING DR STUTZ IN GERMANY FOR LIPOSUCTION

"I travelled to Germany on the 19th of April 2017, it was never an easy decision to make, as I had never left my children for more than 24 hours with the added risk and worry of having an operation abroad without the luxury of the NHS that we have here at home.

There was also the added worry of putting additional financial worries on my family.

I had been to see a surgeon in the UK regarding vaser liposuction. The surgeon said I would also have to have a thigh lift and on-going operations. I did some online research and spoke to a vascular surgeon who voiced concerns regarding this type of liposuction to an already damaged lymphatic system and he didn’t feel this was a good option for me. Julie also did some research around the surgery and so I decided it wasn’t for me. Julie had always spoken very highly of Dr Stutz, so Daniel and I decided to investigate further. Within a day, it was easy to see he was one of the best. I emailed him and he asked me to send some photos over and we were talking for many weeks over email before I decided to bite the bullet and go over to have surgery with him in Germany.

Julie has always been really interested in the surgery and with my parents staying back home with the children, we asked if she would come with us to Germany and to treat my legs with deep oscillation before and after surgery. The surgery staff were so helpful and put us in contact with a lady who rented out a house on the same road as the clinic, which had all the things needed to help recover from the operation.

I attended my first appointment with Dr Stutz and his lovely wife; they were a pleasure to be around and I could already feel their passion to help women with Lipoedema. They were kind and understood the self-awareness issues that lady's with Lipoedema have. I had an ultrasound scan on my legs and it was found that I had a large vein that Dr Stutz was worried about bleeding during the operation, so it was decided not to carry out liposuction around that area. I also had an MLD treatment with his lovely wife and was shown the compression tights that I was going to wear post op.

On the day of my liposuction, I attended the Dr Stutz Clinic at 8 am, scared to death and worried sick. His staff were so lovely though and helped me get changed into a surgical top and some very jazzy paper pants. Dr Stutz was very kind and noticed as I got onto the surgical table that I was holding my back, something I have always done as I had a lot of lower back pain. He asked me if I have pain in the lower back area? I replied 'yes' and he said I can fix that. He did liposuction on the area during the surgery and removed a large amount of Lipoedema fat from the area and honestly, I got off that bed with an already much better back.

The surgery was around 4 hours long and we talked all the way through and his assistant kept showing me another full container of lipo fat. Daniel had decided he didn’t want to be in the room whist I was having the op, as he was also very worried and didn’t want to see me in pain. So, Julie came in with me and was talking and supporting me through the process. She was amazing.

It wasn’t painful at all and if there was a little bit of pain, Dr Stutz would read my facial expression and insert more numbing injection into the area. After the surgery, a nurse helped me into my compression garment and gave me a drink of water. I was asked to sit for a little while and then I was up and about. I walked home at a normal pace to our rented house.

Two hours later, I was shopping in a German supermarket. I was a little sore, but I was given some painkillers to ease the pain which helped.

I stayed in Germany for three days after my surgery and attended the clinic each morning to see Dr Stutz, who was over the moon with my results. On day two, he watched me race Julie up the hill and had commented about it on our last appointment. There was leaking from my legs, but I wore two pairs of black leggings on top of my compression and some inco sheets wrapped around which allowed me to go out without worrying about leaking. I walked for miles each day with Julie, as I was told this would help recovery and could even give better results.

I was told to shower in my garments the day after surgery and to keep them on for seven days. I washed the garments in the shower with just warm running water and it did keep them clean and then blow dried them on a low heat with a hair dryer or just sat on a towel and let them air dry.

Julie was a great support throughout, she treated my legs pre and post op and it really helped my results as my legs were lovely and soft on the day of surgery. I do believe this is why I had such great results. Your legs can feel really tight post op and deep oscillation helped to ease them off.

NIKALA'S MILESTONES

• In March 2020, Nikala finally married her 'best friend' - something she would of never have had the confidence to do pre-liposuction.

• She went to university and graduated. She is now doing her dream job as a Vascular Nursing Associate, helping others like her.

• She is not scared to get involved in activities with her 'beautiful girls' and now coaches her daughters football team.

• Her dress size has halved from 24 to 12.

• From not going out to LOVING going out with friends.

• From never feeling 'good enough' and hating taking her children out, to getting out and enjoying every minute with her young family and husband.

• From wearing "BLACK BLACK AND BLACK baggy clothes" that drew zero attention to herself to having the courage to wear Black with a splash of colour too!

"LOCKDOWN WEDDING MARCH 2020"

My wedding was always going to be very small and secret affair but I never dreamed it would be the day we went into lockdown one! Everything was cancelled the night before our wedding including our small afternoon tea afterwards, the photographer, and the ability to have 15 close guests. The only thing not to be cancelled was the wedding service (reduced to 6 guests), a Campervan and our overnight stay at a hotel a few miles down the road in Matlock. Nursing on a COVID ward for a few weeks prior to the wedding, I did understand the rational and the importance of keeping everything safe.

As Daniel and I sat and watched Boris close all the bars and restaurants, I just said "well this date wasn’t meant to be, maybe next time". Daniel replied "we still have a wedding service, so I’ll be there waiting to marry you tomorrow".

Daniel has always wanted to get married but I have always put it off or said 'maybe next year', as the thought of a room of people looking at me full stop, never mind in a dress at 20 something stone was an absolute nightmare for me. Even though I knew it always upset Dan, as he loved me just as much at 20 plus stone as he does at 10 stone. It was just something I couldn’t do.

After losing the weight, Daniel asked me again and I said "oh ok then" as long as it was small I would be happy. We got married with just our children and parents with us. It was a beautiful day and very special to us both. I wore a white wedding dress that my parents were over the moon to buy, as they joked they always thought I would get married in black and in jeans. Both our parent’s and close friends rallied round and made sure our day was lovely. We spent the afternoon at home eating a huge wedding cake my friend Shelly made me and posted a slice to all our neighbours, Covid-friendly of course! We decorated the house in our wedding venue items and it was a perfect day.

We travelled together in a beautiful white Campervan and were driven home in Dan’s Dads old white Ford Escort, the very same one that brought Daniel home from hospital when born.

I never thought I would get ever married but it was perfect and felt really special with lots of happy tears. Daniel has always been my best friend and supported me in whatever challenge I have faced. That support and love has always given me the confidence and drive to try my best at everything I do and because I know I have our two beautiful girls watching my every step.

It wasn’t easy to lose the weight and I do truly believe the operation helped me on my way but I worked hard and pushed myself each day and standing there getting married to my soul mate was worth every single push.

BY SHARIE FETZER, CHAIR OF LIPOEDEMA UK

"I first met Nikala and her then boyfriend Dan when I sat at the same table with them for a whole day at the Lipoedema Ladies conference in October 2015.

My heart went out to them, she was a young girl - quite large, with obvious Lipoedema legs and disproportionate shape. Both were very shy and barely said a word for the whole day, but a quick conversation stuck in my memory about how Dan had adapted a pair of wellies for Nikala, so she could attend a festival and be like everyone else. Knowing how enlarged Lipoedema legs can be almost impossible to fit into ordinary boots I thought this was a wonderful example about how supportive Dan was.

After the conference I sent Julie, Dan’s mum various Lipoedema UK booklets for Nikala and heard about her progress from time to time. I was a little worried when I heard she’d become a Zumba enthusiast thinking that it may not be the best thing for her legs. Over the years I heard about Nikala’s one off treatment of non-cosmetic liposuction in Germany, how well she was doing, exercising, dieting and keeping fit and of course self treating with the Deep Oscillation Personal Unit. I assumed she would still be overweight and the shy girl I remembered.

I next met Nikala at the Primary Care event at the NEC in 2019, Lipoedema UK had a stand for the 3rd year running and I was thrilled that many healthcare professionals, including GPs and Nurses were seeking us out, like long lost friends, to share their pride in diagnosing Lipoedema patients, after visiting Lipoedema UK’s stand in previous years.

Nikala and Sharie at the NEC

A slim and bubbly young woman approached our stand and said ‘do you remember me? I’m Nikala’ I was utterly astonished, I have never seen a bigger transformation. This Nikala was slim, outgoing and full of life. Her body was in perfect proportion, thin legs and very slim. She had a healthcare job she loved and was purposeful and enthusiastic, In a million years, I would have never recognised her as the shy overweight girl I met 4 years before.

Nikala is an exceptional, self-motivated young woman, with a loving and supportive family around her. She is utterly deserving of her new body and life. Without self-funding her surgery, her life and that of her family’s would now be very different. She would not have felt confident enough to achieve the new job. Everyday family life with Dan and their lovely daughters would be challenging and distressing. Nikala’s operation took a few days, a trip to Germany and was about the same cost as 2 or 3 family holidays. No-one can doubt it was life-changing, for Nikala, Dan and their two lovely girls.

My over-riding goal is to help all young women obtain an early diagnosis and treatment.

More young women like the old Nikala are emerging. It’s imperative that they get the treatments they need as early as possible. There are also thousands of older ladies who are now living with the consequences of a late diagnosis and lack of treatments, but Nikala proves there is another way. It is wonderful to see her transformation and happiness with life.

Well done Nikala, you are an inspiration. Sharie x"