My Lipoedema Surgery Journey

"Hi Mary, Lovely to hear from you and thank you for reaching out. I would be delighted and honoured to share my story to help raise awareness to ladies diagnosed with lipoedema. Thank you also for your kind comments regarding my legs. after living a life of hating every part of them; being so ashamed by the way they look and the burden of pain and mobility limitations - being proud of them is certainly an understatement!! I could imagine you are absolutely intrigued by Ramin’s process of tissue extraction – whatever he did while I was under that delightful anaesthetic is simply remarkable!! Some days I still can’t believe the difference he has made in my life. I am extremely excited to help"

Hi, I am 40 years old, and this is my story of living with Lipoedema; receiving a diagnosis in 2018 and successfully completing two surgeries between April & July 2021.

Diagnosis & Finding a Surgeon:

I have no memories of ever having normal-sized legs throughout my life.

As a child, I was always “chubby”, which progressed to my teenage years where my legs were in proportion with my overweight upper body, and then eventually into adulthood where after 2 pregnancies in my early 20’s they were larger and heavier than ever before. Through diet and exercise, hard work and determination, I lost 38kg of body weight, going from a size 20 to a size 8. Well, this was my upper body. Despite my solid efforts with nutrition preparation, daily gym – body weights/cardiovascular exercise and aqua aerobics, my leg size only marginally reduced. I was devastated…. ashamed to even look at them. I had worked so hard to become the fittest I had ever been in my life, but my body did not reflect my fitness and in fact, I felt my legs were getting bigger.

I hid them under any ankle-length dress, skirt, or pants that I could find. Even on the warmest of days, living in sunny Brisbane, Queensland, Australia – with temperatures sometimes greater than 40 degrees Celsius, (104 degrees Fahrenheit), I would cover myself up to avoid the humiliation of others seeing them. My Aunty and Grandmother on my father’s side had the exact same legs as me. Tiny upper body, a small petite waist, and “elephant legs”. As a niece and granddaughter, I always looked at them, and still do, to see strong, confident women. But for myself, my legs were a burden, and preventing me from living the life I wanted to live.

Through my early 30s, I continued my daily love for fresh air and exercise and maintained my healthy diet. My legs however started to become more heavy, painful and started to compromise my ability to exercise efficiently. My circulation was also very poor. Venous Doppler assessment of my lower limbs in 2013 gave no answers. My knees felt like they were bone on bone and grinding with every jog I completed. I reverted to only completing aqua aerobics for low-impact exercise and discovered my love for the bicycle to ensure I kept as active as possible.

In 2016 at the age of 34, I underwent an emergent hysterectomy for a uterine tumour, which thankfully despite its rapid growth, was benign. The recovery time was difficult, as I was adamant that any days missed from exercise would potentially cause my legs to get even bigger. 12 months after this surgery, my legs were the biggest they had ever been. I felt exhausted just by moving.

My wonderful, trusted GP, Dr Monique Glover, offered endless emotional support over the years as I discussed my frustrations and concerns and constantly blamed myself or put myself down for “not trying hard enough, or not exercising enough”. I was trialled on diuretics for fluid retention, completion of ultrasounds for my knee and mobility deterioration, vascular consultations, dietician and physiotherapy reviews, blood tests for autoimmune or thyroid conditions and emotional support as I simply could not figure out what was happening with my legs. I lived in exercise compression leggings as I felt it offered some support with the pain and heaviness. My determined and stubborn personality did not accept that this was my life, and I sought answers – spending a lot of my spare time between full-time shift work and parenting 2 children, researching potential diagnoses on the internet, and reading medical journals. Eventually, I found a website which showed pictures of women who had legs exactly like mine and read stories from those who had the similar frustrations and concerns as  I did. I finally had some hope.

In 2018 I contacted my GP again and discussed the possibility that I had lipoedema or lymphoedema. I recall the quizzical look on her face as I justified my “Dr Google” diagnosis, however as always, she listened and validated my concerns. She referred me on to a local Brisbane plastics and reconstructive surgeon, Mr Eddie Chang for an opinion. In late 2018 I walked into the consultation with Mr Chang for the best outcome I could have ever hoped for. This surgeon simply looked at me with a friendly smile, standing in his office only in my underwear, and said “You have lipoedema, I’m not touching you. The best expert in Australia is a surgeon called Mr Ramin Shayan – how do you feel about flying to Melbourne to see him? I assure you he will give you the results you are looking for”. Bursting into tears at not only the fact he gave me a diagnosis, I was humbled that he felt my surgery was too complex for him, and my future was best handed over to an expert surgeon, who was a 2.5-hour flight away, but would give me the results that would improve my overall quality of life.

Meeting my surgeon & surgical approach

My first appointment with Mr Ramin Shayan was in June 2019, almost 6 months after my initial diagnosis. The 6 months waiting period was almost a relief – there was so much to consider now that I knew I was on the right path to treatment options, and I wanted to continue to be in the healthiest clinical presentation prior to meeting a person who potentially would give me answers for my future long-term health and well-being. The consultation was one of the biggest moments in my life. Those who have lipoedema would completely understand this. Many tears on my behalf, and much encouragement and support from Mr Shayan as he discussed the limited pathophysiology but current research with recommendation of surgical options in conjunction with extensive occupational therapy guidance, and anti-inflammatory diet.

The surgical approach would mean I had one leg completed at a time – this would include extensive liposuction of both upper and lower limbs with excess skin removal. There would be a 3-month recovery period between the right and left leg, where I would have different-sized legs, but this approach would ensure I had less surgical complications from potential infections, deep vein thrombus, and be able to maintain my fitness. The decision for me to commence with surgery on my right leg first was due to the increased pain I was experiencing with the weight on my knee. I felt my right knee was deteriorating more than my left, and that my left knee was stronger to support me during the 3-month period between surgeries. From the moment I met Mr Shayan, I knew I completely trusted his clinical judgement and expertise. As a fellow healthcare professional, I was also extremely impressed and comforted by his sincere reassurance, empathy, and genuine kindness. I left the consultation feeling extremely blessed that my journey had eventually led me to this consultation.

The Decision – Complementary Therapies or Surgery?

It’s incredible to think that after waiting for so many years for a diagnosis, I was then overwhelmed by the thought of having “normal legs”. Mr Shayan gave me resources which encouraged an anti-inflammatory diet, which I diligently followed. I continued my exercise and liaised with one of his chosen therapists, Nani McMullin, for specialised garment fitting. At this point, with so many effective interventions, and finally having emotional relief from a diagnosis, a small part of me thought “I can beat this – I don’t need surgery… I’ll do what Mr Shayan has recommended but increase my exercise even more in the hope that he was wrong, and my legs will start to improve without the surgery”.

That optimistic but sadly unrealistic thought lasted 12 months – and was one of the reasons I delayed my surgeries. My other reason was being diagnosed with melanoma skin cancer, which required surgery and I wanted to ensure I was completely healed post-surgery before starting this journey.  Perhaps it was a blessing – as it meant that when I did confirm surgery dates with Mr Shayan, I was mentally ready knowing I had simply tried all other options, and I could finally be kind to myself knowing that I was not failing myself or giving up – I had a genuine diagnosis which needed surgical intervention if I wanted any chance of having “normal” and fully functional legs.

In the 12-month period leading up to my surgeries, I completed regular lymphatic massage with my local oncology and lymphoedema/lipoedema massage specialist, Kaori Langley, and used sequential intermittent pneumatic compression therapy via a hired pump. I used the pump every evening for pain relief, particularly after working long shifts where I was on my feet all day.

Surgery Planning – Travel and Work Commitments

I never considered living in a different state to my surgeon being a problem, until COVID-19 hit. I had organised long service leave from work for both surgeries and allowed myself a recovery period of 5 weeks for each leg, before returning to work.  I travelled to Melbourne, Victoria, Australia, on 25^th March 2021 to allow adequate quarantine time from my interstate travel for the first surgery to occur. 7 days of quarantine prior to my hospital admission date allowed me to be fully rested and ready to start this journey. My Dad and I had literally got on the first plane out of Brisbane as soon as I heard the news via my work colleagues when I was on shift, that Queensland was going into lockdown from midnight, so I felt extremely lucky I could continue with the initial procedure. Our local airline, Qantas, was excellent with ensuring I would have a wheelchair for airport mobility, and most importantly they reserved the whole back row of seats on the aircraft so that I could have my leg elevated for the flight post-surgery. Similarly, for my second surgery, I arrived a week early to quarantine in preparation for the procedure on 22^nd July, 2021.

Whilst Melbourne remained in lockdown for both my procedures, my place of accommodation, once I was discharged from the hospital, was supportive in ensuring I had easy access for mobility with crutches within the apartment, a balcony to get fresh air, and a full kitchen to ensure I was eating nutritious meals. The shower was big enough for a chair to be placed inside, so I could carefully wash my hair without getting water anywhere near my bagged-up and protected surgical site. As an energetic, outdoor person, I struggled with having to sit still to rest and recover… but patience is certainly a virtue and I caught up on a lot of reading and forced relaxation.

Surgery One – Right leg: 1^st April, 2021

Total tissue volume removed: 4600 ml liposuction of Fat (excluding infiltrates) (540g tissue) 

I went into theatre at approximately 8 pm, with so many emotions going through my mind. I was a 39-year-old woman, who had lived most of her life hating her legs – and now something I could have only dreamed of was becoming a reality. I had absolute complete confidence in Mr Shayan, my anaesthetist, and the nursing staff. I remember telling myself to just breathe.. that this is the beginning of my surgical journey and just take each moment as it comes. I had done the hard work – maintained my fitness and mental strength; now I just had to trust those around me. I knew my family, friends, and colleagues back in Brisbane were all thinking of me and had supported me in every part of my surgical preparation journey. The practical side of me also knew the reality of hard work was about to come with the recovery.

Waking up in recovery was as expected – my typical low blood pressure and nausea, however, I remember asking the recovery nurses multiple times for reassurance – “Has the surgery actually finally happened?”. It was almost 2.30 am before I returned to the ward, but despite everything, I was still in disbelief. I recall Mr Shayan sending me intraoperative photos of my leg after the operation, so I could see the amazing outcome before the dressings and compression wraps were applied, however, it took me almost 24 hours, and 2 nurses holding my hands before I had the confidence to look at the photos. Seeing such a difference, and the exceptional outcome – words can’t even describe it. The result was far better than I could have ever imagined. Yes, there were many, many, tears!!

It felt surreal knowing one leg was so light compared to the other. But this is where I knew I had to draw on my mental strength to keep positive and motivated to recover and prepare for the impending second surgery.

Milestones

• After the first 24 hours – up and walking with physio (drains in situ)
• Day 2: physiotherapist review and crutches provided. Drains and cannular out. Walked 80 metres along corridors
• Day 3: lipoedema massage therapist, Nani, commenced lymphatic massage
• Day 5: discharged from hospital
• Day 12: return flight to Brisbane, Queensland
• Day 13: I was no longer using crutches
• 4 weeks post-surgery: I walked 2km with no pain
• The very next day – I doubled my walk distance to 4.4km
• 5 weeks post-surgery: I returned to work as a nurse, baggy scrubs hid the different leg sizes and I used different compression during the day compared to overnight
• 6 weeks post-surgery: swelling was very minimal, and I started back to aqua aerobics in my parents' pool
• 7 weeks post-surgery, I completed a 2km hike through the mountains with friends.

I continued my once – twice weekly lymphatic massage with my local therapist Kaori, and used the sequential intermittent pneumatic compression therapy every morning and night for 20 mins at a prescribed compression from my occupational therapist, under the guidance of Mr Shayan. I maintained my anti-inflammatory diet as closely as possible (considering my love of chocolate!).

Surgery Two – Left leg: 22^nd July, 2021.

Total tissue volume removed: 4970 ml liposuction of Fat (excluding infiltrates) and 378 g tissue 

I went into theatre at approx. 7 pm and arrived at the ward post procedure just before midnight. I remember seeing Mr Shayan in the holding bay outside of theatre – and that is when the reality hit me. This is the final surgery for me. 3 months of waiting for this moment. Second time around, I was extremely prepared for the recovery. I was less nervous about the procedure and

Milestones

• After the first 24 hours – up and walking with physio (drains in situ)
• Day 2: lipoedema massage therapist, Nani, commenced lymphatic massage
• Day 4: no longer required crutches to mobilise at all
• Day 5: first drain removed
• Day 6: second drain removed
• Day 7: discharged from hospital
• 2 weeks post-surgery – return flight to Brisbane, Queensland
• 4 weeks post-surgery – returned to work and gym
• 5 weeks post-surgery – no longer required lymphatic massage. Swelling minimal
• 7 weeks post-surgery – riding the indoor bike every evening 10 km.

Recovery Overview

I found with my personality; the hardest thing was being compliant with sitting still! Having the diseased tissue removed from the first leg, led me to being very cautious and worried about the strain on my left knee. I recall using the crutches for a significantly longer period, compared to the second surgery where the crutches were gone after a few days, and I felt that I was genuinely light as a feather and ready to run a marathon! I was adamant to not rely on strong painkillers for any longer than necessary and found Panadol & Nurofen very effective. Going into the second surgery as fit as possible, was also important for me, and I truly believe it resulted in the recovery and outcome that I was blessed to have.

Mentally, I coped better with the second surgery, as there was a lifetime of hatred towards my legs, that simply faded away. For somebody who doesn’t have lipoedema to understand, it’s hard to explain the body hate we experience, and the associated dysmorphia. The emotional journey to learning to love myself and appreciate the strong legs that got me through the first 39 years of my life before these surgeries, has been an important one to experience.

I no longer experience poor circulation, pain, swelling, restricted mobility or embarrassment. My knees are feeling great with the huge amount of weight taken off them, and I regularly complete cycling, running, hiking and swimming pain-free. Just 3 months after my second surgery, I completed a 100 km charity bike ride. It was an incredible feeling completing it pain-free and feeling as strong and fit as I had ever felt before. The heaviness is gone, not only physically but also emotionally, and I genuinely feel like Mr Shayan has given me a second chance to continue to make the most of my very precious life. My 40^th birthday was celebrated in style – and I confidently wore a dress that was above the knee in length!

Both my Aunty and Grandmother understand now that they would most certainly have the same diagnosis as me, without any formal medical assessment. They are extremely proud and appreciative that I was able to have these surgeries to better my quality of life, support other women who are also experiencing the journey I have lived, and continue to raise awareness both within Australia and overseas to not only the wider community but also to my fellow health care professional colleagues.   

PhysioPod Question 1: Do you wear any compression now?

"The only compression I wear now is sports compression.  So either 2xU shorts (a sports compression brand- that offers fantastic high-quality support) or long leggings on cooler mornings. 

Prior to surgery, and when the pain was at the worst - including the lead-up to meeting Ramin, this was all I wore. It was only when I linked in with the occupational therapist and specialist Lipoedema therapist that I used the prescribed compression as seen in my photos. 

PhysioPod Question 2: Has surgery resulted in your legs being totally pain-free?

"Yes, the surgery has resulted in my legs being absolutely 100% pain-free" 

    Thank you so much to for sharing her story with us.

Mary and Julie, Sisters and Directors of PhysioPod® UK Limited.