Lipoedema and a Misdiagnosis of Ovarian Cancer
Jackie Smith was recently diagnosed with Stage 3 Type I/II Lipoedema in her knees, upper and inner thighs, hips, buttocks and arms. This diagnosis has given her a better understanding of her body but it has been a very long time coming with some heartbreaking mistakes and misdiagnosis along the way...
Jackie Smith has Stage 3 Type I/II Lipoedema in her knees, upper and inner thighs, hips, buttocks and arms.
"I was 18 and I was going through that awful stage of trying to fit in; trying to get rid of the puppy fat’ as my Mum called it. I went to Art College, where it was easy to hide behind the ‘art college student image’ as in any image goes.
Meeting a guy for the first time wasn’t easy, my legs had already begun to show signs of Lipoedema. You think it’s YOU! Your weight is about what you eat and your genetics. But none of my Sisters had great big lumpy inner thighs or sore aching legs. It wasn’t as if I was unfit, I played rounders, netball, top of the class! But try get me climbing ropes, no. Absolutely not. Or jump. Or jog. No. I could whack a ball for miles and I had great score skills in netball, but the muscles in my legs were just rubbish.
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Jackie existed on three digestive biscuits a day
In the first year at college I did meet a guy, but I really struggled a lot with self-loathing. So, I dieted. To the point I became a borderline Anorexic. I wasn’t aware that I was. But it pretty much was the case, with only eating 3 digestive biscuits a day. Only when my kidneys were struggling, did my Doctor to a home visit and a stone blockage was suggested. I was put on morphine for the night and was to get scans next day. I was diagnosed with Gallstones, a symptom of anorexia: these are hard cholesterol deposits that can cause nausea and abdominal pain.
It was only then that my Doctor said to Mum “Get her to eat, she’s is on the verge of Anorexia”. Yet! I weighed 10 stone and I’m 5ft 4", I was a size 12 to 14. And I still had these lumps in my inner thighs. Which, when I mentioned to my GP she said. “Oh, we all have them” being young I believed that and I thought ‘well my Dad has them, so it must be so’.
But yet I still was 10 stone with thick thighs and legs that hurt and feet that ached after walking for only a few hours. I had lumps in my tummy that felt like rocks. Yet nobody could tell me why. Or why it was that as soon as I ate I gained weight. I held myself to blame for many years. I didn’t have a bad diet and I would tell Doctors this. I was baffled by it, I’d say ‘but my friends eat more than me!”. “Then it must be what you eat they’d say.. “
Constantly told to diet by the medical profession
So, I would go away thinking ‘well that must be it’. So, I would try and eat what they ate and I’d pile weight on. I’ve blamed myself for So Many Years. Most of my life. Hidden behind a protective armour of unnecessary shame! Even when I was diagnosed with Ovarian Cancer.
A misdiagnosis
I remember the day so vividly. I just wanted to run. Hide somewhere so that I didn’t have to face anyone and those looks. The ones that say.. ‘aww bless her, you got this because you are fat. It’s your own fault’. Crazy I know. But it’s how you feel from the years of people glaring at you every time your poorly. Or pulled your back, or knee.. ‘Oh, it’s your weight’
I actually got admitted with a strangulated umbilical hernia; this was before they diagnosed the cancer (yes, even the umbilical hernia was my fault). They wouldn’t operate on the hernia because the, consultant did actually say “You’re too FAT. Lose weight and I'll push it back in” I was only 37 at the time. And it looked hideous. Not nice for a young married woman. So, I got rushed into A&E. They took bloods which when they came back I was told “You’ve got a massive infection’
“Okay.. well I’ve had antibiotics for a poorly chest” I explained. “Okay, we will carry out a chest x-ray”. It turned out I had pneumonia and so had a spell in hospital. I ended up with quite a bit of fluid on my lung and when they withdrew it, it showed some bad cells which the Doctor said were secondary cancer cells.
“We need to do an urgent CT scan to find the tumour. ‘I am referring you.” I felt petrified. I had to tell my Mum that day. She was looking after my Autistic daughter back then who was only 9 years old and non-verbal outside of the home. So, there was a lot of pressure on me to care for her needs.
I said to Mum ‘I’ve got an 11cm tumour on my ovaries and four other tumours in my tummy and some cancer cells in my lungs. My markers are 1,900, whopping high. It’s grade 4 cancer Mum” She went to pieces
A biopsy was not carried out with the explanation that there was too much fluid in my tummy to do one. Treatment started with Chemotherapy; a mix of Taxol and Carboplatin. After my first dose I almost died, my kidneys couldn't take it. I was rushed in and injected with pethidine for pain. The Oncologist met me on the ward the next day explaining that my kidneys could not cope. But I wanted to live and try for my children’s sake and “Can we try again? Give me the higher dose of allergy tabs and we have one more go?” It worked and so I completed five months of chemotherapy.
Five Intense five-hour rounds of chemotherapy. I lost my hair, my eye lashes and weight. For the first time in my life and without needing to starve myself, I had lost weight. After each round of chemotherapy, I would lose a stone in weight. My oncologist said ‘you are a breath of fresh air. Why are you so happy Jackie? I know chemotherapy is tough. Hard on you” I would reply because I have lost another stone! And it feels great! I don’t ache”
“You don’t?” shocked at me... “Well yes I do. My legs kill me after chemo. Straight after. And my knees more so. Like they are on fire! But I use my cool pad and Tramadol helps. But afterwards I feel great. No heavy legs. Yes, I’m tired. I can’t explain I’d say, I just feel better”
Then we got to the very last month. By then my body was exhausted. I had lost 5 stone in weight and chemo was taking its toll. By Christmas Day I wasn’t sure I’d even wake up the next day. I felt so exhausted by it all.
The tumour had not shrunk by December 2007 but my markers had gone right down to almost normal. So, I had a few months rest from it. By the April, the tumour had got bigger and the fluid in my tummy was returning. I was in pain from gallstones and the surgeon I’d been referred to said my Tummy was in a heap of mess looking at my recent MRI scans. She got a Professor to assist her in the operation and they cut me open from my breast bone downwards.
They removed my gallbladder, corrected the hernias and performed a hysterectomy and so removing the ovarian tumour. I had 200 staples in my tummy and I was wired up to so many devices. I spent 10 days in hospital. All the time I kept on telling myself "it’s going to be ok, just keep still. Don’t burst your staples’. The surgeon came to see me, she said “I’m pleasantly surprised. But I'll wait until things are back from the labs. I'll see you in two-weeks-time.”
Whilst I was in hospital, I over-heard a nurse saying that the professor had actually walked out in the operating theatre. I’m guessing he had not wanted to be any part of it. The whole time I was in hospital recovering, wired up to machines, having to shower with nurses holding one machine and another and another. All I kept saying was "I’m sorry .. I’m sorry, I’ve lost weight and that is why I’ve got this hangover tummy and lumpy legs”. Making excuses as to why I looked fat. Even after such a huge operation, I was still feeling guilty about my weight. Incredibly sad, I see that now. But the mental health side of this Lipoedema has you seeing yourself as the problem. And not ‘it’ being the problem.
There were many low moments in between, worrying about my two children, especially my daughter. There were some wonderfully spiritual moments too. And people came into my life who remain to this day. Sadly, some I met along the way didn’t make it. Really brave women. I could write a whole book just on that alone. And how in many ways, as sad as this time was in my life, It gave me a chance to grow into me. And be strong.
FOLLOW UP APPOINTMENT
And off I walked out of that room. Eager to tell my Mum. My lovely Mum, whom I’ve just lost in January this year in 2021. She went through so much for me. Crying with me as I stood trying on wigs. I had had long hair to my bum before I lost it. Mum, stroking my head when it all had to be shaved off. So much trauma.
And my two beautiful children. My special little girl. Who would lay beside me after each chemotherapy session stroking my hair. Singing. In her own way. Her actual first proper sentence she spoke was at that time. And my son who'd just become a teenager.. and all that entails.
They put me through so much. And as much as I got an apology from the Doctors and a letter saying how ‘in future everyone will have a biopsy before diagnosis and markers are unreasonable for diagnosis’. I was at the time just happy to be alive. I didn’t care about compensation. I didn’t care about anything much. Just that I was alive for my children. To raise them long into the future. And for a while things were good. Until the I hit the menopause and weight started to grow on me again. I was doing aqua fit three times a week. I attended the gym. The I began pulling muscles so I’d have to go months without attending. I was seeing a physio, first it was for my shoulder, then suddenly I got tennis elbow. Like what the heck is happening? I thought. Then the lumps in my tummy started to get bigger, dragging the skin down. And before I knew it, I was in a battle again. But still, to this day, I haven’t given up.
I’ve got lumps growing into my joints causing pain, I’ve got knee problems starting. My knee keeps giving way and they’ve done an MRI scan on it but they couldn’t see much going on to warrant the mobility problems I was having.
And boom.... The Golden Phrase!... “Losing some weight will help your joints” Ok. I understand that. But I have to ask this....
I didn’t get Compensation because by the time I realised what was wrong with my body it was too late to register a complaint to the hospital within their time scales. But I did try and got told “whilst it was admitted as a medical mistake, i.e. wrong diagnosis, it would have to be considered as to why I hadn’t complained within the 3 years from being told I didn’t have Cancer. I’d have to worry myself further, stress myself further, therefore, re-live the trauma. To get compensation and go through all that, trying to sound like I’d lost the plot to get it and become depressed etc. - no thanks.
But yes, NOW would be a good time to have been compensated, to readily use the compensation to get private treatment for Lipoedema.
Apparently you have to jump through hoops to receive compensation for bodily harm and make sure you do it in a time scale fitting to “their rules” - three years. Never mind the amount of time it takes to recover from such overwhelming trauma or trying to forget the shame of being diagnosed wrongly, or that you just want to grab back the time you lost with your family and friends or to forget, just for a while, the trauma of it all.
Those that should have cared hid behind the Policymakers. Integrity says a lot.
Doing what’s right should matter. I did what I thought was right by the Doctors who treated me. I saw yes it was their mistake but I still had a further three/four years of seeing these Doctors. They were still treating me. How could I possibly look them in the eye whilst taking them to Court?. That’s Integrity.
It was only then the surgical removal of this lumpy Lipoedema fat was refused, that I began to look at compensation and, even then, it was my oncologist who suggested it, indirectly.
Maybe it will become a serious issue once someone claims for negligence. For death. Or the many injuries it causes us. My hope is that in the very near future Lipoedema is diagnosed and treated. I hope my story helps someone in some way. Or at the very least helps the Health Department understand the huge pitfalls this disease brings about.
I hope my story opens the eyes of those that needing opening and that funding becomes awarded for those desperately needing the correct help.
Lipoedema needs to become accepted in society in order to promote kindness and better health care equally for all.
Thank you Mary for taking the time and interest to hear and share my story.
As for me, I’ll just keep trying.
Jackie
GoFundMe
About Lipoedema
Extracted from
Lipoedema is a disease that is defined by unphysiological accumulation of fat in the upper and lower extremities. Extension is commonly from the shoulders to the wrist and from the hip to the ankles, actually sparing the hands and feet, making it an often relatively straightforward clinical diagnosis that needs to be differentiated from obesity and lymphedema. However, it is still often misdiagnosed [1]. Unlike obesity, the unphysiological accumulation of subcutaneous fat does not respond to dietary changes or exercise [2]. In addition to the mentioned considerable deformity, patients suffering from Lipoedema experience considerable pain in the affected areas [3]. During the further course of the disease, patients regularly experience increased tendency to bruising and secondary Lymphoedema [3]. Finally, a great many patients suffering from Lipoedema eventually develop psychologic disorders [4]. So overall, albeit not life threatening, Lipoedema may severely affect quality of life in patients [5].
The exact causes of Lipoedema remain unclear to this day. There are some hereditary conditions like the Williams syndrome that are associated with Lipoedema [6]. Moreover, there are some families where an autosomal-dominant hereditary pattern has been observed [7]. Nonetheless, these hereditary cases are of a more anecdotic nature; in most patients Lipoedema is considered to be idiopathic. There is, however, one more feature of Lipoedema that is striking: Apart from the syndromal cases, it almost exclusively arises in females. 8 to 17 percent of all adult women may eventually be affected from the disease [1]. This gives rise to the hypothesis that there may also be an hormonal etiology to Lipoedema.
Treatment is dependent on the stage of the disease and ranges from conservative treatment options like compression treatment in the early stages of the disease to surgical options like liposuction in more advanced stages.
References
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- Forner-Cordero I, Szolnoky G, Forner-Cordero A, Kemény L. Lipedema: an overview of its clinical manifestations, diagnosis and treatment of the disproportional fatty deposition syndrome – systematic review. Clin Obes. 2012 Jun;2(3-4):86–95. doi: 10.1111/j.1758-8111.2012.00045.x. - DOI - PubMed
- Bauer AT, von Lukowicz D, Lossagk K, Aitzetmueller M, Moog P, Cerny M, Erne H, Schmauss D, Duscher D, Machens HG. New Insights on Lipedema: The Enigmatic Disease of the Peripheral Fat. Plast Reconstr Surg. 2019 Dec;144(6):1475–1484. doi: 10.1097/PRS.0000000000006280. - DOI - PubMed
- Dudek JE, Bia?aszek W, Ostaszewski P, Smidt T. Depression and appearance-related distress in functioning with lipedema. Psychol Health Med. 2018 Aug;23(7):846–853. doi: 10.1080/13548506.2018.1459750. - DOI - PubMed
- Alwardat N, Di Renzo L, Alwardat M, Romano L, De Santis GL, Gualtieri P, Carrano E, Nocerino P, De Lorenzo A. The effect of lipedema on health-related quality of life and psychological status: a narrative review of the literature. Eat Weight Disord. 2020 Aug;25(4):851–856. doi: 10.1007/s40519-019-00703-x. - DOI - PubMed
- Waxler JL, Guardino C, Feinn RS, Lee H, Pober BR, Stanley TL. Altered body composition, lipedema, and decreased bone density in individuals with Williams syndrome: A preliminary report. Eur J Med Genet. 2017 May;60(5):250–256. doi: 10.1016/j.ejmg.2017.02.007. - DOI - PMC - PubMed
- Child AH, Gordon KD, Sharpe P, Brice G, Ostergaard P, Jeffery S, Mortimer PS. Lipedema: an inherited condition. Am J Med Genet A. 2010 Apr;152A(4):970–976. doi: 10.1002/ajmg.a.33313. - DOI - PubMed
