Ashamed to Awareness: Living with Lipoedema

https://www.abc.net.au/news/2023-03-22/lipoedema-awareness-body-image-women-health/102093340

Xanthia's TikTok followers noticed something her doctors didn't. It changed everything For years, these women say they've been dismissed and shamed for a painful disease they have little control over. Today, they're using their new-found knowledge to deliver a powerful message.

Ever had those days where you are puffy, swollen, discolored and not feeling good in you own skin?
Yeah, me too! Today it was looking at these photos that helped me shift my focus. I’m halfway through my surgeries and sometimes forget how big the changes in my body are, but luckily I have amazing visual reminders 😍

Surgery done with a surgeon from Inigo Cosmetics based in Brisbane. The dr and his team have been absolutely amazing!

6 days post op for my arms…
Either I’ve become immune to the discomfort of liposuction or the lipoedema in my arms was so separated from the rest of my arm as recovery has been a breeze!
Minimal bruising, little to no discomfort, and have returned to most normal activities!

Early on after diagnosis I was explaining lipoedema to a customer and she said something that really resonated with me then, but as I compare before and after pictures I feel it so much stronger now…
‘You sound like a skinny person trapped inside the body of a fat person’ and she didn’t know how much I felt that statement then. And now…. I’m not drowning underneath the lipoedema weighing my body down, I can finally see the light at the surface. I am not finished yet, this disease will be a lifetime fight but it doesn’t own me anymore and that’s the life raft I plan to hold onto 💪🏽

May not be Gucci or Versace but hey… this is me 🤷🏼‍♀️
Meghan Trainor

This song from @meghantrainor just feels right… #helloworldthisisme #lipoedema #lipoedemaawareness #bodydysphormia This song from just feels right…

Body dysmorphia is a cruel, cruel thing.
4 weeks post lowers & 10 weeks post thighs and I still find myself thinking that my legs are still fat & gross.
Many people have asked if i had taken before & after pictures, the before yes but I still hadn’t stood in front of a mirror & looked at myself ‘after’
Tonight I finally did… and would you believe it? My legs look different!! 🤯
Looking forward to getting back into exercise & seeing where these legs can take me 💪🏽🦵🏻

Scrolling through tiktok and came across this video…
Embod AU offers a machine that has the benefits of a MLD (manual lymphatic drainage) and infra red all in one.
You can bet I booked myself in pretty quickly to test it out next week.
Watch this space for how it goes!

embod.brisbane on TikTok Low impact workout and lymphatic drainage massage suitable for all ages and fitness levels

Learning about these things called knees!!

I’m laying here 1 week post op for my lowers and caught myself staring at my legs… they don’t quite look like mine 🤔🤯

Last week Dr Chinsee took 4.8L of lipoedema out of my lower legs. Definitely more pain and discomfort than I felt from my thighs 😅

2 surgeries down, with a couple more to go but excited to see what I can do with 10L less of lipoedema in my legs 🦵

Hello all of you wonderful people.

Many apologies for how quiet I have been for many, many months. I have had quite a few ups and downs over the last months. I have spent the better part of the last 12 months doing research into surgeons, booking consultations with different surgeons only to cancel them after a few stories started to surface.
I always knew this disease wasn’t a clear-cut case of you need to do X to get results but the emotional rollercoaster is something that I have struggled to acknowledge.

I had the veins in my right leg operated on back in November 2021 with Dr Kruger here in Brisbane. He was great, very direct, straight to the point and no sugar coating anything. Which is exactly how I have chosen to approach having lipoedema. This surgery did result in me waking up in hospital the morning of my birthday, so that was a not so fun treat.

Fast forward to April this year where I was talking to a customer at work about how I had hit a few speedbumps in my surgical journey because of the recent happenings in the cosmetic surgery world. Amazingly, it turns out that she actually works for a cosmetic surgeon who she highly recommended I go see. 9th of May I did just that. Previous consultations with other surgeons had me on edge and not sure how I wanted to proceed, however on this day I had zero reservations.

I booked in for surgery with Dr Ian Chinsee here in Brisbane, and as I am typing this I am laying in bed, 4 days post surgery on bilateral thighs. Yes, you read that correctly!
On Wednesday 17th August I had vaser liposuction on my thighs, removing 5.2Ls of diseased fat.
Apart from bleeding/weeping surgical fluids through my dressings , I am pleasantly surprised how little pain I am in. I have a second surgery booked in for September 27th and hopefully I am well on my way to feeling like my body finally belongs to me and not some disease.

If you are so inclined, I still have my GoFundMe going and every dollar helps

Yesterday had me ticking of the first major obstacle to bettering my health. A quick overnight stay in hospital after having PFO closure surgery done. The hole in my heart was 9mm x 6mm, and they have implanted a 25mm circular device to cover the hole. This means I’m on the way to being a bionic woman right!?! 😅
Day 1 after surgery and I’ve already noticed a huge improvement in circulation, fingers crossed it fixes the migraines too!

Shout out to mum for my pre-surgery flowers & to my best mate for the sneaky deliver that just arrived 🥰

Next step is to get the vein sorted 🤞🏼

Yesterday had me ticking of the first major obstacle to bettering my health. A quick overnight stay in hospital after having PFO closure surgery done. The hole in my heart was 9mm x 6mm, and they have implanted a 25mm circular device to cover the hole. This means I’m on the way to being a bionic woman right!?! 😅
Day 1 after surgery and I’ve already noticed a huge improvement in circulation, fingers crossed it fixes the migraines too!

Shout out to mum (Janine)for my pre-surgery flowers & to my best mate (Amy) for the sneaky deliver that just arrived 🥰

Next step is to get the vein sorted 🤞🏼

Don’t let the smile fool you, I was super uncomfortable and not enjoying having my photo taken. However, I didn’t do this for me. I did it for all those people who suffer from Lipoedema. Whether they are diagnosed or not.
You are not alone, you are not faulty, you are not unloveable.
You are strong, you are beautiful, and you more than what your legs look like!

Specialist appointments...
It has been one heck of a ride these last few weeks. I made the decision to look into what surgical options I have available to help reduce the side effects caused by my lipoedema. This lead me down the path of making an appointment with Dr Chris Lekich who I kept hearing about on the many lipoedema pages I follow. To continue reading click on the link below.
https://embracinglipoedema.wixsite.com/embracinglipoedema/post/specialist-appointments-here-i-come

Specialist appointments - here I come! Welcome back to the rollercoaster. It has been one heck of a ride these last few weeks. I made the decision to look into what surgical options I have available to help reduce the side effects caused by my lipoedema. This lead me down the path of making an appointment with Dr Chris Lekich who I kept....

It’s been a crappy few months with my health and now covid has interrupted plans to see my best mate after a couple of years. Then a random knock on the door, where I tell them I didn’t order anything and it can’t be mine 😳😅
Good thing I accepted the delivery! Thanks for the smile that I needed Amy (granted it’s not replacement for seeing you but I guess it will have to make do 😂) miss your face xx

After many doctors appointments and potential surgeries that I am facing to help get ahead of this disease I made the decision to create a Go Fund Me. I ummmed and ahhed about whether I should do it or not but because of the final $$ amount, I swallowed my pride and am sharing this with you all.
Your small change can help change a life. Every little bit counts.

https://gofund.me/da75511c

Donate to Katie’s Lipoedema Surgeries, organized by Katrina Schopp Hello there! Let me start off by introducing myself. My name is Katie and I received an of… Katrina Schopp needs your support for Katie’s Lipoedema Surgeries

Did you know that you can get a Chronic Management plan from your GP? There isn't much for lipoedema that is covered by the government but there are things to ask for that can help!

New blog post is up too, link in the comments :)

Much Love

Department of Health | Chronic Disease Management Patient Information Planning your health care, Patient Information Sheet

Process to diagnosis.
Next blog post is now live.
It is here that I introduce the naturopath who started the domino effect of my searching for answers. If you are looking to get in tune with your body and better your health I can highly recommend Synta at Euneek You Health. Obviously there is no 1 right way to manage lipoedema but it is important that you discover what works for you! Blog link in the comments

https://www.euneekyouhealth.com/

Euneek You Health | Acupuncturist & Naturopath |Springfield Lakes Euneek You Health is an acupuncture and naturopath clinic based in Springfield Lakes. We focus on improving your physical, mental and emotional health in a way that is unique to your needs.

You have to live how Facebook listens to us 😳😅
I travelled down to the golf coast today to have a bubble test to check if I have a hole in my heart. This is a prerequisite prior to any leg surgeries.

Unfortunately for me the news wasn’t what I wanted to hear. I am one of the 25% that has PFO. No sooner had I thought that I had my head wrapped around lipoedema and my plan of action, then I get this news.

It feels like this is the disease that just keeps giving, and I don’t want any more ‘gifts’ 😅
Next step is off to the cardiologist for further testing. Just remember that even if you don’t have symptoms sometimes it’s good to be on the safe side and double check!

PATENT FORAMEN OVALE (HOLE IN THE HEART) AND LIPOEDEMA PATIENTS

Warning: This article has been posted to educate, not alarm. Please read this post carefully the whole way through.

* What is the Foramen Ovale?

The foramen ovale (foh-RAY-mun oh-VAY-lee) is a small hole located in the septum, which is the wall between the two upper chambers of the heart (atria).

Before a baby is born, it does not use its lungs to get blood rich in oxygen. Instead, this blood comes from the mother’s placenta and is delivered through the umbilical cord. The foramen ovale makes it possible for the blood to go from the veins to the right side of the fetus’ heart, and then directly to the left side of the heart.

The foramen ovale normally closes as blood pressure rises in the left side of the heart after birth. Once it is closed, the blood flows to the lungs to get oxygen before it enters the left side of the heart and gets pumped to the rest of the body.

* What is a Patent Foramen Ovale?

A patent foramen ovale (PFO), also known as a “Hole in the Heart”, means the foramen ovale did not close properly at birth, so there is still an opening in the septum. In most cases, the PFO does not stay open at all times. Instead, it’s more like a flap that opens when there is higher pressure than normal in the chambers on the right side of the heart. Situations that can cause greater pressure include straining during bowel movements, coughing, sneezing, climbing stairs and exercising. When the pressure gets high enough, blood may move from the right atrium to the left atrium.

The condition affects about 25% of the population, but many do not know they have the condition.

* What are the Risks and Symptoms of Patent Foramen Ovale?

Many patients with a PFO do not have any recognised symptoms. However, the condition may play a role in migraine headaches (particularly with aura), tiredness, breathlessness, vertigo and brain fog; and it increases the risk of stroke, transient ischemic attack and heart attack.

> Migraine headaches

Patients with a PFO may have migraine headaches with aura. Although the migraines stop for many patients who have the PFO closed, the paucity of studies on the issue mean there still remain numerous theories about the efficacy of closure.

> Stroke, transient ischemic attack and heart attack

PFO increases the risk of transient ischemic attack (TIA), stroke and heart attack. This is because when pressure increases in the chambers on the right side of the heart, it is possible for a blood clot or solid particles in the blood to move from the right side of the heart to the left through the open PFO, and travel to the brain (which causes a TIA or stroke) or a coronary artery (which causes a heart attack). A TIA is caused by a temporary lack of blood flow to the brain. The symptoms are the same as a stroke, but last less than 24 hours.

Many times, a TIA or stroke is the first sign of a PFO. Patients younger than age 55 who have a stroke without a known cause (cryptogenic stroke) are more likely to have a PFO. These patients are also more likely to have a deep vein thrombosis (DVT).

Patients with a PFO may also have an atrial septal aneurysm. This condition means the top portion of the septum is bulging into one or both of the atria (top chambers of the heart).

> Other PFO symptoms

PFOs do not cause chest pain, heart palpitations, or heart failure. PFOs typically do not disrupt heart function and people are usually able to exercise and carry out all activities normally. However, some people with PFOs can suffer symptoms such as unexplained seizures (which may be mistaken for epilepsy); blue lips; cold hands and feet; persistent tiredness/fatigue; brain fog; sensitivity to noise; unexplained back pain; swelling in legs and feet; overly red face after exercising; low grade constant headache; breathlessness; vertigo; or difficulty running, climbing stairs or exercising due to a significant drop in oxygen levels.

Symptoms of a Stroke and Transient Ischemic Attack (TIA)

• Sudden weakness or numbness in the face, arm or leg on one side of the body
• Sudden blurred vision or trouble seeing out of one or both eyes
• Can’t speak or trouble talking or understanding what others are saying
• Dizziness, loss of balance, unstable walking
• Passing out for a short time
• Suddenly can’t move part of the body (paralysis)

* How is patent foramen ovale diagnosed?

Specialised testing is needed to detect a PFO, as it may be missed in routine cardiac testing if it is not specifically tested for. Testing includes:

• Echocardiogram (echo) – An ultrasound of the heart to check blood flow across the heart valves and chambers. If performed as part of routine cardiac testing the echo may miss the PFO, which is why a TEE is recommended. An “all clear” echo doesn’t mean that a patient is clear of a PFO.
• Transesophageal echo (TEE) – A probe with a tiny camera is placed in the esophagus (swallowing/ food tube) . This type of echo shows a clearer picture of the defect than a standard echo does.
• Bubble study – This is done during an echo or TEE. An IV filled with agitated saline is placed in the arm. The saline makes bubbles that the doctor watches to see if they move from one side of the heart to the other.

Other tests my be needed to check heart rhythm, the nervous system, and conditions that increase the risk of blood clots (hypercoagulable state).

* Why is it important for Lipoedema patients to rule out a PFO if they have symptoms?

There is not a currently established link between PFOs and Lipoedema, because no studies have been done yet. We know of many Australian members of Lipoedema Warriors who have had a significant PFO confirmed, after referral to a Cardiologist by Australian Phlebologist and Lipoedema specialist Dr Chris Lekich. Of those women, the majority have been found to have very large holes. All have required surgery to patch the holes, including several who required major surgery due to the size, location and complexity of her hole.

It may be that those women are purely just representative of the wider 25% of the population who have a PFO; or it may be that there is possibly a connection between Lipoedema and PFO, given that there is also a connection between Lipoedema and connective tissue disorders such as hypermobile Ehler’s Danlos Syndrome (hEDS). We don’t know yet, as there have been no published studies on this issue undertaken anywhere in the world (Dr Lekich and his consultant Cardiologist are looking at changing this). So at the moment everything is just speculation, but speculation worth noting if you have PFO symptoms, because anecdotal evidence shows that a PFO can have significant impacts on Lipoedema patients.

THERE IS NO NEED TO BE TESTED FOR A PFO JUST BECAUSE YOU HAVE LIPOEDEMA. There is cause for further investigation if you have any of the PFO or associated heart defect symptoms discussed above, especially migraines with aura or a history of strokes. It is especially important to discuss the possibility of a PFO with your doctor if you have obvious PFO symptoms AND you are planning to have surgery, including liposuction for Lipoedema.

* Why Treat a PFO?

The PFO’s flap-like valve enables shunting — the abnormal mixture of blood between the right and left sides of the heart. If the PFO allows right to-left shunting, oxygen-deprived blood can carry harmful substances to the brain. These substances include small blood clots, chemicals that may trigger migraine, or nitrogen bubbles that form when coming up from deep-sea dives.

Blood clots that cross a PFO and travel directly to the brain can lodge in an artery and limit blood flow to a part of the brain, causing a stroke or transient ischemic attack (TIA). Risk of this can be increased during surgery.

Also, ALL the Lipoedema Warriors who have had their PFO patched have seen a SIGNIFICANT improvement in their overall health and quality of life. All are very grateful that it was found and repaired. Please keep this in mind if your doctor advises that a PFO doesn’t need to be repaired.

* What do you do now?

If you have no PFO symptoms, you don’t need to do anything. Just continue educating yourself and managing your Lipoedema sensibly.

If you do suspect that you might have PFO symptoms, don’t panic. You should firstly discuss your concerns with your doctor, and reference this post if necessary. If your doctor is unsure, seek a referral to a good cardiologist, or a switched-on phlebologist or vascular surgeon like Dr Lekich, for a second opinion. The many Warriors who were diagnosed with a PFO were all told repeatedly by their previous doctors (including a cardiologist) that it was “just a migraine”, or their echo was clear, so please be aware that this may be the response you get from your doctor initially. To reiterate - an echo may miss a PFO, as it requires a special type of echo to find a PFO, and that type of test is only done if a PFO is suspected. Also the doctor needs to actually test for a PFO, it is unlikely to be found in routine cardiology testing, especially if it is not specifically looked for.

If you have any questions, please ask them here and our PFO-aware group members will be happy to discuss them with you, within the limits of their patient knowledge and experience. However please note that all information provided by Lipoedema Warriors is not a substitute for professional medical opinion. Our group members can talk about their own knowledge and experience, not provide you with professional medical advice.

P.S. If you clearly have the identified symptoms and your doctor refuses to test for a PFO, find another doctor. This is the same advice we recommend if you have a doctor who dismisses Lipoedema. Your life is not worth risking for the sake of keeping the peace with condescending doctors who don’t necessarily know everything. Remember there are Warriors with huge PFOs who were told by numerous doctors, including Cardiologists, (who didn’t think of looking for a PFO) that there was nothing wrong with their heart. Likewise, if you do have a PFO and debilitating symptoms, and your doctor recommends not repairing it, remember the 100% of Warriors with PFOs who are glad they got it fixed and saw immediate improvements in their health. Also be aware that 2 of the Warriors with PFOs are sisters - if this is just a random thing that affects 25% of people, what are the odds of 2 sisters having both Lipoedema and a PFO?

The majority of doctors do not know Lipoedema bodies better than we do. There is so much anecdotal evidence connecting many of our problems to connective tissue disorders, but so little research into how it all fits together. Be your biggest advocate when it comes to your health. Always.

June is Lipoedema Awareness Month.
I didn't realise how fitting my timing was when I decided to share my own battle. The biggest misconception I have heard about most lipoedema warriors is that they are just fat.

Yes. Lipoedema is fat. Abnormal fat. Stubborn fat. Unwanted fat. Against our control fat. We are not necessarily unhealthy, but we are most definitely unlucky.

I challenge you to join me and educate yourself on this disease. Furthermore, if you are a lipoedema warrior too, today is a good day to begin to love yourself. It's time for change. Stand in front of that mirror, own who you are and love yourself!

Lipoedema - Time For Change Lipoedema Awareness We encourage individual lipoedema patients to please share this clip on their own social media, with medical professionals, friends and f...

Part 3 is live. Click below to continue on this discovery with me.

https://embracinglipoedema.wixsite.com/embracinglipoedema/post/ashamed-to-awareness

The story continues...
Post 2 - Here comes the hormones just went live.
https://embracinglipoedema.wixsite.com/embracinglipoedema/post/here-comes-the-hormones

Hello there!
Let's start off with introductions.
My name is Katie. I am a 30 year old living in Brisbane, Australia.
I received an official diagnosis of Lipoedema at the end of 2020. (What a way to round out one of the toughest years I have faced yet, Thanks Covid-19!)

I am going to face one of my biggest fears and be vulnerable by sharing a huge part of myself with all of you.

To follow my story check out my blog on the link below
https://embracinglipoedema.wixsite.com/embracinglipoedema/post/let-me-introduce-myself

Much love,
Katie ❤️

Let me introduce myself Hello there! Let's start off with introductions. My name is Katie. I am a 30 year old living in Brisbane, Australia. I received an official diagnosis of Lipoedema at the end of 2020. (What a way to round out one of the toughest years I have faced yet, Thanks Covid-19!) Before I tell you about my dia...

A current affair hit very close to home for me a couple weeks ago...
I have had the thought many times over that I should share my story, only to back track and want to hide away from the world in my own shame about my body.

For the last 4 months I’ve been on a bit of an emotional roller coaster learning about this disease that I had unknowingly been living with since puberty.

For years I have been told to lose weight.
‘You’re just fat, go on a diet’
‘Just don’t eat so much’
‘Join a gym and do some exercise’
‘It’s easy to lose weight if you actually just try’
You hear these things often enough you begin to believe it... but I have tried dieting, calorie deficits, Keto, elimination diets. I would lose up to 5kg yet my legs never changed.

I’ve always been active my entire life. I’ve played netball for as long as I can remember. I go to the gym, walking, yoga... I’ve always worked active jobs where I’m on my feet all day. Yet I was always ashamed of my legs and how big they are.

And the pain!! The hot swollen legs after a huge day, the throbbing on hot days, the restless legs because they hurt so much it’s uncomfortable to sit still. For me, this was normal... doesn’t everybody feel this way?

Back in November 2020 I met a naturopath, Synta (Euneek You Health) and through our initial consult I made an off hand comment I thought I may have this thing called Lipoedema. Instead of brushing me off as many doctors had been doing over the last 5 years after I had heard of this disease, she just nodded and said ‘I thought so when you walked in’
Finally someone listened!! Fast forward a few months and I received an official diagnosis in February 2021.

This is going to be a lifetime struggle that I will have to always face. However I want people to realise that 1 in 11 women struggle with this disease and many are not even aware they have it. Sometimes no matter how hard they work or starve themselves some women will always be ‘Fat’ but I ask you to perhaps educate yourself before making offhand comments about how they look or telling them perhaps they need to just try harder. The physical aspect of this disease is immense, but the psychological damage can outweigh that if we as a society don’t think before we act.

https://9now.nine.com.au/a-current-affair/painful-disease-lipoedema-passed-off-as-obesity-in-australia/0cdf3abb-677a-421b-9cde-23caa9178b6c?fbclid=IwAR1k9k7IoM4BX3QwIL3DuqBqbvj2J0NS9kwGW0L-u_U-tCjSjzFBGZnuG1I

The painful, little-known disease being passed off as obesity The painful, little-known disease being passed off as obesityBy Tanya Weingarth|2 months agoA Queensland mother is calling on the Federal Government to help fund life-changing surgery that would assist Australian women living with a crippling condition.Jodie Sawyer broke down in tears as she explain...