2016 Lipoedema conference

I live about 10 miles outside Reading and thought that I should make every effort to go to this years conference which was held over the weekend of 25/26 June. It was a tricky decision as it was the weekend before our daughters wedding and I had quite a few things to do but as its becoming an annual event I didn’t want to wait another year without information and thought it would be time well spent.

There were lots of good things that happened but probably the best thing was acceptance. Since being diagnosed I have come round to the idea that I am not alone, by joining forums and meeting some wonderful NHS staff who have all taken time to make me realise that it is not my fault. It is only when you walk into a room full of people who have the same condition as you and you realise you are not the only one. I am firmly somewhere in the middle of the spectrum of lipoedema I realised, and while there were some people there who, if I looked like them I would be deliriously happy, equally at the other end there were people who were having trouble walking and clearly have problems with everyday tasks.

The clear message was there is no cure, and that is hard to take on board as I think we all feel that if we go to our GPs we will get a prescription and a pep talk and we will be made better.

A large part of the first day was given over to presentations from various clinics from around the world showing is how Tumescent liposuction works and it would benefit our condition.This form of liposuction is more specialised and uses smaller needles. This comes at a cost as it is classed as plastic surgery and a cosmetic procedure and therefore non essential. Having met some of these people, I would beg to differ, there is nothing cosmetic or non essential about this procedure, and would without doubt improve lives. The problem is that each area would cost about £3-5k ie per thigh,calf, arm so you are looking at about £20k to get your legs done as well as the upheaval of travelling abroad for the operation. I would suggest that this is too much for a lot of people to find in their budget, but the benefits would be huge, not just in mobility but in self worth, better productivity and everything that fit healthy individuals take for granted .

I recently saw a new DR at my surgery and he was very nice, but regardless of my reason for visiting him, the conversation soon turned around to my obesity and once again being offered a gastric band operation. This is the NHS cure all at the moment ( I have now been offered it 5 times) and I can see why it would save money in the long term if it prevents you developing weight related complications in the future. But what if it causes more problems than it solves? What if you suddenly wake up and realise that you can never eat a proper family meal again.What if you fail to take up enough nutrients and suffer from other issues lack of vitamins give you? The adjustable gastric band has fallen out of favor, being replaced with complete removal of half your stomach. There is no place in my head that thinks that this is a good idea. What if you have a condition like mine where I am not pre-diabetic and have low cholesterol ( because I eat good fresh food that I cook from scratch.) already but my fat cells are mischievous and misbehave. If I accept his offer it may get rid of my non lippy fat- I don’t deny I have some, but I have read many comments on forums where the legs remain large,meaning that not all fat is equal, in the way it behaves. How must that make you feel when you have excess skin and an even larger discrepancy between your top and bottom. That,to me is a much worse place to find yourself in. The thing is ,as usual with all things NHS they are happy to treat the problem but not the cause, a quick fix that hopefully will work and if not then that’s another problem for another day, hopefully from someone else budget pot. They seem to tar us all with the same brush, assuming we are lazy people who eat too much and think our weight is someone elses problem.

They are well intentioned in spending ( I have read ) around £10,000+ for the operation. But before you can have the operation you are given counselling, so you fully understand what you are doing, why then can you not spend this money on better education, or more relevant counselling , People over eat for a wide range of reasons and some of them can be solved if they helped to understand why. It is a addiction that is made worse because you can not give up this particular drug. In short, there are other  non drastic solutions,that may work and should be exhausted first. The other sad thing as far as I personally concerned that over eating is not always the primary cause and there a lack of knowledge in our medical staff which makes things worse, my new Dr had not heard of it it, he has now.

I was also asked if I would like to see a dietitian. I laughed politely and  said  I ended up educating the last one I saw, and so if he could find one that had knowledge of my condition I would happily have a conversation but not to just be given a plate breakdown and told to eat less. I already do that, and have for some time, which is why I weigh the same as I did 2 years ago.  I conceded to have see the dietitian and went to book the appointment. I explained to the receptionist that this was not my first visit and I had fallen by the way side because it was impossible to get an appointment. The receptionist said ‘yes dear, now let me see ,oh shes fully booked for September and the appointments for October are not yet on the system you’ll have to phone up in a week or so!’ This is pretty much the same scenario as last time. Assuming I remember to phone up before October fills up That is already 8 weeks gone, 12 if I I have to wait till November.

The appointment wasn’t a complete waste of time, I explained that my ‘cure’ would be Tumescent liposuction and that it has a similar price point to gastric surgery without some of the lasting side effects.  He said that I made a good case and he would right a letter to the relevant surgeon, so while I am not holding my breath, we can only wait and see.

More information can be found via this you tube link , its american and they spell lipoedema, lipedema  but we are all talking about the same thing. Catherine Seo has done so much to  educate people about this condition. I think it is now available on Netflix.

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