The most commonly searched term on my blog is "lipoedema". There is little understanding out there of the condition and frustrated ladies take to the internet to see what they can find out for themselves, because there are precious few in the medical arena who have any understanding of the condition.
So I thought I'd write a blog on how you can get help - what I've found out over the last couple years as to what works and what doesn't, keeping in mind of course that while one thing may work for you, it may not for someone else. I'm not going to go into what lipoedema is today as I've written a blog on that before, here's a Wikipedia explanation.
The first place I send people is to LASS (Lipoedema Australia Support Society). This is a group of fiercely strong women who are searching for answers and getting information out there in as many forms as possible. This year a number of them did the unthinkable - they bared their bodies for photos to make posters to put in doctor's surgeries (or anywhere else they felt it might raise awareness). You have to understand that most of these courageous women have covered up for their entire lives. They have a closed Facebook group that you can join and I'd strongly recommend this. The group has many files with information on diets, treatments that women have tried, surgeons, therapists, compression, financial support available through the government, and much more. They are organising their second Lipoedema conference for June 2016, to be held in Melbourne.
I've learned (from the LASS FB page) that a Lymphoedema and Lipoedema Community Seminar is being held on the Gold Coast on the 10th September at the Beenleigh Distillery/Tavern, 114 Distillery Road Yatala, late notice I know, but if anyone is in the area you should check it out.
On to concrete things I've learnt. Again and again I hear from various sources (including the patron of LASS and my lecturer, Prof Neil Piller) that water exercise is the BEST thing for lipoedema. That could be as little as floating around in the water if your knees or hips can't cope with too much more, walking in the water, swimming or doing water aerobics.
If you can't get into the water, then walking is always good. Or rebounding. Or whatever exercise you are used to doing, the main thing is to keep your body moving and active as much as you are able within the constraints of the condition.
Diet. Now here's the thing. There isn't any one diet that has been proven to help, but there are many diets that have been tried with some success. The RAD diet by Dr Karen Herbst seems to be very effective. Prof Piller recommends an anti-inflammatory diet. To me, they all seem to agree that eating a diet high in whole, unprocessed foods is going to be beneficial.
Treatment. The most frustrating thing of all is the lack of treatment (other than of course the lack of diagnosis or belief that the condition exists). Common sense tells us to keep up the exercise and watch the diet but what else has been proven to work? Nothing. But, most women do respond favourably to manual lymphatic drainage and compression (obviously if they can tolerate it). Dry body brushing also seems to help. There are deep breathing exercises that have been proven to stimulate the lymphatic system (thank you Prof Piller for his research). There has been discussion on vibration plates and Prof Piller has done some research and found that these can be beneficial if used on a very low setting for a short period of time. Care must be taken with other pathologies such as weak knees or hips.
The Rolls Royce of treatment is WAL (water assisted liposuction). The link is to a study published on PubMed. This is a specialised form of liposuction which minimises the damage to the lymphatic system, uses local anaesthetic rather than a putting you completely under and harvests fat rather than general tissue. There are a number of procedures over a few weeks and compression is worn afterwards to maximise the results. Post operative recovery is excellent. This treatment is not available in Australia yet but Germany is advanced and experienced in the procedure and the follow up recovery period. German clinics and hospitals are at the forefront of lymphatic research and treatment. The main form of liposuction used for lipoedema in Australia is called Tumescent Liposuction.
Where to from here? That's up to you. If you haven't been diagnosed yet, but suspect that you have lipoedema then I'd suggest finding a doctor, physiotherapist or massage therapist who can diagnose you. Easier said than done. There is a list of therapist and doctors on the LASS FB page that may be of assistance. In Australia you can get a care plan to see a physiotherapist for five sessions that Medicare will subsidise. Massage therapists are not covered by Medicare but most will be registered with private health funds which can offer rebates to help offset the costs.
I am more than happy to talk to anyone about options if you'd like to send me a message. This condition is something I am passionate about and education is vital, there is not enough information available and it can be very confusing and overwhelming trying to sift through what is out there.
2020 update - I have written an update to this blog, talking about the latest compression, exercise, pumps, treatment and self-care.