Lipidema Diagnosis obtained and still feeling... - Lipoedema UK

Lipoedema UK

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Lipidema Diagnosis obtained and still feeling bleurgh.

MK1951
MK1951

Hi. I last posted a month ago when I was waiting for a consultant appointment. Well, I have seen the consultant this morning, and I'm not sure how I feel now. He confirmed that I do have lipidema, but no real problem with lymphoedema. He said there is no treatment other than liposuction and that wasn't conclusively proven, that lipidema is progressive and it is important to prevent lymphoedema as far as possible. To this end he would write to my doctor recommending Class II compression hose - probably tights. I do not need any further appointments, as my GP will take over now.

It's a good job I can no longer eat chocolate, or I would be at home now with several empty packets scattered around me! (I have to admit there is an empty packet of Posh Popcorn - Pro-point value 3!) I don't know what I was expecting, and I would normally be glad to be out of the hospital fifteen minutes after I had parked. I saw the Vascular consultant in person, so I'm sure he knows what he's at, but I feel short-changed somehow. I wasn't looking forward to today, and I suppose it has been a bit of an anti-climax, and then I feel ungrateful for feeling like that. I already know that there is no miracle cure, and that no matter how I diet my legs will still be elephantine, but I don't feel 'looked-after' somehow.

My lovely husband has said that if I would feel better about myself I could have liposuction on just my 'saddlebags' at his expense, but I can't face the procedure, and would resent the money spent on it as well. I could have a holiday with that. Just not a beach one. Obviously.

Sound familiar to anyone? If so, what did you do about it? What else can I do?

I'm sorry to whinge. I'm sure I'll feel better soon!

33 Replies
oldestnewest

Hi, I am sorry to hear that you are feeling so low after your diagnosis. There is a huge support network out there for lipoedema:

lipoedema.co.uk

talklipoedema.com

lipoedemaladies.com

All of these websites give lots of information and guidance.

You have had the correct information in regard to management with compression hosiery (make sure you get the full tights - or, if no swelling in the feet, leggings). I would disagree with your consultant with his comment about liposuction - again you will find lots of information on the websites about surgery and recommendations. I personally have been treated at the Hanse Klinik in Lubeck, Germany and can only say massively positive things about them (I have lympha/lipo).

Right now I am sure you feel as though you are in a very lonely place; but you are not alone (more than 11% of women in the UK suffer from this condition).

Take care with your diet (as alkaline as possible); particularly avoid alcohol and pre-packaged foods and especially those provided by the likes of weight watchers/slimming world etc.; as maintaining a healthy weight is crucial. If exercising is your thing then i recommend that you always wear compression when exercising too.

NNE

Hi MK1951 and thanks for sharing your experience – please do not feel guilty for how feeling let down after a diagnosis! When I got my diagnostic 1 year ago, I also felt quite down, especially as there seemed to be little hope regarding treatment and getting better… I was just told to avoid putting on weight and to keep on wearing compression for the rest of my life. I had mixed feeling about the diagnostic, good to finally have an answer, but bad to have this one. However, I feel a lot better know! Here are few things that I can share in the hope that they will make you feel better too.

Compression: not a sexy perspective it seems but in my case, there are really helping with the pain and are not uncomfortable at all (mine are class II too, and I barely feel them). Just check that they actually take your measurements and if necessary insist on trying others until you have some that fit really perfectly. Also, pick the colour if you can: I really feel better wearing black or navy ones rather than beige ones (but that's maybe just me).

Regarding surgery: I am in the process of getting it and the hospital that treats me has had success with the procedure for 15 years (it's a public hospital, reconstructive surgery department, so they are not after my money). However, it will not be immediately liposuction but first micro-surgery to re-rout some lymph vessels to a vein to get better drainage. This suprised me, as I barely have any lymphoedema symptoms but my surgeon explained to me that there was indeed a probable lymph drainage issue here (which will be determined with lymphography, scheduled for tomorrow!). After this first surgery, we will process with the liposuction (the special procedure for lipoedema, not the "normal fat" one if I can say so). Then even something for my skin if necessary.

So I think that it is worth making an appointment or two to check whether surgery ("only" liposuction or micro-surgery + liposuction) might be an option for you as well. You need to find someone experienced with the disease, there are unfortunately too few specialists and I felt that they were the only ones with accurate information and advice. My lymphatic issues were completely overlooked by everyone until I met this surgeon who had already encountered and treated similar cases. Not just any angiologist or vascular surgeon will do.

Here is also a few useful reads regarding surgery:

diseasetheycallfat.tv/wp-co...

Surgery is in the official Dutsch guidelines for lipoedema: so maybe not so unproven, right?

Furthermore:

lipoedema-simplified.org/do...

I really think that the diagnosis is only the first step but not the last of it. It took me one year of rather lonely research and pointless medical appointment with clueless professionals before getting proper care but I am now in good way to getting actually better - not just "managing" the condition – and even if I cannot get surgery in the end, at least I will have tried everything within my reach. If that is of any use, I would gladly share how it goes for me.

Also, I found this great group on Facebook through another post (much more active that this community): facebook.com/groups/talklip...

All best wishes for you! Happy to know that you have a lovely and supporting husband too, that is great!

you are lucky to be getting super micro surgery on the NHS as i don't believe it is readily available to the majority of people.

I actually live in Switzerland and the hospital staff needed several weeks just to figure a way to get my lymphography reimbursed by my healthcare insurance, so I do not know exactly how and if everything will be reimbursed. But I am very very lucky to have a competent team where I live and to have access to these cares. I know they are not easily available to everyone… Before finding this hospital, I was also contacting hospitals in Germany and looking for ones in The Netherlands (on my own bucks).

MK1951
MK1951 in reply to aepyornis

Hi aepyornis

Thank you so much for your reply. I hope your lymphography went well, and is helpful in indicating what further treatment will be useful and should be made available to you. You sound as if you've been very determined in sorting yourself out, and have inspired me to do a bit of the same for myself. Unfortunately, my GP is away at the moment, and the practice prefers that you see your own doctor for anything other than 'here-and-now' stuff, but at least it will give me time to sit at the computer. I am 64 now, not suffering the amount of pain that people speak of (although I have a horrible feeling that the NHS knees are protesting a bit) and I'm not sure if surgery, even if indicated, would be the best option for me. I think I need to discuss that with somebody who knows a bit.

Many thanks for the various references. Although I have found quite a few groups, none of them seem to be overcrowded. Lipoedemaladies looks okay, and I'm wondering whether to go to the "Big Meet' next year.

Again, thank you so much for your detailed and thoughtful reply, and I wish you the best of luck in getting yourself looked after.

Kind regards.

aepyornis
aepyornis in reply to MK1951

Yes, keep looking for the right interlocutor, who will help you figure out the best option, it really changed everything for me. Good luck!

Sbluebam
Sbluebam in reply to aepyornis

Hi

Can you tell me how you are doing with your lipodema ?

I noticed you were getting surgery was that on the NHS and if so what surgeon

If abroad do you have the name please ?

I have tried for 35 yrs to get help since I was 14 yrs no one wants to help

My doctor said no one in Africa has it ... how rude

Please answer

Barb

aepyornis
aepyornis in reply to Sbluebam

Hi there!

I am doing well :). I had my surgery 15 months ago and it has massively improved the situation. Pain is 90% gone, mobility is practically normal. Silhouette has better proportions too. I keep on with the conservative therapy to preserve my results and also because I can see that my legs are better with them too.

If you are looking for a surgeon, I suggest this group on Facebook: facebook.com/groups/mylipoe...

There are many surgeons discussed there in many different countries and there are also other people based in different countries in Africa. Sadly people there also suffer from lipoedema, and sorry you have to deal with an rude and ignorant doctor… This group is very active and any question gets answered, and I have founds lots of support and information there.

Big hugs and much love.

Sbluebam
Sbluebam in reply to aepyornis

Hi ,

Thank you so much for your reply .

Can I ask do you feel after your surgery that your legs look normal now ?

How much surgery does people normally need and what’s the interval between each session ?

Really think lipodema / Lymphodema has to be one of the worse diseases for a woman .

I don’t have Facebook so any website with surgeons would be appreciated .

Thank you so much

Luv

Barb

aepyornis
aepyornis in reply to Sbluebam

Hi,

My legs looks fairly normal now. They are not 100% symmetrical but you really have to look closely and compare to see the difference. They are overall quite smoother but of course, compared to a 20 yo with perfect legs, not as smooth and perfect. But I did not get any additional stretch marks and my skin retracted well.

Some surgeons will removed as much fat as they can and sometimes go up to 10 liters in one surgery. Others will remove as little as possible to spare the lymphatics and limit the risk of saggy skin and remove just what is necessary to relief the pain, improve mobility and reshape the limbs. So it really depends on the patient and the surgeon's approach. Some patients undergo just one surgery as I did, and others have more than 4 but it seems to me a lot of the patients have 2 to 3 (arms included, which I did not need).

You can find a lot of surgeons listed here: lipedemaproject.org/lipedem...

You are most welcome :)

Luv

Sbluebam
Sbluebam in reply to aepyornis

Thank you so much

I hope I can get surgery in the future .

I find it disgusting that the NHS offer no support for surgery

It’s an awful thing for a woman to have and I would not wish it on my worse enemy

Take good care of yourself

Luv

Barb

Liposuction is a proven treatment but it needs to be water jet assisted tumescent liposuction to be most effective - regular tumescent lipo is OK but not the best. Sadly the NHS very rarely funds it. I've had my first session and it has made a huge difference to my mobility as the masses around my knees were targeted first. Try Lipoedema ladies on Facebook etc. For lots of info and support. Many people find manual lymph drainage massage helps with pain and swelling - there's a register of qualified practitioners. Dr Karen Herbst is an expert in the US, have a look at her website and details of the RAD diet. And keep lobbying the NHS! It's ridiculous that they refuse to fund the only proven treatment and allow the disease to progress to a point where we may need hip and knee replacements, become unable to work etc., which would cost so much more. Good luck!

aepyornis
aepyornis in reply to Averil

Thanks for sharing and for the precision regarding the exact surgery. Good to know that it worked for you and made a real difference, this is very encouraging!

And yes, this is so ridiculous that get these relatively inexpensive and effective treatments are not funded, costing so much more in the long run… And letting people in pain.

Giwise
Giwise in reply to Averil

Hi Averil...where did you get your tumescent Lipo done?....as you said it is very difficult to get funding in the UK so would be interested in your response as I am considering going to Germany, Lubeck to the Hanse Klinik.

Averil
Averil in reply to Giwise

Mr Karri in hull but I paid for it - it was WAL, done under local anaesthetic. there are other surgeons available who use standard tumescent lipo. If you want to go to Germany, there's Dr Stutz and dr Rapprich

Alana01
Alana01 in reply to Averil

Hi there I am Alana I have severe lipedema tried bandage treatments, but on every occasion my legs have rebounded at the moment I am waiting to see if I can get funding for liposuction been turned down once, can you tell me how much you paid when you went privately please thanks

Hi Giwise, am also going to Hanse Klinik in Germany, will have three lipos in seven body regions. Will do it with Dr Frau Yvonne Framach, had a 1.5hours discussion with her, honestly am impressed with her explanations and professionalism. Can't wait until 29 January for the first one. It is also much cheaper than the UK.

Hi Mk..., really interested to hear you have been to the Hanse Klinik and had good appointment. Will be very interested to learn about your journey and especially your first treatment in January. I really have to pluck up the courage to go...I am very nervous as I am really Stage 3 and have also lymphoedema which is a further complication and don't want to be disappointed if it doesn't work....but....anything has to be better than maintaining the status quo and not getting treatment.

So really good luck and look forward to your next post. Happy Christmas and looking forward to a healthy new year in 2016.

Hi mkokkinouboege, As it's now the beginning of February I expect you are now recovering from your first session at the Hanse Klinik which was scheduled for 29th January. Just hoping that all went well and when you are up to it, would like to hear about how it went.

Many thanks Giwise.

I had all my three rounds with Yvonne, she transformed my life, have a look in my lipoedema journey, all treatments are documented in photos, videos. send me a message via Facebook, to get you in. Maria Kokkinou Boege. Yvonne is the Goddess of TAL Liposuction worldwide!!!!

Livs
Livs in reply to mkokkinouboege

Hi mkokkinouboege. I am considering surgery at Hanse Klinik as well. Do you mind sharing your experience with me? :) I would love to hear from someone who has already been through it.

mkokkinouboege
mkokkinouboege in reply to Livs

Send me a message in Facebook Maria Kokkinou Boege to add you to my Lipoedema Journey x

Hi, I just wanted to say that I am so glad to read what you all say here and that I am not alone. I was diagnosed by a specialist doctor in Greece where I am originally from because my GP would ignore the pain and discomfort here. I have been using the compression tights which I find uncomfortable. I have been reading about the water assisted liposuction and I would gladly do it if I hear more from people that already had it. In addition, since I live here in the U.K. I would rather have it done here. I saw that recently more places mention that they do it but I don't know who to trust especially considering that I might need funding. Please feel free to write any suggestions. Thank you

Hi MK ,

I have been reading your story and I truly hope your surgery went well and you are rid of this demon

I have been trying to get help for 35 yrs for this since I was 14 yrs old

I hate it

It’s been a burden all my life

Can you help with any info or good advise please ?

Many Thanks

Barb

sbluebam@aol.com

Thank you all so much for your replies. I have been told I should ask for a second opinion, so will look into that. Looking at other ladies' histories, I think I'm very lucky really. I don't suffer a great deal of pain, which is a blessing, and hopefully support hose will keep that at bay as well as lymphoedema, ulcers and cellulitis. My thoughts are with all those ladies who are really incapacitated through this condition. I will do further research (it's not easy is it!?) because I need to feel I've done everything I can. Even if I get the same answers, and still have the right raving hump about it, at least I will feel as if I've been a bit pro-active. Many many thanks to you, and good luck with getting the best care available to you.

I do hope you will consider joining Lipoedema UK as we represent patients and are working hard to provide accurate information and advice. Everyone with lipoedema is very different, but it does help to get together with other people who have it too and understand your thoughts, feelings and concerns. This year our conference will be in June in Reading UK, and feature the different options of liposuction available with some of the world's leading experts presenting. Details will be available to our members soon and on our website in the new year.

MK1951
MK1951 in reply to lipoedema3

Thank you for your reply. I have indeed joined Lipodema UK. I must admit it put it off for a little while, ever hopeful that perhaps I really did just have fat legs and dieting would do the trick. Sadly, it was just foolish optimism! The literature I received was really helpful, and I have passed some on to my daughter and my granddaughter. Neither shows sign of this condition, but I want them to be more aware than I was. I look forward to receiving details of the conference. Kind regards.

So pleased your a member and that our literature has been informative. and useful to share with your daughter and granddaughter, if you can come to our conference in June,, I'm sure you'll go away really well informed on more options and self help techniques. Members are always welcome to bring members of their family along.

Hi I empathise with your predicament truly. In the respect that your husband is in a financial position to pay for the only treatment available, I feel you are doing him and yourself a disservice. Should the treatment have been available on the NHS, as I believe it should, would you have accepted the treatment. I am more than sure that everyone that suffers from Lipoedema feels short changed due to the lack of treatment on offer to them on the NHS. The condition robs people of a quality of life. When you suffer your husband will be affected by the knock on effect. I suggest you accept your husbands offer to alleviate you of this horrible condition, then you both will have a brighter future together. Good luck in the future.

MK1951
MK1951 in reply to Raven345

Thank you so much for your reply. It sounded comforting and well-thought out and is much appreciated. I would also have thought twice about 'free' surgery, because I have had so much surgery over the years (and suspect another couple of bouts ahead) for different things that I can't face 'volunteering' for any more. Were I in terrible pain, or my mobility affected, I'm sure I would feel differently. I hope you are okay, and getting what you need (so far as any of us are able!) and wish you good luck.

Raven345
Raven345 in reply to MK1951

Hi I apologise should you have gotten the impression that I meant anything untoward, on my referring to getting the NHS offering the treatment required. My thought behind what I said was should the treatment be recognised, and taken more seriously by the NHS, then the sufferer's wouldn't be put in a position of taking the responsibility of sourcing treatment on their own behalf. Like you I have had many health problems to deal with and still do. 5 operation's have been done on my brain, due to twisted vessels, Mernier's diagnosed two years ago now Lipoedma. Not a lot of fun. What I was trying to relay to yourself , was should anyone be in a position to alleviate the symptoms of Lipoedama, or any other illness, then why not, it's the quality of life in my opinion that counts for themselves along with partners, family. I truly meant no offence, life is hard enough. Good luck for the future.

MK1951
MK1951 in reply to Raven345

Bless you! You didn't sound at all critical of my view, and certainly didn't give any offence. Your point was well made and thoughtful, and that's always welcome. You do sound as if you've been through the mill, and I wish you every bit of luck in getting through it all. I am totally in agreement that more needs to be done in getting Lipoedema recognised and treated, but with the NHS in the state we're told it's in, I hold out very little hope for any immediate change, so I guess it's just a case of plugging away at it. I think it's ludicrous that, with so many women affected, it's left to each individual to research everything from diagnosis to treatment. My own battle at the moment is persuading the nurse at my doctor's practice that compression tights are, in fact, available on the NHS.

I hate this condition. I am firmly of the opinion that I would be a different person if I hadn't been made to feel ashamed of my body. Many many times I have put off going to the doctor's because I have felt that my 'weight problem' has influenced the way I am treated. That attitude is bad enough from the general public, but really isn't good enough from the medical profession. However, my quality of life is helped enormously by my family's support, not leastways because my husband is very scarred from an accident, so knows how I feel.

Again, good luck with everything. I'll keep an eye open for any post you make, and shall be interested to see how you are.

Kind regards.

If you have the opportunity to get liposuction, why not get it on your legs. If they were less of a problem you would most likely to be more able to excersive and loose the saddlebags. A holiday is a pleasant distraction for a short period only. Good luck regardless of your choice.

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