Lipoedema UK
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Feeling sad

After countless, wasted trips to my GP about my easily bruised and swelling legs I eventually read an article on Facebook about lipedema to which I matched every symptom! I travelled down to London and paid to see a German specialist last Saturday who diagnosed me with mild stage! She has recommended that I have water assisted lipo over in Germany and I am in talks with a surgeon over there about this, but as I have it in my arms and full leg it was cost on the region of £11k! I will happily save for this if it's going to improve the condition! Has anyone else had this procedure done? What were results like? Also I'm going to go and and see my gp to inform her I've found my own diagnosis.. And ask if there is any funding for this on the nhs... Even if it's just the compression garments! The condition is really gettin me down and I'm sick of having achey legs all the time!! Sorry to moan, but no one else understands :-(

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Yes I've had the lipo, will have the third (and final) procedure in March. You can get it done in this country - mr Karri in Yorkshire does it, or Anne Dancey also does a lot of work with lipoedema patients though I'm not sure if she uses the water-assisted machine (mr Karri does). It's made a huge difference - I was stage 2 going on 3, sounds like you may not need so many procedures if you have stage 1. Costs £4000 per op. You are extremely unlikely to get NHS funding for lipo, but a lot of people manage to get compression garments. You can also try manual lymph drainage massage but again would most likely have to pay yourself - depends where you are in the country, some GPs can refer you to a lymphoedema clinic. Your GP can find out more from an online course the RCGP has put together - counts towards their CPD, and they can find it on the RCGP website. Check out the online support communities, I think the links are on the NHS Choices page. Good luck!

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Mr Karri's op under GA are now £5,900 - I am booked for January 1st one

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Goodluck. I am going to make an appointment to see him with in this week ..

are you going yo have more than one area ? i thoughy he prefers local anestesia for liposuction of the lipidema ..

good luck

lal

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So how did the op go?? I've just realised I have this too. My Karri seems good. Hope it went well.

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Hello, yes the op went well thanks - he changed his mind about what he was going to do on the day of the op and made a decision to to the whole fronts of my legs. I have to say the difference visually isn't startling but removing the pads under my knees has made an enormous difference - the pain has virtually gone and my knees feel comfortable. I have lost my ankle cuff too. The first week is hard as the bruising is horrendous and sleeping really difficult. Getting used to compression was also hard - getting it on and off with all that bruising was painful - my lovely husband helped me with this. I am nearly seven weeks post op now, I am left with a tenderness and some pins and needles, my legs are also itchy but all in all, worth it! I would recommend Mr Karri - I think he is a good surgeon. I do think though that he could have removed a bit more than he did. Due to being conservative, more ops may be needed - I guess though good to err on the safe side. His costs have risen quite a bit now and surgery is now I think £6,700. I am going ahead with more surgery in April but am using a difference surgeon - off to Germany for the next round!

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Dear Laura, I am sorry to hear that you are suffering right now. Congratulations on sorting yourself out and getting a proper diagnosis; this is not easy as the disease is too little-known and goes often undiagnosed.

The good news is that people have very good results with water assisted liposuction, a surgery that preserves the lymphatics. Much much less pain, better mobility, and better aspect. I reckon that the price and results are about equal whether in Germany or in the UK (if your prefer not to travel abroad) but other women may have different opinions and experiences. The quote you have seems correct to me compared to other people I know who had similar round of surgeries.

The charity Talk Lipoedema has a private Facebook group about lipoedema and liposuction and you can join if you want to discuss with women who have had the surgery or are in the process of getting it. It is also very helpful I think to speak to women with the same condition who understand what you are going through.

Here is the link: facebook.com/groups/TalkLip...

Re NHS: it is relatively easy to get compression on the NHS (I think people usually get 2 pairs every 6 months but it depends on where you are based). For lipoedema, you should get made to measure flat-knit (rather than round-knit). These help with the pain and maintain lymphatics circulation. Some also get MLD on the NHS, but that seems to be a bit random. Surgery on the NHS seems close to impossible to get, as it is considered "cosmetic" (when what patient want is a diminution of pain and an increased or preserved mobility…).

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I can totally relate to how you feel. I have had a similar experience. It's very frustrating and soul destroying! I was diagnosed last year by Prof. Mortimer at St. Georges Hospital in London. I suggest you join Lipoedema uk . Google them and you will find all the information you require. Last year I attended their annual conference in Reading and I was so relieved to see people just like myself and made some lovely friends, not to mention found out so much information. You are not alone and there are many of us about. (11% of the population). There are also some facebook groups who are most supportive and have fact sheets you can look at. I really suggest you joining "Lipoedema Ladies" and "Talk Lipoedema" who are all wonderful like minded ladies. They have a chat group too that you can join and are really kind and helpful with anything you want to ask them about the condition. Who did you see in London for your diagnosis? I have seen a few doctors in the UK about having the Liposuction and have decided to go with a plastic surgeon in Birmingham called Anne Dancey. She has operated on many Lipoedema patients recently with great success. I'm in fact booked in with her to have my first operation on my legs next week. I'm excited but feeling stressed about the op now! Don't rush into surgery and make sure you see a few of the doctors and choose the right one for yourself. There are a few coming to talk at the conference if you can get there. I will definitely be going to it.

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Hi phillyelk, can you tell us how your operation went, are you happy with the results and how long was the recovery etc.? Im am booked in in August for my lower legs but I have to admit I am scared! I would really appreciate hearing about your experience with Anne Dancey. Thankyou.

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Hello, can you please tell me about your surgery with Dr Anne, how was it? I booked for my 1st surgery next year, I’m really worried, please tell me what did you endup with

Thank you

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Hello

I’m suffering from Lipodema stage 3, booked with Dr Anne next year March 2018, how was your operation went ? Any complications after the surgery?

Thank you

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I've now had four Operations with Anne Dancey. Three on legs and one on arms. I haven't had any skin removal. I had a complication after first op with compression being too tight and causing blisters. Things since have been gone well and recovery easier with each surgery. I'm pleased with outcome. Best of luck. X

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I had surgery with Anne 2 years ago and have been left with really lumpy and bumpy legs. I wish I had never gone through with it. I have since had surgery on my arms with a different surgeon and the results were amazing.

Two doctors told me the poor result on my legs were because too much fat had been taken out of some areas and not enough out of others.

The poor result has left me even more self conscious.

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Thankyou everyone for the replies! It's reassuring to speak to people who understand! I will definitely be going to go to see about getting the compression tights and I'm going to start getting weekly mld, although not sure just how much this helps..! But il try anything and everything! Thanks for the UK surgeon recommendations il defo be looking into those! And the lady I saw was called Birgit at the lymphoedmea clinic in Waterloo, London! She was fab and told me loads of helpful stuff! Also anyone who receives regular mld, how much roughly is charged per hourly session? X X

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I think it is about 35£ a session. Some feel a difference straight away but I needed a few sessions to see the difference. If you can afford weekly sessions for a little while, I think it is worth trying.

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Hello Laura,

There are 2 or 3 excellent surgeons in Germany but i don't know of the lady you met at Waterloo. I would highly recommend that you attend the Lipoedema UK Conference in Reading at the end of June. They have surgeons from Germany who will be discussing surgery and expected outcomes. I certainly recommend that you speak to more than one surgeon and also there are a couple of excellent ones in the UK.

May i ask where you saw the advert for the person in London?

I have had 2 lots of surgery now and the results are excellent.

NNE

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Hello Naomi, I am currently looking into Surgeons in Germany. You mentioned 2 or 3 excellent ones - would you mind sharing the names of those Drs please? Thanks

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My doctor tells me that a surgeon will not even look at my legs

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Hello 

Very interested in hearing how the operation went for you. Am desperate! Was seen at St Georges in November, diagnosis of lipolymhoedema. Does the surgery work on patients like me too?

Thanks in advance. 

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Hi, Yes, surgery will help reduce limb volume on patients like us with Lipolymphoedema.

I have been turned down 5 times from my CCG for the procedure on my arm which is HUGE from secondary Lymphoedema.

Ms Milroy , the surgeon who works with the St George's team is certain of a good outcome but without funding I need to pay approx £12, 000.

Some CCG's will fund the surgery for Lymphoedema but mostly won't for Lipoedema.

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I have actually just had surgery with Miss Anne Dancey on both legs - I'm only ten days post op but feeling positive!

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How are you getting on and do you mind me asking how many surgeries you had and how much it cost. I had been looking to go to Germany and have only just come across Anne on Talk Lipodema. Many thanks

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Hello

I'm considering surgery with Miss Dancey and would love to know how it's worked out for you?

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I would need bothe legs, would you mind me asking if she has something like a finance programme or how much it costs without it please? Thank you

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Not sure how far you are on your journey but hope this helps. I have Lipoedema and recently emailed photos of my legs to Anne Dancey. She gave me a diagnosis and a quote of the operations that I would need. The diagnosis didn’t cost a penny. 3 ops totalling £31000. There is also a Dr a Wolf based in London and Birmingham who does not charge Lipoedema patients for a consultation. I am going to London on Wednesday to see what he thinks. His website is drwolf.com. I just filled in the contact sheet online and they were quick to get back to me. Best of luck.

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Thank you so much for the information. I am gonna check him cause I am based in London. I had very bad swelling and pain the last three days. Do you notice that it becomes worse while on an airplane and depending on your diet? Thanks again!

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I have recently been on a coach and ferry trip and by the time I got home my feet and one leg were really swollen and painful. Took two days to get back to normal. Don’t usually have pain only at top of thighs whilst trying to sleep.

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Oh I am sorry to hear that. I understand, and the truth is that compression tights don’t provide much relief. I don’t know if you used them while travelling. I am gonna see dr wolf too and see what he suggests. I’ll write here too hoping that it might help others.

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Would you mind me asking please how was your experience with Dr Wolf? I am going there tomorrow and I am a bit nervous. Thank you

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By now you will have met up with Dr Wolf. I hope your consultation went well. I was impressed by him and am having liposuction at the beginning of October. Have you decided on any treatment yet? X

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Laura I know how you feel, the first time I went to see my GP I was told I had lipodeama ( he thought). the second time I was told ( I don’t really know ) that was about October last year. I was upset and depressed I didn’t know what to do. I wish there was somewhere nearby where people could visit to talk about things. Leshia 11

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Are you onFacebook Laura? Is so, look at My Journey and Global Lipoedema/Surgeries/Doctors. Ask to join and there you will get a wealth of information in relation to doctors, procedures, costs before and after photos. It is a wonderful group.

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