To not understand why I have to self fund this operation :(

[OhForFrigSake]

I had cancer 8 years ago and had lymph nodes removed to check it hadn't spread. Been in remission since but have developed lymphodema (a condition where my legs and feet swell). I try and manage the condition myself with compression garments (prescribed by NHS), antidepressants (for the psychological impact), exercise and weekly massage (self funded at £50 per week).

The impact this condition has had on my life is massive. I can't do many of the things I enjoy with my young children, like enjoy warm weather or holidays, wear nice shoes or anything where my legs are showing.

Psychologically it is very difficult to manage - last week I basically had to wear trainers to a family wedding and felt very embarrassed. Everyone was asking me about my footwear which meant I spent most of the day relieving the cancer treatment rather than enjoying the wedding. I didn't really want to go. It even affects my sex life as I just feel awful all the time and though it doesn't bother my lovely husband it is all I can think about. I have two pairs of shoes I can fit into and it will only ever get worse. I'm 34 and just not looking forward to getting older and worse as it's virtually guaranteed to. I honestly feel like my life is over.

In the long term it could cost the NHS thousands if I start to develop the infections that are common with this condition.

There is an operation that can be done to minimise and in some cases virtually 'cure' this condition but currently isn't offered on the NHS in England, privately it costs £16000. Trials in Wales have been fantastic and have been extended. There's no plans as far as I know to offer this under the NHS.

I just can't understand why patients undergoing a mastectomy for breast cancer are (rightly!) offered remedial plastic surgery as part of their treatment yet I've basically been given socks and told to get on with it even though it affects every aspect of my life.

Please be kind, this is a genuine AIBU - I don't understand! I'm not trying to be controversial, just trying to understand why this is happening (or not happening which might be more accurate).

becotide that made me so thankyou! My best mates are from Wales and we go with the kids quite a lot - love a bit of crabbing off Menai bridge - but not sure I could justify uprooting us all. Nice idea though!

It is rubbish. I suspect that for nhs treatment its years away from being proved reliable enough.

Is there any charitable institution that might help? Any benevolent fund linked to your or dhs work? Could you pay for a consultation so you can be sure that it would work/ help?

Long shot but your DH doesn't have any sort of private medical care package with his job does he?

I got BUPA with my job and was allowed to name DH on my policy. He had a successful private op using my insurance.

I have ME/CFS and chronic pain. I'm disabled and unable to work. The NHS has done sweet fa for me beyond prescribing some heavy duty pain killers. I saw a private doctor for my diagnosis because the NHS sent me for tons of texts, which all came back negative and I was simply too ill to continue the tests. When I went to see the Dr in charge of the ME programme, he told me I was obviously depressed because I felt slightly better on anti depressants. He brushed off my explanation that I only needed them to cope with my devastation at being too unwell to look after dd, let alone play with her. She was 3 at the time and was by then at nursery most days. The NHS physio wouldn't touch me and gave me exercises without explaining them to me properly first so I injured myself further. On average this disease takes 20 years off life expectancy but none of it is in public awareness like so many hidden illnesses. If I could have a cure for 16k, I'd take it in a heartbeat. I've spent more than double on my health, wellbeing and therapy. I hope you find the means to do so.

wheredoesallthetimego I can give it a go. I pay for the manual lymphatic drainage massage myself weekly as I was told there isn't funding for it but I did get my compression hosiery from the lymphodema service but haven't seen them for about 3 years. Beyond telling you to wear your socks they don't really do anything. It's a very stretched service by all accounts.

I can certainly put a good case forward for why I feel I need this surgery but I honestly don't know if I could convince anyone of why I was more worthy than anyone else. Lymphodema is a horrible, debilitating and progressive condition that seriously limits sufferers physically and psychologically - I'm sure anyone with my condition feels exactly the same as I do! I don't think I'm special - I think everyone that's eligible for surgery should get it (although I appreciate that's not how the world works).

No idea if this of any use but here's an NHS surgeon specializing in plastic surgery and lymphoedema...there may well be more and your GP should be able to refer you via the Cancer palliative service.. How long have you been looking?
www.meht.nhs.uk/services/our-consultants/plastic-surgery/mr-matthew-griffiths/

I'm so sorry you're having to go through this :(.

Yanbu. I see patients been offered treatments that (I believe) shouldn't be funded on the NHS then there's people like you, through no fault of your own not able to get the treatment you require. I won't go into this type of procedure I see regularly trough my work but it makes me cross you are suffering and these people are allowed what they receive.

I really hope they fund you or you find the money to fund it for yourself. Xx

mummyoflittledragon that sounds unbearably awful. I'm so sorry you find yourself in this situation. It's a shit state of affairs, particularly when it seems like you're viewed as a set of symptoms (depression etc) rather than a person. How are you now and is there any effective treatment for your condition?

I think one of the hardest things for me to deal with mentally is that fact that I know that without any effective treatment my condition will almost certainly just get worse and worse. I don't know how to fight that knowledge mentally.

Thanks for everyone asking about medical insurance. Sadly neither DH or I have any kind of medical insurance.

Thank you twist I've been looking for about a year as my condition has worsened. My GP is very good and referred me 2 years ago to The Royal Marsden where I saw Prof. Mortimer but my condition wasn't as bad then and he felt at the time that I should just keep up with bandaging/ compression. The main source of the problem is around my foot and ankle (hence the footwear problems) which is a bugger to wrap and compress.

That sounds very hard for you OP. Have you been told about intermittent pneumatic compression therapy at all? That might be more effective than manual therapy and compression stockings. Example product here: Flowtron Hydroven 3.

Oh thanks. I wasn't looking for a reply. Been a shit 2017 as it happens health wise. I spent the whole of last weekend in bed with no energy and I'm often in bed (right now). Good job I'm an optimist. . The NHS doesn't offer anything meaningful, I'm afraid. I'm having body work twice a week, therapy and I also take some alternative remedies (which have helped the most) along with some eye wateringly expensive medication from a private doctor. Ironically I think my bad patch is because my body is starting to heal but it's long haul stuff.

It doesn't do you good to think like that about getting worse, you know. If you really can't, then perhaps you can get some talking therapy. You've had some great advice of what to do from a specialist. As you have your health, you can go and get the help. I'm sure it's shit you had to wear trainers. But at least you get to go to the wedding and play with your kids on the beach. You had the cancer treatment and are still relatively fit and well. So for your own wellbeing, do try look at what you have, not what you don't.

@OhForFrigSake - I'm so sorry to hear you had Cancer and I hope you are on your way to recovery.

I have Primary Lymphedema which developed in both legs at 13 years old. I am now 30. I understand how you feel. I used to cry, take time off work and school because I was so angry and frustrated with my legs. I couldn't wear skirts, dresses or heels. I hated going away anywhere too hot and I hated the stares I got when I wore sandals.

I have spoken to a consultant about the operation to "cure" and or minimize my condition but unfortunately this is only for patients with Secondary Lymphedema (like yourself). It would not work with Primary. Also - the surgery is not 100% guaranteed!

I've now learnt to live with my condition - knowing that its very unlikely (in my life time anyway) to find a cure. I know how to manage the swelling. Your weight is extremely important - If you are overweight then loosing weight will drastically reduce the swelling. I drink tones of water and obviously try and wear my stockings everyday. Its a part of my life now and it no longer causes me emotional or physical distress. I can now wear dresses and nice shoe boots and even sandals and "look normal" because of weight loss, massage and management. At my last visit to my Lymphedema nurse she was shocked at how "normal" my legs looked.

Your life isn't over! Have you tried looking at private health care insurance with your work? From what I remember AXA would cover this surgery. I completely agree that the NHS should fund this type of surgery due to our circumstances. Especially due to the pain and distress that it causes. I understand they removed nodes to check the Cancer had not spread. I don’t think anyone would understand unless they go through it. I was always told that if it isn't life threating I should stop moaning!

If the surgery was possible for me I would have definitely depleted my saving and gone for it. Are you able to take a bank loan to cover?

I'm now expecting my first child – I know my legs will get worse but after years of having this condition – Its not something I stress over anymore.

Good Luck xx

This is why I am not religious. Because if there was a god he would know that if I won the lottery I wouldn't spend it on flash cars but I'd trawl the net, newspapers and GoFundMe's for cases like this and for people who have kids who have been told to fly to America for essential cancer treatment and donate so I could die knowing there were dozens of people's lives changed for the better.

Instead murderers win it. Proof there is no god see?

Lighthearted post but true. In all seriousness I can't see anyone sane saying YABU. It would save the NHS money in the future and give you your quality of life back. When I read about NHS trust bosses on 6 figure salaries and I read posts like this I feel sad and outraged in equal measure.

Maybe contact Prof Mortimer secretary to ask about it? Or ask GP to write to him to consider putting in an indiviual funding request? He would need to see you of course.
Or find out who is running the study in Wales. Write to them for more info? How is it going? Is it likely to be extended? If so can the contact you? Say you are willing to travel for surgery if the accept suitable patients out of area?
Look at funding surgery abroad??

Yanbu. How utterly shit for you OP. I hate how things are available under the NHS in one area, but not in another. It's so bloody unfair! Let's hope, in your case, that the great outcomes in Wales translate to this operation being offered nationwide so sufferers like you can benefit - and that you won't have to wait too long.

I wish I could offer a solution OP. All I can do is say how sorry I am that you and so many people - including those on this thread, are having to suffer this way

I agree with the suggestion that you should be exploring and individual funding request; I would think that you are pretty young to have leg lymphoedema and that as well as any assessment of severity might be enough to swing your case as "exceptional".

And if you are getting worse despite your best efforts at looking after it, and haven't been seen by specialists for 2 or 3 years, their reassessment is perhaps a good idea anyway.

Assuming you get a new referral from your GP, I hope that you don't have to wait too long for a review.