Why don't doctors listen?

[Bemmyboy]

For most of my life I have been plagued with unexplained weight gain issues. The bulk of my weight increase very suddenly sixteen years ago the same time I was diagnosed with an enlarged prostrate. I went from thirteen stone to a whopping twenty two stone within six to twelve months, I was eating less and felt ill, I had yellowing around the eyes. I saw several doctors over the years all said the same,I need to lose weight! For many years I tried several diets. Throughout my life I have always eaten healthily and taken daily regular exercise incorporating walking, swimming, dancing and going to the gym. I found when I first became ill my hands and feet swelled. I could no longer wear my wedding ring and I had to wear one size up shoes that were wide fitting, I was living in jogging bottoms and hoodies as well as lounge pants in the evening.

A few years ago my mother was diagnosed as having chronic water retention weight problems. When I was a toddler she was always slim, when she reached about forty her weight ballooned suddenly by two thirds of her normal weight. I noticed most of her sisters having the same weight problems, their legs were very shiny leathery, they had what can be described as batwings hanging from inside the thighs hanging over the knees, also their feet were very swollen bursting out of their shoes as well as having a swollen abdomen. My mother and her siblings all had difficulty walking with the excess weight, using sticks and walking aids to get around. When I was young I thought like most others it must be fat and they need to eat less, how wrong I was.

Last year I received a letter from the dwp as I have been on long term incapacity benefit for many years, I need to know what is going on with my health as I can hardly walk etc. I asked my newish doctor if I can have a referral to a cardiac specialist as my legs were painfully swollen, I was also getting pains in my trunk. I was given a echo cardiogram and diagnosed as having venous insufficiency, I had to wear class 2 compression hosiery. I also had another appointment with a urologist for several ultroscans and a cystogram. From this I have been diagnosed as having chronic venous insufficiency and put on furosomide tablets. I have been taking these for two weeks now, I feel better and my family said I have lost some weight. I am fifty five in two weeks time it would be nice to wear some decent clothes but it is early days. My doctor is referring me to an endocrinologist at my request, why could they have not done this years ago? The sad thing is my I have two children, my daughter who has hydrocephalus and was married two weeks ago, she has weight problems and she is only twenty five. She is been going backwards and forwards to her doctors over her weight, will they listen! My son too is planning to see his doctor, luckily he has the same doctor as me so he might listen more. I have armed my daughter with as much info as possible as well as photos.

The thing I find most upsetting is not for me, yes I have probably been disfigured by this, it's my children I have suffered and seen this disfigurement in my own family and it saddens me. It took determination, stubbornness and a change of doctor for somebody to finally listen. It's still early days and I need to recover,If I can? No doubt there will be good days and bad, I will have to face each day as it comes. No doubt some of you understand where I am coming from acceptance is a hard pill to swallow.

Andy

[Bemmyboy]

Thanks bigleg for responding. For many years I had weight issues, I was brought up in the sixties on white bread, butter and some convenience foods. When I was sixteen I underwent a medical with British rail, my employer then and I had to lose weight to keep my employment as I was unfit. This brought about a change in me where I began eating a lot of fresh fruit and vegetables as well as wholefoods. I lost about three stone in weight in about a year, my weight fluctuated and I noticed that I put more on over the Christmas period for many years, not the normal four pounds but more a stone. The only thing I could put it down to was salt intake ie crisps and salty peanuts etc. I began to hate christmas because of the weight problem and eat fresh fruit every morning ie half a grapefruit and a small dish of all bran, converting to wholemeal bread and low fat spreads. I eat fresh fruit daily and never eat ready foods, because of the families weight issues I controlled my intake as well as maintaining a active life ( Dancing, swimming, tae kwan do and visiting the gym three times a week) until ill health and low mobility forced me otherwise. Over the last few years I have taken on a low GI diet (purchasing "Living the GI diet" - Rick Gallop), I eat houmous daily as well as my normal homebaked wholemeal bread and low fat olive oil spread. I have been taking furousemide for two weeks now, I have noticed I am losing weight and my current wardrobe is getting baggy, my diet remains the same. I grow my own vegetables as I have done for years. I do not live the convenience food lifestyle, I adopted " The good life" approach to living without the alcohol. I do believe I have compromised inherited vascular problems suffering also from ascites as well as possible inherited diabetes insipidus, my night time thirst and continual nocturnal urination would be a good indication of that. It is still early days and there are still roads to cross. I do have an allergy to plasters ( the old cloth type) there may be some intolerance's to certain foods, I don't know, I need to take one step at a time I do all I can to eliminate toxicity to most foods by not eating large amounts of processed foods and zero intake of take aways. I have found the Gi diet makes me feel good and there is no chance of me diversifying to another way of living without further investigation into my endocrine system. Thank you for replying.

[morganite]

your experience is very sad and I hope you getter better care from now on. I was a nurse for 30yrs, I developed lymphedema in both legs, Witin in my own profession I did not get any sympathy and my colleagues could not see how it affected my life, and drs had very little knowledge indeed mis diagnosing the condition until finally I was immobile and could hardly get around because my legs were so big and finally blistering and leaking, I was in compression bandages for 9 months and finally my career was gone, I got little help after 30yrs loyal service to the nhs. As for DWP your fortunate to have had benefits, with the new regulations I am considered not to be affected by this condition, they should have it!!!. it has had an anormous impact on our life, I lost my home and had to move, its also unfair but we plod on, I live in hope that the medical and nursing professions will wake up and realise the impact of these conditions and have better care for us all. I wish you well with dieting or eating healthy, I try but reduced mobility hasn't helped me but I don't give up. Good luck you deserve it.

[Butterfly-lady in reply to morganite]

I was deeply concerned to read both your experiences and others. I realise that your post was a year ago, I am new to this forum, but with regard to yourself and your benefits being stopped, have you sought advice and support from a Citizens Advice Bureau or an independent Welfare Rights Unit? I worked as a CAB trained Welfare Rights Adviser for twelve years before my Lymphoedema problems began and helped many people with a wide variety of disabilities to get the benefits they were entitled to. It is very important to have help with the claims. I too lost my home for due to unfair circumstances and so know some of what you have gone through. I do hope that things have improved since you wrote in.

[Bemmyboy]

I can really empathize with you on this, my mother and her family ballooned with this condition and it too was life changing for them. Being an ex nurse must have been quite traumatic for you, being on your feet all the time would have been quite painful, it's hard to imagine. I am virtually housebound because I have a fused vertabrae in my back causing me additional pain and immobility. I do not know if it is because of this condition or something else. still soldiering on, that's all we can do hoping there is someone who can listen that also understands, many thanks.

[shufflebum]

I was diagnosed in September 2011, affecting both legs. My GP at the time advised I had a leak in my Lymphatic system. I had previously had a blood clot in my right calf the year before which my GP had missed as I did not fit the 'profile'. Class 2 compression stockings currently control the Lymphoedema, I have mobility issues due to failed spinal surgery despite this being 'technically' a success. I feel for you and totally understand where you are coming from. I'm not forty yet and am determined this wont beat me. Currently trying to get my life back on track after 12 years with the NHS and looking to retrain in another direction. The body may not work, but my brain does! I'm a good listener, and would love to build up a network of people who can understand where I'm coming from too. Many thanks.

[gavinlwright]

Hi Andy. I am new to Lymphoedema and consider myself lucky to have it in both lower legs, stage 2 but mild and it is currently controlled by class 3 compression made to measure stockings.

I too have found it hard to get doctors to listen and can only say perserverence is the key. I went for many years with repeated boils and abcesses that have caused scarring in my armpits and groin, it was only after sufferring for inexcess of 20 years that i almost had to break down in front of the gp and insist a referreal to a specialist was made. On referral it was found i had hydrodenitis supporotiva and was prescribed roaccutane that finally something happened. I still get the odd infection but nothing like i used to.

When i started getting swelling in the legs it was put down to iga nephropathy a kidney condition, i did however have repeated skin infections on my shins including cellulitis, folliculitis and others. The infections and subsequent swelling etc have now left me with purple shins that i am told will never go away.

After 2 years of being pushed between dermatologists i have eventually been sent to a lymphoedema clinic and been treated for the lymphoedema.

I asked the dermatologist what had caused this in the first instance and he repleied "it is either your kidneys or heart", when i explained my kidneys were functioning normally as shown by a recent blood test he then said "in that case it is your heart but i am not bothered by that. Your GP can look into it if they want". After controlling my temper and not wanting to bounce him off several walls (as someone who has weight trained, played rugby and learnt various martial arts including judo, aikido and kendo i think i am capable). I immediately made an appointment with my GP who was quite angered by this and has reffered me to a heart specialist who i see in a few weeks.

Rest assurred it is not just you who feels this way and that by perseverence we can get results. I have always found it best to go with the supporting information you have for whatever condition you have, ask for a referral, if given no problems. If not then you have your armoury to hand and can give a reasoned response rather than going away thinking i wish i had asked/said that when you get home.

Good luck!

[LenaB52 in reply to gavinlwright]

Hi Gavin

Ive got lympoedema in both calves, and I have 'off the peg' class 3 hosiery following operations on them. Could you please tell me where you obtain your made to measure hosiery?

[gavinlwright]

Hi Lena I got mine from the lymph nurse through a referral. I did enquire how much to buy a pair and was told £136.00 . I believe you should be able to get your pharmacist to measure you but have not experienced this only being newly diagnosed to the condition. Your GPS should be able to help.

Sorry I can't offer any more help.