I have stage four or five Lipoedema and have suffered since I was a teenager, I was told I had congenital lymphodema which is apparently a genetic disorder. Countless efforts to lose weight over the years, I have tried every diet ever invented but to no avail. I have recently had to stop work as the sitting for ten hour days was killing me, I could hardly walk out of the building. I am so tired of going to doctors who have no idea of what it's like to carry these tree trunks around daily being in constant pain, I just want this all to be over can't take much more. Just moved from Worcestershire to Hampshire to be closer to my children who have encouraged me to be closer as they can see how I am struggling. Now I have to start all over again with new doctors who no nothing about Lipoedema, they keep telling me I have lymphodema.... I give up.
Written by
Glynis1311
To view profiles and participate in discussions please or .
Oh dear I am sorry to hear about your troubles. Dealing with health professionals that have little knowledge of the condition is really tiring I agree. I hope you are lucky and hopefully get a knowledgeable GP or one willing to listen. Some charities (Lipoedema UK and Talk Lipoedema) have leaflets for GPs that can help. Can you also be referred to a lymph clinic and get compression and hopefully even MLD?
Dont give up. I only recently discovered Lipodema and have now been told that is what is wrong with my legs. I have compression tights that I have to wear....exercises to do and massage too....then I will be able to get liposuction for it. I havent been diagnosed for very long but I know how you feel about the doctor thing. I am 46 in a weeks time and was born with JHMS/EDS and trying to get a doctor to understand my pain and stuff is a total nightmare as the illness isnt highly recognised. Best thing to do is gather info from the internet and print it off.....give it to your doctor and ask for a referral to the local Lymphodema clinic. They will then deal with your Lipodema. They are very different illnesses but not much is taught to the doctors about them.
I haven't heard of such a positive response as towards any doctors making referrals to any Local Lymphodema Clinics. Well done you. As far as I know these clinics are overrun with cancer patients who need the treatment for their lymph nodes. That's a very positive outcome for you. Best of Luck.
I maybe should have mentioned that Im in Scotland. We dont have as many specialists up here in any area of illnesses but it looks like our clinics arent over run with patients. Getting info can be harder and finding a doctor who is even familiar with an illness is even harder. I guess Ive been lucky on this occassion.
Hi I was told by an alternative health practitioner many years ago that she who also suffered from the same condition as you and I, that she had been fighting a loosing battle in Scotland trying to get the condition recognised, for a long time. She said the advice she was given was to go down south in order to get treatment. She was told that the treatment that would certainly alleviate the symptoms was only given at the hospitals that treat conditions that require lymph node expertise. She was also told that as there at the time only two hospitals that had this treatment in their curriculum. The treatment cancer suffering patients required on many occasions was is in regards to treatment of the lymph nodes. As there are many more cancer patients requiring this treatment, in order to prolong their lives, there was not enough facilities qualified staff funds to spread on the NHS. I don't want to be sceptical but I do not believe Lymphodema , is such an unknown entity to the medical profession GPS and the like. I believe it is ignored due to financial costing on behalf of the NHS. They are overlooking the mental along with the physical effects of this condition. The persons who suffer the effects of it, tend to wear long skirts or trousers and hide it and are embarrassed by the appearance of it.On asking GPS, they totally ignore it and don't offer treatment, going into hospitals for other medical conditions and being examined, I can talk with first hand experience of this on many occasions, the swelling in my legs and now my arms, has never been questioned. I have brought it to the attention on many occasions on being examined, only to be fobbed of. Wouldn't you think on getting very serious life threatening illnesses treated that should parts of said patients body, mine , be swollen out of proportion be a concern, as to what was wrong and would an opporation be compromised by the severity of a further "unrecognised ", condition along with the recovery process. Why would a patient get operated on in order to enhance/save their life, by medical experts, that are willing to take the chance that an excisting, very visible to them further condition not treated, would not compromise the results and the health of their patient. Doesn't make any sense. It truly is mental cruelty to ignore and not give the answeres asked by the sufferers. It renders the sufferers helpless and lost in a system that just doesn't care as it doesn't render enough importance in medical terms, so many doctors refuse the necessary elasticated stocking that can bring relief. Is it due to the cost of the items, oh yes it is.
Like I have said, do the research. Print it all off and give it to the doctor. They might not read it right that minute but they will and then they will have a better understanding of your problem. We cant expect every doctor to know everything about every illness going.
Also, please note, NHS Scotland is different from NHS England, Wales or Ireland.
Good advice thanks, I also live in Scotland, was born here. This is good news as so many other sufferers living here haven't had your positive outcome. The American medical services are so ahead of us in Britain, going by the fact they recognised this condition years ago. I find it strange and wonder if their findings on it were ever published in the Lancet?. Allways thought any new, recognised, disease, health issue was published for the medical fraternity to read and recognise. The quedos given to any medical researchers recognising and validating their latest research finding were put in print, simply to get funding for said research. Who knows. Thanks again.
Funnily enough the last time 4 months or so I asked my GP to look at the condition of my legs, the diagnosis I was given was that I had Athritis, strange that, as I must have had it all my life?. After visiting a MLD masseuse therapist privately, and going back to my GP with the findings, also on starting to relate about the condition, I was told that no explanation was required as she has known about this condition for many years. I was referred to the revelant clinic for treatment/ evaluation right away. It's only a few miles from my home !!!
Go to a certified MLD masseuse and although it will have to be a private session and paid for by you, get an assessment, then go back to your doctor and tell him/her what you've done and the diagnosis. They will recognise that you are aware of your condition fully and know what treatment is required. Then ask for said treatment and say you want a referral to a specialist. It worked for me. The £50or £60 it has cost you for the private masseuse session you pay for initially is worth every penny. Look up a MLD on your internet, they have to be qualified in this area not any other masseuse will do. There are not many so hope one is in your area. Good Luck
I did this to St Georges to the most eminent x2 hiding away after travelling 100miles each way & staying overnight. For 10 min aopt ?
What has been written is untrue & adisgrace regarding compression , Stage 1 has now become stage 2 without anyone except me trying to address research & pan of action .How can it be managed as refuse to acknowledge the conditions which can link with obesity.What came first?
As long as NHS has the ethos & policy to ignore the Chronic & individuals, problems will occur as the very core of medicine is research to improve & treat matters surely, also thinking out of the box creatively .Research from square one is imperative but not happening ??!!.
Yes they are run by Macmillan nurses on remits .We are just cash cows .
Am told the LA do not provide treatment nor will new GP assist in acquiring a contribution from CCG yet blaming me for the NHS incompetence[ procedures & policy] costings that has been totally inappropriate and unfair .
They left me with acute oedema for over 3 yrs but suspect had a problem from birth .
It is now lipo-lymphoedema and mobility/function is practically nil.Yet what is there to help the archaic compression and cosmetic liposuction ??!!
They are still refusing to assist knowing ignored classic heart failure symptons before and after sudden cardiac arrest .Also had to pay for assistance abroad.They are much kinder there.
Hi Glynis, I empathise whole heartedly. This horrible condition is ignored by the NHS services. I have been asking as to what was causing the swelling in my legs for over 40 years and never once got a truthful answere. From what I have perceived as the only long term option of relief, is to self fund a type of lipo suction treatment. Seemingly the results fro this treatment has a good success rate. Unfortunately it costs around £12,000 pounds. If I had the funds for this I would definitely do it. Another option is to find a qualified massage therapist who specialise in lymphatic drainage. The treatment can cost £60 per session. You could look up and see if you have one local to you. A normal massage for the illness so many of us share is of no value. I personally as of yet haven't tried this treatment but will be doing so soon. I have purchased a Revitive 1X which boosts the blood flow through you feet and legs whilst you sit. It's painless and worth a try. It has an Isorocker facility which mimics you walking, whilst seated. Don't give up as there are options out there, which could help. Best Wishes.
Hi Glynis.whats the difference between these. I have lymphoedema and we do sound alike.I too have just moved to be near my kids a n d have just finished the rounds of new doctors .Hosp.specai.ect and you sound like me.love Jan.
Your docter should refer you to a clinic and as i am in Wiltshire i do know that there are some in my county. Dont give up the local GP dosnt know a thing and i would love to talk to you but they wont give you a comtact number i have tried in the past.
Wiltshire has just opened one at Savernack Hospital in Marlborough run by Macmillian nurses --try giving them a call and they may be able to give you a contact.
When i found my clinic it was attached to a Hospis and i like you felt that i couldnt take any more -but there is help and you just have to be the loudest when dealing with the docter.
There isnt a cure but if you get help you can manage it and the swelling does go down --i have lost 2 stone this year and it has taken me 10 years to do so. Dont exersize withthe compression off as this will make it worse. you must keep them on as much as you can even at night --i wear flight sox at night and sleep with a pillow under my legs frim the back of the knee down,i find that the foot support dosnt matter more from the creese at the back of the knee.
Also when you are hot and sticky use some talc i get theough so much that my daughter bought me a carrier bag full of assorted talcs for christmas.
To finish if you have daughters please keep a eye on their legs as it is a woman thing you pass on.
Don't give up, or give in more like it. One out of every 11 woman suffer with this condition on some level. It truly is well recognised and understood by the majority of The NHS doctors. Every medical practise , doctors surgery has more than one random sufferer, of this condition. I like you have more than one condition, I have just recently had my 3rd Subachronoid brain haemorrhage and also have Meriners disease so empathise with your situation. I cannot do anything about those conditions apart from getting medical help, for which I am most grateful. I am now over60 years old and after many years of asking for answeres as to why I have heavy swollen legs and answeres as in respect to my very swollen ankles, I was always fobbed of. Only now am I being recognised worthy of investigation/treatment and leggings. I suggest you write to your local MP, explaining your position and include what you have and are going through and that you need help with your condition been taken seriously. You truly have nothing to loose but could do with support. Good Luck.
That s a very common story. My GP does not believe me either, despite being given a letter from the specialist I had seen. She very grudgingly agreed to refer me to the lymphedema clinic for some compression garments. It's very should destroying.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Lipidema Diagnosis obtained and still feeling bleurgh.