Andy 'Scarfman' Lloyd's Blog

A week ago I had appointment at a local hospital where my worst fears were confirmed, I do indeed have a lifelong condition called lymphoedema(in my lower legs) after all. I say after all because I have had this possible diagnosis hanging over me for about the last twelve months or so.  I feel flat, fed-up and pretty devastated at this news.  I am crying inside but overtly trying to put a brave face on it….what other option is there?  It is just another setback in my life to add to all the other host of setbacks that I have had in my life thus far.  Will my luck ever change for the better? I am truly starting to think that I am jinxed!

I first got told last summer that my swollen lower legs could possibly be lymphoedema.  This was after a nasty bout of cellulitis and me being rushed in to a hospital Medical Acute Unit.  As I found out more about lymphoedema afterwards my heart quickly sank.  All I could think of was the line that said ‘there is no cure for it, it is a lifelong condition but it can be managed’.  To some people this would not have seemed like the end of the world but to me it did.  I already had a lot of ongoing health issues as it was, I certainly did not need another one.

I was diagnosed with type one diabetes aged seventeen..for life.  I had two prostate cancer scares from the age of twenty-one, I had a condition rather called chronic bacterial prostatitis(prostate infection).  This gave me an imitable bladder for the rest of my life. The infection tightened up and inflamed all my pelvic floor muscles thus leading to a tilted pelvis and daily chronic pelvic pain.  I still have the pelvic pain now and just hope it improves with physio in time.  I got diagnosed with a back problem in my late twenties.  I have a condition called spondylolisthesis(slipped vertrbrate) to my lumbar spine with nerve compression(causing sciatica down my left leg).  I have the spondylolisthesis for life(no cure) and some medical folk have suggested I was probably born with it. I was diagnosed with Obsessive Compulsive Disorder in my late teens. It is such a crippling illness to suffer from. Again, I was told it will never be cured so you have to try and manage it to an acceptable level. Throw in having to have hernia surgery, sinus surgery and an operation to remove my gallbladder and I hope you now realise why this possible lymphoedema diagnosis felt like the final straw!

I then got the shock of my life when after having a lymphogram(lymph gland scan), I got told by a doctor that I did not have lymphoedema after all. I asked him to repeat it several times because I could not believe my ears.  It was the best news I had received in ages but my ecstasy was to be short lived sadly.  I got told by another consultant two months later that my doppler leg scan was fine and so my legs must be lymphoedema.  I was devastated, crushed and also confused at this news.  Two senior consultants were telling me two cntirely different things. I therefore went to see my GP and she agreed that I needed to be seen at another hospital by another Vascular Surgeon.

Therefore, last Friday was this appointment to confirm whether or not I had lymphoedema.  In my heart-of-hearts I thought it must be lymphoedema because I had all the symptoms for it.  For example, my legs from the knees down swell up when I have been on my feet for no more than say ten minutes.  Whenever I press my finger on one of my swollen legs it then leaves a definite indentation afterwards, a classic sign of lymphoedema I had read.  All my blood tests had come back fine and my kidneys were also said to be in excellent working order.  It all pointed to it being lymphoedema but then why did my lymphogram come back all clear and not show anything? Why did this consultant shout at me saying, “YOU DO NOT HAVE LYMPHOEDEMA” if I did indeed have it?

Unlike the previous two that I had seen, I have to be honest and say that the Vascular Consultant I saw this time was a nice chap.  He was polite and not once did I find him condescending towards me.  I told him all the story and how I have one doctor saying I do not have lymphoedema and another one saying I do.  I was sooooo desperate to hear him say that he did not think it was lymphoedema. However, at the same time I was also fearful he might say that and then follow it up with saying that he did not know what was wrong with me.  I did not want to be left in no man’s land like that. I needed some kind clarity before leaving the hospital for home even it was bad news.

The consultant left me in this kind of treatment room whilst he went away to look at results of all the scans and tests that I’d had done over the last year. Before he went away to look at them I asked him a vital question regarding the lymphogram. I asked him, ” can a person still have lymphodema even though a lymphogram does not show anything”? My lymphogram had not shown anything was wrong with my lymph glands. He replied “yes” to my great disappointment. After this remark I knew it looked odds-on then that I must have lymphoedema.

When the doctor came back to see me I was bracing myself for the worst.  What I could not cope with was him saying he did not know what it was.  His manner again was very polite and I just wish the two others doctors who I had previously seen about my legs could have been like him.  He stated how he had looked at my scans and that they were all fine. My doppler leg scan for example showed good circulation and nothing abnormal.  He looked at a scan they had done of my pelvis about twelve months ago, to see if anything in that could explain my legs swelling.  It was completely fine and so my sore pelvis was not the cause. He told me how the air ways/channels to all my lymph glands were all fine.  Nothing is blocking them according to the lymphogram. Nevertheless, a lymphogram does not show impaired drainage of the lymph glands(how the fluid drains).  Therefore, with this in mind and all the other scans coming back fine, “we have to conclude it is lymphoedema” he said.

I was gutted at being told for definite that I had lymphoedema………..FOR THE REST OF MY LIFE.  Unlike the other two differing numpties, I believed this doctor’s verdict. I had resigned myself to having lyphoedema even before going that day but I just hoped that perhaps there was a slim chance that maybe I did not have it. Thinking I probably did have it is a completely different feeling compared to when being told for sure that I definitely did. Yes I was not shocked but at the same time I was gutted.  Gutted that I have ANOTHER health issue to put up with that can not be cured.  The only thing that irritated me about this doctor was when he said the lymphoedema will gradually get worse over time. I needed that information like a hole in the head. Oh and also him saying how he agreed with the last doctor/numpty that I saw, regarding me needing to wear compression stockings(I’d tried to explain about them making my sciatica and pelvic pain a lot worse).

On the positive side….if there is any in this blog, the consultant gave me a list of exercises to do for lymphoedema that I had never come across before. That alone was more than the last useless Vascular doctor had done for me. The last one did not even know if that hospital that I saw him in had a lymphoedema clinic in operation.  I had to tell him myself that it did not, I knew more than him for crying out loud.  As well as the exercises this more helpful doctor also mentioned to me something called Flowtron.  I thought it must be some kind of drug but I was wrong.  It is a kind of pump/balloon type of device that pumps the built up fluid back up into your lymph glands……it helps clear the excess fluid for a time anyhow.  He thought there was chance I could get this done on the NHS and said he will write to my GP with the details. The only downside was that he said you are supposed to wear stockings after it, otherwise it will not work for very long.   If this pump thing works like stockings(via compreesion) then I am a bit fearful at how much it will hurt my back and pelvis.  If I do not have to pay for it though, then I see no harm in trying it once however. If it makes my back and pelvic pain worse then I will just not have it done again. I definitely think I need to try it because I have more to gain from it than lose.

I was encouraged that this consultant had at least heard of a massage for lymphoedema called (MLD) MANUAL LYMPHATIC DRAINAGE. I got the distinct impression that the last two previous twits(doctors) had not but I could be wrong.  He told me that is one of the things that can help it but that the hospital does not offer this service.  It is a highly specified technique so not many people are trained in it. Thankfully, I have found two women within about fifteen miles of my home who do this.  Both are private however and so I am going to have to pay for it. I think it is an absolute disgrace that this therapy is not offered on the National Health Service(thus free).  If I was not in a position to able to afford having it done then I would not get any help and so my lymphoedema would not improve. All they could offer me at the hospital was compression stockings…..not good enough in my book!

On a similar note, as a now ‘new lymphoedema sufferer’ I am outraged that there are no NHS hospitals in my area that currently run lymphoedema clinics.  My nearest hospital has signs posts directing to you the lymphoedema clinic but I soon found afterwards that it does not exist anymore. I spoke on the phone to this lovely seemingly well-qualified Lymphoedema Nurse that was at my local hosopital, only to be told she was leaving her post last Christmas.  I complained about no NHS lymphoedema clinics to this nice Vascular Consultant that I saw.  He said it was due to cuts and there just is not the money for them.  I think this is appalling because sufferers of this life-long condition need all the help we can get. The last hospital I went to was a disgrace in terms of offering me any supportive help. They could not get me out the door quick enough.  People like me who have just been told they have this problem for the rest of their lives need not just physical, but also emotional help.  It is a lot to take in and I am still struggling to come to terms with it a week further on.

I felt pretty devastated when I got back home with the news.  I expected it like I have said but at the same time nobody is ever going to tell me that I do not have lymphoedema anymore.  The realisation of it all made me feel sooooooooo low and depressed.  I know on the plus side lymphoedema is not life threatening but at the same time I am just sick to death of getting health conditions that do not have a RUDDY CURE! I have enough battles on my plate as it is trying to get my bad back, pelvis and OCD a lot better, I certainly did not need another one.  I just need a decent break.

It feels like I’m going one step forward and two back all of the time.  I want to meet somebody and get a brilliant job, both of these things STILL feel like a million miles away at the moment though. I know I have to keep fighting, however even determined me feels so close to throwing the towel in at the moment.  Since being diagnosed for sure with lymphoedema in my legs, I have even started getting upset at seeing people in shorts who have normal sized ankles and legs……and I feel silly for saying it but it is the truth. For example, I saw a guy in his fifties go past our house the other day wearing a pair of sandals that I would not been seen dead in, but the sight of his bare non-lymphodema legs and ankles really got to me.  I just hope this self torment fades away soon.  How do lymphoedema suffers cope going abroad in really hot weather and say going on the beach with swollen limbs? Things like this worry me.  I am scared a fit girl will run a mile once she sees me when my legs are particularly swollen. I have all these and many more worries running through my head now since my lymphoedema has been confirmed.

The plan ahead therefore is to first go and start having this manual lymphatic drainage thing done. Fingers crossed it helps reduce the swelling in my legs somewhat and also this poisoning feeling that I get throughout my body sometimes(due to the built up fluid I presume).  Hopefully, if I can sort my sore ribs out with physio and be less acidic, then I will be able to start taking anti-inflammatory drugs again for my lower back and pelvic pain. At the mo such drugs sting my ribs and make me feel all shaky and nauseous.  Only once I am on anti-inflamms for my pelvis once again will I then be able to withstand wearing compression stockings for the lymphoedema.  Hope you followed all that because it is a bit tricky to understand. I tried wearing compression stockings six months ago and it made my sciatica horrendous afterwards.

I just need to try and regroup having had this new setback. I somehow need to believe that in time I still will achieve the things that I want to in my life. At the moment I am scared that I will not. I am worried that my ongoing ill health is going to beat me.  This lymphoedema business has to be the last BODY BLOW that I get for awhile……..because I am not sure how many more BLOWS TO THE BODY this man can take!!!!