Another Lipedema Story - Helen

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Another Lipedema Story - Helen

Postby patoco » Sun Dec 03, 2006 11:17 am

Another Lipedema Story - Helen

Lymphedema People


If you have the time to read this, get yourself comfy because I tend to go on - just a bit, when I start writing... and thanks for taking the time to have a look.

“Two naked people with short hair are standing with their backs to you.

How can you tell which is male and which is female?” That was the question asked of the class by our Biology teacher. Aged 11, I confidently put up my hand.

“Because the female would have larger hips” I exclaimed. The teacher’s
affirmative response was drowned out by the hysterical laughter coming from my classmates.

“You should know, Helen! Big Hips. Big Hips!”

That’s when I became known as ‘Big H’ – my nickname that continued till my twenties.

I was surprised at that response – I had never thought about my body shape before that. It was when I was 17 that I realised that maybe I wasn’t like everybody else. My boyfriend at the time saw a photo of me in an album and asked to have it. I said yes. When I went to his house it was on his wall.

The photo had been taken whilst I was in France; I was photographed from behind, in silhouette, standing in the surf, arms outstretched above me, with my tiny waist and feminine hips – very Marilyn Monroesque. “Toby, I find it really odd that you want that photo of me – why?” “But you look fantastic, it’s a gorgeous picture” he said. “Erh, are you some kind of weirdo? I was 9 when that was taken.” Toby did a double-take. “But you can’t have been – that is a woman’s figure.

That was my second clue that I was not ‘normal’. I was a slow learner!
Fast forward to my being 22 years old and pregnant for the first time. It was April 1989 and I was about to be my sister’s bridesmaid. I was 6 weeks into my pregnancy and went for a dress fitting. Whilst my sister opted for a stunning, sophisticated outfit, she wanted her bridesmaids to look like tutti-frutti meringues! I was not best pleased. A fitted jacket on top of a colourful full organza skirt with a tight fitting underskirt in peach satin. Totally gross! I suppose she wanted to make sure she wasn’t going to be upstaged!

Anyway, I digress. The fitting, 6 weeks pregnant. Andrew – my dressmaker – checked all the measurements, tacked up the underskirt and sent me on my way.

During the next fortnight I was staying at my parents’ house. It was really
warm and sunny and there were lots of preparations happening for the wedding.

But I seemed to spend all my time on a sun lounger – asleep. I was in so much pain. Hey, I didn’t think much of this pregnancy lark – your legs would get so painful. My appetite wasn’t up to much either.

The week before the wedding, I returned to Andrew’s for my final fitting. I
recall having really heavy legs as I climbed the stairs to his flat. He got the
skirt out – finished – and I pulled it on. Well, I would have done if I could
have got it passed my thighs – my thunder thighs! What had happened?

Andrew checked the measurements. “Oh my Goodness, Helen, what have you been eating?

Mars bars all week? You’ve put on 6 inches around your thighs.” 6 inches? …in a fortnight? I didn’t have an answer for him, I knew I hadn’t been eating much of anything, and certainly not chocolate. I just put it down to being pregnant.

Skip forward 7 months. Labour. I just got on and let it happen – no
painkillers, just all natural. I was lucky; I was pretty relaxed about it all.

But hey, what was this? As I started to push my baby’s head out, the pain of giving birth was overtaken by the most excruciating feeling I had ever felt. It was my legs or rather, my thighs to be exact. I tried to cry out for help but I soon realised that childbirth reduced me to low guttural grunting rather than anything slightly coherent. But there, in front of my eyes, I watched stretch marks appear as I pushed my firstborn out. It felt like burning knives cutting through my legs. Revolting. Even when my son was born, the pain didn’t stop. No-one understood what I had just been through – they were all too pleased with this perfect little boy who had just emerged.

That then, was my first real indicator that something was definitely wrong.
For years I would ask other mothers if they had experienced anything like that.

No-one had.

In 1995 my Mum said that she would buy me a special outfit for my other
sister’s wedding, if I would lose some weight. I wasn’t very impressed with
this bribe but I couldn’t afford a new dress so agreed. Leslie Kenton’s
Biogenic Diet was my way of losing 1 ½ stone in 32 days! New dress, great boots. I was away. Everyone said how good I looked. Yes – 36-22-42 – the statistics proved it.

I soon got into ‘power walking’. Everyday I would walk for 50 minutes…fast.

It was really exhilarating. I felt on top of the world. The thigh bulges would
never really go though – I could never understand it. The following year my doctor said “Fibromyalgia – that’s what you have”. I wasn’t so sure. I talked about my weight and the pains in my legs seeming to correlate to the times in my life when I had put on any weight.

I tried my best to explain, but nobody wanted to listen. Finally I found a way of explaining the pains. “It’s like I have butterflies inside my veins, working their way up the front of my calves, my inside knees (which is always really fatty and purple) and through my thighs.

Bubbling butterflies. At times it feels as though I must have air trapped
inside my veins – a strange curdling feeling comes over my legs. But it’s the thighs where the real pain lies. As this feeling travels up over my thighs, it feels as though I have been injected with formaldehyde in several places, just above the knees. What follows is a revolting sensation, as though the ‘formaldehyde’ is setting, no, hardening and expanding as it flows up my legs, spreading out as it travels.”

Yes, that’s it. That describes it well.

But it didn’t help. Finally my Doctor’s advice was to “go and pick some
daisies” as my fatigue was obviously related to my weight and picking daisies was all I needed to do. OMG. Patronising old goat.

I decided to lose some weight – I decided to go to the nutritionist at the
surgery for advice. After measuring, weighing and talking to me the woman looked a little non-plussed and said “I think you’re more than capable of doing this on your own. To be frank, you know more about this than me.” Oh, great!

But I did lose weight and felt better for it too. The pains in my legs didn’t
decrease though – nor did their size.

Year 2000. Boy, my legs have been going up and down like yo-yos – always a good shape, symmetrical but large. I’ve just started a course in Manual Lymphatic Drainage therapy and my tutor has suggested that we give each other treatments.

Tessa comes to my house on 10 consecutive days. She’s
inexperienced and lacking confidence so I end up talking her through each
treatment. She has good technique though. After a couple of days I’m jumping up and down to the loo – so much water! But as the days pass by, my legs really start to hurt. It’s not pleasant. By the end of the treatments I am exhausted.

It takes about 1 month following the MLD before I suddenly become aware that I am feeling a lot better. This coincides with my changing my diet radically. I give up all sugars, reduce fat (olive oil only) to a literal smear and reject dairy products (but make sure I get enough calcium through other means), wheat and potatoes. I eat the Hay way – not mixing proteins and starches. Sounds dramatic – and it was. But I still ate plenty. I certainly was not on a starvation diet. However, when I realise I have lost 70lbs in 2 ½ months I go to the doctor, concerned that all is not well. She tells me I must have had faulty scales! Yes, that’s right Doctor, that’s why I get Mums coming up to me, asking me if I’m ill because they’re really concerned about the amount of weight I’ve obviously lost in such a short period of time!

But I feel alive. For the first time in years my legs no longer hurt. As the
months progress I lose a little more but I wouldn’t have minded if I’d stayed the same weight – you see, the pains in my legs – that butterfly/formaldehyde feeling – has disappeared altogether. My legs no longer hurt. Freedom!


In 2002, now fully qualified as an MLD Therapist (in Austria with Hildegaard
Wittlinger) and able to treat lymphoedema patients with MLD, multi-layer
bandaging and compression, I find myself getting increasingly interested in
lipoedema. Hildegaard diagnosed me – mid-lesson – “yes, you have lipoedema, it is very bad. I am sorry, I can do nussing about ziz, but it is best you know ze truth.”

Thanks Hildegaard. But yes, I had a diagnosis at last. It helped to know it
wasn’t my fault. Suddenly I see women EVERYWHERE with lipoedema. Mainly bending over Tesco supermarket freezer cabinets, it has to be said, with badly fitting lycra leggings on. Not a good look! But I know they’re wearing them for comfort. Been there, done that, as they say.

I now get a name as ‘the therapist who deals with big legs’. ‘Big H’ again,
for all the right reasons!

But these women are so desperate! Was I that desperate? Lipoedema doesn't just distort the body but the mind as well. They all want me to turn the clock back and give them something that they actually hadn’t had anyway. There’s a lot of frustration out there and I’m a good target for their frustrations it seems. Non-compliant patients, that’s what the NHS therapists call them. They don’t want to try to wear compression and they don’t want to take steps to help themselves.

What’s going on? There’s a lot of aggression out there. I’m
surprised. I spend a lot of time in women’s houses, measuring, advising,
supporting, writing letters on their behalf to GPs, consultants, anyone who
might listen. I do all this gratis, having been won over by patients who are
unable to work. They’re motivated, really keen to get going with therapy and take action to change their lives, now that they have someone to support and understand their problems.

And then nothing. Not a dickie bird. The patients never call back.

What’s going on? Every so often I get a phone call from a desperate relative asking me to go and see their mother, daughter, sister or wife etc, etc. When I check my records I see it’s the same woman who I had spent hours with months previously.

There’s a pattern emerging here. (I now refer such patients to a
hypnotherapist to help them deal with these depressive feelings, which literally are 'disabling' them.) Then there are the other patients – those who really are able to pull themselves up and see this as an opportunity. Obviously for me, they are very satisfying patients to have as they are so motivated. But I still worry about the others.

Realising I’ve done really well with my own lipoedema and knowing that there is no real treatment protocol written down out there I decide I must ‘prove’ my theory to see if I can help those other patients. Therefore, over a period of 5 months I gradually re-introduce the ‘forbidden’ foods. All’s well until the 5th month. Then whoosh! My body balloons in size. I suddenly put on loads of weight. Ah, time to call a halt, me thinks. I’ve proved my theory. So, I’ll stop it all again. And so I do, I stay away from all those forbidden foods. But this time NOTHING is what happens. Not one ounce of weight comes off. I’m
messed up!

I’ve now found the UK’s top Naturopathic doctor and he and I are using me as a guinea-pig to see if we can get to the root of the problem with lipoedema. We believe it comes down to hormones (as well as genetics of course). I get all sorts of tests done privately.

Back in 2004 a large Mercedes van driver decided to crash into my right leg through my car door at high speed. Thanks very much! Now I have a nice case of lymphoedema on top of everything else. I made the ‘mistake’ of being honest and saying (whilst in hospital) that I had a pre-existing condition known as lipoedema.

Panic stations. The A&E had never heard of lipoedema. So they
wrote it down incorrectly (surprise – they called it lymphoedema!). In my
concussed state I managed to get them to change it. But they had lost interest – they really didn’t know what they were dealing with. My husband and I were left to our own devices and I was discharged from hospital just 4 ½ hours after a near-fatal accident. I am fairly certain that I left that hospital with an undiagnosed partial central dislocation of my right hip as well as many other “minor though serious injuries” as my own doctor later noted! The naturopathic doctor is treating me for all of these.

The slam on the leg, of course, made my lipoedema hurt like crazy for a while whilst all the black bruising came out in my body. But with the MLD that I taught my sisters to do, and later long-stretch bandaging and kinesiotape, the lipoedema calmed down nicely.

However my leg is now deformed and hurts in a different way to my left leg. (They were always symmetrical and since 2000-2001 hadn’t hurt at all.) And it’s been a nightmare with the insurance claim since then. Yesterday my solicitor rang me to say she had failed to find an Expert Witness who specialises in lipoedema and didn’t know what else to do! I said “well, you’re the solicitor honey, so I can tell you, I certainly don’t know what to do – I gave you the names of all my contacts.” Everyone is fixating on the lipoedema as though that’s the most important thing. Amazing – I tried for years to get people to be interested in it and now that it’s not such a problem compared to my injuries everyone wants to be all over it like a rash!

That’s my story then. Rather long-winded I know – but I always feel it’s good to get it all down. No doubt I’ll remember more next week – my brain isn’t so good since my crash!

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