Advice for Attending a GP appointment about Lipoedema.

One of my lovely readers has sent me a message about approaching a GP to talk about the possibilities of having lipoedema.

My typing isn’t great at the moment due to my surgery 2 weeks ago. I’ve enlisted a scribe to share my thoughts on how I could have got a better experience as part of my diagnosis.

  1. Make sure they know all of the symptoms that you experience- be honest about the pain!
  2. Ensure they know that lipoedema is progressive and so time is crucial. My lipoedema seemed to increase very rapidly after 30. Especially my arms. If you choose to go down the surgery route its better to do it sooner rather than later. No one want skin lifts after too!
  3. Online your doctor can access information about lipoedema at the link here. http://www.lipoedema.co.uk/news/gps-and-lipoedema/     It would be a good idea to check this information out yourself.
  4. You are entitled to compression for lipoedema, it will help you to wear it.
  5. Be clear about weight being impossible to loose from limbs even when you diet.
  6. Ask to be referred to a lymph clinic. (there isn’t one locally to me so I wasn’t able to access any support)

I personally didn’t really have any support from the NHS at all, I was passed around lots of different departments to no avail. My detailed, official diagnosis came from Mr Karri from the Karri Clinic in Hull. The consultation fee I paid to talk about my legs was worth every single penny. Consultations are not hard sell either, it was truly an absolute relief to hear exactly the type of lipoedema I had and what could be done about it. The report I received post consultation really was exceptional.

The main piece of advice I would offer ladies would be to persistent with their GP but be aware that not very much will be offered as treatment. . I would recommend going straight to the Karri Clinic – its been life changing for me.

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I’m improving….

Just to check in, I cant type at the moment as my wrists are so sore.

I’m doing okay and all is as expected.

I have lost 1.2 litres from each arm, and around 4 litres from my legs. Somewhere in all that has been factored my pubic area too.

Totally successful!

NO MORE SURGERIES!!!!

Once I am getting better I will blog properly.

It’s tomorrow!!!

I have packed my bag for tomorrow and am pretty much ready to roll with it. I can’t help feeling nervous though…..

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I spent today at home resting and making sure that my legs were elevated so i had no swelling. Last time I had this operation my crazy ex-boss had me working until 1am on something even though my operation was first thing the next morning. I went into my operation absolutely shattered and not mentally in the correct place to be facing such a life changing operation. This time I took the time needed to make sure that I was ready.

My school has been amazing with me, I had so many beautiful gifts and very special letters and drawings from many of my students. It really is fab that people were able to go above and beyond to show me that they care. I never expect anything from anyone so a huge box of treats really is wonderful!

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This summer is going to be fabulous, I am already thinking about the skirts. dresses, shorts and t-shirts that I am going to be able to wear. This is a difficult process to go through just to be normal but it is one that is a necessity to take and I know that I will look back on this positively,

I have been thinking about my lovely mum today who is very upset that she has passed this condition onto me. She always knew something was wrong with her legs too but medical professionals in years gone by told her nothing was wrong with her. Luckily, her legs are nowhere close to as bad as mine so she has enjoyed a lifetime of decent mobility. When discussing this with her today over a coffee she said that for sure she would have had these operations done too and that I am so lucky to be able to take this opportunity; she is right of course, as usual.

This evening I will be enjoying some fab food and an early night before making an early start tomorrow. My plan is that I front it out and just walk straight in to my surgery without crying at all…

Next time I post I will have to have someone typing for me because I doubt my arms and hands will be ready for sitting at a keyboard.

 

Support through my Lipoedema Journey

Ive been thinking today how lucky I am to have so many amazing people around me that will support me and who was able to accept me exactly as I was prior to my surgery. I hated everything about my legs before going through this process. I would stay in alone a lot more than I would care to admit. I felt ashamed of my legs and found it so difficult to manage my confidence levels. Fact is I became great at hiding how I felt and would pretend that I was fine even though I clearly wasn’t.

I hadn’t been diagnosed long when I met my partner. He always just overlooked my legs and never made me feel bad about them. Steven has this great ability to sense if you’re sensitive about something and make everything alright. I have been so lucky that he has always been their from diagnosis right the way up to surgery 3.

Through my first and second operations and all of the times prior to that he has been by my side. Not once has he made me feel like I am anything but something amazing- even though my legs were not even close to being normal. He slept in a chair next to my bed in hospital because I didn’t want him to leave, he has cooked me fab food, managed my injections, carried me about and been absolutely my best friend. Lipoedema hurts, it hurts your body  physically and it hurts your soul. I had to stand by as my limbs became more and more deformed was brutal and robbed me of my 20’s and early 30’s. People do not treat you well when you have legs like that, you’re almost a second class citizen. I wanted to wear fabulous clothes and go to the big nightclubs and fancy places- I did go but I never ever really felt good enough (now I am just bloody angry that the NHS let me be like that and I am mad with myself for letting myself think these things!). Lipoedema legs scream to the misinformed world that you’re fat, lazy, greedy or let yourself go the list goes on. Little did people know I was in the gym every night or starving myself to ridiculous levels.  My Steven, took me totally for who I am and always has. My new legs have changed me in more ways than one, my legs match the person I am facially and internally. My new legs seem to give me a validation that I wish I knew I had already before my operations.

In short, I know that I am going into this surgery and that I will come out a new woman again. It’s cool to know that I have a person in my life that loved me at my lowest and was rewarded for this by sharing my life at my best. Before we are quick to say to our friends that all men are selfish or rude or want something unrealistic take a second to remember that amongst the seemingly vast pool of awful guys out there, there are a few that are chivalrous and absolute gentleman. For these everyday heroes, helping you with compression for what seems like hours, putting up with pins and needles/ pain and holding your hand through post op pain isn’t a big deal. Facing life changing operations and expelling all the emotional and physical pain I have been burdened with since my childhood was never going to be easy but it is definitely easier with wonderful support.

Let’s do this….. IMG_0303.jpg

I’m on the countdown….

There are 4 more sleeps before I go an have what I am hoping is my final surgery. This time I will be having work on both my arms and legs which is leaving me feeling anxious and worried that I will have absolutely no independence. I have always been of strong character and pretty tough but both my last operations took me ages to get better from and I felt disheartened when I heard that people have been absolutely fine after 5 weeks. Last time I was still fairly poorly after around five weeks, I just couldn’t get going.

Tonight, I had my long nails clipped back and my acrylic toe nails removed and I just don’t feel like myself. For me this signifies the beginning of this 3rd journey that I have come to know so well.

My greatest wish is that I will have a good outcome where my skin is able to snap back and look okay without another surgery. My expectations are not unreasonable as I know that I am not going to come out of this looking like a Victoria Secret’s model. All I would like is to be able to not feel ashamed of myself and look normal. I feel like I am nearly there because everyday I like how I look and I’m wearing short dresses in fact I even have worn some very tasteful, classic thigh boots! I never in my wildest dreams thought that I would be able to wear something like that. Another milestone recently was that I wore a short white shirt dress (short being just above the knee) but I wore it with bare legs. The joy this brought me was incredible although I don’t think I will ever get used to having to shave my legs- pre-surgery I didn’t have any leg hair!

Even though I am fearful, I know that the results are life changing and that I feel the best that I have ever done. The cost is a huge factor in this process. My surgery this week cost me £8,900. I have been thinking what I could have done with this money and it feels so unfair that I have to find this amount of money even though I pay a high band level of tax and NI. This surgery has probably robbed me of a chance of having things such as a wedding. I am blessed because I have an amazing father that has funded my treatment and I will always be grateful to him for giving me my life back.

The numbness and the pins and needles sensations have just about gone in my legs but my arms have been horrific recently. I have struggled to hold my arms up to write on a board or even enough to hold my arms to drive the car. Last Friday, I found myself struggling to use a knife and fork which isn’t something that I can continue to cope with. The numbness still is causing an issue between my legs around the pubic area. The pins and needles have twisted from my knees and through my thighs. I haven’t asked the surgeon yet if he is able to do this but I feel that this is something that must be done.

I am ready to face this and hope that I shed too many tears. As far as I can see sometimes ignorance is very much bliss.

Roll on 27th April….

My date has finally been confirmed for 11.30am on the 27th April and I am equally as scared as I am excited. Yesterday the postman brought me all of the swabs that I need to do pre-op and requests for my blood work and I literally did them straight away. For those of you who don’t know this drill all you have to do swab inside the nose and on the perineal (between the vagina and anus) and then place the swob into a little plastic case.

Over the past few weeks I have been trying really hard to limit my diet and lose as much weight as I can over the next month. I am desperately hoping that I will be able to lose a stone so I can get the best possible results. Just recently, I have found myself unable to go running due to the weather and also sheer workload from school. Within the next month I need to find ‘me time’ to get going again and really work on my summer body!

As you may have read from my blog I did find recovery difficult and I know that this isn’t true for everyone, but it is making me nervous about how I am going to cope when all of my limbs have been operated on. I feel so lucky that my surgeon is so amazing and that he will do a great job on me, this is reassuring. Scared or not I am getting this done! Screen Shot 2018-03-04 at 16.22.27

It’s been nearly a year ….

It has been nearly a whole year since I embarked on this journey of treatment and recovery. I can’t believe how far I have come and how much different I am. I have changed physically and emotionally and I really feel at peace with my body. My legs not only work but they actually look good. Take today for example- not only did I wear a silver coloured short skirt with snake skin ankle boots but I actually went out running again too! Never in my life did I think that I would have been able to do these things even after surgery.

I am loving my life and loving being me right now and this is an extraordinary feeling. I am still waiting for the third and final surgery to complete the new me. Turning down a surgery at christmas was so hard for me but with only a few hours notice I didn’t really have a choice. I have everything crossed that I am going to be able to finish this process this February. One things for sure, I will keep you posted.

 

Recent soreness and further shrinking…

When walking with my friend at work this week she was amazed that my legs appear to have shrunk more. I have to admit that they have been very sore in the calf area even though I wear compression tights most days. On further inspection myself I have to say I agree that they are reducing still. It is nearly six months since my last surgery and it seems I am still healing.  So here is my six month post surgery image!

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I am LOVING these tights!