lipoedema statue imageI’ve been so torn as to whether I write this blog post or not, but if it wasn’t for Google and other peoples’ online stories I would still be in the dark about what was wrong with my legs and had never even heard of Lipoedema. So this is me giving back and to show my gratitude to the bravery of those other women for sharing their stories.

Lipoedema is a condition characterised by abnormal, symmetrical fat deposition in the extremities, typically the lower limbs. Basically it means that the top half of my body appears to be out of proportion with the lower half of my body. Due to a genetic defect, the fat has been stored wrongly in my legs and has become solid and resistant to diet due to where it is located in my skin. Other affects are severe tenderness to touch, bruising, swelling, joint pain and of course the related mental health issues: low confidence, lacking self-esteem, anxiety and depression.

Google gave me this lovely image to explain…lipoedema fatIt was the resistance to diet which finally made the link to Lipoedema for me.

Discovering Lipoedema

I had been eating a healthy diet and regularly going to a gym on the run up to our wedding three years ago but nothing was changing my shapeless calves. My thighs had reduced a little but didn’t appear to keep up with the toned abs and arms I had achieved by going to weight lifting classes.

When I started to google calf exercises I came across a forum with women discussing Lipoedema.  It said that around 10% of the female population had this condition. Then I saw the photos. Photo after photo I saw legs just like mine! I was excited, confused, relieved and anxious all at once. My legs which always appeared swollen had an explanation!lipoedema swollen legWe were only months away from our wedding and I was wondering if this was something I could fix in time for my big day. We had private health care and now I had a name for the disease. I had a disease! The realisation hit me that it wasn’t my fault!

I spoke to the health care provider and there was a glimmer of hope. I got excited too soon. They didn’t recognise that surgery could fix it, even though the NHS site said that was the only permanent solution but they would provide compression garments.

Finding The Other Lippy Ladies

I found a Facebook group full of other women in my position. We were from all around the world brought together by this one awful disease. The group were about to get together for their annual meet up so I booked my ticket too.

Whilst waiting for the meet up I found details in this group about surgeons who might be able to help. There looked to be only a handful who specialised in Lipoedema in England and would you believe it one of them worked out of the hospital in my own village! I couldn’t believe my luck!

Getting Referred

I went to my doctor to ask for a referral and had another serendipitous moment. The specialist Lipoedema consultant went to the same gym as my GP and they had been discussing Lipoedema recently. For anyone reading this who has Lipoedema, you’ll know that the fact my GP knew what Lipoedema was and not confusing it for Lymphodema is extraordinary!

I was given a referral on the NHS to see consultant Mr Karri and got excited again.

The Big Meet

At the meet up of the Lipoedema Ladies Mr Karri was there. He spoke and gave us a presentation on Lipoedema and discussed surgical solutions for this disease. We were all enthralled by this gentleman who was giving us bucket loads of hope. At lunch he came and sat at my table and I was able to introduce myself and say I was due an appointment with him in the coming weeks.

These were the photos I took that day of my legs after we had a demonstration of how to use kinesio tape to help our legs. (I can’t believe I’m going to share these!)

kinesio tape lipoedema legsMy Consultation

At my appointment once I’d had various measurements and (heaven help me) photographs taken, I got my diagnosis. I had Lipoedema. I was then sent for a Lymphoscintogram. This tested that my lymphatic system was fully functioning. It confirmed that I would be suitable for surgery. Another win!

Mr Karri helped with the letter requesting for NHS funding for the surgery.

A Postcode Lottery

Unfortunately funding wasn’t approved. Having spoken extensively with many other women who suffer from this disease, the treatment on the NHS wasn’t consistent throughout the UK.

I could see from the photos that there were women much further down the line with this disease. Their stages of Lipoedema meant it was significantly affecting their mobility. It certainly limits what I am able to do with regards to distance and endurance. However it also limits me on simple things like kneeling down without pain.

Interfering Hormones

The more I researched Lipoedema, the more I learnt about the connection it has to hormonal changes in the body and although I had been informed that surgery would be a permanent solution to my problem, I was worried that pregnancy might trigger it off again.

As someone already suffering from anxiety I knew I couldn’t go ahead with surgery on my legs and then us have a family. I’d be spending my nine months pregnant worried that the swelling was going to come back. This is why we decided to have our children and then pursue the option to have surgery.

My Journey Ahead…

And now this is the point where I find myself. I’ve had my children and now I’m ready to make a big decision to care for myself so I can continue to care for my boys.

In two days time I will be meeting with Mr Karri again for a refreshed consultation. Whilst I have been busy having the boys, Mr Karri has set up his own private practice. Just five minutes drive from my house is the KarriClinic. I cant wait to get the ball rolling again.

So this is my story. My Lipoedema Journey.

If you suffer from Lipoedema or just fancy wishing me good luck on my journey, I would love for you to say hi in the comments 🙂

Hollie x

karriclinic lipoedema

 

 

My Lipoedema Story
Tagged on:             

34 thoughts on “My Lipoedema Story

  • 28/02/2017 at 5:19 pm
    Permalink

    Hi, what a great account you’ve written. I have Lipoedema also and have had three surgeries with Anne Dancey. I was diagnosed by Prof.Mortimer in 2015. I can relate to everything you’ve said. Best of luck with your surgeries. I hope that one day the NHS will decide to fund us but I think it’s highly unlikely, sadly. Take care.

    Reply
    • 28/02/2017 at 6:12 pm
      Permalink

      Anne Dancey is getting some beautiful results for her patients – you’ve chosen well with your surgeon! I can’t see the NHS funding many more people either. The public purse strings are only going to tighten unfortunately. that’s why I’m trying all my side hustles to make extra money especially whilst I’m on maternity leave x

      Reply
  • 28/02/2017 at 5:23 pm
    Permalink

    Just stopped by to say thank you for posting this, it was a similar blog post that helped me to get my diagnosis. My legs have always been the bane of my life, I call them sausage legs! Compression has helped but surgery is beyond my financial means, I wish you all the best with your consultation and hope surgery gives you beautiful shapely and pain free legs!

    Reply
    • 28/02/2017 at 6:10 pm
      Permalink

      Pain free will be amazing and anything cosmetic will be a bonus! Interestingly Mr Karri told me that he thought compression wouldn’t benefit me too much. I just hope I’m out of post op compression in time for summer and any hot weather (if we get any!) x

      Reply
  • 28/02/2017 at 5:24 pm
    Permalink

    Hi Hollie,

    As a fellow Lipoedema sufferer,patient of Mr Karri and blogger,I know just how hard it has been for you to open up and share this with the world,but believe me,it is the best thing I could have done.I have received great support and understanding,all the while creating awareness for this horrid,misdiagnosed condition!

    I look forward to watching your journey unfold.

    Lots of love,
    Lisa xxx

    Reply
    • 28/02/2017 at 6:08 pm
      Permalink

      Thank you Lisa. I hope anyone who comes across my post will see how supportive us sufferers are of one another. It has taken so much courage to write about it but I’m ready now and ready to see my journey through to the end x

      Reply
  • 28/02/2017 at 5:25 pm
    Permalink

    I wish you we’ll, this disease is crippling me. If only Dr Karri had been around when I was young and fit. But you will go through these ops with no problem . And you will be a normal woman, which is all we want. I will pray for you.

    Cheryl ford

    Reply
    • 28/02/2017 at 6:07 pm
      Permalink

      Thank you Cheryl. I do feel very fortunate that I’ve found out about Lipoedema early enough in life to benefit from surgery. Of course I wish I’d got it sooner or not had the disease at all. It’s robbed me of so many experiences but onwards and upwards! x

      Reply
  • 28/02/2017 at 5:27 pm
    Permalink

    You are SO brave and I applaud you and support you. Tell your story in your words in your way and in your time. I hope it gives you strength and peace and resolve. You have so many silent supporters here that will take these steps with you and you may even embolden a few of us to step up and out as well. Tell us how it feels to have the sun shine on your face, the wind blow in your hair and hear the world go on around you!

    Reply
    • 28/02/2017 at 6:05 pm
      Permalink

      Thank you so much Jennifer. I’m really looking forward to having the sun on my legs actually! I reckon they’ll burn straight away once I get them out for the world haha! x

      Reply
      • 28/02/2017 at 11:05 pm
        Permalink

        You show such courage! I don’t know you but I am so very proud of you. I think, even though we are still embarrassed by something out of our control, that putting it out there makes us more united. Unity is power. Thank you!

        Reply
  • 28/02/2017 at 5:40 pm
    Permalink

    A good read. The first part of the blog where you researched for a reason was me to a T. Unfortunately i live nowhere near Mr Karri and my gp certainly had never heard of lipoedema so thats where we differed. Lol.
    I think that at 62 i wouldnt go through liposuction but my daughter is half my age and i will pay for hers when the time comes. Good luck with the next stage of your journey. Your blog is well written and is an easy and concise read. Well done x

    Reply
    • 28/02/2017 at 6:04 pm
      Permalink

      I was actually relieved to find that we were having a second boy as I’d hate to pass these awful genes on. Your daughter will be so very grateful for your financial support in helping her get rid of her lipoedema x

      Reply
  • 28/02/2017 at 6:44 pm
    Permalink

    So proud of my wife. I know how hard she will have found writing this post. She has mine and the boys full support x

    Reply
    • 28/02/2017 at 7:58 pm
      Permalink

      Thank you so much darling x

      Reply
  • 28/02/2017 at 7:23 pm
    Permalink

    Love your story, I wish upon wish I could have surgery but for me it will always be beyond my purse, good luck, I hope all goes well and someone else can get rid of this awful disease xx

    Reply
    • 28/02/2017 at 7:59 pm
      Permalink

      I hope that you do get your wish one day x

      Reply
  • 28/02/2017 at 7:23 pm
    Permalink

    I have just had my surgery about 4 weeks ago. Ive been blogging about it. Of course I chose the lovely Mr Karri to do this! He has been amazing. I am going to need another 2 surgeries yet. Read my blog.

    Lipoedemaweb.wordpress.com

    It’s really detailed over 20 posts from pre surgery and diagnosis to recovery.

    Best wishes- Katie

    Reply
    • 28/02/2017 at 7:59 pm
      Permalink

      I’ll enjoy reading it this evening x

      Reply
  • 28/02/2017 at 7:23 pm
    Permalink

    You are a brave woman! The medical community needs people like you to see their journey so that doctors can understand and see the pain, depression and the anguish and the fight that we’re going through because our lymphatic systems are not working properly. I will look forward to following your story. It will impact many for years to come. Thank you for being transparent. Stay fierce!

    Reply
    • 28/02/2017 at 8:00 pm
      Permalink

      Thank you so much Annie. I think I do feel fierce at the moment actually! First time in a long time. I think it is that determination which is making me feel strong enough to share my journey x

      Reply
  • 28/02/2017 at 8:45 pm
    Permalink

    Good luck Hollie, like you I also have decided to find out about surgery for this horrid condition, I have a consultation booked with Anne Dancey in March, at 52 I struggle kneeling and getting upstairs plus loads of other stuff. I have with the help of my GP applied for NHS funding (I don’t hold out much luck) the GP said that when we wrote we had to show how much we would be saving the NHS like knee and hip replacements and everything else so we just have to wait.
    (I think we also met each other at the big meet as I frequently kinsio tape my legs like this, usually pink lol).

    Reply
    • 02/03/2017 at 10:46 am
      Permalink

      Best of luck for your funding application! I really hope more of us get funding in the future. I know what you mean about climbing stairs though – it really is an awful condition that many of us are trying to hide x

      Reply
  • 28/02/2017 at 9:54 pm
    Permalink

    Thank you for sharing! You’ve already taught me something, I hadn’t heard of the tape before you mentioned it and showing the pictures really gave me an idea of what it was and how it could work for me. Best of luck on your journey!

    Reply
    • 02/03/2017 at 10:43 am
      Permalink

      Sometimes they sell it in Aldi so its worth keeping an eye out for it! x

      Reply
  • 28/02/2017 at 10:22 pm
    Permalink

    Wonderful words that tell the story of so many of your fellow Lipoedema sufferers. I too learned so much from meeting other ladies with this godawful disease. It’s so unfair that treatment is not readily available to us. I’m really looking forward to hearing more about your journey. X

    Reply
    • 02/03/2017 at 10:43 am
      Permalink

      I should really show some gratitude towards my lipoedema for introducing me to so many lovely people! x

      Reply
  • 28/02/2017 at 10:23 pm
    Permalink

    Good luck with your journey and your blog,I am a patient of Mis Anne Dancey,and am just about to have my fourth op with her. She has changed life for the better,rid me of debilitating pain,given me back my mobility ,I feel like Iv dropped 10 years off my age.I wish the same for all sufferers of this disabling ,humiliating disease XxxLizzie

    Reply
    • 02/03/2017 at 10:42 am
      Permalink

      I’ve seen lots of Miss Dancey’s results and they’re brilliant! Best of luck with your fourth operation! x

      Reply
  • 01/03/2017 at 4:42 am
    Permalink

    Good luck on your journey.
    I will be following your blog and I am close at hand should you need any advice from another lippylady who has had liposuction 3 times (and is very glad I did). GO GIRL!

    Reply
    • 02/03/2017 at 10:41 am
      Permalink

      Thanks so much Michelle x

      Reply

Leave a Reply

Your email address will not be published. Required fields are marked *

CommentLuv badge