I’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…It was the resistance to diet which finally made the link to Lipoedema for me.
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!We 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!
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!)
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.
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 🙂