I look back to a photo I had taken as a child, I must have been about 8 and I looked 'normal'. By the time I was at high school I was large...I remember having to go to Evans to buy school skirts, hating PE (and the changing rooms), hating swimming and being called thunder thighs/tree trunk legs. It was then I created this larger than life persona that reduced the comments but I still didn’t like the person I was.
My first uniformed job meant I was squeezing myself into trousers that didn’t fit & I just felt uncomfortable...then there was my first bank uniform in size massive - a pleated skirt which added to the bulk. I would go to the gym, watch what I ate but very little made a difference. I was my ex at this point and his family would make comments about my size, my diet, my exercise. Why do people think they have a right?
In the run up to my 30's I went for it at weight watchers. I lost 2.5 stone but nothing off those legs. They seemed to be getting bigger so I lived most of my life in baggy dark trousers with pretty tops - let's hide those legs. I focused on work, there I felt in control, fairly successful until my final 'proper job' as I describe it. I didn't fit in, I was continually being given 'support' to lose weight and exercise. There was one person in this company who truly got me and we are still friends to this day. I left this company not feeling like I was enough (those childhood beliefs that never left me) and I decided I didn't want to live like that.
From there I went self employed in 2012, keeping the wall up to most people so no one could get in and make me feel bad. This also went for relationships...I'm currently 'celebrating' 10yrs of being single. Not how I wanted life but it saves the pain. Work-wise it has been the best decision - generally I love what I do (sometimes could do without the excessive travelling due to the pain and swelling it brings).
And that brings me to my diagnosis. It must have been summer of 2014 or 2015 I was helping at a holiday club. By now I had somewhat established an acceptance/loathing relationship with my legs and I sometimes would break into cropped trousers. A lovely lady remarked that I may have Lipoedema as she had it. She told me I would have to fight and she was right! I came home and googled Lipoedema - starring back at me were photos of legs that could have been mine and my mum felt the same.
Off I went to the doctor armed with information. I was advised that 'you don't have lymphedema dear' and I was promptly referred to Counter Weight (NHS Forth Valley weight management programme). I was devastated but this was the top doctor in the surgery...if he didn’t believe me/understand then who would? A few months passed and the lovely lady again asked me to go back and push. This time I got a student doctor and I completely played her. Advising that unless I was referred to a clinic I would keep blaming Lipoedema for my lack of weight loss and almost that they had to prove to me I didn't have it.
In June 2016 I entered the clinic for the first time. It was held in oncology and I felt such a fraud - just waiting to be found out. Within 10mins of being in I had an initial diagnosis. From there came the joy that this wasn't all my fault followed by the heartbreak of being uncertain how to improve things. I joined Talk Lipoedema where the support was amazing. I didn't feel alone with this. I started my first set of compression that month and it was a hate / hate relationship.
In November that year I asked to be referred to Mr Munnoch in Ninewells. I wanted to go for information only. I visited in January 2017 where I was advised to try the RAD diet, that compression was my friend and that I could be a candidate for surgery if funding could be agreed. This blew my mind as there was a part of me that expected him to say I didn't have it and I was just overweight. In March 2017 I decided to take on the funding battle and it was eventually approved in September 2017 bringing relief and fear. During this time I was moved from the small clinic at the hospital to the full time clinic in the hospice and this was amazing. The nurses there are full time, they understand it and have been so supportive since then.
In April 2018 I had my first surgery on my right leg removing around 8ltr. It was far more difficult than I expected. I didn’t regret it but it was tough. July 2018 saw my second surgery on my left leg where around 7ltr was removed. This wasn't as bad as my first operation but still tough. Within a week I started MLD which made a huge difference.
Here I am in June 2019. I'm so lucky to live in Scotland and manage to secure funding but liposuction hasn't made everything OK. I am chunkier in other bits; I still have overhangs in my ankles; naked I look like a cooked and cooled chicken drumstick. I battle compression daily but it is now my friend.
Dressed- my legs look better but the mind monkeys are still in my head. I await a third OP for my bottom but it requires so weight loss first.