My Story - Sarah

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My Story - Sarah

Postby lazydaisy212 » Tue Jun 23, 2009 8:28 pm


My name is Sarah and I am 33 years old and after 17 years of hell I have finally been diagnosed correctly with Lipedema!

I suppose I didn't notice my swollen legs until my late teens, I had always had chunky legs and my brother's would constantly tease me singing the theme tune to Thunder Cats but replacing it with Thunder Thighs instead but as this sibling teasing is part and parcel or my family I never really took it to heart. That was until I noticed that my legs were constantly painful to the touch and bruised very easily and the bruises would stay visible for longer than what I considered normal. Also being a teen it was frustrating to not be able to find any high leg or ankle boots that I could fit in or a pair that if I could get them on would not press against my skin and hurt.

I visited my GP fairly early on in those days but was told the usual "you are overweight and don't exercise enough" which was strange as at the time I was swimming 3-5 miles per week and worked a s a chef so was constantly on my feet rushing around???

By the time I was 21 I had gone from a size 10 top and 12 bottom to a size 18 top and 20-22 bottom my weight had gone up by 4-5 stone for no real reason. I have always had a relatively healthy diet. I don't gorge myself on tubs of ice cream and chocolate like some of my larger friends did and I maybe ate takeaways once every 2 weeks. I don't eat fried food and eat plenty of fruit and veg. My mum never understood how I was so big and supported me in my constant attempts to get my GP to take me seriously as my legs were "not normal".

The years have ticked by and I have settled at a size 18 but my bottom half is still bigger than my top half and my legs still hurt. Several more visits to my GP and still no response other than diet & exercise!!!!

I had an accident about 3 years ago and I know have a very unsightly bumpy area on my left leg that is a permanent yellowy colour and feels alien but still no advice or help from my GP I was told it was normal bruising (it is still there???).

Then one day I was reading the Daily Mail and there was an article from a lady whose symptons mirrored my own through her life and it wasn't until she had visited a spa on holiday and the therapist had told her he thought she had Lymphedema and that she should speak to her GP when she got home. It then went on to say she had been diagnosed at last and what a relief it was to finally know she had been right all along. I researched the condition online and booked an appointment with my GP and showed her the article and the other information I had gathered and she decided to refer me.

I waited a few months for my appointment but on the first visit the specialist agreed there was something wrong althugh he thought maybe more venous than lymph! He ordered tests to be carried out and in the meantime I was fitted with compression stockings which I would have to wear possibly for the rest of my life.

The tests took a couple of months and when the results were back he confirmed Lymphedema he told me the stockings would be a permanent fixture in my life and said if I needed anything else I could speak to him. I felt this was not enough he hadn't really explained the condition and led me to believe the stockings were the only treatment.

After looking up Lymphedema on the internet I learnt that there were special therapists and massage techniques that could help me. Why wasn't I told this??? I wrote to my GP and asked to be referred to one of these clinics locally which they did. Afew weeks later I received a call from the therapist to tell me that due to my Lyphedema not being caused by cancer the Primary Care trust would not fund treatment so I could only see her as a private patient at £60 per hour!!!! She did however tell me that if I booked an appointment so she could assess me if she felt treatment was necessary she would help me try to obtain funding. So I booked the appointment....

During the initial consultation she asked what symptons and how long amongst other things and as I answered she pulled a strange face.... I asked why she told me she thought I had Lipodema not Lymphedema due to the pain to touch and my feet and toes not swelling. She asked to look at my legs and this confirmed to her that it was indeed Lipodema. Misdiagnosed by a doctor yet again!!! She explained that my "weight" was not my fault ( I cried for a long while) and about the condition in general she also advised me to stay away from dairy products and wheat. She explained about the bandaging therapy and said she would try to get funding for me even though I am not the "worst case" she has seen. The last twenty minutes was MLD massage which I thought "how does that do anything?" it was so gentle. When I showered the next morning it was bliss i could actually touch my legs without feeling pain :D so I grabbed the razor and for once it did not leave my legs hurting for 20 minutes after from the slight pressure! Heaven.........

So that is my story I am finding it hard to come to terms with as I always believed that I would one day slip into a size 12 again and be able to actually wear skirts instead of trousers all the time. This is not to be at least for the near future as we all know there is no cure. She has also told me I need to wear full length compression tights not the knee highs I have been wearing.

I can't honestly tell you how I feel right now, part of me wants to cry and never stop but the optimist in me is still clinging to the future bringing new treatments even a cure? I think I am more worried about the future and how this condition could develop into which might leave me bedridden or in a wheelchair weighing akin to a small whale!!! I don't have children and now I am worried that pregnancy could exacerbate the condition? Still it's chin up and soldier on and hope that the PCT grants me funding to get proper treatment and help as I can't afford it all by myself and I am sure I am not alone!

I apologise if this is longwinded but I am glad you took the time to read my story....

Sarah xxx
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Re: My Story - Sarah

Postby patoco » Mon Jul 06, 2009 8:35 am

Hey Sarah :)

I wanted to send you a super welcome to our forums. I thought I had replied, me dummy....I hadn't . So, I apologize too.

I appreciated you sharing your story and it really makes me angry that it seems so typical for both lymphedema and lipedema. I find it so incredibly hard to understand in this 21st century why these two conditions are such mysteries to the medical world. You would think that with so many of us dealing with it and having it, the docs would finally say "Gee...ya think we ought to learn about this?" :?: :idea:

I was curious, what type of test did the doctors initially do when they diagnosed lymphedema?

Also, did the therapist say anything about the possibility of both? Many many lipedema patients also do have lymphedema.

We have quite a number of members, both here and inthe Yahoo groups from the UK. All the primaries say the same thing about getting treatment. I do wish the LSN would get off their duff and try to work on behalf of lymphers who did not get lymphedema from cancer. Some of us even have cancer (like me) because of the hereditary lymphedema. I've always wondered what the NHS's reasoning is behind their unwillingness to cover lymphedema if it isn't from cancer. :evil: better stop before I get a rolling on my soap box.

If you have any questions, frustrations - anything - just post. Our boards have been reactivated and we are looking forward to everyone's participation.

Remember too - that we're here for you :!: :!: :!:

Pat 8)
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Re: My Story - Sarah

Postby Monica2010 » Tue Nov 02, 2010 3:22 pm

Sarah (((hugs))) I am in awe of how much are stories are alike. I have been about 5-6 years with being told also to loose weight & it will go away or I have just been ignored by my doctors. Finally at the first of 2010 I went BACK to the doctor cause the pain got so bad that I actually started loosing strength in them. I was sent for an MRI, Cat Scan, CT Scan, a sleep study & an echocardiogram to rule everything out. Came back NOTHING wrong. I had to be so forcefull telling them that SOMETHING was not right. My swelling in my lower legs was tighter & the pain was unbearable. Thru research on the internet I asked the doctor about lyphedema. She sent me to a clinic here where I live, they wrapped my leg, the one that is worse swelling & pain wise, it was so bad that she had to take it off then she stated "sorry this treatment is not for you" I asked "where do I go from here?" She said " I would Google it" Google it? I thought? so I did. I found a doctor that is close to me that I TRIED to get a soon appointment with, but could only get 2 months away from the date. LONG story short that DR was a nightmare! I found a therapist in my city that I just finished seeing for $200 per hour for 16 days, my insurance does not cover anything! She is a GOD send! When you wrote that you could shave your legs after treatment tears were rolling down my eyes, cause now I am 'normal' again. :D

I do have lipedema with a slight lyphedema.

I am grateful for this forum so I feel like I can find people to connect with.
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