Lipo(why I have this)edema

Lipo(why I have this)edema

How did I know about my condition?

Growing up, I always had the feeling that my legs look different. Often hurt, bruise easily, and they seemed to be bigger and bigger every single year with a column-like look.

It didn't bother me that much, until 2015 when I noticed the knee area begin to swell and the pain getting more and more severe. It was a sign that I needed to go to a specialist.

Because I have lived in London for several years, I decided to go to the GP first. During the first visits, I heard the opinions that my legs are just thick or were just puppy fat and they would go back to normal, healthy size after a better diet and exercise.

So, I started visiting doctors.

Dermatologists, vascular surgeons, and dieticians. And, guess what? 

For the next year, the doctors advised me to lose weight, and change my exercise and my diet. My comments about the pain that accompanied me all day from the moment I got up from bed and the pain that increased with menstruation and during very warm days were completely ignored.

After a year of perseverance, in 2016, during my next visit, I found my answer.

The newly-learned doctor, after thorough and prolonged observation of my legs, sat down comfortably in the chair. Grabbed the printed results, murmured, threw one more look at my legs and then announced:

Dear Mrs Marta, I do not know why someone sends you back to the USG. It looks like Lipoedema to me.

 “Lipo … what?” I asked. I looked confused

Lipedema, Lópodemia, Lipoedema. Disturbed fat loss. I heard about it recently at the Symposium.  It is also known as a painful fat disorder. It causes excessive fat deposits on the legs

I sighed. “Could you be more specific? What are the cures?”

“I do not know if we have such a specialist in our city, but if you come back to Great Britain, please try to get to St. George’s Hospital – there is the first and the best clinic that deals with Lipoedema. A referral to a lymphoedema clinic will be the best option and that typically involves conventional treatments such as lymphatic drainage reduced pain and compression (garments particularly). All patients with lipoedema or lipoedema symptoms should be referred by their GP to the local lymphoedema clinic.

Hmmm and yet many doctors do not know about this disease. Lipoedema is still dismissed because it doesn’t seem worth paying attention to in the early stages, very often it is confused with being overweight, but, as the condition progresses, it does become very difficult to live with.

After returning home, despite the late hour, I immediately started searching for information about Lipoedema. Unfortunately, it wasn’t a very motivating or educational experience. Very little medical information or solutions were available, but there were a lot of photos. Photos that terrified me.

I stared at those hundreds of photos of legs in disbelief and fear at the same time.

During further searches, I was shocked by how many people and doctors did not know about the existence of this disease, which is often confused with being overweight. Unfortunately, I also dug up the information that such a chronic progressive illness can become painful, depressive, disfiguring and disabling if not treated.

What is Lipoedema?

Lipoedema means ‘fluid in the fat.’ Fat is hardened water and toxins which usually flush out of our lymphatic system- in Lipoedema's case, all the toxins and water are stored in our fat cells.

Women with lipoedema tend to be small on top and big on the bottom.  The legs become enlarged from the ankles up to the hips. Both legs are usually enlarged at the same time. 

There are also cases when lipoedema occurs on both arms. With Lipoedema our legs will tend to have easy bruising, floppy connective tissues around the knee joints, sensitivity to touch, joint pain, and affected skin condition.

It does not seem to respond to losing weight. Feet (or hands) are usually not affected. There is increased leg pain during menstruation.

Yes, it is a long journey – but when we have each other, support and faith, we can reach our goal.

Below this article, you will find a few websites where you can get medical information about Lipoedema; because most GPs don’t have any idea about this disease. You should print out the information given there before you choose to book your appointment.

Trust me! They are very needed.

Helpful websites:

http://www.talklipoedema.org

http://www.talklipoedema.org

http://www.lipoedemaladies.com

http://www.lipoedemaladies.com

http://www.nhs.uk/conditions/lipoedema/Pages/Introduction.aspx

http://www.nhs.uk/conditions/lipoedema/Pages/Introduction.aspx

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