The wrong path of lipedema diagnosis

Hello everyone,
Well, here I am after a long back and forth about whether I should try a blog to tell you my story. After dear Caroline gave me a lot of courage, it starts now.

Anyone who knows me actually knows that I'm more of a narrator than a writer. I'm curious how it feels and, above all, how it goes down with you.

I'm Dagmar Scholling, called Daggi, I'm 51 years old and come from Kassel. I have been married for the second time since April 2019. I have a son, Jan, he is 23 and lives in Nieste near Kassel with his girlfriend Charly. Since August 2018 I have been leading the self-help group for people with lip and lymphedema, Lily-Belles Nordhessen. We meet once a month in Fritzlar and Kassel.

A troublesome way to diagnose lipedema

My diagnosis is stage 3 lip-lymphedema of the legs and stage 2 lipedema of the arms. However, until this diagnosis was made, I had had a long journey of suffering. My leg problems started in my early twenties. My legs changed, increased in size and, in parallel, gained weight. I spent the next few years up to the beginning of my pregnancy at the age of 20 with various diets and nutritional changes. Yes, up to a certain limit of 27–5 kg I also lost weight every time, but my legs remained unchanged.

After the pregnancy, my legs exploded very clearly and excessively, which I had not known before. There was also pain. Pain that tears you apart with every step, especially when climbing stairs.

The legs were heavy, and at regular intervals I felt like I was burning inside my legs.

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One diet after another

Various doctors advised me to lose weight. So again and again into diets and nutritional changes. With the same result as before pregnancy. My great passion, playing handball, became more and more difficult for me.

I was then at the point where looks and comments from those around me were psychologically stressed.

In 2008 I took a mother-and-child cure at the lake with my then 12-year-old son. A doctor there, when I was hoping that someone there might have an explanation for my problems and a solution, gave me the lipedema diagnosis Elephant legs to the head. No explanation, no recommendation. After a tearful night I was sure that if I lose weight it will all go away.

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Something was wrong with my legs

On December 28.12.2009, XNUMX I came to the hospital with a deep vein thrombosis and a bilateral pulmonary embolism. I would not have survived another night at home. The next day, while I was still in intensive care, the attending physician wanted me to stop smoking. I - as a non-smoker. It took two days before he finally believed me that I didn't smoke. But this same doctor also said that something was wrong with my legs. He ordered an employee of a medical supply store to come to my bed, who measured my legs and a few days later another employee brought me compression tights. "Here, you have to wear these regularly now," and he was gone. Of course, I didn't even get them because it was also the wrong supply with a circular knit supply.

The first rehab

In April 2010 she went to rehabilitation due to the embolism. I came to the Wetterau Clinic in Bad Nauheim. My first thought was then

“Bad Nauheim, what do I want there?
I thought I was coming to the sea. "

But for me this rehab should be a complete start into a new life and an answer to my years of suffering with those thick, aching legs. Because the clinic is the nurse clinic of the lymphological Taunus Clinic in the same city. One of my therapists had made an appointment after taking a first look at my legs. The doctor there, Dr. Netopil, one look at my legs was enough. She tried so that I could continue my rehab in her clinic. Unfortunately, that didn't work because of the lack of beds, but at the end of this rehabilitation measure I was provided with proper compression stockings by the Taunus Clinic and everything was done so that I was also provided with manual lymphatic drainage here at home.

What this lipedema diagnosis meant, however, I learned another year later in a new one Rehab, this time in the Taunus Klinik, Bad Nauheim. Even so, it was still difficult to understand that it was an illness and that it was not my fault.

The big decision

In 2012 I decided to start surgical therapy. At this point I had strong attacks and the pain I can hardly bear. The daily ration of painkillers has long been part of my diet. Besides my job, I was barely able to cope with my everyday life. I came across a friend dr Ryssel in Mannheim, he supported me with the application to the health insurance company. At that time I felt very comfortable with him during the consultation. He should be my surgeon. The health insurance of course refused and also the objection. So it went into the lawsuit before the social court.

In autumn 2013, a few months after my second rehab in the Taunusklinik Bad Nauheim, I noticed changes in my upper arms. Not only visually - there were still a few sunny autumn days and the T-shirts from the summer were suddenly too tight on the upper arms. In addition, everyday things such as B. Blow-drying hair or making phone calls is becoming increasingly unbearable.

My application was before the social court. I've cried for days and suffered and cried even more. My parents suffered with me. One evening my phone rang.

It was my father's turn: “Child, the family council met. Make an appointment with Dr. Ryssel. We can no longer bear how you suffer. We finance the ops. "

I couldn't believe it, we cried on the phone together. I said, "Dad, I can't accept that." "Yes, you are our only daughter." With a laugh he added, "Of course, your inheritance goes away."

By the way, my lawsuit was dismissed in July 2015 before the Regional Social Court of Darmstadt without my being there personally.

I think, while reading my story, a few of you recognized each other in some phases. In a next blog I will be happy to tell you about my first ops and how it came about that I finally have to pay my health insurance for all ops that are still necessary. And also like more of me. I'm looking forward to it 🙂

Your Daggi