Saturday, 20 September 2014

Patience is a virtue when ……

#PCOS, #lipedema, #lyphmedema, #fluid retention,

The past 6 years I’ve had some health issues and so like a good patient I visited numerous GP’s and clinicians (cardiologists, gynecologists en endocrinologists. On hindsight I realize that because of my resilience I’m able to accept my predicament. Because of my health I’ve learned to become patience. 

Two weeks ago I finally got my diagnosis and all falls into place. What angers me is that I told both the GP I had 8 years ago as the new GP I got 2 years later that I suspected that all my symptoms were most like due to my PCOS (Polycystic Ovary Syndrome). I’m posting my story to make ‘others’ more aware, what kind of symptoms people with PCOS can develop. The second reason, is to make the medical profession more alert, because once people with PCOS start to gain weight and develop edema, there is no turning back and tackle the problem. It can’t be treated, only controlled.

I have dealt with the diagnosis PCOS since my 16th. At that time it was most commonly known as Stein-Leventhal syndrome. It is amazing to realize that in the past 34 years the medical profession has gained any more insight in the cause and only by trial and error they are finding treatments to control the situation. But nothing has been developed to treat it.

My complaints started with a shortness of breath with even the slightest effort and an elevated heart arrhythmia about 8 years ago.  The GP referred me to the cardiologist. Nothing was found except high blood pressure. As the GP wasn’t very sympathetic to my story I got myself a new GP. I have to say, the medical professional should really focus more on learning to listen. Around 2008 I developed edema and so I was referred to the endocrinologist. Got some pills for the retention and high blood pressure. 2009 was a bad year. Living on diuretics is a wonderful experience. You all of a sudden notice that we, in the Netherlands, hardly have any public toilets and let me not start on Belgium. How many times I found myself in a situation that the only way I could pee was to sit between two open car doors and hope nobody stopped to see what was going on, were quite a few. These situations can’t be good for your blood pressure either. I’m sure some of you know how it feels to have a full bladder. I learned to plan my trips around the availability of toilets. Besides the diuretics, I naturally went on a low-salt diet. I thought I cooked health but learned that most products we use to make a nice meal have lots of added salt. During that year I tried many different diuretics. My shortness of breath became more bothersome and again I went to a cardiologist – I slowly started to fear I might be experiencing early onset of heart failure. But lucky me, nothing heart related was found. According to my new GP my complaints were more stress related, which considering that around that time the company I worked for went bankrupt was very passable. I started to believe it myself that I didn’t feel good because I was very unhappy. As some of you know I didn’t handle the dismissal very well and found it pretty hard to reinvent my career. On hindsight I’ve learned that when GP’s don’t understand the problem, than it must be psychosomatic due to stress.

My gynecologist thought I was onto a thing here (that it might be because of the PCOS) and advised me to go a endocrinologist again. A different one to the previous one. As my BMI was high and I was unable to lose weight thyroid function and blood sugar levels tests were done. Naturally he also checked specific hormones and found nothing unusual. At that time the shortness of breath and fast arrhythmia started to bother me again and so he referred me to a cardiologist. And – it is starting to become a pattern – this cardiologist couldn’t find anything either that was cardiac related.

It is about 2012 now and my complaints didn’t go away. The retention of fluids in my legs and around my throat became increasingly bothersome so that my GP referred me to a physiotherapist for manual lymphatic drainage massage. Amazingly, that really worked. For the first time in a long time I didn’t feel as I was exploding out of my own body. My ankles, which by now were normally bulging, were normal again. That my feet looked as small and neat as ever, never trigged any of the clinicians to look further.

My shortness of breath and fast arrhythmia however didn’t go away. So I started with an medical exercise program. After 4 months I had gained weight and my endurance decreased. I was even more out of breath than previous to the program. All measurements were registered and passed onto my GP. This was still not a trigger for the GP, to realize that my lymphatic system was not working properly and lot of damage had taken place.

According to my GP my reasoning was incorrect. The PCOS could not be the reason for my complaints. I was made to feel a fool as if I was imagining my symptoms. Bedside manners of the medical profession when faced with a problem they can solve is downright rude and un-empathetic. Being a patient I’ve learned makes you patience.  

Two months ago, a friend who is also a nurse, said she thought I might have lipedema. She had treated a lot of patients that had the same physical appearance as I do. I also had a small wound that wouldn’t heal, which was one of the main reasons these patients get referred to her. People with lipedema have edema in the lower extremities and arms, however feet and hands are spared. 

My search confirmed my suspicions and this time I decided to write to my GP and ask for a referral to an endocrinologist who had specialized himself in the area of hormonal imbalance. My GP was not happy with me, you don’t write letters and she didn’t understand why I wanted a referral or diagnosis. I have to admit this thought popped up – lady, if you can’t understand this you shouldn’t have become a doctor. Doctors of today have been trained to treat sadly they don’t grasp the concept of healing. One definition: the act or process in which the normal structural and functional characteristics of health are restored to diseased, dysfunctional, or damaged tissues, organs, or systems of the body. Another definition: the process of making (someone or something) healthy or well again.

Well last Friday I finally met an specialist that was empathic and confirmed my suspicions and explained their causes. Sadly, he also gave me some bad news. My predicament is that I will face one more major hormonal change - as I still have to go through menopause – and this will effect my health and wellbeing futher. 

So what is wrong with me? I have PCOS and most likely also have primary lymphedema. Both have an genetic element. My body wastes aren’t being flushed effectively from my body. This has been going on for years and now has also effected my vascular system especially in the legs. My fat metabolism has also been affected. My situation is not reversible, there is no cure, it can only be controlled. I can try to slow down the process. Worse case scenario, according to the endocrinologist, is that I become extreme obese and wheelchair bond. Lets hope this won’t happen anytime soon. Well I’m sorry to say I but by now had tears  running down my face. It is hard to process this information. Dieting and exercise will not improve my situation. I have to accept my weight and loss of stamina. I have to accept that I will be a little out of breath after light labor. I also have to accept my hearth arrhythmia will sometimes be fast because my potassium is too low as my electrolytes metabolism is damaged due to the strain of having a dysfunctional lymphatic system and using diuretics. I have to accept the fat deposits on hips, thighs, and upper arms. I have to accept that my legs and arms are  sensitive to pressure, are painful and tend to “bruise” easily.

Lipedema particularly occurs after puberty, fertility treatment, pregnancy (and outside uterine tubal pregnancy) and during the menopause. In the case of lipedema, water retention in the tissue may also occur. Lucky me! That has happened to me! This retention can lead to feelings of tension and pressure pain in the areas affected. Since two years I wear retention stockings (not all the time). They do really help, just like the manual lymphatic drainage massage.

From a diagnostic point of view – the endocrinologist – can’t determine whether I had lymphedema or PCOS first. And from there on, due to aging, my vascular system was affected and I developed lipedema. From a patient perspective I’m happy I have clarity. Now I only need to try and control it.   

Why this post? I want to create awareness. I hope doctors and clinicians will improve their diagnostic skills. If I was diagnosed 15 years ago, the process would have been slowed at an earlier stage and I would have less issues with my health and weight.

I also want to create a sense of understanding for my readers and friends. To live in an era where everyone believes that diet and exercise will improve your health and only you are to blame if you are obese, is very difficult. Diet and exercise doesn't always work. More about that another time.

To end this post on a positive note – I’m feeling great, I’m happy, I love my work, I love my life and don’t laugh, I love my daily walks. Live can’t get any better than this!


Ineke van den Akker said...

Goed zo Helen. Geweldig dat je het van je hebt afgeschreven. Je verdriet moet je lijf uit!
veel liefs,

suz said...

Thank you for sharing this Helen! I think we are all "trained" not to question doctors. After caring for my Mom who was not properly diagnosed (for something entirely different), I started questioning and demanding better answers. Doctors don't particularly like me, but I don't go to them to be friends, I go to them to take care of my medical issues. Actually, you've helped me make a decision I've been dwelling on lately. I'm glad you can see the positive side of your life. Thank you for sharing this with us.