My lymphoedema story so far.. - Jen

Following my treatment for cervical cancer in January 2009,
I was left with lymphoedema in my right leg and groin.
This was something I was unprepared for, and also something that seemed more difficult than it should have been for doctors to diagnose.

I was told by my GP that the swelling wasn't severe enough for a referral to the lymph clinic, and I was told by a doctor at the hospital that I should just be grateful I beat the cancer and was alive.
And I was happy to be alive, of course I was, but that didn't stop me from trying to manage my lymphoedema. On the contrary, being a survivor just makes me want to live and enjoy life to my best ability every day. And a big leg and all that lymphoedema entails is not going to hold me back!

After two years I was finally referred to the lymph clinic, if I had known then, what I know now I would definitely have pushed for it to happen sooner. But having gone through the whole cancer ordeal, I was trying to find my feet again and dealing with a condition that I'd hardly even heard about before was just to much to take in at that time.

At my first appointment at the lymph clinic my leg was measured and it turned out that I had an extra 1.6 litres in my right leg compared to my left. That is almost like strapping a big bottle of fizzy pop to your leg. No wonder my back had been aching..
My consultant was very helpful, she booked me in for MLD, manual lymph drainage, and ordered me compression tights. She also told me  how to manage my affected limb, the importance of skin care etc. It might sound like it would be quite straight forward to manage this condition. However that is not the case as I soon found out.

I suffer from recurrent cellulitis, an infection of the deeper layers of the skin, usually caused by the bacteria streptococci or staphylococcus aureus. This is common to people with lymphoedema.

The causes of cellulitis can include:

• Insect or animal bites
• Fungal infections
• Sunburn
• Cuts or grazes
• Cracked dry skin
• Overheating the affected area (saunas, hot tubs, steam rooms, sun bathing)
• Weakened immune system 

Symptoms can include:

• Pain and tenderness to the affected area
• Warmth
• Redness and inflammation
• Muscle aches
• Vomiting
• Fever
• Fatigue

Things you can do to avoid an infection:

• Use an insect repellent lotion. I add a couple of drops of essential oils that I know the little bugs don't like to my moisturiser. My favourites are tea tree oil, lavender and lemon. But only add a little as you don't want to irritate the skin.
• Treat any fungal infections.
• Use a high factor sun screen.
• Don't walk barefoot (if you have lymphoedema in your lower body)
• Make sure to strengthen your immune system. Get plenty of sleep, eat a healthy balanced diet and find an exercise that suits you. Swimming and rebounding are usually good exercise for people with lymphoedema.
• Good skin care. Dry brush your skin and moisturise, moisturise, moisturise! But avoid perfumed lotions and creams as they can have a drying effect on the skin.

So if I know all this, how come I keep on getting cellulitis?
Well, I am hoping that I might have found the reason but it's still early days so I'm not putting my party hat on just yet.

However, after trying to get on top of a systemic yeast infection (Candida) for years, due to all the antibiotics I had been taking because of the cellulitis. (Cellulitis-antibiotics-candida-cellulitis-antibiotic-candida..you see the pattern.) I finally realised after doing some research myself, that my doctor hadn't given me a strong enough dose of antifungals. I had been on 50mg for two weeks, which is not nearly enough. After speaking to my doctor, I took 200mg of Fluconazole on the first day, and then 100mg for a month. This made a difference straight away!

I did try to go about it the natural way first, using coconut oil, oregano oil, garlic etc. And I still use that approach, but hopefully I'll be able to get on top of it now, attacking the fungus from all directions (although not overdoing it as this apparently can make them more resilient).
My plan is to use both the antifungals (Fluconazole) and the natural approach to start with, and then just continue with the natural remedies plus a low sugar and carb diet. I'll let you know how I get on.
I will write a post about how diet can help you manage your lymphoedema in a later post.

This is glimpse into my lymphoedema story, and not a professional opinion.

Please feel free to take part in this post by adding your comments. I'd love to hear your story too.

Love Jen xx