Hi from a newbie.

[VeronicaBell]

Hey Everyone,

I have Lymphedema in both legs, something which I have had for some time but the doctors, kept on telling me it was just swelling and take pills for the water retention which never worked.

After 3 years they decided to send me to an specialist to look into this further. They arrange for me to have a bio on my legs and advised they had to get funding if I did have Lymphedema to be treated.

After waiting two weeks, I had the bio on my leg, they cut into one of the lumps on my right leg. Had a few stitches which was removed seven days later.

I had to wait six weeks for the results which arrived just before Christmas. When the letter arrived they advise me that everything was clear, but I had Lymphedema in my legs and to attend hospital for treatment. I just broke down in tears because I finally found out my condition, but was also scared of the future.

Into the New Year and my treatment started, attending hospital, three times a week for five weeks, to have tight bandages wrapped around both legs to reduce the swelling. I had to keep on working, because of my bills and also I needed the money to drive to hospital, which was about 40 mins away from me and pay for parking there. Yes, I still manage to drive wearing the double layer bandages...lol I got very tired but knew I had to keep on going. I must say they kept my legs warm doing the snow.

After the bandage treatment, I was being measured weekly to see the improvement on the swelling reducing. On my last week I was measured for compression stocking, which took a couple of weeks to arrive. I had one week without the bandages to rest my legs before going back to the hospital to try the stockings out.

I now wear compression stockings every day, and still do a 9am - 5:30pm working job. I refuse to let Lymphedema stop me for doing the things I like doing.

Going back to the hospital again on Monday to try a different supplier of the compression stockings. If everything goes well, then I will have one trip again in six months, then one trip every year to monitor my condition, and change stockings if I need to go down a size.

I am also on a long course of penicillin, which they now suggest taking for 2 years, my poor stomach hates them but I have to take them to make sure my legs are safe from trouble.

All in all I am getting better but it is a life time illness which I will never lose.

If anyone is going through the same treatment, I can advise do not worry, you can do it and it works.

I am so glad there is 3 lovely nurses who have had the training for Lymphedema treatment at the wound clinic at the hospital, without them I would not see the improvement in my legs.

[Christo]

Hi VeronicaBell

Thanks for sharing your story with the site.

It certainly does require patience and persistence to come to terms with this lifelong condition. Congratulations for keeping your resolve to see things through. Giving in and self pity is surely not an option - lol!

Those of us who are eventually diagnosed are the lucky ones - and even luckier to get treatment to help us manage and maintain our lympho limbs.

It is scandalous that in this day and age there are still medical practitioners who are ignorant of the condition and even deny its existence or try to obfuscate in order to cover their lack of knowledge.

Keep strong and we will all help each other!

Cheers

Christo.

[Ginsing]

welcome veronica

Glad you found the site it is most helpful and full of great people who are fellow sufferers! I am only pn week 5 but it has proven most useful you are further along the process well done. We dont have a choice just to stick with it and remain optomistic xgins

[Hidden]

welcome Veronica...good for you that you are getting the treatment you need for lymphoedema...

I too had to wait a few years before they figured why my legs swelled...um since 2007 or I really can't remember when it first showed ...but now I am managing just fine with the helpof my Lymphoedema therapist

[peterwhitecrier]

You are fortunate to have a local hospital with 3 nurses trained in lymphoedema treatment! Also glad to hear you are off diuretics. I stuck to them for 25 years until those nice people at LSN told me I was wasting my time!

[ninewells]

Hi Veronicabell, I have to ditto all of the above, I myself only joined the site in the last Month but having suffered the condition for a very long period of time i am well use to the good days and Bad, but as everyone says keep smiling no other way to handle it..

I have made some many contacts from this site alone and we have thrown around so many helpful tips with each other, its a link now i really don't want to loose.

So happy that you have such a wonderful attitude with life, I myself keep getting asked how do you cope, how can you keep smiling, you spend more time in hospital than anything else. Well life is to short to complain, I still have my limbs, all be painful and i still have an active brain, some are not so fortunate, so why would i give up on life. That's my little saying when downers have a go.

Like yourself i to also have an amazing Lymph clinic with a wonderful Team of staff that support every part of my care. I do believe i am very luck to have found them, Its a shame my old GP didn't believe me 10 years ago when i had been given their details originally, if he had i may have been 10 years further along with my treatment. No matter its working for me now and no looking back on the what if's i say..

Keep chatting and stay with the group i am sure we will all meet up at some point if we ever get the chance.

Can i ask why did the Hospital Take a Biop from you? Cutting your skin could have caused you so much more problems.. I am just so glad that your leg has gone on to recover and now being trouble free. Sounds like your own Clinic need some more training on your Condition. Good luck for the future.

How brave are you driving with all that Bandaging on, wow. I couldn't bend my knees to get in the front seat of my car let alone drive it. But like yourself , now that i am in my Compression stocking driving is not a problem at all. Have to agree about the snow hehe.

take Care, Keep posting.

Ninewells

[VeronicaBell]

Thank you everyone for your comments above.

Ninewells, I have found this site helps alot too. They took a biop from my legs on one of the lumps which they cut away to check to see what was going on with my legs. I was told that my leg would leak but should heal and it did. I pushed my seat back and they made sure my knees could bend when the wrapped me. I told they I had to drive. lol

Take care,

Veronica

[galtyboi]

Hi,I have lymphedema so i have been told by my gp ,but i haven't started any treatment yet.i hav serious swelling in both legs and feet,which makes it very awkward to get shoes to fit and also i have to wear tracksuit bottoms instead of trousers as they stretch more and have wider legs.I have an appointment with my doctor in a weeks time and i am going to insist on seen somebody who specialise with the problem.I have looked up many sites on the internet and i can assure you i now know more about it than my gp does.you have been a great inspiration to me with your letter on here and i now know there is light at the end of the tunnell ,and by bandaging and compression stockings i may be able to wear shoes normally again and even get to wear a trousers again for a change .It was great reading and thankyou for letting us know that life is better for you now ,i am happy for you .

Galtyboi