Leg Ulcer Treatment Advice Needed?

Skin, nail and hair health
1

Hi 

I was wondering if anyone could offer any advice or suggestions. 

I am 36 years old female and have suffered from a non healing venous leg ulcer for just over 5 years now and have attended leg ulcer clinic twice a week ever since.  It started as a small scratch on the front of my left leg after hurting it on a bike pedal.  I seen to have had a bad reaction to everything which has touched my leg including double base with exception of the inadine dressings.

I have been previously treated using the 2 layer and 4 layer compression bandaging and inadine dressings, which was changed on 8th November 2013 to Juxta Cure Compression Wrap (which I personally prefer) by the Vascular Nurse along with Alginate Dressings and ended in my leg being infected for 5 months as nurses kept saying my leg didnt look clinically infected and refused to swab it, this resulted in me being unable to stand or walk for 8 months (can stand and walk for about an hour now but still in some pain) due to the burning and stinging and the amount of pain I was in.

Over the last 3 months I have been back on the inadine dressings, infection free and finally seen a little improvement each week.  Last tuesday (5th Aug 2014) I attended the ulcer clinic as normal but seen another nurse which was covering staff holidays and who hasnt been back in clinic since decided I didnt need the inadine dressings and prescribed Prontosan Gel (I am already using Prontosan Would Irritation Solution).

At the time I explained my concern to changing from Inadine dressings to the prontosan gel as I have previously had a bad reaction to nearly everything else that they have tried including the Inadine powder (cant remember exact name off top of my head sorry) which I was assured I wouldnt have a reaction to as I was ok with Inadine dressings.  I was reasured that I wouldnt have a reaction and it would be ok.  

The prontosan gel has been on my leg 7 days (changed on Tuesdays and Fridays) and my ulcer is already shown signs of infection (waiting on swab results), however they still insisted on keeping me on the gel yestarday and my concerns were once again brushed under the table. The ulcer itself was looking quite healthy and better than it had ever been while on the inadine dressings, yestarday it looks darker than its been for the last few weeks, and the area around the ulcer is now white and looks thicker (not sure if this has an exact name).   

I was under a new consultant at the hospital who booked me in for a deep vain scan which came back clear (I had waited for the scan for 4 months before finding out the old consultant hadnt even booked it).  He was happy for me to continue with the compression and discharged me.  The nurses have tried to referred me back to the hospital consultant again but there has been no follow up from my GP surgery on this and no one can tell me why just that they will look into it. 

I am not sure what to do next. I have tried raise my concerns regarding my treatment etc with both the district nursing team at the clinc and my GP but dont seem to get anywhere.

Also I am worred that having my leg washed in a plastic bucket filled with tap water wont be helping my leg, sometimes when my ulcer has been bleeding they water obviously becomes discoloured due to the blood and the nurses use this same water to wash my leg including the ulcer.  Both hands although they do use gloves are in the water then touching my leg, the clean swabs, cream etc, doesnt that spread infections especially if when my leg is already infected?  

I have got to the point now I just dont know what to do, not only is it affecting myself but also my husband with having to take time off work to look after our 4 children doing school runs etc.

Sorry my post is so long and thank you for taking the time to read it, I would really appreciate any advice or to hear from anyone else in who has been through the same thing.  

Thanks 

2

Hi TT

5 years is a long time to suffer this condition. i have had a venous ulcer on my right ankle for a year now following a small knock on a table so i know a bit about what you are going through. it is a battle to find suitable dessings but i have found advancis manuka dressings as an excellent way of keeping away infection which has helped the healing. it also doesnt hurt as much as inadine! i am only 47 with young family and busy job so lifestyle to allow time to put my foot up as much as i should and i actually just change the dressing myself as i dont have time to see a nurse twice a week, but it is improving with the manuka so worth a shot.  

thanks 

3

Hi Twinkle toes,

                        I had the same problem. Ive had a leg ulcear for over 12yrs now. the nurses said all they could do for me was dress it with 3layer compression and see how things go. They tried everything from inadine to prontosan gel. Nothing was working eventally they tried ICHTHOPASTE (white visapaste) which heal it completely. Then i ended up with a dvt and its come back with revenge. Now they are going though everything again. Hope your leg gets better

4

Thank you for your replies.  

I am now back on inadine dressings again and have another infection which I told the nurse would happen.  The pain is still there and im still taking, paracetomol, iburophen and dihydrocodeine aswell as the antibiotics, but they dont seem to have much effect unless i have my leg in the air constantly. 

After asking about a doppler as I havent had one for nearly a year now (only had 4 dopplers in last 5 yrs), to be told I should be having them done every 3 months, so I am now booked in next month (october 2014).  

Most of the nurses are still not trained or seen the Juxta Cures Compression Wrap (which I have been on for nearly a year now instead of the bandages) and dont know how it works, so I have to show them even through I am not trained and not medically qualified.

There has also been a couple of isses hygeine, with a nurse last week when the nurse was putting on her gloves on and she dropped on the floor, picked it up, put it on and was about to touch my leg, until i pointed out  it being on the floor.   There was also a incident a couple of months ago where a different nurse dropped a inadine dressing on the floor after taking it out the sealed packet and picked it up and was about to put it on my ulcer until i pointed out it had been on floor and was no longer sterile.  This shouldnt be happening and as a trained nurse this is basic practice as well as common sence.

Tbh I just feel like I am being passed from one pillar to another and back again and not getting anywhere.  

5

Hi thanks for your reply.

 I have tried the advancis manuka  unfortunatly I had a bad reaction to it, like everything else.  I dont have any pain, stinging or anything from the inadine dressings, the pain is just below the ulcer at my ankle and inside of my left leg.    

I hope your ulcer continues to improve and hopefully fully heals quickly. 

Thanks

6

Hi thanks for your reply.

I have tried everything, including Ichthopaste which again I was allegic to, I have a A4 sheet of paper in front of my notes which is covered from top to bottom and back to front with lists of things i cant use.  Im back on inadine dressings again which seem to help very slowly but does work for me and the more layers of inadine dressings on at the same time the better, although due to costs some nurses are reluctant to put more than 2 dressings (1 layer) on at one time. 

I hope you have better luck than me and you find something soon that works for you and heals it once and for all.  

Thanks x 

7

Hi Twinkle Toes,

I would like to particularly draw the attention of those who are suffering from long-time persistent skin problems, such as wounds. Over the years I suggested the Arquebuse Water with 75 herbs to countless of friends, whose families had these kind of problems. In many cases the wounds recovered fully, epithelization occurred. It was simply indescribable the gratitude what I got. The most recent case, I suggested to my dermatologist friend to buy the Arquebuse Water with 75 herbs to her husband who had an ulcerated hole in the sole. For several years he had an unhealed wound about 2 cm deep and 5 cm in diameter. My friend works as a dermatologist in a clinic in Budapest, but she could not help her husband. She started to use the herbal essence. The full epithelization took four full months. Dermatologist colleagues came over from other institutes to look at the incredible results. My dermatologist friend happily called the Swiss producer and reported the miracle that happened to her husband. It was a beautiful day for everyone!

Hope your legs get better !

 

8

I just wanted to reach out to you Twinkle Toes. I am heading for my  fourth year of exceedingly painful ulcers on my lower legs - which I am sure many of the so called "entirely neutral gentle products" would "work wonders" some of whom (particularly the Manuka Honey) burnt my skin so badly you could trace where the edge had sat on my open skin for months after.

Currently I am doing Lymphoedema treatment with help from Tissue Viablity & they have begun bleeding bright red good blood - but do you think anyone can advise me if this is good or right ?? Please feel free to be in touch - I have been thinking painful ulcer sufferers should get together on FB or the like.

I am interested in knowing more about the pain others are suffering with their leg ulcers because I simply cannot cope with the pain any longer, it is beyond tolerable!!

9

Thank you for your message. 

Sorry to hear you are also suffering from Painful Ulcers.  I know only too well how you must be feeling after spending the last year in complete agony and unable to walk or stand due to the pain. 

As for bleeding bright red blood, I have had this alot over the last 5 years and always been told that it is normal, but please check with your own nursing team or consultant as I have found from experience each person will tell me something different.

I have been thinking the same regarding the facebook page and was thinking of maybe setting up a page we can all have a chat, moan/rant and hopefully offer some help to others in the same situation.

Dont be afraid to keep pestering your doctor for pain relief until you find something that works for you.  I have been on Paracetomol and Iburopen for over a year (every day) now and have tried all varieties or codein and have just finished a course of Oramorph (oral morphine) which was brilliant for me took pain away almost straight away. Unfortunely I cannot have Tramodol, but I have heard it can also be good for pain if you can take it.  But please do see your doctor even if it means going back or phoning every day.  

Please keep me updated on your progress and hope your pain eases very soon.  

10

UPDATE -  Dec 2014

Just a quick update.  

I am now under a new hospital, consultant and vascular nursing team.  I have had a Vein Scan and Artery Scan yestarday.  Although I still have to wait for the official results in a couple of weeks, they have found a problem with one of my smaller veins which isnt working properly. The long term plan is to treat my ulcer inside out and the results confirm the operation will probably now go ahead one way or another, which to be honest I expected anyway. 

On the plus size my smaller ulcer has nearly healed (first time shown any improvement) and my larger (original) ulcer has halfed in size and improving since I was put back in the 2 layer compression bandages 4 weeks ago.   

I now have to wait for another appointment at hospital again and take it from there.  Hopefully now I will finally get somewhere.  

Thank you to everyone who has replied to my post, it really does mean alot to hear from others who are suffering from ulcers or knows someone who has.

 

11

Hi, am new at using this site. I've read some of the pain you guys are going thorough

I hope you get well soon.

I was just looking on leg ulcers to get information, as I have been suffering from this pain since end of July 2016. I haven't had any joy from my GPS

12

Dear Frances

Since your recommendation, I have bought some Arquebuse Water with 75 herbs. I was wondering when you spray it on the ulcer does it sting? Also, do you apply a bandage? if so, what is the dressing that you use?

Regards

Sandra

13

Hi I am new here but I was interested in your comments as my husband is going through a similar situation.

Due to being an auxiliary nurse (retired) the surgery has left the dressing if the wound to me. My husband's leg started due to a blister as he suffers with cellulitis and is taking 80g diuretic tablets per day. The Dr in his wisdom tore the skin off the blister thus leaving an open wound. This was 4 weeks ago and he is now in considerable pain and taking double dosage of antibiotics (500 gms) .

The wound seems to be getting bigger and I was instructed to change dressings twice a day cleansing with water and given an antibiotic cream. This seems to make the wound stinging so now leaving off the cream to see if this helps. He is due to have doppler test in a couple of days. I suggested to the practice nurse that maybe compression would be an advantage so we will see. Hope you're improving now. Regards

14

Hello to yo ALL, I'm sorry to hear alot of you are still suffering with leg ulcers.  I've had mine 2 and 1/2 years now.  I go too my local health centre three times a week to have them dressed.  One of my legs are almost healed but the other leg has a huge big ulcer on it.

The nurses use Cutimed on them which is a sort of green clothy square they put over the wound, then they put a pad on over the top of it, then wrap two K Soft's , followed by I think it's a 2 wrap compression.  The nurses have just ordered my some gel (apparently it costs £8 a bottle) but it works very well on my bad leg.  My trouble is that I have Pseudemons infection that sits on the top of my skin and won't go.  Pain wise I am on Zomorroph (Morphine capsules) plus Zapain.  That keeps most of the pain at bay although I do get quite a few twinges.

Anyway good luck to you all.

15

I was so sad to read your report. I am 71 and struggling and cannnot start to image how you must be feeling with young children to look after. I have had my ulcer ( on the left side of my ankle)for 6 months and last week, after a few days of severe pain, developed another one just at the back of my heal. I am really fed up so feel for you so much.Hope to goodness they help you soon with the right treatment. There are so many trials going on around the world that you would think by now they would come up with a cure!. x

16

UPDATE: Feb 2017

First of all just wanted to appologise for not replying to all the messages.  I forgot all about this post.  

Well 7 (nearly 8) years now I have had the leg ulcers (2 one one leg) and now another one on my other leg (new this week).  

I am now in full leg lymphedema compression bandaging on my left leg (i dont have lymphedema) for over a year now with Actilite Honey Dressings on each ulcer and all pain has stopped, I have gone from having infections nearly every week to only one infection in the last year. I also have a full leg compression stocking for my right leg, but to be honest due to it slipping down every time I move, I dont think its doing anything good for my leg as I cant even walk around the house without it slipping quite a bit.  

For the last year I have been under the care of the Vascular Nurse where as previously the Ulcer Clinic was run by District Nurses and was seeing different nurses every time I went (twice a week).  Over the last few months they have tried various stocking which ends up in the ulcers getting worse but as soon as they put me back in the bandaging it starts improving again.  

I am now under my 4th Consultant at the Hospital where I was told I need to have laser surgery on a vein but there is only a 50/50 chance of it having any effect on the actual ulcer.  This is the same surgery I was told a few years ago didnt exist after waiting 6 months for it, so Im not holding much hope on this one going ahead, again its just a waiting game.  

My ulcers were measured again last week and are measuring 5cm x 4cm (main ulcer I have had for 7 (nearly 8) years and 5cm x 3.5cm (second ulcer i have had for 1.5 years). 

I am still attending the Ulcer Clinic twice a week as my ulcers get worse if left a week. I are still waiting to find out if the other leg is going to go into an ulcer or not. Its currently has a NA Ultra on with the compression stocking and is being monitored by the vascular nurse.  

Its got to the point now I dont believe my ulcers will ever heal fully and that I will more than likely be in compression bandaging the rest of my life (im nearly 39 now).  The kids have been amazing over the years and my daughter doesnt remember me without the banagaing on my leg as she was only a year old at the time so just see's it as being part of me.  

I really do feel for others who are suffering with leg ulcers, and really wish more was done to help with the suffering we all have to go though each day because of leg ulcers.  

Thanks again to everyone who has replied.  

 

17

    lower leg ulcer on right leg  attending the local hospital wound clinic   having it treated and strapped for over 6 months.       i was told due to varicose veins it was going to take a long time to heal

i have osteoarthritis in the knee of same leg   and  because the ulcer not healing prevented me from knee replacement

the pain from the ulcer  was severe and the nurses said the pain would be better once the ulcer was healed

finally they told me the ulcer was ok  but the pain is still there worse 

the pain all around where the ulcer was and in the bone to the ankle

i now have to walk with a cane

i 

tried so many pain  medications 

the doctor keeps prescribing me the same ones

what i want to know is why the pain is along the bone  or if it is nerve pain?  

 

18

Hobo have had a venous ulcer for 9 months now nowhere near as long as urs!!!! I am inland out of hospital with infection it bleed out 2 lit red last week I had to have a blood transfusion,if my partner wasn't there tie a belt round top of my leg to stop the blood I probs would of died,I also have 4 kids they are fed up of it the pain right now is intense and like that all the time.I have even felt suadiodal at times.I've had honey on which burns badly,I've had this green gel one on which stuck to my ulcer and had to put it in water to get of.i previously have been seeing about 4-5 different district nurses that it different droughts on a one.im now seeing the vascular nurse once a week and the same nurse once a week  with 2 layer coban on and this reds tough painted all around my ulcers.i have a appointment with the vascular consultant.im on pregabalin for the pain which does naff all.im seriously in so much pain I don’t no what to do.i hope  urs gets better soon x

19

Hi Jean

Im so sorry you are suffering with the pain.  From my own experience I am lead to believe that the majority of the pain is caused by the nerve endings being exposed which can cause severe pain and also painful burning sensation.  

You said about Varicose Veins and ulcers taking long time to heal.  The length of time it takes can vary depending on how bad the Varicose Veins are.  I had Lazer Surgery (May 2017) as my Varicose Vein in that leg was really bad, at that point I had the ulcer 8 years, now 5 months on and I still have the ulcer but its smaller than its ever been and is finally healing slowly.  However, until 3 weeks ago I had an other ulcer on my right leg for 7 months, again I have a varicose vein in that leg also but the damage to that vein isn't as bad and the ulcer finally healed without the laser surgery (although I am currently on the waiting list). 

Do you attend a Ulcer Clinic or GP Surgery to have dressings changed, If so make sure you request they wash your leg especially the ulcer area properly.  My Ulcer Clinic were told to stop washing legs for health and hygiene reasons and just to wipe them over with what looks like a very thin baby wipe.  After being seen by Dermatology, I was told my leg must be washed properly in a bucket of water (unless proper leg wash baths are available) at every dressing change.  This helps to prevent any infections, build up of dry skin etc which will only cause more pain and suffering which we don't want.  If they can't or won't wash your legs at the dressing change, is there anyway you or someone your know (a relative or friend) could wash them at home for you before your have your dressings changed.  I now remove my own dressings and bandages and wash my legs at home myself before attending the Ulcer Clinic or Nurse at GP Practice twice a week and it has made massive improvement in my legs and reduced the pain. 

Please keep going back to your GP until you get the pain under control with the correct medication.  If you feel nothing is helping ask to be referred to the Pain Management Clinic who will be able to access your notes and offer better pain medication for your symptoms.  Also ask them to swab your ulcer to check for any possible infections even if you don't have any signs of the infection itself, also if there is an infection and you are given antibiotics, sometimes 1 week supply isn't enough to get rid of an infection fully so if you need or think you might need a 2nd weeks supply please see your GP again.  

If your doctor is prescribing the same medication over and over again and they are not working please ask to be seen by a different doctor (you are well within your rights) for a second opinion.  There is a lot of different medications out there its finding the right one that works for you.  

Hope this helps a little and you get the pain under control.

 

20

Hi Vickylee 

I am so sorry your have suffered so badly.

You said you were on honey, how long does the burning last?  I was on honey dressings previously on my left leg and sometimes had burning/stinging which came and went but only lasted for about an hour after each dressing change. I was told if it got worse, didnt go away or I couldn't stand the pain it caused to remove it straight away and get seen asap by nurse.  

If any dressings are sticking badly to your ulcer especially if they have to then be soaked off which then causes more pain ask to have a different dressing put on your ulcer.  If any dressing is sticking that bad they will cause trauma to the ulcer just by removing it which in turn causes more pain and takes the ulcer longer to heal. 

Im glad to hear you are now seen by a Vascular Nurse every week and not just District Nurses.  This will make all the difference to your treatment you receive as the Vascular Nurses are specialist trained in this area and have a better understanding of leg ulcers.

When you see your Vascular Consultant, make sure you ask any questions you have doesn't matter if you repeat your self over and over, the main thing is make sure when you leave every appointment you are happy with whats been said and have a plan of whats happening next. If your not happy with anything at all tell them.  I have seen 5 or 6 (lost count) Vascular Consultants in the last 8 years and now finally got a consultant that actually listens to what I have to say, takes the time to read my medical notes and follows everything up and makes sure I am 100% happy before leaving the room.  

As for the medication you are taken if it doesn't help please keep going back to your GP and asking for something else, don't suffer with the pain.  Also, it may be worth asking your nurse to swab your ulcer to check for infection even if there is no visible signs of infection, which again can cause alot of pain and burning sensation.  

Is there anyone (relative, friend or even a support group) that you could talk to about how you feel.  Sometimes it helps to talk to someone else or someone who has been/going through the same thing.  Please try not to let it get you down too much, I know its easier said and done, and remember you will get through this but it will take time.  

Hope this helps a little.