Angry

Hi all. I have been having a lot of gastric problems for over 2 years now with swelling/bloating and pain. At around the same time I noticed my legs swelling, with no weight gain. In my mind I felt that it was somehow conected but the doctor's said no it wasn't. Firstly I was told that the symptoms were in my head and some were so patronising and made me feel that I was possibly imagining everything. So have been being treated for 2 different things. Anyway, after many different tests and pestering the doctor's for a referral to a Gastroenterologist and yet more test, I've finally been told that I have an agressive form of Bacteria in my gut which is what is causing the swelling around my middle. I was also told that (apparently) this bacteria may also be the cause of my Lymphoedema because it can attack the Lymphatic System. I am so angry that this could have been diagnosed ages ago but I kept being dismissed. Is this medical negligent or what????????????? Sorry for the long post by I am so angry.

20 Replies

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  • Angie so sorry for all you have been going through. I had similar issues and initially I had a doctor tell me the swelling that would come and go in the beginning was all in my head and I was being an attention seeker. Now my leg and foot are twice the normal size. I swear many doctors are lazy and don't want to look outside the box. Very frustrating. Never give up.

  • Not gona give up Snaomi. But I know exactly what you mean. I find that half the time when talking to a dr. they don't seem to be listening. arrgghhhh

  • I think there is definitely a link between bloating and stomach cramps and lymphodema, I suffered for years with excruciating pain in my tummy which comes on suddenly and leaves me having to lay down for several hours until the pain subsides. I thought it maybe a food intolerance but couldn't connect it to anything I ate. The idiot doctor gave me medication for heavy periods, it wasn't linked to my menstrual cycle and I've never had heavy bleeding! I take buscopan which does seem to help with cramps but read recently that it is most likely actually due to lymph fluid around my bowels causing the pain.

    I have primary lymphodema which no one has ever been able to give me a reason as to why I have got it. My advice to you if you are in the UK and can afford it go straight to the top specialists at Oxford, they will do a scan of your lymphatics and if you have a blockage they might be able to by pass it. It's expensive surgery but may really help your leg. It's too late for me now as the main lymphatic channels have disappeared, pretty sure they were there since my leg was fine for the first 40 years of my life!! Also get the right compression garments, flat knit made to measure nit the round knit off of the shelf and have manual lymphatic drainage which you can apply for PIP payments to cover the costs.

    Good luck keep fighting for all of the best treatments.

  • Thanks Niktck. I have researched the Oxford Clinic and I am thinking of going down that road. I have an appt with my local Lymphoedema Clinic on the 25th and will ask them if I am able to get a referral. If not I will go direct. x

  • Hi Angie - I hope that with treatment for the bacteria, your condition will improve rapidly. I don't think misdiagnosis is medical neglect - it happens all the time in the real world. Doctors have limited training, and do not know it all. As a lymphoedema therapist, I have many tools to treat lymphoedema, but do not know everything about the body and the lymph system. I am trained to do MLD and assist in garment prescription. However, I do not feel I know enough about the lymphatic system to be able to explain why some people respond well to CDT and others do not. I wish I knew more about the central drainage system - there is more information and research being done steadily on lymphoedema and the lymphatic system. As the fluid drains from the legs into the pelvis, it then enters the central drainage portal (thoracic duct) at the cisterna chyli. The lymph system here is also dealing with the digestion of fats. And there are many lymph nodes in the bowel region. This system (I feel) is poorly understood. I hope that you and the specialists (and me) will have more answers soon about how this part of the lymphatic system works - and perhaps we will have more answers to better treatment strategies. I understand your frustration and anger - keep asking questions, and if you feel that your team are not serving you well, keep searching for better answers and support.

  • Hi Bijingo. I understand what your saying and maybe you're right in saying that misdiagnosis is not medical neglect, and obviously limited training comes into it. But I am angry that for over 2 yrs no one wanted to listen to me, considering that we are told to listen to our bodies and seek medical advice. Raised eyes whenever I walked into the room, clock watching, patronising and even being told it was all in my head, giving me the impression that I had mental health problems. My anger is that the doctor's I saw did not want to listen to me and had already made up their minds before the end of each visit.

  • I am so sorry for their mistreatment of you. It is terribly unfair. I acknowledge the information any client or friend gives me, and am happy to admit when I don't know what is going on. Unfortunately, there are still 'professionals' out there who would rather imply you are suffering from a complaint 'in your head' than admit defeat. These professionals are not worthy of you, and may not be able to bed educated. I think you should send them an invoice for wasting your time, and a letter from you explaining you have found answers elsewhere.

  • Funny you should say that Bijingo, once I get the answers I'm looking for then I intend to complain about their complacency in dealing with my symptoms. Though they'll probably strike me off their books but hey...............

  • Hello, I am living in Spain and have met some grand doctors BUT I met the horror of horrors a few weeks ago. Had a hospital appointment which was the fourth each with a different consultant. Advice on creams pills and compression knee highs were useless and I was getting worse. Only help was lymphatic drainage which was making me feel good,so I approached feeling optimistic. I hadn't got through the door when I was greeted by a loud voice saying "Oh it's good to see why you have lymphedema, you're too fat ! " My husband had died just the week before and I could hear him saying into my ear "Keep calm now." So I did. I took my time taking off my coat putting down my bag and sitting firmly in the chair opposite him looking him straight in the eye. He was so arrogant. When he opened his mouth to say something , I stopped him in his tracks by asking him very quietly and calmly if he was always so rude to his patients. He blustered and said he was never rude to anybody. So I said "Well you have been very rude to me without justification and I just wanted you to know that it wasn't necessary and not appreciated!"

    Don't know how I managed it so calmly and in Spanish , but there was someone sitting on my shoulder helping me. It certainly worked as it completely took the wind out of his sails. After my explanations of why I was like this ( a few kilos overweight but not morbidly obese!!! Horrid word) He had changed completely in his manner and couldn't help enough. I do think that some doctors need to be gently reminded from time to time that they are not God !

    I have questions to ask about the advice he gave me ... but later , this is too long already . Just wanted to share my experience.😏

  • Well done!!!

  • good for you, hun, I'm also outspoken, gets me into trouble...but.x

  • I dared to tell the doc, I was talking to, that I felt my problems were beyond his expertise, he acted real insulted, but I apologised and explained, that I appreciate his very good general medidical knowledge, but that now my organs are dropping, I have prolapse of the bowel(rectocele), plus bleeding, and get bladder incontinence, all very difficult, when your disabled and cant get to the loo, in a hurry, but he has now referred me to a gyno, at hospital, I need an opp, but cant have anesthetic, so now checking out plastic repair, am scared!!!.

  • I can understand her anger & frustration I'm the same. I'm on high dose off stomach medication & still get flare ups, when it gets really bad I end up in hospital. Angle I'm still waiting on 1St appointment hun so sorry of no help to you x

  • How did it finally get diagnosed and treated as I am going through the same thing?

    It is wrong when you are female everything is put down to hormones or IBS!

  • It was finally diagnosed after I insisted on seeing a Gastroenterologist. He was brilliant. Went through my history etc and ordered loads of tests. One of which was a breath test (forgot what it was called). This showed up the bacteria in my gut. Gave me antibiotics which didn't work, then when I had follow up (last week) was told that all tests were clear and that I seem to have an aggressive form of bacteria which not only is causing my gut/stomache to swell but may well be causing my legs to swell. So I've been given some strong antibiotics (which I hope I don't react to) and we'll see what's what at the end of the course. Its a 2 wk course and have been told I should see a difference then. I'll update in 2 wks.

  • I very much look forward to it as It sounds like my problem. I wonder if the test was a SIBO. I do hope it works for you I know what hell it can be. Was this done on the NHS and what antibiotics work? My kindest regards

  • Hi Hun. Don't know if its SIBO cos I wasn't told much at the appt. The test was a 'hydrogen Breath test' and yes it was done on the NHS. Had to be seen by a Gastroenterologist 1st. don't know why but it was a long wait. Anyway, I've started taking the tablets and they are giving me bad diarrhea. Rang my local GP who said, in a not so nice voice' ''You've got 2 choices.......either stop them or put up with it'' They are so sympathetic and helpful.......NOT. I'm gona continue with them and clear my calendar for the next 2 weeks and not go out much lol and see what happens. I hope this makes sense and I hope you get some joy. Good luck x

  • My thoughts are with you, this condition has ruined my life and I have been ridiculed by Doctors. I sometimes wonder if there is anything I can stomach and of course I am over weight so you can imagine the sneers I get from Doctors.

  • oh, dear, on reading last few posts, things are sounding very familiar, since this odema, started, iv'e had a very upset tummy, with the trots, most of the time, with regular bleeding, went back to doc, also had vaginal bleeding, though I'm post menopausal, so he did a cervical smear and put his finger in the rear, I have a history of piles, and he said I was probably bleeding from internal ones, smear came back as thrush and bacterial vaginosis, was thinking I may have bowel or womb cancer, have had 2 courses of anti-biotics and caneston treatment for the thrush, is there a connection between all this and my swollen leg and foot, bleeding has stopped now, but still getting tummy cramps, and diarhea.

  • Thanks for sharing angie10 I too have been having problems with stomach for years, they've put it down to pancreas or gastroenteritis, maybe their is a connection there. I hope u get your answers,, takecare.

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