hi everybody this my first time on here im hoping talking to people who understand helps. I have secondry lympheodema caused by the removal of cancer in my cervix and 38 lymphnodes in my pelvic area i receive a massage weekly and massage myself twice daily i also wear compression tights everyday.
Is it normal the way im feeling im finding it so hard to cope emotionly i should be on top of the world im cancer free i know this is amazing and im so lucky but i just feel so low ? im a single 43 yr old woman so i have to work ive cut down my hours and can only work mornings as im on my feet by midday theres such a biuld up of fluid my groin is very painfull and heavy im so confused my specialist said my grion is so swollen because the fluid is being pushed up the leg by the compression tights and its sitting in my grion i look grotesque my lympheodema nurse said there is still compression at the top of my tights im just unlucky whilst working i have to wear an extra pair of tight underwear and a layer of sponge underneath its so uncomftable that i can cope with im really struggling with the way i look then i beat myself up for feeling vain !!!!!!! i think i would feel better about things if i were married. i was deverstated recently i met up a old school friend on several occasions i explained everything as the swelling is very noticable no matter how i try and hide it we got on great things were looking up i was happy for the first time since my op but when he stayed the night and saw me without compression very swollen he said he was sorry but just couldnt be with me as i looked so unatractive i havent stopped crying since how can i cope with constant pain and swelling for the rest of my life alone i know i sound shallow i should be grateful i survived cancer when so many dont i hate myself for the way i feel but cant help it does anyone know if there is any help emotionally i can receive ? i just cant pull myself together x
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You are not being vain. Lymphoedema is the most dreadful thing, more especially for women. In the first instance why not go and speak with you doctor to see if they can offer any help and guidance on finding a good counselor to help you through this early stage and rebuild your self-esteem. NNE
thankyou for replying i will make a appointmet to see her asap im sure things will get better its just hard to believe it at the moment thanks for your advice
I think you might find it helpful to speak to the Lymphoedema Support Network (LSN), if you have not already done so. lymphoedema.org and 020 7351 0990 or 020 7351 4480. They have loads of general and medical information including info on support groups (although not all areas have support groups). You shouldn't need to cope with constant pain but it can take a while to get the right help/ garments for you. The comment made by the ex friend was just unforgivable. You will be able to manage your lymphoedema better and you will become more confident again. Do contact the LSN. Best wishes.
thankyou for replying and for good advice i will definatly contact them im feeling the pain as the only pain relief i can take is paracetamol im allergic to everything the doctor has tried me on i think ive taken so many in the past year im becoming immune to them they dont seem to work as well anymore thanks again
You have to remember you have been through a great deal with your Cancer too. I have it in my arm and hand and I hate it too. I have ended up on anti-depressents
They have been a great help. What ever works for you. Your friend sounded very shallow. Hope you feel a little better soon .
thanks for replying prettypink14 i hope your hand and arm are managable for you ive also had some good advice from annebury and naominorthenellis im going to isit my doctor asap and contact LSN i will mention anti-depressents praps they will work for me to im willing to try anything . i suppose atleast he showed his true colours and i dont want to be with somebody like that i was starting to fall for him tho so its all a bit upsetting thanks again take care x
You have to remember you have been through a great deal with your Cancer too. I have it in my arm and hand and I hate it too. I have ended up on anti-depressents
They have been a great help. What ever works for you. Your friend sounded very shallow. Hope you feel a little better soon .
You have to remember you have been through a great deal with your Cancer too. I have it in my arm and hand and I hate it too. I have ended up on anti-depressents
They have been a great help. What ever works for you. Your friend sounded very shallow. Hope you feel a little better soon .
You have to remember you have been through a great deal with your Cancer too. I have it in my arm and hand and I hate it too. I have ended up on anti-depressents
They have been a great help. What ever works for you. Your friend sounded very shallow. Hope you feel a little better soon .
You have to remember you have been through a great deal with your Cancer too. I have it in my arm and hand and I hate it too. I have ended up on anti-depressents
They have been a great help. What ever works for you. Your friend sounded very shallow. Hope you feel a little better soon .
I am not really in a position to help you much as I have left Arm Lymphoedema. I can relate to what you are saying though, I am struggling with the way I look and with the people who every day ask what I have done to my arm. I also beat myself up for feeling vain and think i should be happy that I am cancer free. When I was first diagnosed I went to the doctor because i just felt so low, and burst into tears actually sobbing while I told him how I feel. He was very good, although he looked a little uncomfortable as he passed me a tissue. lol. Anyway he suggested I try St John's Wart 425mg. It is a natural product sold along with vitamin supplements. BUT DO CHECK WITH YOUR DOCTOR BEFORE YOU TRY THEM AS THEY CANNOT BE TAKEN WITH SOME MEDICATIONS. Once I started on them one per day I felt so much better I was amazed. I can now look to the future and not feel that I am going to burst into tears every minute. I should just add that the man you are talking about must be very shallow and I hope you find someone with more about him in the future. Take care.
thanks for replying king6863 its tough isnt it im often asked what have i done to my leg ? i can disguise my groin a bit better i think sometimes people just dont think. im also very tearful but i feel better for knowing you felt the same as i do and your on the mend emotionly i will mention to the doctor about st johns wart thankyou im pleased things are looking up you would you believe he has not spoken to me after he left that night and hes just phoned i didnt answer shallow is exactly right he doesnt deserve a response !!!!x
thanks for replying king6863 its tough isnt it im often asked what have i done to my leg ? i can disguise my groin a bit better i think sometimes people just dont think. im also very tearful but i feel better for knowing you felt the same as i do and your on the mend emotionly i will mention to the doctor about st johns wart thankyou im pleased things are looking up you would you believe he has not spoken to me after he left that night and hes just phoned i didnt answer shallow is exactly right he doesnt deserve a response !!!!x
thanks for replying king6863 its tough isnt it im often asked what have i done to my leg ? i can disguise my groin a bit better i think sometimes people just dont think. im also very tearful but i feel better for knowing you felt the same as i do and your on the mend emotionly i will mention to the doctor about st johns wart thankyou im pleased things are looking up you would you believe he has not spoken to me after he left that night and hes just phoned i didnt answer shallow is exactly right he doesnt deserve a response !!!!x
Bless you for trying so hard to help yourself. What a horrible man, one day I hope we both find husbands.there are many out there in Facebook land who have and that can be a com for to know that one day it may happen. Know that you are loved and thought about by your lymphie friends and I am sending you hugs from Australia.
thankyou for your lovely message. yes looking back seeing the look on his face he looked so discusted at what he was seeing receiving so many supportive messages has really helped me see he has the problem not me i would never judge and never have anybody on how they look even before my lympheodema so that makes me the better person im sure he will be single for a long time yet !!! us on the otherhand our time will come xxxx
My fat leg became part of me in 2007, and it took me until 2011 to really start taking the lymphoedema seriously, but don't panic. Everyone's condition reacts in different ways and what is best for some may not be good for others, if will take quite a while to understand what works best for you. The fact you get massage so regularly tells me you have ready access to the necessary therapies, but trust me the relationship you form with your lymphy nurse is very important. The clinical management of lymphoedema is evolving at an amazing rate and with you, like me, being a cancer survivor, make sure you are getting free prescriptions, and then with your nurse start trying out all the different options, such as Velcro wraps, bandaging, surgery etc. As far as relationships go, I am hopeless at advice, but when you start to fully understand your leg you will find confidence returning. There are many of us here if you need ideas and experiences, I have really pushed the surgery side of things and am due lyposuction in a month or so, to try and get normal trousers on. There is life with lymphoedema.
thankyou for your reply its good to hear that im not alone id never even heard of lympheodema before i suffered from it i didnt realise how common it is. my lymhpy nurse has tried me on a few diffrent types of compression tights ive now got some that are comfortable well as comfortable as they can be !! shes also given me a sponge insert to help my grion area i get so much fluid there i put a pair of tight underwear on top like spanx im a bit confused tho and im going to mention this when i contact the LSN helpline my lymph nurse said to wear the tight underwear over the tights and sponge insert as it will give a extra bit of compression to the grion however when i saw my specialist in london he said this can make it worse because the tights are pushing the fluid up the leg as the compression in the tights gets less at the top of the leg thats why i have so much fluid in the grion area and if i wear tight underwear on top its keeping the fluid there and stopping it from moving on so i dont know what to do for the best the tight underwear does make me feel more supported but i dont want to make things worse. i asked him if they would drain the fluid away but he no as it would only encourage more fluid to the area. im wishing you well with your lyposuction pls let me know how it goes take care x
I don't know what Spanx are (sounds line an Ann Summers accessory) but I was always told Lycra cycling shorts worn as part of your undergarments can offer a little compression and can be more comfortable. Depends on your preference.
ok thanks yes spanx are the brand of control underwear they are very tight !! mine are like cycling shorts but much tighter they are comfortable the fluid doesnt feel so heavy when im wearing them x
You can cope. Once you've coped with cancer treatment you can cope with anything. Call the LSN, speak to your GP, find all the help you can, follow their advice, then be gentle with yourself - accept that you have been through more than most and give yourself time to get used to the new you. It will get better, honestly. And you most certainly don't need a partner to get through it - I split up with mine before my cancer and I'm so pleased I did. I just couldn't have coped with his moods and him seeing my disfigured chest. I'm nearly two years on now and can only just look at myself in the mirror without cringing, but
I get better every day.
Depression is so so common after cancer, even with lymphoedema. Like you, there are precious few drugs I can take (even after my mastectomy all I could take was paracetamol. It just sucks!). I've tried anti depressants in the past and the only one
I could tolerate was St Johns Wort. It's very gentle, has very few side effects, but it does take about six weeks to work fully.
My heart goes out to you, but you're doing all the right things. Are you on Facebook? If you are, have a look for two groups - I Live With Lymphoedema, and Lymphoedema Fashion. They're great at offering online support.
thankyou for replying jake52 youve had a real tough time to youve really made me think like you say i need time to get used to things and how the new me looks im going to visit my doctor and ask for help ive been trying for too long to do this on my own i dont like to worry my parents and i do tend to hide how im feeling from them and my children when there home from uni i put a brave face on im also going to visit and contact the websites thats been recommended thanks again im so pleased your getting better everyday youve come through so much xx
I know you don't want to worry your parents, but think how you would feel if your kids were going through something similar and hadn't told you. You would want to help them, even if its just a chat-a problem shared IS a problem halved. I'm sure you would be devastated if they hadn't shared their problem with you. Family is there to help carry the burden with you. I am always there to help my kids and I'm sure its the same for your parents too. Maybe just think about it from the other perspective?
thanks fridlie i hadnt looked at it like that its true i would be mortified if my children felt they couldnt talk to me we are very close as i am with my parents. Your right ive just phoned them there coming round this afternoon for a cuppa. My mum ssaid shes been waiting for me to share how im feeling shes noticed ive not been myself (i thought i was pretty good at hiding my feelings !!) I know they will support me theyve been amazing through my cancer journey.I said im very low and didnt want to worry them furtherand my mum said exactly what you have a problem shared is a problem halved and they will talk every thing through this afternoon . thanks so much for your advice xxx
Wonderful! I'm so pleased for you-its the beginning of a better journey. I was worried you might take offence! Crazy advice from me as my parents aren't very supportive! But I have a much better relationship with my own kids and I know how I would feel. I appreciate your reply and please let everyone know how you're getting on. x x
I was thinking about the potential boyfriend you've mentioned. First of all, you should remember that with clothes on you still look fine, as you mention that you don't look attractive as one can still see the extra volume due to lymoedema. The fact that he ended up saying what he did, it shows how shallow a person he is. Looks in general don't last forever so if some people go for looks, they might end up failing finding real love. You seem to be a very warm, sincere and sensitive person and I'm sure you'll find a companion. Try to be positive and look at the half full glass.
thankyou so much rebec yes im beginning to think i had a lucky escape !!!!! im going to take on your advice and try to see things differently and build up my self esteem im overwhelmed with the messages ive received everyones been so lovely there are good people out there and one day ill find my Mr right !!!
You need to speak to your employer too. Now that you have had cancer your employer has a legal responsibility to make reasonable adjustments so that you can return to work. Maybe they can find you a job that doesn't involve so much standing, or provide you with opportunities to sit down so that you can elevate your leg? Good luck.
yes thanks i returned to work recently they have been very supportive i just work mornings now and have a extra break everyday to elevate my leg i also have a full day off midweek this really helps im very lucky really if im having a bit of a bad day more pain than usual they do rally round me when they can im having a meeting next month with my managers to see how its all working out of all of us . x
Hello Allison. I was very moved by your post. I had cervical cancer approx 20 years ago and had a lot of lymph nodes removed from the groin. This resulted in leg and genital Lymphodema which took many years to diagnose properly. I have been through a lot in this time and it has been very difficult but with the help of my Lymphodema nurse I have been able to manage it better. I did have surgery to remove lymph blisters from the vulva and also have had Supermicrosurgery to correct some of the veins in the legs. This was a private operation though as it's not available on the NHS at present. It was expensive, but I was lucky enough to have taken ill health retiral from my job, which provided a lump sum. Things are improving a great deal compared to the past 20 years. I'm sure more could be done for you. All the other advice you have been given is what I would also say. It does sound like counselling might help you and would advise you to give that a try.
The person who made those comments was totally insensitive and should be ashamed of himself. Since all this happened to me I have met and married someone else, who is very understanding. My first marriage broke up after my cancer. So there is life after cancer and with Lymphodema. Good luck with everything x
thankyou for replying marriannec im going to contact LSN to find out my options and see what may be available to try . youve certainly been through it im pleased youve found someone who is understanding and your happily married so theres hope for me one day im going to take on advice from many and get happy in myself then think about dating again fingers crossed !!!! thanks again take care
Hello Alisonlouise I am sorry to hear that you are going through so much pain and discomfort with the lymphodema swelling .I can understand how you are feeling as I had vulva cancer and had to have nodes removed that left me with leg and abdominal lymphodema ,I can't have MLD as I have had 2 DVT's since my ops ,but wear my support stockings and spanx pants to help with the swelling .
I am lucky that I have a very supportive partner who has never judged me for the way my body looks now ,keep looking for the right man and he will love you for who you are ,the other chap was obviously to full of his own self importance and certainly not the man for you
You have been given some very good advice by other members on here so I will not repeat it ,all I will say is that ,like me ,you are now cancer free and that is something to celebrate ,and if you ever need a friend to chat to other than on here I am a good pair of ears .My email is cherryl@ramsden.org.uk
thankyou cherrylann ill take you up on that xx do you find the spanx helping ? ive been advised by my lymphy nurse to wear them but specialist said they can keep the fluid there and restrict it from moving on ?im a bit confused. xx
I do find the spanx help keep the genital swelling down but I have notice a build up of fluid in my tummy over the last three years so maybe not such a good idea .Thank you for sharing that Alisonlouise ,I will certainly ask my specialist next time I see him if the same thing could be happening to me xx
Hi alisonlouise, Maybe this is a good time for you to concentrate on YOU. Forget about a partner for now and having to deal with someone else's (not understanding) feelings and fears. Sounds like you need to really come to terms with your condition without the hassle of a relationship. A relationship is only worthwhile if you get something GOOD out of it. You don't need to lean on a man, you will find the strength to do this and this will make you a stronger person and more able to choose the RIGHT man for you when the time comes. Learn to accept yourself first. There IS light at the end of the tunnel, just give it chance to show.
thankyou fridlie for replying everything you said makes complete sence i am struggling to except myself my bodys changed so much im hoping a counciler will help me with this im going to give it a go as its been recommended by many everyone has been so positive about living with this condition its really helped me to see like you say there is light at the end of the tunnel !! x
I hope you are okay, I hope you have talked to someone at LSN and maybe someone at MacMillan when I had cancer I found them very helpful. Ask your GP if you can have counselling on the NHS as you have had a load going on and talking to someone might help. As for the person who made the comments you are better off without someone like that in your life. Focus on you for a while. Take care of yourself, wishing you all the best x
thankyou for your reply zeze-nan im not working tomorrow and im going to make all my phone calls and sort it all out LSN has been recommended a lot they will be the first on my list i think once things are straight in my head ill be able to deal with things better if i need to take medication to help i will im willing to try anything and as you say talking things through im sure will help me. im definatly going to focus on me for a while thanks again take care x
Thanks ive popped up a new post to explain whats happening im hoping new meds will help im going to sort counciling friday i feel a bit better actually doing something to move forward positivly xx
Hi alison big welcome to the forum and big hugs to you, you're a brave lady and deserve good friends and to find the people who love you for being you xxxx
I, too have lymphedema in my right leg following radiation therapy after surgery for cervical cancer. I know exactly what you are feeling. I met a man just as I was dx with lymphedema. Although my right leg is nearly twice a big as my left, he loves me anyway and we've been married for nearly 7 years. I am 66. My point is that you will meet someone who will ove you regardless of your issue. The important thing is to not let the lymphedema define you. You are so much more than that! Believe me, I still get depressed at times, as I want to be beautiful for my husband and this will always be an issue. However, I look at the rest of me and try to make the most of my good points. I have a wonderful seamstress who has made slacks for me that are small enough in the trunk to fit me but have wider leg than usual to accommodate the lymphedema. Be proud of who you are and God bless! If you don't have pneumatic compression machine, get one. It helps immensely! Let me know if I can help you with any additional information.
thanks for replying bikerchic youve given me some hope for the future !!! ive never heard of a pneumatic compression machine how does it work ? are they widely available ? im willing to try anything to improve things many thanks x
Hi Alison. I am happy to help any way I can. A pneumatic compression machine is a small machine with a large sleeve that goes over your leg to the thigh. Your physician determines the amount of compression you need and a durable medical equipment company supplies the machine. It provides compression beginning at your foot and pulses up to your thigh. The air goes out and the compression begins again. It is very soothing and therapeutic.. I leave mine on from 20 minutes to an hour at a time. You should use it 3 times a day. I never have enough time for that, so I do it before I go to bed. While I'm using it I read or use my laptop. I hope that helps. Oh, I'm in the USA and my insurance pays for the machine. Yours probably would as well. Let me know if you need additional information, or how you make out. Be well and God bless!
Thanks for the info i will mention this to my lymph nurse tomorrow im not sure if there available on the NHS unfortunatly i dont have privite insurance but i will definatly find out . It sounds great fingers crossed i can get hold of one . Many thanks ill let you know xx
Hi, You are not being vain in the slightest. I have had lymphoedema for nearly thirty years since I had a radical hysterectomy for cervical cancer in 1987. I have suffered similar feelings as you and agree that sometimes I tell myself off and should be grateful to be alive. I am plagued with infection due to the lymph and am permanent antibiotics for this which give me tummy problems a lot. Do get some further help to try and control the swelling, I am on my feet a lot too and it does make it much worse and for a long time I couldn't wear support hosiery because it seemed to give me infections by possibly holding the lymph in place. I would suggest an appointment with Professor Mortimer at the Royal Marsden in London. He is a specialist and renowned for his knowledge of lymphoedema. You can see him privately too.
thankyou for replying dianapenny im sorry to hear youve been suffering so much infections are horrid i know ive had a few and cant imagine having them constantly i really feel for you . im a out patient at Queen Charlotte in London there very supportive but i always feel rushed during my appointments i can be waiting up to 2 hours to see the consultant and im in and out in 10 mins. I would be interested in seeing Proffesor Mortimer do you know how i can find out how much a consultation would cost ?My problem is always money ive had to cut down my hours at work by half because of my leg and groin so things are tight . i recently went to see about whether i could claim anything because of this but i dont qualify for anything disability etc all very annoying as ive always worked hard and paid my taxes etc and when you need a little help NOTHING !!!! xx
I am really sorry to hear all the suffering you are going through. I Know exactly what you feel. I am not a doctor so i would not be able to give you any advice regarding your health. Although, A pneumatic compression machine would be a good idea i think as well.
I called my health insurance today and I dont qualify either for any financial help. We are in some way disabled and no one wants to recognise us as such. It is a disgrace. It is very expensive for me as well.
Try to stay strong! There are some emerging technics coming out and some hopes for the future!
Hello, I was so moved by your post, I too have lymphoedema in my leg and genital area and I struggle with how I look when I am very swollen. This man sounds like an pathetic excuse for a human being! I have tried the compression bike shorts bût found that they just didn't give me the compression where I needed it and were not letting the fluid through from my leg. My physiotherapist is trialling me with a product that was made for cyclists I call it my sumo belt but basically it is a wide stretchy band that fastens around my lower waist and then there is a piece that goes between my legs and fastens with Velcro front and back. It is a bit hard to explain but it works really well especially for the pain. It also helps get the swelling down a lot faster. I can wear it under my clothes and it is not noticeable. Anyway I hope things improve for you and remember that someone who is that shallow is definitely not worth your time.
Thanks for replying Mistymay that sounds like just what i could do with i wonder would you be so kind as to find out when you next see your physiotherapist how i would go about getting one please? I get a lot of pain at times some days are worse than others i get so swollen especially the
days i work. Yes true hes simply not worth it i can see that now ,but now i worry when i eventually
start dating again if the same thing will happen i do look unattractive it just hurt so much to hear it.
I worry at times thats it now and ill be alone in the future .Im concentrating on myself at the moment but the thought of being alone forever is horrid .
Sure Alison, I will find out the proper name of the material and let you know. It is hard not to feel unattractive I know as I feel the same way quite a lot. But I really do feel that when the right person comes along they won't care about the swelling and they will love all of you. I am married and i won't let my husband anywhere near me when i am very swollen, but he says he doesn't care as he didn't marry my genitals he married the person. ( so take heart that there are men out there who will make you feel truly beautiful, even when you don't think you are) It may take a couple of days but I will repost with the info soon.
Dear Alison: Though I was diagnosed about 27 years ago and have had it for 54 years, there are still very few doctors who know anything about the lymph system. The lymph system has become a new part of medicine; it is found under lymph and immune system in the medical training. I live in Edmonton , Alberta but was fortunate to find a very special endocrinologist in Calgary, Alberta, 27 years ago, who knew a lot about lymphedema. All my GPs even since, know absolutely nothing and insist on giving me diurectics. So, you, in essense, know more about the condition than your doctors know. It will be a tough job throughout life with this condition in you legs. I might suggest that you look at a whole body stocking because it might help prevent that lymph from being pushed into your groin and your abdoman. Just keep on moving as much as you can for as long as you can. It is VERY fatiguing. In fact, somewhere online it said lymphedema causes severe fatigue. But we all must keep pushing forward. I was 16 when the swelling started; I am 69 now and the swelling has abated somewhat because of no diuretics now and eating only real foods. Good luck to you. This is a good blog to keep in touch with.
I have only just read your posts from a year ago. I also have lipo/lymphodema from the waist down. Diagnosed a year ago mine is primary and has slowly got worse over 30 years. I think probably due to the lack of knowledge by the doctor's I have visited over the years.
I completely empathise with you and think you are a very brave lady to openly write about your emotions. I wish I could but not there yet.
I also feel that not having suffered the same way as cancer patients that I have no right to be so vain.
if I told people how I'm really feeling then I may lose any hold I have on keeping it inside me. People say they know when i'm around because they can hear me laughing before they see me.
I am also single and spend lots of time convincing my family its personal choice
Im sorry the reason I was writing at all was to ask you how things have gone and I hope your feeling better xx
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I am sorry to hear that you are going through so much pain and discomfort with the lymphodema swelling .I can understand how you are feeling as I had vulva cancer and had to have nodes removed that left me with leg and abdominal lymphodema ,I can't have MLD as I have had 2 DVT's since my ops ,but wear my support stockings and spanx pants to help with the swelling .
Newborn with lymphoedema
Lymph Assist home care machine.
Does lymphoedema always get worse?
