Lymphedema after hysterectomy - compression garment question

love_nature
love_nature Member Posts: 8
in Ovarian Cancer #1

Hi all,

Shortly after my complete hysterectomy for the ovarian cancer, I developed lymphedema. I curently have it under control with compression stockings, manual lymphatic drainage and walking for exercise albeit minor given I'm still on chemo. The edema extends from my hips to  just above knees and I need 20-30 compression. I am connected with a lymphedema support group, know of the lymphedema national websites as well as the many compression garment websites. With all of that, what I have NOT been able to find yet are breathable, compression LEGGINGS, capris style, to wear with the 80-90 degree weather we're getting. The compression  garment fitter my insurance works with can't find anything either.

Prior to the cancer, I hiked, biked, volunteered at a horse ranch, etc on my days off. I can't imagine doing what I love with hot, pantyhose-style compression stockings on, and that cost $105 a pair! Lymphedema is not discussed much, but at least 5 million individuals in the US have it, primarily from cancer treatment. So, surely I'm not the only person whose had OVC/lymphedema and who needs a garment like this!?

Thanks for any thoughts.

Shannon

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #2
    Eager to hear what others have to say

    Shannon, I am visiting my sisters here from the Uterine cancer board and will be back to see if anyone else responds.  I developed lymphedema after my hysterectomy last year and only have a lower leg compression garment.  I haven't lived through the heat with it yet, and like the brand I have, but again I don't know how it will do in the heat and hope there is some tips from your group. 

    BTW, mine is a 30-40 and I couldn't imagine wrestling a leg or pantyhose on with this strength! 

  • RGW
    RGW Member Posts: 60
    #3
    NoTimeForCancer said:

    Eager to hear what others have to say

    Shannon, I am visiting my sisters here from the Uterine cancer board and will be back to see if anyone else responds.  I developed lymphedema after my hysterectomy last year and only have a lower leg compression garment.  I haven't lived through the heat with it yet, and like the brand I have, but again I don't know how it will do in the heat and hope there is some tips from your group. 

    BTW, mine is a 30-40 and I couldn't imagine wrestling a leg or pantyhose on with this strength! 

    Compression garments

    I am from the uterine cancer discussion board. I have had lymphedema for two years and control it with compression garments and a flexitouch machine. The best garments are from the lymphedema sleeve company: http://lscdistribution.com/

    they are very expensive, but if you wash them by hand, they will last. There is a Capri length. Good luck

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    #4
    Medi has a CPE Sportswear line

    Shannon, I was hoping for some other feedback too, but below is a link the brand I was given. Again, with my first full summer coming up with my garment I don't know how hot they will be, I have the regular compression garment which I have been very happy with, but it looks like they have sportswear for athletes but I don't know how much of a compression they have. I know these garments eventually lose their support and keep my eyes open for what else is out there. http://www.mediusa.com Another company is currently only making arm garments and I would love to see what (if) they come out with something for lower body compression garments. http://www.lymphedivas.com

  • susangr
    susangr Member Posts: 64
    #5
    Medi Toeless Compression Stockings

    Hi 

    I am from the Uterine Discussion Board.  If you search Lymphedema there you should find good information about this topic there.  I live in hot South Texas and thought it would be really uncomfortable wearing a toe to thigh stocking on my right leg in the summer but it is not too bad at all.  I wear the  Mediven Plus  open toe foot to thigh with silicone band at the top.  Allows me to wear sandals.  They come in various compression strengths ands you should be  assessed and fitted by someone familiar with lymphedema. Best to start with lowest compression recommended and move up to higher levels of compression only when needed.  I started with 20-30 mmHg.   The style number of this product is 10804 and there are numerous vendors who sell  them on the Internet.  This is only one product that is needed to control this condition.  You need to also be taught lymph massage and how to bandage your limb with special compression badges control during times when the edema is worse.   Sincerely Susan

  • msfanciful
    msfanciful Member Posts: 559
    #6
    susangr said:

    Medi Toeless Compression Stockings

    Hi 

    I am from the Uterine Discussion Board.  If you search Lymphedema there you should find good information about this topic there.  I live in hot South Texas and thought it would be really uncomfortable wearing a toe to thigh stocking on my right leg in the summer but it is not too bad at all.  I wear the  Mediven Plus  open toe foot to thigh with silicone band at the top.  Allows me to wear sandals.  They come in various compression strengths ands you should be  assessed and fitted by someone familiar with lymphedema. Best to start with lowest compression recommended and move up to higher levels of compression only when needed.  I started with 20-30 mmHg.   The style number of this product is 10804 and there are numerous vendors who sell  them on the Internet.  This is only one product that is needed to control this condition.  You need to also be taught lymph massage and how to bandage your limb with special compression badges control during times when the edema is worse.   Sincerely Susan

    Lymnphedema and Compression Stockings

    After a hiatus from our discussion board, 6 years later and still fighting ovarian;  I too was hit with lymphedema.  I haven't really addressed yet too;  but know that I will definitely incorporate exercises, massage and stockings.  So I was very glad to see that there are some possibilities out there where we can still live a fairly normal life.

    My swelling starts at the hip area and extends out to the feet.

    Everyday, the swelling is gone or at a minimum;  but at the end of the day, the swelling is evident.

    Thanks for the info.

     

    Sharon

  • love_nature
    love_nature Member Posts: 8
    #7
    compression garment update

    Greetings all,

    I haven't logged in for a while and am happy to see some responses and be able to offer what I've found recently.

    For me, the edema extends from hips to just above the knees, an unusual presentation per a new MD I just saw. So, I am most interested in wearing a capri style in warm weather and have finally found something. The company Rejuvahealth has a very wide and attractive variety of garments. They recently received some leggings that don't go to the ankle (as they thought they would) and are more like a long capri. I sent for a pair, 20-30, and they are breathable and comfortable. Since they are so tight, and revealing, I've worn them with a long shirt when going for a walk, and with super light capris over them when running errands, etc. They were initially too tight in the knees so I stretched them out using a vase wider than my knee. OK, so that's not conventional medicine but man, my life is feeling better with walking in flip flops again. Rejuvahealth also has some fun looking lower leg garments and it's a nice website. I've spoken with a representative, Stacy, who knows about lymphedema from personal experience, and she is super helpful.

    I've also looked at Mediusa and tried a pair of their athletic shorts. The pressure is 18-25 for all of their athletic shorts. I got a little bit of fluid build up between the end of the shorts and knees so sent them back. But after talking with the MD this week, I may try them again. I also got a pair of their SHEER pantyhose, which are much more breathable than the thick, non-breathale pantyhose from Mediven I was given when this all started.

    What I've also learned is that this is a slow and expensive exploratory process to find what works for each individual. When I was handed heavy pantyhose stockings, I thought that was my only choice of garment for life. It is freeing to have some choices, so I hope this conversation has been helpful. Thanks for all the input.

    Shannon

     

Discussion Boards