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Pelvic lymphedema

RGW
Posts: 60
Joined: Mar 2010

Has anyone had the onset of pelvic lymphedema a year after hysterectomy?

sleem
Posts: 92
Joined: Feb 2010

I haven't but could explain a little more for so we can understand better. Thanks.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

I have not yet experienced pelvic lymphedema - as far as i know, but always worry. I have had significant problems with arm lymphedema which did not become significant until about a year post surgery and radiation treatment but has been chronic since it began. No breast cancer recurrence has ever been found in the last 12 years but the problems persist. Lymphedema therapy can be a great help and I have to be constantly aware lest I develo an arm infection. i have had numerous with one reaching life-threatening level having rapidly progressed to septicemia. It's not a condition that can be ignored, but it certainly can be managed.

susafina
Posts: 134
Joined: May 2010

Yes I am so glad you brought it up! A couple of moonths I noticed that my feet were puffy and ny calves were becoming tight. I had surgery 1 year ago. My legs felt so tight. My docs said it could be but put me on a diuretic at first. When I went back to the surgeon he stated that when ever you hsave lymph nodes removed on top of that external radiation there is a 25% chance of developing lymphedema.
I just went to a lymphedema clinic and was fitted for compression pantyhose and bedtime boots. I was also shown exercises to help drain. The massages alone have helped. If needed mor agressive wraps are done but it would affect my mobility so I opted for the compression stockings. Skin care is also important. Lotions to keep skin moist and inspection to make sure the skin remains intact.
All I know is that I am sick and tired of all the after effects that can occur from treatment that the docs don't readily tell you.
SUE

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

Yes, I have experienced lymphedema particularly in the left side of my pelvis/inguinal area. If I look straight down my belly, I can see that the left side of my body around the pubis and to the left if fuller than the right. The left leg of my panties fits tighter and I have actually had to go to a larger size because of it. It even wraps around to my left buttock so that when I sit I feel as if I am sitting on a hump. My left thigh feel fuller also. I have tried support pantyhose but the tight fit makes my belly hurt and I can't stand wearing them. So far it has only been a nuisance so I haven't seen anyone about it,but If it gets any worse I probably will.

Laura

RGW
Posts: 60
Joined: Mar 2010

Thank you for your responses. Laura: you have described exactly what I am experiencing, but mine is on the right. Same story with the panties. I have called a local lymphedema clinic, but have to wait until a slot opens to go in for evaluation. I guess someone has to finish up treatment for a time slot to open.

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

I will say that the less I exercise the more problems I have with it. If I walk and do basic yoga several times a week it goes back down to almost normal. It's just so hard to find the motivation sometimes. :o)

susangr
Posts: 63
Joined: Oct 2010

Mine started 4 months after surgery and part way through pelvic radiation and chemo treatments which I was getting concurrently and weekly. I've read it can occur 30 years out! My radiation oncologist had warned me about it. She said the swelling will actually start in the thigh and move down towards the foot. The first thing you might notice is your slacks getting tight in the thigh. She said don't wait to get treatment even though the swelling may initially seem minimal. This is when you want to try and control it (phase1)before it progresses through to phase 4 when there is permanent damage to the tissues and significantly impaired circulation.

Others have described the treatments. First your doctor should rule out that you do not have a blood clot that could cause the edema. Of course I also worried about potential recurrence so they moved my scans up. Fortunately that was not the case. Whew!

First step is compression stockings that are fitted specifically to you and which provide the right amount of compression from 30lbs to 80lbs which you wear during waking hours. Elevate your limb(s) at night to help decrease edema and try not to lie on affected side. Avoid standing for long periods. Sit with legs elevated. Avoid soaking in too warm water - hot tubs should be avoided and so should heating pads. Sitting out in hot weather should also be avoided. Be careful to prevent doing things that would cause the skin to breakdown because this condition makes you prone to infection which will be difficult to treat and as previously stated can be life threatening. I actually have a prophylactic antibiotic I take with me when I travel just in case.

If the lymphedema flares up you may need to have your legs wrapped from toes to groin tighter at the toes with lessening pressure moving up the limb. Someone knowledgeable about lymphedema ( a physiotherapist trained in this area or lymphedema specialist) should teach you how to do this along with teaching you lymphedema exercises designed to reroute the lymph vessels and help with lymph drainage. You would wear these wraps 23/24 hours per day until the edema is diminished and then go back into your compression stockings. These wraps sorta resemble the heavy cotton wrap inside a cast that is then wrapped in stretchy bandages that resemble ace bandages although they are somewhat different. When you wear these wraps you are suppose to exercise your limbs to help move the lymph fluid - easier said than done!

I had a very hard time getting my oncologist in the smaller city I live in to even look at my
lymphedema. I finally had to go back to my specialists who immediately starting treating it. The goal is to manage it and try to keep it in check.

Well this is probably far more than you want to know! I am not looking forward to wearing heavy compression stockings in the hot Texas sun this summer.....another challenge we face.

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

My lymphedema is primarily in my pelvis and groin and I don't think I would ever be able to wear any kind of compression garment as my job involves sitting for 40+ hours a week and I can't stand to have anything tight around my pelvis, it's just too painful. I have tried support pantyhose and I know jobst stockings and other compression garments would be even tighter. I know that I may have to face the fact that eventually I won't be able to do my current job, but I am only 48, too young and too poor to retire. I just had my 4 month followup with my oncologist and he said if it gets worse just let him know and he will refer me to someone. I really do find that regular exercise helps. I just have to get off my duff.
I definitely will take your advise to heart and keep an eye on the situation.
Thank you so much for the information, and no information is ever too much. We need all the help we can get!

sleem
Posts: 92
Joined: Feb 2010

I have belly extension sometimes (which I know can signal bad things). But, I have changed underware stype 3 times already as I get lower muscle ache radiating from my pain across my buttocks. I can wear nothing even a little tight or my lower back starts to hurt (slacks, panties,etc.) Perhaps this is the starting cause?

Thank you again,
I never had heard of this.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

If you suspect lymphodema, you really want to see a lymphodema specialist. I had my ankles swell during my 1st remission, right after I'd finished adjuvent pelvic radiation. We were at the beach when they really swelled up, a reaction to the sun and heat and long car ride, I imagine. When we got back from the beach I 'self-doctored' at first, buying compression knee-highs and wearing them faithfully every day, and they really took care of that 'lead legs' feeling at the end of the day and keep the swelling down so that my ankles look normal. But when we flew to Greece, that 11 hour plane ride resulted in some puffy swelling in my groin area. The swelling went down in a day or so (and wasn't noticable when I was clothed) but I asked 2 oncologists about it and both said 'lymphodema', but dismissed it since it was gone when they saw me.

I persisted and got a referral to a lymphodema specialist. It was a little embarrassing (like I was a hypochondriac) since my ankle bones still show and my swelling is so very slight, but I was glad I went. She told me that lympodema can be controlled like mine is if you start compression before it gets bad. I don't like the feeling of tight garments, but do try and wear Spanx under my clothes if I suspect any swelling at all in the pelvic region. (I think that 1-time groin swelling incident was really aggravated by the long airplane flight). I continue to wear compression knee highs on all but the hottest days, and they really keep any swelling from happening and make your legs feel great. They come in pretty weaves and colors like trouser socks. Don't delay if you suspect lymphodema; start wearing compression garments.

If you ever have swelling that HURTS or gets hot to the touch, this is likely a blood clot and an emergency situation where you need immediate medical care.

Aderyn
Posts: 18
Joined: Apr 2011

I'm thinking about buying one of those pedaling gadgets to help keep my legs moving when I'm working. Also, I set a timer to remind me to get up and walk around regularly. I haven't had my surgery yet but have been told it will involve complete pelvic lymphadenectomy, so I want to get out ahead of this thing as much as I can.

susangr
Posts: 63
Joined: Oct 2010

Which makes it even more challenging to deal with lymphedema. I've read that pelvic lymphedema is every bit as prevalent as lymphedema due to breast cancer and harder to treat in the lower extremities. It also receives much less publicity. It's like we've tried to save your life so don't worry us about the small stuff. Lymphedema does however have quite an impact on quality of life IMHO.

Exercise such as walking and especially swimming really helps. It's important not too tire your legs out though.If you have a pool you may be able to get some tax credit if medically indicated. Getting up and walking around rather than sitting for extended periods can help as well as sitting with you leg extended and/or elevated.

I am traveling by air on Monday and have some concerns about how well I will manage. This will be my first trip since diagnosis and treatment.

Susan

Aderyn
Posts: 18
Joined: Apr 2011

Air travel is gruesome enough nowadays without the extra concerns. I'm sure you know this, but wear high support socks, wiggle your feet and legs, and get up and walk around. One advantage to no meal service -- the cart won't be hogging the aisle as much! Hope it all goes well. Going anyplace fun?

susangr
Posts: 63
Joined: Oct 2010

Thanks. I am also going to take an aspirin to reduce the chances of getting a blod clot. Going to Canada to visit family and friends. Will be interesting to see how it goes through security with metal in the wig, port etc...and of course I don't want to go through the x-ray machine. Susan

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