Genital Lymphedema Please Help

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Genital Lymphedema Please Help

Postby crushd » Tue Mar 03, 2009 4:26 pm

Hi, I am the mom of a 20 year old son with primary genita lymphedema, and we are having great trouble finding any help out there. He was born this way but was miss diagnosed until he was 17. We have went everywhere even contacted the vodder clinic, but after they reviewed our son's medical history decided he was not a person who they would treat, needless to say we were very disappointed since his condition has been getting worse as time goes on. He already has the lymphangiomas and he also has trouble with a fungus that is growing on the skin due to him being wet alot since he swells up for a few days then it starts to drain out of his pores which is in theory better than staying swollen but it brings a new set of problems like the fungus as well as a strong smell that is really hard to get rid of no matter how much you bath he is also in a lot of pain. He also swells up with lymph fluid then it drains but this can cycle in 5 days but it can come and go when ever at times it cycles back to back so as quick as it leaves it starts up again so he can have weeks without let up then all of a sudden it will give him a break of 7 to 10 days but we never know when a break is coming or for how long so it is very hard to plan your life. Our son is also developmentally delayed so this makes it hard for him to understand. As a family we are wondering what to do as well we are wondering if any men out there have what our son has and could explain how it feels, our son has a hard time explaining to us what he feels like so it would be appreciated if anyone could let us know that as well as what has worked in treatment of this condition.
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Re: Genital Lymphedema Please Help

Postby xshlynne » Wed Mar 25, 2009 2:11 pm

I am female, but I have lymphangiomas as well. Mine appeared when I was about 11 and I was completely misdiagnosed too. I have always been told that lymphangiomas are rare, even with lymphedema. I guess my question for anyone reading this is whether that is true or not. I don't really know what to tell your son about dealing with the lymphangiomas except that I have had some reconstructive surgery - blade and laser both of which only result in more lymphangiomas appearing. That was done when I was in my early 20s. They aren't limited to my upper thighs and genital area though - I have some on my arms and back as well - though not many. I don't know if I have gotten used to them but while they were painful when I was younger, they really aren't now. I haven't had a problem with drainage with mine though.

What city are you located in? Have you checked to see if there is a local lymphedema clinic? It may be that if there is one near where you are, they might have some male patients who would be willing to talk to your son about what he's going through.
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Re: Genital Lymphedema Please Help

Postby crushd » Thu Apr 02, 2009 12:48 am

Thanks for you story, we are located in edmonton alberta canada. We do have a lymph edema clinic but they will not see him due to the region his lymphedema is in and they have never seen lymphangiomas so they are of no help. From all I have been told by the doctors here as well as the vodder clinic in austria you are correct it is very rare. Do you still have new angiomas appearing and if so do more appear with every episode of your lymphedema being flared up? do you cycle and drain? do you wear compression undergarments if you do, have you noticed a change? Thanks for your reply you are the first so I appreciate your imput.
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Re: Genital Lymphedema Please Help

Postby xshlynne » Fri Apr 10, 2009 5:14 pm

Most of the doctors I first saw when the lymphangiomas first appeared did not know what they were. When I was about 11-18 they called them warts. When I was about 20 or so one nurse said they were an STD. To which I explained no they weren't because they'd first started appearing when I was about 11. Unfortunately by then, I'd already had them treated as warts (frozen off). I was referred to an ob/gyn who specializes in oncology and he knew what they were and explained how rare they are and referred me to a doctor in Houston for confirmation. Unfortunately, I agreed to laser surgery. This is I guess a bit graphic but I had them on my vulva and on my inner thigh (right leg - which has lymphadema). I also have some on my toes, on my arms, back and under my right breast (though not very many on those places). Honestly, its something I've learned to hate but deal with. The only ones I had lasered and cut off were the ones on my vulva and right inner thigh. The ones on the vulva pretty much have stayed gone. The ones on my inner thigh have come back though smaller and less painful. It appeared for a while that they were coming back more after the surgeries, but as time has gone on I believe they have shrunk and are not nearly as bad in those areas. They certainly don't hurt anymore. I do have a cluster of them that I would like to get rid with laser or cutting in another spot just above my genital area but because my lymphedema has gotten worse in my leg, I don't really want to chance what is for me an unnecessary surgery. They've been there for quite some time and are not painful and they don't drain and they're not too bad.

At this point, I don't have any new ones appearing. It has been probably 15-16 years since I had my last laser/cutting surgery. I think in all I had 3 or 4 surgeries in my early 20s. They do not seem to be affected by my lymphadema the way you describe. At this point, my right leg and right arm are constantly swollen. But I don't have drainage per se. The only time I have any leaking in my leg (never in my arm) is when I cut myself (usually when shaving) but even that is rare. In the last year I've had 3 incidents where I had any leaking. Before that, I didn't have any leaking at all even with cuts. The leaking I've had in the past year has not been near the lymphangiomas and each time was caused by a small cut on my leg.

I don't wear compression undergarmets. It may be something I should look into though because I have a bit of swelling there. Most of my swelling isn't concentrated there though. It is primarily in my leg. I do wear compression garmets on my leg.

I don't know how much help I can be. I can ask my ob/gyn who has followed me with this for almost 20 years now if he knows of anyone who treats men. He's a very well respected doctor who lectures and teaches and I think he's written a case study on me. He talked about it at one point. This has become sort of old hat for me because he used to bring students in and out of my surgeries and my appointments to see my condition because they would likely never see anything like it again. It's hard in your early 20s or teens but as I've gotten older, its just something I live with. I can see where it would be harder for a man though than a woman to have lymphangiomas in the genital area. It can't be comfortable. I'll call my doctor on Monday and see if he knows of anyone anywhere who is working with men. I'll post here as soon as I find out something.
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Re: Genital Lymphedema Please Help

Postby cjhurt92 » Tue Sep 22, 2009 1:28 am

I have The Same problem, Im 17 (male) and I started getting swollen Down There 2 Years and a go, Its Very,Very Uncomfortable. What I do is Try to stay off My feet, I use a wheelchair when Out and about, I elevate buttocks while Im Not busy, it keeps the swelling at a minimum. I would Also recommend Getting Your son a recliner (if you don't already have one) Becaus Laying Down Can Get Uncomfy after awhile. Now For the draining I really feel His Pain Its so Frustrating, Its Hard To wrap "That" area. What i do is Get a wash Cloth and place it over the area thats leaking Then I Get a Tshirt and place in Over the area, Then I Elevate my body. This Helps stop the Leaking a little faster, But You have to change the wraps often so it stays dry and heals faster...Now For the smell, Its hard To get rid of it. I usually just soak in a warm Bubble bath with extra soap, Then I drain Out water and get more some soap and gently wash the area with my hands (don't use a rag it may cause him to leak) then rinse. Then I get out of shower and i use a Blow dry (put it on cold dont use hot because it could burn him) my self until im Dry, After that I put baby powder on the Swollen Area and creases, It Helps keep you dry longer and it really kills the smell....I hope this helps contact me for any Questions.

Carlos,
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Re: Genital Lymphedema Please Help

Postby xshlynne » Sun Sep 27, 2009 1:47 am

I did check with my doctor and he didn't really have any suggestions for specialists but he did suggest that men who have lymphangiomas see a urologist.

As I said before I'm female and 39. I've had lymphangiomas since I was about 12ish. I've never had a problem with them leaking. I've had them cut off, lasered off, and frozen off. I can't recommend or not recommend these courses of treatment. For a long time I was very frustrated that they kept coming back. At this point though they've stopped appearing and I don't have any new ones. So it's worked for me but it wasn't a fast fix. It took a long time (years) to get to the point where I stopped getting new ones.
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Re: Genital Lymphedema Please Help

Postby crushd » Sat Oct 17, 2009 6:28 pm

Hi, Carlos I really appreciate you replying. We do have 2 questions do you have lots of pain when you swell and when you are draining? I have used tea tree oil soaps on him and we have notice that thwe smell isn't as bad it's about 70% better we find it in specialty soap shops or at health food stores. When it comes to compression we use incontenance pads when he is leaking and we have found a product called under armor compression sports clothing you can find it at a good sporting store or on the internet, hockey players and soccer players use them. If you buy them we use the ones that go from his bellybutton to his knees these have been the best. We have also just started to use horse back riding as a way to get some sort of help with compression he has been going for about 5 times I don't know if this will help but I hate not having any tratment so we are trying some things ourselves. Also we have seen a urologist actually a couple they have no idea. If I can think of any thing else I will let you know, and thank you for your post it's so nice knowing someone else actually exsists with this condition. All the Best >

Crushd
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Re: Genital Lymphedema Please Help

Postby sidejoebob » Tue Feb 09, 2010 12:29 am

I have the same problem, i am 20 years old male i donot like haveing lymphedema and always getting infection and always being swollen but i try not to let it get me down, i still work and deal with the pain which is hard alot of the time but i do not what to do they tryed the bandage which did not make a difference, my doctor also tryed pills to help with swelling to help to drine down below. i do not know what to do i have had to get a surgery to try make it easier to pee but that is about everything they said they can do and when i get pain and infection is to treat them but they do not see it alot when i live, so i am trying to find a doctor somewhere in canada that may know more information about lymphedema.
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Re: Genital Lymphedema Please Help

Postby patoco » Tue Feb 09, 2010 8:33 am

Hey Side Joe

There are a couple things you might try. Go to this page:

Registry of Lymphedema Doctors

viewtopic.php?f=25&t=5

and see if there is one near you.

You can also check with the Canadian Lymphedema Assoc.

Lymphovenous Canada

http://www.lymphovenous-canada.ca/

and see if perhaps they might know of one.

Be sure to check out our page on

Male Genital Lymphedema too to info:

http://www.lymphedemapeople.com/wiki/do ... lymphedema

How long ago did you have the surgery and what type was it?

Pat
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Re: Genital Lymphedema Please Help

Postby crushd » Wed Apr 21, 2010 2:45 pm

Hi Everyone,

Just wanted to say hi to sidejoebob, and also wanted to say hi to Carlos, we have been wondering how you are and we hope you are well. Our son is 21 sidejoebob and he also has genital lymphedema, this last 8 weeks have been really hard on him is is continually cycling not giving him much of any break, but on a good note the doctors finally are lisening and it is all because of Carlos and Pat giving us feed back on how painful it is. We went armed with your comments and after the doctor read how painful genital lyphedema is for you both of you they took a better approach to helping our son out. Because our son is developmentally delayed they had to only go on what mom and dad said, even though we were telling them he was in pain they were only giving him (tylenol and advil then naproxen) wern't working, our words took on greater meaning with your help, so thank you. He is on tramadul and he seems to be handling life amuch better. I wish we had something better to help these young guys out but managing your symptoms seem the best there is. Hang in there both Carlos and Sidejoebob, remember your not alone. The bandageing wasn't effective for our son, we did find a compression garment fitter who made our son some undergarments to help with swelling, it's hard to figure out if they work since our son does not always understand whats happening to him, he at times wont wear them because they are hot and uncomfortable. That is all for now.

Crushd
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Re: Genital Lymphedema Please Help

Postby patoco » Thu Apr 22, 2010 12:00 pm

Thanks crushd :!:

Glad to hear from you and continual prayers for your son.

If you need more backup, just post a note.

Pat
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