Information on genital lymphedema wanted!!!

[crushd]

Hi we have posted our story before I have a 20 year old son with genital lymphedema, he is also developmentally delayed so we have various challenges to overcome in caring for his lymphedema since he is only at a 5 year old level of learning. I was looking around the site and noticed that you had a conference in the begining of october, I am very dissappointed we didn't know it was happening, but I looked at the shedule of what was discussed each day and you had a portion on genital lymphedema in men, I was wondering if it is possible to get the information that was given during that part. I would really appreciate it if we could. Our son does not express much about his lymphedema except that it hurts so any info would be great for us as parents so we could know what he is dealing with. I just love this site you have helped us to understand much about our sons suffering with this. He has changed so much since getting genital lymphedema, before he was young at heart but full of life and so happy he loved movies,singing, visiting friends, going to DQ, walks, like I said loved life but now its hard to get him to do anything, he tries but usually if I say want to go to the movies,walk, ice cream he says no, he isn't the same young man any more, we find this hard to watch but because of this site we realize he is in to much pain and can't do it and that's O.K He is on pain meds but I'm not sure if he is on enough he takes apo-naproxen every 12 hrs when he is swollen or weeping. He also is on cymbalta it is a anti-deppression pill that also help to get rid of pain, we just started this. This condition has taken the son we knew away and it has been difficult to have watched it rob us. We also hate that nobody seems to know what to do, since it's genital lymphedema we havn't recieved much other than a diagnosis and since then we have been learning ourselves and flying by the seat of our pants trying to find ways to help him.

Thanks for any input
Crushd

[patoco]

hi Crushd

I'm sorry I didn't post earlier on this, but Carlos was giving some really good thoughts on it and I had been following the posts.

Actually, that particular conference was a couple years ago and I was the speaker/presenter for that section.

Most of the info I gave is also on our page regarding male genital lymphedema.

Male Genital Lymphedema

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

I sure wish I had known too that you live in the Atlanta area. We not only have this site and all the associated online support groups, but have one of (if not the best) lymphedema support networks in the country.

Lighthouse Lymphedema Network

http://www.lymphedemalighthouse.org/

Verey very disappointed that the Vodder clinic said they would not treat him..I couldn't imagine them saying this to anyone. It may be because genital lymphedema whether male or female is probably one of the most difficult edemas to treatment or maintain.

What he really needs is a surgeon skilled enough to remove those lymphangiomas (external lumps?). The use of a lser can be very successful in that procedure in helping to close off the wound and making it safe.

Sometimes with age, those growths will stop on their own. Not sure why on the scrotum that happens, but apparently it does. That in turn helps to alleviate most of the leakages you spoke of. BTW, if those growths are like most that ocurr with LE, it may not even be a lymphangioma. The are small hard fibrotic growths associated with lymphedema called papilomas.

The biker shorts are an excellent idea that really has helped many people - others not so. If your son has any type of abdominal lymphedema, the biker shorts may be problematic as it could push the fluid into other newer areas. So, I highly recommend them, to try them - but only if there is no abdominal swelling.

The Norton School of Lymphedema Therapy carries a good video on how to do manual lymphatic drainage and compression wrapping of the genital areas.

The Treatment of Genital Lymphedema

http://www.lymphedemaproducts.com/products/videos.html

There is also surgery that can help dramatically and you will find info on it on the genital LE page. Here again, you need to find a surgeon skilled enough to do it. It can dramatically lesson the swelling and helps even in the long run. The main problem with that is that eventually the swelling does return and of course the risk of infection during the surgery.

I've gotta break for a minute, I'll finish my response in a few minutes.

Pat

[patoco]

ok...I'm back

We often hear bemoaning because of the expectations that are placed on young women because of the perfect people that are always shown from Hollywood. Truth be told, the same exxpectations are dumped on our young men as well. You know, every guy is 6'6", has washboard abs, a square jaw, no body hair and of course is rich. Young men too are so judged by these unreal and actually nonexistant standards.

As a result if you do not meet them you think you are a cast off...very very alone.

Male genital lymphedema is very probably the most devastating type of lymphedema. You feel like such a freak. So many people stare at you and look at you like you are indeed a freak or are some type of sexual pervert with the buldge in your pants.

When that happens you want to simply crawl into a hole and hide. You feel so ugly. You always want to be wearing a coat to hide yourself so that people don't notice. When people speak to you, you can't get them to look you in the eye because they are to busy staring at your pants.

At your son's age, the young people are worrying if they will ever find anyone who can accept and want them despite the lymphedema. You don't think you'll ever find that significant other or date, much less wind up getting married.

And of course, what makes it harder...who is there for you to talk too about your feelings? Teachers, pastors? Don't think so. I'm very close to 57 and this is something that even I have just began to share on.

When you have the leaking areas, you fell nasty and dirty too.

As I so found out as a parent of two myself, that even when the parent tries to reassure a teen, what they are thinking is that you are a mom or dad, you're suppose to say that to make them feel better. Keep saying those words, to be sure, but that is what they are thinking initially even as you speak.

Just think of how tough it is for a teen to find themselves, their identity, self image all those things teens go through and then toss in something like this....and this is even more difficult because of his learning disability.

Oh, also...on the surgery. One of the big helps there is that even if the swelling returns, those leaky areas and growths probably will not return. The surgery seems to be extremely helpful in eliminating those.

Somehow, he (others) have to be able to find that inner strength not to allow genital LE so form their self image. They have to develop a tough skin to ignore those who stare, who comment.

it's hard for them to understand from their perspective in the here and now that you also can have tons and tons of friends who frankly don't care about how they look.

And the reality is that even though they may find it hard to believe, many, if not most people with genital LE do find someone to love and be loved by...they get married...have children...and grandkids to boot.

You can also (and really should) be involved in as many activities as you can.

Despite the LE, I did have those friends, did get married....and yes now am geriactric enough to have one grandchild so far.
In school I was in many organizations, the band, chior, symphony and student council. In college, I served as student body president 3 out of my 5 undergraduate years....in two colleges. In one I was relected for a second term - the only other person that did that was back in the 40's when the school was started and was full of nothing but WWII vets.

As an adult I continued to be involved as much as I could and serve on many boards etc...and even sang with the Portland Philarmonic Chorale for a couple years. I'm saying this just as an example that you CAN have a really cool life filled with lots of good memories.

He has to somehow learn to accept himself and develop all those talents and interests he has. This will really really help both in terms of emotions and self image. This is especially critical with his learning disabilities too. If he has interests, nudge him towards those as best you can.

Trust me, I'm not saying this stuff is easy....Lord knows it isn't.... it's very very tough....even seems impossible at times, but it all can happen. But, Mom, this is something he is going to have to do himself. As a parent you can only gently guide and always love.

Not sure anyone this helps, but just some basic gut-real feelings.

Much love and a big hug to both of you

Pat

[joanne johnson]

Dear Pat,
I just read your entire advice that you sent to the mom with the son with male genital lymphedema. It was awe inspiring. You always give from your heart. You are a special person and along with the lymphedema, you were also given a gift of loving compassion that you extend to all that are in need. God bless you many times over.

[cjhurt92]

I have Edema of leg,lung,Gentitals and Stomache. Out of those four, Genital edema Is The worst. You can't understand unless you have it. In four months it will be 3 years of having it. The worst part for me is I can't get proper treatment My Doctors are at a loss of words, they don't know how to treat me. I can't wear biker shorts or any compression cause i have Edema of the stomache and i was told it could worsen. Not to mention theres no way I wanna put anything tight in that area. It leaks soo easy. I have to becareful changing and Unchanging pants/shorts.
Now for surgery I Personaly would NEVER Have Surgery In that area Because i had my Lymphedema leg amputated and it really messed everything up it spreaded to stomache & lungs...but thats just me

Pain in groin...Its Horrible. It was Unbearable. I was on the Highest dose of everything. The pain got so bad that they had to install a pain pump with diladud and i still have to take one morphine pill ontop of the meds that are givin to me threw the pain pump..Thats How bad my pain is.
If your sons pain Meds aren't working you need to goto A pain management clinic. it took me about to months for them to find out the right Amount of Medication.

I know your son is very Embarressed and doesn't wanna get out. I was (and sometimes still am) the same way. I would end up staying home for months without leaving home, but i finally relized that i can't do this forever. I just ended up feeling worse seeing my sibiling going out to fun places when i was sitting home starring at the tv all day. So i finally started going to the mall/movies at least once a week And Little by little i started feeling more comfy. At first i was embarrassed. People would stare, laugh, Kids would yell "Mommy Look it."..Yes at first it hurt but slowly i started caring less what people thought, and now I Don't even care i just ignore them and enjoy my lunch or movie...Unless its a pretty girl it kind of hurts , but for the most part i do %90 better. I don't mean to say this in a mean way but your son needs to try to suck it up and not care what people think. It will be hard at first but trust me in a few months he will get over it like me. I would recomend maybe trying to find another friend online or in town who also has a disability. Its much easier when someone else as a disability cause they could relate in many ways.
I pray that someday there will be a cure or at least something that can Really keep it under control to the point where we could live a normal-er life.

Hope this helps somewhat.

Carlos,

[crushd]

Hi Carlos, Pat and everyone else, we really apprecitate your input and the info is very good. We want to let you know Kaleb, our son, does not have any trouble with self image we have been stared at his whole life because he is developmentally delayed he has always been looked at, to us he looks perfect, but to the rest of the world not so much, so we have always been stared at, as a family we see people looking but Kaleb does not really ever notice it and if he does see someone staring he usually thinks they like him. He really is very young at heart so even the way his genitals look does not bother him he wants to stay home not becausse of the way he looks but rather because he always tells us I just feel awful and the he points to his genitals and says they hurt. We have had some cut off Pat but the doctors, we live in Canada, will not do it any more they say it wont help because he keeps getting more and they are very worried about infection. Kaleb was born with he disability and the way we found that out was because every other time I would open his diaperis his genitals were swollen they told us he had a hyernia and needed surgery but when they put him in the hospital they couldn't find any thing. Then they realized Kaleb had a host of other problems he wasn't eating, was having seizures, and was blind so needless to say everyone started dealing with the obvious and the swollen genitals were never figured out. As we got the other problems under control over the next 5 years we noticed that is genitals were still doing this swelling but when I would take him to the doctor no one would ever come up with any reason, we also once he started walking around 5 and we began potty training that he had this strange wetness that would come after every swelling, when we told the doctors, and we have seen to many of them, they would blame it on him being diabled and that he was wetting himself. It did calm down during the time he was 8-13 then it hit with a vengence, but he wasn't diagnosed until he was 16. We took him to emergency and told them we wanted answers, they put him in the hospital and cut off some of the angiomas and 3 weeks later they told us the news. The frustrating part is that was it not how to care for it. We wouldn't take that and thank goodness we have a good general practishoner and we started trying things ourself, our doctor sent us to a dermetologist who at first said he had genital warts to which I said no, of course he didn't believe me so he did the same thing cut some of the angiomas off then gave the same diagnosis. We then went to a urologist and he was very good but said he couldn't help us and suggested not having surgery because of the chance of infection. Then I found the vodder on line and found a man in my city who had taken there course. Eric talked to vodder they were very intrested so they contacted our doctors for kalebs medical history, I was packed and ready I just wanted a plan give me something to do I am a mom we fix things, well our doctor called and told us they rejected taking Kaleb into clinic she felt the biggest reason was Kaleb being disabled and he would't be able to explain to them how he felt properly so they didn't want him. We were devestated, after we had a good cry, we went back to flying by the seat of our pants. Since then I found the underarmor and the tea tree soap and this site. The soap has been amazing he had such bad odor that we could'nt be in a car with anyone but family because the odor would permeate the whole car, and if Kaleb sat down beside someone who didn't know our situation they would come to us and say Kaleb smelled, but since the soap everything with the odor has been much better. It is just that he isn' happy and changed in personality so much. We had to put him on the anti depression pill because when he is in pain he gets aggressive he has a hard time to explain so he lashes out, we now know that if he is overly aggressive he is swollen, this is how we tell how he is doing, all by his moods. In the last two years he has had some other problems arise he had to have a pacemaker put in and the first surgery didn't work so he had to have it redone 6 months later, and in the last 9 months he has become enemic so we have been working on getting this better. We really appreciate your site thank you Pat for your help and wonderful words of wisdom I think what you said about self image was wonderful even though Kaleb does not care about that, he loves himself and mom and dad, he will always be 5 at heart. Carlos I hope you take to heart what Pat said and I am very happy you don't stay home any more. Always remember, this is what our phycologist told us a log time ago when it came to people staring at Kaleb, we have nothing to be ashamed about hold your head high and walk proud, Kalebs younger brother always says that when were out and about after he looks a them and says STOP STARING, he is protective he is 16 and 6 feet so now people look away.

Thank you so much keep up the good work.

Pat, sorry about not realizing that was a couple years ago I think all I could see was info on genital lymphedema and that I had missed out on the chance for info I didn't really look at anything else, any way it gave my husband a good laugh. We are from Edmonton Alberta Canada but we would fly in anywhere if we could get some information.

Thanks again Crushd