permanent sclerosing lymphangitis

Posted in the Urology Forum

shanks

Winston Salem, NC

#1 Jan 21, 2012
For the past eighteen months I have had a condition which I believe must be sclerosing lymphangitis of the penis, a mildly discomforting lesion and indurated cord involving the coronal sulcus. From all my research I am most concerned that the problem appears to have received scant medical attention, perhaps due most to the assertion that the disorder almost always resolves spontaneously. The general medical consensus seems to be that it is a self-limiting condition most often occurring after vigorous sexual activity, which almost always heals itself with time: by far, the most frequent advice I have read is for one to abstain from sexual activity to allow for healing. There have also been recommendations to take several aspirin daily, and in some online forums special creams are advocated to accelerate the breaking up of lymph congestion that is related to sclerosing lymphangitis. For damages in which disturbances of lymphatic drainage may play a part, I have also read one case report where the lesion was perforated, causing a fluid to leak out and thereby creating a smaller, softer lesion which eventually disappeared.

I have tried aspirins and creams and nothing has worked for me. I have also abstained from all sexual activity for several months at a time during the past eighteen months and the sclerosing lymphangitis is still there every morning; it does get better during the day but it is always still able to be felt as a hardened tissue under the skin. It is true that it also presents worse after sexual activity. At its worst, it does appear very similar to the first photo in this article: http://sti.bmj.com/content/48/6/545.full.pdf

I know I should have sought medical attention before waiting this long but I have also been somewhat confused about where to even start, given the apparent lack of knowledge about the disorder combined with my reluctance to visit doctors. One study even concludes:“Until further knowledge is available, we suggest that this condition is best regarded as simple dilatation of a lymphatic vessel—namely, lymphangiectasis. As the condition is both benign and transient we propose the term benign transient lymphangiectasis of the penis for the condition formerly known as sclerosing lymphangitis.” All of this led me to postpone medical advice for too long; I suppose that I was also hoping that it would someday heal itself!

Another main reason for writing this letter is that I have not been to any doctor for the past ten years and, in this case, I honestly do not even know where to start? Would I go to a general physician, a dermatologist, or urologist? My hunch is that I should see someone like you and I am hoping that this letter today will give a start in the right direction towards a cure for my condition. I cannot afford to randomly visit doctors who may or may not have even heard of my condition, and ho may only advise that I abstain from sexual activity, take a round of antibiotics, or apply some special cream, worse yet simply send me to another more specialized physician! Can someone tell me how this condition might be treated if I do visit a physician, and how much will the procedure cost?
action jackson

Auckland, New Zealand

#2 Apr 20, 2012
i have had this condition since my early 20s and am now 36! there has been no resolution at all and it is very frustrating. i am at a complete loss as to what to do, other than having it surgically excised, which i am fearful of doing lest there is permanent nerve damage; not to mention scarring from syrgery could cause peyronies diseae.

what to do? who the hell knos, it seems not even the doctors have any idea.
Shanks

Lexington, NC

#3 Apr 23, 2012
it is indeed frustrating! since initially posting this topic I have visited one urologist who claimed to know a bit about this condition and said he had even surgically excised a couple in the last twenty years. His treatment for me was to prescribe 20 days supply of antibiotics (which I thought was a lot and not sure what it would help), and two different anti-inflammatory pills (2 weeks supply). He advised against surgery for me for two reasons: one he thought my condition was mild enough that I didn't require it; he pointed out that I had large blood vessels elsewhere on my body and he compared the swollen lymph vessels to that, easily a cosmetic/aesthetic concern but nothing to warrant medical attention (in his opinion). Secondly, he did mention that if surgically excised there could be some problems with lymph drainage thereby creating more future swelling and also mentioned concern with scar tissue/cosmetic issues etc...but he did not mention about leading to peyronies disease.

I have also recently discovered a great article by Samuel B. Broaddus, M.D., entitled "Surgical management of persistent, symptomatic
nonvenereal sclerosing lymphangitis of the penis."
The article shows photos of the specimen completely removed from the penis and I was surprised to see how it is all removed in one piece; much different that the older article noting the fluid discharge (Dr. Broaddus does advise against this method). Dr. Broaddus has only done a few surgical excisions in the last 30 years so again this is rare but I have spoken with him and in his opinion there is very little complications to be concerned about following the surgery.

For now, the sclerosing lymphangitis is still there and the previous urologist visit was a waste of $400 USD, but it was good to know I have tried one medical suggestion with little effect, so I may look further into the surgical option at a later point.

Thanks for your comments.
action jackson

Auckland, New Zealand

#4 May 6, 2012
shanks,

good info you relayed there, thanks. to me it seems the only resolution is surgery, i just can't seem to find any other methods to eliminate this annoyance. as i said in my previous post, i want to avoid surgery at all costs.

one thing i am currently trying, is a peyronies disease alternative treatment protocol, which could perhaps clear/reduce the blockage in the lymph nodes. i know i don;t have peyronies and it's def SL, but these particular protocols have been used to soften/remove scar tissue/lumps on the penis resulting from peyronies, so maybe, even if it's a long shot, it could help in my treatment.

if i was you i'd forget about doctors and specialists anymore -- unless you choose the surgical route. and if you do go for that option, post again and let me know hwo it went.

good luck, i hope you win.
anyone

Piketon, OH

#5 May 27, 2012
I've been having this problem on and off for ten years. Right now it's really bad thanks to an itchy tick bite near there. I'm not sure if a round of antibiotics would help or not, but I can't even get it diagnosed. The urologist who didn't look at it wanted to do a cystostomy. Should I do that? It seem to be in an area that that test wouldn't even show.
action jackson

Auckland, New Zealand

#6 Jun 29, 2012
if you know it's SL, antibiotics wont do shit, neither will going to a urologist. chances are he wont know what it is anyway. the only way to fix it is surgical removal by an EXPERIENCED urological surgeon.
robotmanblue

South San Francisco, CA

#7 Jan 27, 2013
I had SL and it fortunately resolved itself in about a week, I think this best treatment is to maintain normal rigorous sexual activity since this will stretch or open up what got blocked in the first place.

http://www.medhelp.org/posts/Urology/Sclerosi...
Getright

Cornwall, Canada

#8 May 16, 2013
I have had sclerosing lymphangitis/lymphocele/lympha ngiosclerosis - all the same condition....for several years, mainly because I kept irritating it, went to urologists and they said I didnt have anything, you can hardly see mine but it is irritating and when flared up mildly painful.

here is a good link:
http://forums.webmd.com/3/urology/tip/1/65#65

only thing I would add is it very well will take more than six weeks to resolve, could be many months, but do not touch your penis is the take home message. No sex/masterbation or fiddling/prodding....
There is also a cream that others have started using that "I" find SERIOUSLY helps.....I have no interest in the company that makes the product...

http://forums.webmd.com/3/urology/resource/3

There is a lot of bad info on the net about making this condition better, and the above posters comment, about continuing rigorous sexual activity to help resolution is a great example. it is an inflammatory condition so do not irritate it.
Dari

Stockholm, Sweden

#9 Apr 4, 2014
Hi, I have Sclerosing lymphangitis (SL) and I got really scared when I saw it. I saw it appearing about 10 days ago. I did a lot of research and the best advice seems to be to not touch the penis and let it recover with whatever time it needs. Most doctors on the Internet recommended to wait a couple of weeks and if it does not get better see a doctor. Since I masturbate and have sex a lot this was disturbing. My dick was hard all the time so I had to ejaculate. So I masturbated three times from the time I first saw SL and when I did, I did not touch the inflamed areas. Since I could not see it recover at all after about 5 days I stopped touching my penis. I also bought a special cream that really seems to help a lot. I've used it for three days in a row and the SL is almost gone. This cream is Shea Butter - natural cream with anti-inflammatory effect. I did not believe it first but I have used it three times and the cord-like thing is really disappearing. I do not know if the cream helped or if the time waiting and not touching the penis did. I think it might have been a combination of all.

I will use the cream until it is totally gone - I use it once per day. I can still see a little bit of the SL but it is almost gone.

I met a doctor one week ago and told him about my SL. He did not know much about it so he could not help me. So I asked him: "what would you do if your penis was like this?" Then he replied that he would not touch it because if a lymph would be inflamed the best thing to do is to let it recover by itself. He told me to wait one week and come back if it did not get better.
That advice in combination with shea butter on the SL is the key to success.

I have not touched my penis for erection/ejacualtion purposes the last 4 days and I wont until it is totally recovered. But, if your dick is really hard all the time my advice is to masturbate with caution for ejaculation so the penis can rest. Try not to touch the SL area while masturbating.

Good Luck!
penistroubles

Los Angeles, CA

#11 Nov 25, 2014
I noticed my SL about 4 days ago. I figured it was nothing serious (which is kinda true I guess) so I continued masturbating. It wouldn't go away so that's when I did some research and when I came across the word "sclerosing lymphangitis" and googled it, I knew right away that that's what I had. It's still there and it feels harder and it might've gotten bigger. I'm going to abstain from jerkin' it for a few days and see if it gets better. It's not painful at all but it definitely bothers me when I'm masturbating and I feel that hard bumpy area under the corona. I will post back in a few days and give you guys an update on my recovery.

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