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Probable Mondor's disease for several years.
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vikvaughn posted:
Hi,
I originally went to the urologist when I was 19 years old after I woke up one day with a hard chord from the top left base of the penis that went up to almost the head and curled to the side with a very slight bump, it isn't always palpable when flaccid; when erect and semi-erect, it is noticeable and pulsates with my heartbeat.
it is somewhat painful when getting erect, and afterwards generally is somewhat sore and inflamed, not always though. It is also somewhat slightly painful to the touch when flaccid.
The doctor brushed off my concerns, and when he palated it in the flaccid state it hurt, I said so, and his statement was "it shouldn't".
And that was that.
I lived with it for a couple years and went to another urologist, he also brushed off my concerns.
I figured they may be right and this is all normal, I also suffered with Chronic Pelvic pain syndrome, and figured maybe the pain was caused by muscles. which doesn't explain the chord though.
About 6 months ago I finally found info on Mondors disease.

I can't stand this anymore and cannot believe I lived with this all this time. I went to my GP and she said it would be 4-8 months to see a urologist, FOR penis PAIN (thats canadian health care for you!!!)
So I will go see an american urologist this time and demand an ultrasound, and pay out of pocket. My idea was to get a thrombectomy, if possible???

My question:
I just feel like the biggest idiot in the world to beleive these doctors, and soldiered on so recklessly. I'm sure in that timeframe I have inflamed that vein (sex/ masturbation) and in essence my penis at least a thousand times....
The literature says Mondor's is a benign condition, but I imagine they mean when it goes away on it's own after a few weeks/months, mine never went away, I'm now almost 27.
and even though when it's not in its inflamed state, it feels quite normal, I'm scared of developing peyronies or something down the line.
Any comments are greatly appreciated,
Thank you.
Reply
 
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counterso responded:
By benign, they mean non-life-threatening, not that it will go away. Mondor's does not turn into Peyronie's. They are separate things.

Unfortunately it is left to the patient to be persistent with the doctor when they don't reach a satisfactory outcome. The doctor will often not pursue something unless the patient makes it an issue.

Mondor's is certainly something you want treated. Hopefully the time that has passed will not affect the ability to reach a positive outcome treatment. There are some conditions that only can be remedied when addressed early.

Lack of treatment may result in other life-threatening concerns of which this can be a symptom.
 
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vikvaughn replied to counterso's response:
Hi Counterso,
thanks a lot for replying,
I have a couple more questions.
In the literature, it always talks about Mondor's as thrombosis of "THE" superficial dorsal vein....is there only one?, because the vein that troubles me is not that big vein but runs right beside it, my "vein" is very small in comparison....
Also, this vein, during an erection, pulses, with the heartbeat. Does that mean it may only be partially clotted?
....there is definitely a clot/lump though, that's where it hurts most.

Is it probable an ultrasound will not be able to see what I have just described? As there is some blood flow, and it's not the BIG vein?

Again, thanks counterso for graciously answering peoples troubling questions on here like this.
 
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vikvaughn replied to vikvaughn's response:
Also, is it at all possible that this is a lymph problem, even though I can see the threadlike chord "pulse" with the heartbeat?
 
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counterso replied to vikvaughn's response:
What you observe and what's actually happening below the skin surface may not be the same thing. Because the area is confining and connected with fascia. Because of the adjacency of these structures, what appears to be happening may only be transmitted motion. Remember, only arteries have a pump. Veins only have a valve system to prevent back-flow. And lymph channels have no pump at all. Thrombosis and throbbing have nothing to do with one another. There is no way to determine from visual observation outside of your skin whether there is any clotting in a blood vessel. This is either determined by a scope or a scan.
Only an exam from a urologist is going to make a diagnosis.
 
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vikvaughn replied to counterso's response:
Hi. thanks again counterso.
Though I haven't been diagnosed, I'm 99% sure this is sclerosing lymphangitis, I thought that could only be at the coronal sulcus, but have read a few people say it can extend from base up the shaft. and I found this pic, showing lymph channels on penis.

http://o.quizlet.com/i/konWHdwaOMoj2XOA4BoDGQ.jpg

beside the irritated lymph "thread" near the head is a very small lumpy mass, That is the only part that gets irritated from touch, and kinda hurts while erecting and sometimes with erection.

You wrote to someone else about this:


"Prolonged irritation, such as with nodules and lymph channels, can create scar tissue, which then makes the effects rather permanent. That's why you want to let them heal fully and completely and not aggravate them further."


So since I have had this for several years and kept irritating it, does that mean even the pain/inflammation on touching it and erection could possibly stay forever?
The inflamed lymph channel itself, even in the span of a week, has gotten less noticeable, since having not touched it at all, but the lump is the same.
the thought of having pain in my penis forever scares me massively. I can't have sex/masturbate again until that lump is gone. if it ever leaves.
 
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vikvaughn replied to vikvaughn's response:
Update:
It is definitely very slowly getting better, though I'd imagine it will take a long time.
erections are still very uncomfortable, so I try as hard as I can not to have them.
I cannot believe how little information there is on this problem, and how backwards the info that is out there is.....unbelievable.
 
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vikvaughn replied to vikvaughn's response:
Mainly just discussion/venting:So I've read pretty much everything you have to say on the topic of sclerosing lymphangitis on this site Counterso. You are, unfortunately, I'd say, the only place to correctly learn about this obviously common problem. If your informative posts were around several years ago I would have quickly stopped touching my penis and all would have been well.

Mine looks and is quite different from the average "look" of this disease....thats why I unfortunately I dismissed this long ago.
Not that any other doctor is saying "DONT TOUCH YOUR PENIS", anyway......Most say it just goes away. Some say don't have sex/masterbation, and others say to massage or press on the problem spot, to drain it.

I can say without a shadow of a doubt, though, in my advanced stage, that it CAN get flared up by erections/erecting, touching the sides of my pants (for sure), and most of all touch in the flaccid state.
A few weeks ago, before my eureka moment, I was pressing directly on the problem spot (on dumb advice from internet answer for $ docs) in flaccid state and that made it worse than ever, and its still bad. Its actually what made me realize all this.

Anyway, just one question. You mention in different threads, that folks may have irritated/inflamed a lymph ''NODE" in the penis. I have read elsewhere there are NO lymph nodes in the penis, just channels.
My painful spot is a small bump 3/4 of the way up the shaft, the inflamed channel runs the full way up the shaft and goes right through the bump and curls under the head with minimal soft fluid/lymph buildup just under the head.
Nothing hurts but the bump, So if there IS nodes in the penis, then this definitely is one.
It would be great to get closure on that aspect.

None of this is noticeable by flaccid visual inspection and I don't expect another would be able to feel/see anything without REALLY trying, and so diagnosis wouldn't happen, and another patient slips through the cracks.
 
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counterso replied to vikvaughn's response:
By node I meant an intersection of channels that can swell like a pocket because of the shape of the structure. It's not the same as an actual lymph node "chamber" like you find in your groin or neck.

I'm sorry that this has been so persistent for you. Surely there is some soft tissue damage from prolonged inflammation, however it's unknown the extent or whether a return to complete normalcy is possible for you.

Your doctor may be able to prescribe a supervised high-dose of anti-inflammatory medication for you, which may or may not help. Have you tried the cream I suggested can help clear lymph congestion?

The issue is that the penis kind of lies outside the area where musculature helps move lymph fluid, so when there's an issue like this, the duration is unpredictable. In other parts of the body, manual lymph drainage is more possible. Because the structure of the penis is so different from other parts of your body, manual lymph drainage is not really an option, and you may frequently get unintended irritation from fitted clothing, non-sexual erections, and other circumstances.

Something that helps move lymph in the body (very gentle bouncing on a trampoline, so your feet don't leave the surface of the trampoline), may not be helpful for this because the penis is kind of a dead end street. There's no real flow through, so lymph is more easily trapped in this appendage.

Good luck! And I'm sorry to hear this has lasted so long for you.
 
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vikvaughn replied to counterso's response:
Hi Counterso,
I have a cream called lymphagen, I'll try to see if that cream you talked about will make it over the border.

Now that I have stopped irritating it for over a month now, I've noticed a couple things you've mentioned. Firstly, my superficial dorsal vein used to be VERY prominent, now it has gone away quite noticeably. likely what you said about the congested lymph pushing the veins to prominence. I also notice a very slight rash in the area, generally coinciding with things getting better.

This all has had a pretty bad effect on my well-being. While I'm ecstatic I've found the cause of the problems. It makes me cringe to think of the chronic inflammation I've caused. my flaccid penis is now different from before. before it was basically the epitome of inflamed: somewhat hard, hot, glans was bigger, veins were prominent, kind of pulled into the body. sometimes it would even have an hourglass shape, not with an erection though thankfully......now it looks much more normal.

I have mentioned all that to urologists, and "it's all normal"....well it wasn't, this should have been a slam dunk diagnosis on symptoms alone. In any case, while offering no other help, why they wouldn't just say "don't touch your penis for a while and see if it goes away"......seems ridiculous.

Anyway, I'd just like to ask your thoughts on what kind of problems could occur from "soft tissue damage" in the penis, caused by the chronic inflammation. Are we actually talking about inside the corpus cavernosum chambers?

Whether or not I get out of this you have helped me more than anyone else, EVER Counterso, and if this goes away and I luckily sidestep calamity.....you've literally saved my life where no one else, including medical professionals, did, could or would.....so you have my deepest thanks.
 
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vikvaughn replied to vikvaughn's response:
I basically cannot find any info on penile "tissue damage" or scarring that isn't peyronies.....
I have read a couple places that vasculitis (including lymph inflammation) can cause peyronies. Gladly that hasn't happened yet.
Also, there isn't much info other than people snapping their penises, rather than chronic inflammation that has lasted several years.
 
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counterso replied to vikvaughn's response:
What you'll find on chronic inflammation will probably never be specific to penises. That would probably only come from conversation with an experienced urologist. All things considered, chronic inflammation will pretty much have the same effect wherever it occurs in soft tissue. The degree to which your body is able to recover and repair such damage has to do with the severity, duration, and structures that are affected by the swelling. The more flexible the structures, the less pain will probably have occurred, and the less permanent any damage may be.

There's unlikely a solid rule to follow, only anecdotal experiences, as far as what you can expect. You may be able to infer some amount of probability of outcomes depending on how much physiology you are familiar with.

As most men probably don't like to talk about problems with their penises, the volume of information outside a specialist's office is expected to be quite low.

Glad to be of some help.
 
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vikvaughn replied to counterso's response:
no questions just a rant....So why does the medical community play this off as a non-issue happy little disease that just goes away on its own, no problem.
And you have me sitting here with a completely roasted dick, I haven't touched it in a month and a half and it still randomly aches flaccid, and I'm sure if I tried to have an erection it would just get half way there and start hurting...when its not somewhat bloated and swollen, it is curled up in the fetal position dying. (the latter being more comfortable) lol...
But if I went to the urologist today and said this, they would just say I'm nuts...just like the other times. Other than a bit of lymph buildup at the head, mine isn't obvious at all, but its very bad. And I have to say, the inflamed swollen feeling of the lymph is a really gross feeling, it feels like it will snap sometimes, very odd feeling like no other pain/discomfort that I can compare to.
One things for sure, this has been made exponentially worse by pressing into and massaging the problem spot, ONE TIME, in the flaccid state, than all the roughest masterbation of the past several years.....which is ironically, what some doctors on the net are telling people to do to help the problem. (why i did it)
They can't even come to a consensus on what to call it, its like we're in the 16th century.
And unfortunately, if you don't know at least one of the terms they call it you are unlikely to find it because any site that lists penis problems just have the usual suspects: Peyronies, priapism, balanitis, Phimosis etc......they do not list this, even Mondors goes unspoken of. Which is the main reason this happened to me, and I'm sure many others. I could not find the information, I thought I knew of every problem.
There needs to be a site that really explains this problem, without the crap.
I'm really just writing this so maybe some other poor sod doesn't have to go through this.....I've had my share of bad health problems, and the establishment are seriously underestimating this one. I just pray my penis isn't permanently screwed.
 
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counterso replied to vikvaughn's response:
Because it's not a disease, it's an injury, and perhaps in their minds self-inflicted? I don't know. Doctors generally care about things they can fix and that make money. This isn't either of those really. There are not as many altruistic physicians as we might like to imagine.

And unless they work in a densely populated area where people might actually seek treatment, the statistical likelihood that they have had to deal with a specific issue before is dramatically decreased.

Perhaps unfortunately, it is the patient's responsibility to demand care, not the doctor's responsibility to develop care.
 
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vikvaughn replied to counterso's response:
Counterso, I'm sorry to keep asking you questions but I'm so scared man, and your the only one that knows anything. It's now been a month and three weeks since I was pressing on that spot, I still cannot touch my penis flaccid at all without flaring it up. I urinate sitting down so I don't have to touch anything. my entire penis still gets swollen. I wake up in the night to erections that are very strange, they are either very hard but not in a good way, like really tense and brittle....not good at all. Or swollen night erections that feel bloated, the they feels, well, spongy and inflamed.
If I try to watch porn to see if erections still hurt, I can't get to like 20% without it hurting......it is just swollen. ( obviously I dont touch it).
Things keep getting better in the flaccid state extremely slowly, but it seems like every time I try to get erections they are possibly even worse.
I think my penis is ruined, but I don't see how I could have gone all this time inflaming it, and now just pressing on that spot flaccid has made everything exponentially worse, and done this.
If I had somehow popped or ripped this lymph "node" as you call them, and created scar tissue, would that be obvious????

I just don't know what to do, as you say, all a urologist will do if anything is give me antiinflammatories, I can't put that cream on it because touching it in the slightest will flare it up. But I mean, for almost 2 months my penis has been being destroyed by inflammation. I've been going crazy this whole time but now I'm really losing it.
As I've never heard of this happening to anyone, I'm in this alone, and don't know if it will ever work again, or if there's something I should be doing.


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