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5+ Year Nightmare - Superficial Dorsal Vein Thrombosis

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Jared556

Hi all,

My name is Jared and I'm 30. I am writing this post not just to help me rationalize pursuing a surgical treatment option, but also to help anyone else who has found himself trawling this forum while hoping to understand this cruel condition that is sometimes misdiagnosed as Peyronie's or can actually cause Peyronie's. My experience so far has led me to the same doctors, treatment options, and academic resources that I have seen mentioned here.

In late 2017/early 2018, I was under a lot of stress at work. Over a period of about two weeks, I had a recurring episode where as soon as I attempted to fall asleep, I'd have a full body spasm where my veins would constrict and my heart would race (I have no underlying conditions and am physically fit). This happened maybe 5 or 6 nights then never happened again. During these episodes, my penis would become so rigidly erect and so hard that it would be somewhat painful. Once, maybe twice, I masturbated. Everything was so constricted that my ejaculate was like a high-speed projectile. Something was obviously wrong, but these nighttime episodes subsided. Just days after my sleep normalized, I noticed a tingling sensation while urinating. Within a month or so, my superficial dorsal vein had become hard and cordlike--textbook thrombosis (blood clot).

I suppose you could draw the "cause" of this to a short bout of Mondor's Disease triggered by traumatic stress. There were no other risk factors aside from the fact that I probably had not had sex or masturbated for several weeks up to that specific point in time (some studies offhandedly mention prolonged abstinence as a risk factor). I don't consider the Mondor's diagnosis important since it is not / has not been chronic.

There was initially no issue with any functions, comfort, sensation, really no concern at all. But, as weeks turned to months and I realized that it was not going to "spontaneously resolve," I started to get nervous. The hardness and rigidity of the vein (on the top of the penis) while erect was pulling my penis toward my belly button with great force. This was starting to noticeably alter the angle of the mid-point of the shaft, as well as the angle of base to shaft. Still, well over a year passed, sex was fine though the angles were changing slightly, masturbation was normal though sometimes a little more sensitive than usual, sometimes there was some dull pain, but there was really no impact on my life.

In 2019, I ended up in an Urgent Care for some other freak injury, and mentioned it to the doctor. She said well it does sound like a blood clot but that type of thing is extremely rare for your age group, so here's a referral to a Urologist in Chicago.

I went to the Urologist and the PA was like "Let me get this straight, you're here because you got super hard-ons and now you think you have a blood clot?" And I responded yes, please send in the doctor. The doctor arrived, I tried to unpack my story regarding changes in curvature and my fear that this could turn into something more serious. He tried to feel for the vein while flaccid (I'm a grower), and proclaimed that it wasn't a blood clot, I had Peyronie's, but that I was in luck, because one of the best Peyronie's doctors in the world was based in Chicago in his Urology group.

With crazy luck, I was able to see Dr. Larry Levine in Chicago just one month later. I see him mentioned all over this forum and I have a lot of respect for him.

I went in and explained everything. He induced an erection and took an ultrasound. His diagnosis was that there was no evidence of peyronie's, in terms of plaque or scarring, but that, yes, I did have a thrombosed vein. He repeated what most studies suggest, that the condition is often self-limiting and sometimes can even spontaneously resolve. He said that I was likely past the point of pills and creams, and that the two realistic options were to let it go but continue monitoring it, or have the vein stripped. I asked about a thrombectomy and he said that it was not possible because the vein was dead. He also mentioned that the vein stripping likely wouldn't be covered by insurance since it's a semi-controversial treatment for Erectile Dysfunction and that there is so little precedent for this treatment that he couldn't really guarantee that the stripping would resolve my issues. I chose to wait and see.

As 2019 turned into 2020, things got worse. Certain sex positions became more difficult, the top of my penis became very sensitive to touch, there started to be regular  jolts of very acute pain, and the vein started to put pressure on my urethra. Sometimes ejaculation was painful, urinating became a bit more difficult with a bit more dribble and always a lot more "shaking" required. In addition, the deep dorsal vein was overworked, and I started to have minor Erectile Dysfunction, mainly when it came to staying hard especially while putting condoms on since the top of the penis was so sensitive.

In 2020, I read all the research available and contacted a few other Urologists, taking advantage of virtual appointments. In summary, the few I did manage to speak with said the same thing: "your condition is extremely rare, I've never seen it or treated it. I have immense respect for Dr. Levine as a leader in this field, and trust his judgement regarding treatment options."

In late 2020 I saw Dr. Levine again regarding the vein stripping. He reiterated that it was a viable option. He also highlighted that I'd have to use the Penimaster for traction during recovery. I regarded this as impossible since I'm such a grower, and the chance of having further complications along with other doubts started to debase my confidence. I scheduled the appointment and was prepared to pay around $8,000 out of pocket for the operation. I was told I would receive a "packet" that would answer my remaining questions. After I finally received the packet, it was almost entirely logistical info and info about covid. I was extremely nervous, so two weeks before the surgery, I canceled it.

In 2021 and 2022 things gradually became worse. The angle upward is more rigid, and there is now a slight curve to the right developing as the vein retracts further (though, to be clear, it is still in the realm of 'functional' since the angle is upward and not downward). Sleep is now sometimes interrupted by painful nocturnal erections. I have to set "ground rules" with women regarding not aggressively grabbing my penis. More pain during the day and increased pressure while urinating. Worse Erectile Dysfunction. It's a crap shoot as to whether ejaculation is painful, and the rare wet dream can be so jarring that I wake up crying in pain.

After reading more research, I sought out a vascular specialist at Northwestern who specialized in blood clots. They took another scan which again confirmed that the superficial dorsal vein was thrombosed but the deep dorsal vein was fine. The PA there was absolutely wonderful and the doctor even asked his network if anyone had experience with the condition. Their guidance was that any of the typical minimally-invasive treatment options they offer would not be effective due to how long it had been, and that the vein likely could not be salvaged. A thrombectomy was not a possibility.

I now find myself desperate to end this nightmarish chapter of my life. If there is one positive, it's that I've channeled the stress from this ailment into advancing my career and business prospects, and am now in a position where I can travel anywhere and pay a lot more for treatment than I could have back in 2017.

My primary goal is this: I want to find a physician (vascular specialist or urologist) who will consider performing a thrombectomy with the goal of the vein becoming functional again. Based on extensive research, the only doctor I can find who has performed this operation is Dr. Hagen Loertzer in Germany. Despite others insisting that the vein is not able to recover, I infer that it is extremely unlikely that any of his patients had a thrombectomy performed extremely soon after the clot forming. My logic is that there must be a long-ish grace period during which thrombectomies are viable, and that since this isn't a terrible surgery (compared to a stripping), a surgeon could make the incision, decide that it isn't viable, and then end the surgery with very minor side effects or recovery time.

My secondary goal is to understand if there are any other minimally invasive options, such as clot-buster injections, and how I can find a specialist to administer or assess these. In absence of these options, if I do proceed with the vein stripping, what do I need to know? Are there other doctors I should consider? Is there a chance that a botched surgery completely ruins my life? My prevailing thought has been that I'd rather deal with the gradual degradation of my condition as opposed to risking severe pain when exercising, sleeping, or having sex.

I want to say thank you for reading my story. If you have any leads or any information based on research or personal experience, please take a moment to respond. There must be others out there in a similar position.

bentoboy

Hi there,

A super interesting post and very helpful too. Also, I'm sorry to hear that you've been through all this nightmare and hopefully you'll get better soon.

I have a somewhat similar problem. I developed Peyronies a few years ago, which started with a bit of plaque here and there but then there was this bizarre 'cord-tightening'. I had an appointment with my urologist to discuss this problem, and he suggested that it must've been the Mondor disease, and it would've resolved in a few months. Months passed, but the condition didn't go away. Meanwhile, it has caused some kind of 'double curvature' where the plaque pulls the penis to the left (closer to the glans) and then the cord pulls it to the right at the base.

Sex is still possible but the 'double curvature' makes it more and more problematic. Do you think I should have another appointment with my urologist and do an ultrasound? Are there any other ways to get checked for blood clots?

Thanks a lot
26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

Pfract

Hey Jared556:

I am not doubting you are having difficulties with your erections or that you are having something in your penis. But self diagnosing, without medical background (which i don't think you have?) is not a good thing. You may think that it is your vein thrombosed, when in reality it could be something else causing your issues. Also, from what i read about this condition Dr. Levine's diagnosis and response seems to be accurate.

In my opinion, you should look for a urologist/andrologist that specializes in microvascular surgery, who would be able to do a full diagnostic to your penis and venous situation. There are not many around that do these types of studies.

Look here: https://www.sandiegosexualmedicine.com/meet-dr-goldstein

https://www.bumc.bu.edu/sexualmedicine/patientinformation-physicians/penile-revascularization-surgery/

Even if this is not your situation, you need to be properly examined and then, take it from there. Because even if you had the vein like that, it wouldn't cause your penis to bend like in Peyronies.
Penile fracture during sex, Portugal 2014 - [url=http://www.peyroniesforum.net/index.php/topic,11131.0.html]Penile Implant Forum -Tech info compilation and Index - Peyronies Society Forums[/url]

Jared556

Hey Pfract, thanks for the response and thanks for the work you do moderating this forum. I have read some of your posts and they are really helpful even as they describe other conditions and ailments. Thanks additionally for the two resources you've provided, I hadn't encountered either before and I will look into them soon.

I would like to set straight my position on the below quote, because I've heard it before and I desperately need to disseminate what I've experienced.

Quote from: Pfract on November 20, 2022, 11:06:47 PM
Because even if you had the vein like that, it wouldn't cause your penis to bend like in Peyronies.

This is a misunderstanding guided by the absence of clinical research or reported symptoms. Mentioning the changes in curvature of shaft and base angle seems to put all doctors on the defensive "it can't possibly be..." because there is no research covering it. I do not want this point to get muddled: the curvature of the shaft of my penis, and the angle of the base-shaft of penis have changed, noticeably and in line with the "pulling force", over the last 4+ years, solely due to the presence of a stiff, thrombosed dorsal vein which ever-so-gradually shrinks over time and slightly realigns the soft tissue during nocturnal erections.

While any Dr. Levine diagnosis tends to be treated as gospel, we only discussed thrombectomies after I questioned him about the procedure from several different angles. If the conversation was along the lines of "... and you may be wondering if we can attempt to remove the clot. Though I've performed this procedure before, reasons x, y, and z make me think it isn't a good option for you at this time." Instead, the conversation was more like "Hey doctor, uh... I read studies that mention thrombectomies, or removing the blood clot. Why can't we do that?" "Because the vein is dead!" Now, in his defense, he has way bigger fish to fry and regularly performs truly extraordinary operations, but I was left with the impression that he had never performed a thrombectomy and possibly--possibly--was not familiar with it as a treatment option. He did not want to engage on the topic at all, which is one of the reasons I canceled the surgery.

---

To Bentoboy, thanks for your response as well. If you can plainly feel that you have a thrombosed vein that is exerting "pulling" force, it sounds exactly like what I've been suffering from. My opinion is that this "Penile Mondor's" diagnosis is meaningless, but it is something all urologists have to learn and seems to be the extreme of many a doctor's depth. To my way of thinking, it doesn't matter if you put a title on it or not. If the cause is isolated (you don't have a general problem with clotting), then the focus should be on treating the fact that you have a blood clot in your penis that may not spontaneously resolve.

In your case, a doppler ultrasound will help pinpoint the vein. However, based on experience, I'd recommend clarifying that you are not just looking for evidence of one vein being thrombosed, but which vein is thrombosed. I don't know enough about Peyronie's to speculate as to whether this may be a chicken and egg problem of one thing causing the other.