[Question #5301] A wired HPV case

24 months ago

Hi there, I have been following your answers here for sometimes now and I didn't find answers related to my somewhat unconventional HPV case.

 

First, some background:

 

I was first diagnosed with anal genital warts 3 years ago. This was your average genital warts case. 8-10 Warts around the anus, no doctor would take a second look before diagnosing them as warts. As one would expect, 3 months after diagnosis, all warts disappeared by themselves and I couldn't be happier.

 

Might be worth it to mention that since my first diagnosis, I didn't have any sexual contact and still not planning to, not in the near future anyway.

 

Anyways, fast-forward 8 months and I notice one small bump on my penis. This didn't look like a standard GW, it was a single wart, dark colored, and would appear to be smaller when the skin around it is stretched.  In addition, it felt like extra skin rather than fleshy. Anyways, I freaked out and put ACV on it, (dump move from my side I know) and I ended up burning the whole area.

 

The area took about a month to heal, and of course, the wart came back with few others. This time looking like a wart.  The wart that came back is almost exactly the same size and shape as the previous one. The others, however, are very very very tiny and can't be seen with naked eyes. If you look at them, you will only see a slightly darkened area of skin, but when I take a high RES photo of the area, i can see countless small bumps.

 

Now, I went to 3 different doctors and all diagnosed it as a genital wart. They prescribed me Aldara at first, which, after 16 weeks of application, did exactly nothing. Then they prescribed Warticon, which, after 4 cycles of application, also did exactly nothing. I was growing suspicious and decided it might be time for more testing.

 

I did end up convincing a doctor to take a swap of the wart, (which I know isn't FDA approved for men but really wanted to know what kind of HPV I had and if it was covered by the vaccine) and they did take a swap from the wart and test (HPV TYPING BY SEQUENCING), which I believe covered types 16,18,31,33,35,39,45,51,52,56,58,59,68 and 6,11,42,43,44.

 

One more thing I would like to add is that I got my anal warts from a homosexual encounter that I know I got it from because warts appeared after 3-4 months after the encounter, warts appeared in my anus, and the fact that it was my first homosexual encounter ever. I still don't understand where the penile genital warts came from.

 

 

Given these facts:

1- Aldara didn't work

2- Warticon didn't work

3- test results are negative

4- it has been almost 3 years and the wart didn't spread, didn't get smaller, didn't get bigger, and basically remains unchanged.

5- The smaller warts surrounding it (the tiny ones not visible to the naked eye) somehow, according to my understanding, isn't very typical of HPV.

6- Anal warts (which I should have got at the same time as the penile wart) did regress and completely disappeared by themselves.

 

All the above, suggest that what I have might not be HPV after all.

 

But, at the same time, these facts:

 

1- 3 Different doctors have diagnosed it as genital warts

2- The wart did come back after ACV burn

3- the wart looks like your typical genital wart

4- Other smaller warts surround the bigger wart

5- I do have a history of HPV infection

 

Suggest a typical HPV infection.

 

I apologize for the long wall of text, I know I am reading too much into it, but what is stopping me from getting rid of the wart with cryotherapy or any other means, is the tiny tiny tiny clusters of what I believe are warts that are spread across my penis.

When you take a look at my penis, especially when not erected, you can very easily notice small patches of skin that are darker than the rest of the skin. Those patches are circular mostly, and when I take high RES images of them, I can see tiny bumps.

 

Basically, they will have to cryotherapy my whole penis to fix things really. I honestly don’t want to risk that much scarring.

 

Anyways, Now to my questions:

 

1-      What is your input on this? I understand you can't make a diagnosis, but given above information, will you be more inclined towards genital warts or something else? What else could resemble genital warts so much?

2-      Whats your take on PDT for GW treatment ?

Edward W. Hook M.D.
Edward W. Hook M.D.
24 months ago
Welcome to the forum.  I'll try to provide some information which I hope will help.  Your. Penile lesion may not be a wart.  Infact, from what you say, I ama bit skeptical that it is.  There are literally hundreds of other Dermatologic problems which can be mistaken for warts.  You do not mention what sort of doctors you saw previously but in this situation my advise is to find a dermatologist who you feel you can communicate with, describe your story so far, and see what he/she says.  The bumps and tiny lesions you have detected may be different processes from the discolorisations you mention.  Sorting this problem may take multiple visits to the same dermatologist to keep each clinician from needing to start over again.

I am not sure what you mean when you say PDT.  I suspect this is an abbreviation and while I could guess, it would be better for you to tell me what PDF stands for.  EWH
---
24 months ago
Hi doctor, thanks for getting back to me.

By PDT I meant to say Photo-dynamic Therapy. CDC seems to quote several studies with very high clearance rate here: https://www.cdc.gov/std/tg2015/evidence-tables/hpvtableevidence-genitalwarts-2015.pdf .. Though, it is still an off label treatment for GW which kinda of makes me skeptical about the whole thing. 

Seems like some Vietnamese and Chinese hospitals do provide this treatment option, which further increases my doubts as there must be a good reason as to why it is not yet the standard treatment for genital warts world wide especially with those very high clearance rates. 

BTW, all the doctors I have been to are dermatologists (and very experienced ones). Honestly, I wish doctors would start taking genital warts seriously at least for the negative psychological effect  they can have on the infected.

Honestly doctor, I do live in the most religious place on earth. I can't just show up with genital warts at the doctor's office. Last time, I traveled to a different country to see the doctors I mentioned earlier. I am studying my options, and going to china for PDT seems like a valid one. I was wondering if it is something you would recommend ? 

Regards,
 
Edward W. Hook M.D.
Edward W. Hook M.D.
24 months ago
Thanks for the clarification.  I personally have no experience with PDT but I did look at a number of articles on the subject.  The investigators, as one would predict, are enthusiastic about their results but a closer look at the data reveal that the numbers of persons treated in studies of PDT is relatively low and that cure rates are not 100% and do not differ much from some of the other therapies to which is was compared to.  Side effects did appear to be somewhat less common with PDT than aggressive cryo or other laser treatments.  

I'm pleased that you have seen dermatologists although it is not clear to me that you have seen the same ones more than once (in fact, it may be difficult to do if you must travel to seek care).  I do think you will need to see the same person repeatedly to get a good answer.

Most importantly however, I am still not sure that either the raised penile lesion that you describe, not the decolorizations are HPV.  They did not react when you sought a swab test, and they did not respond to recommended therapy.   If they are, they are unlikely to be of any health consequence to you or future sex partners.  My sincere advice is for you not to worry about this.  From the tone of your posts however, I do not think that is something that you are going to do.  If not, then I think the first think you do before seeking further treatment.   Particularly experimental treatment) is to get reliable, definitive diagnosis of one or both processes.  This can be done by a competent dermatologist using a small biopsy.  If you have knowledge of what is going on appropriate therapy can be pursued.  Right now you (and the doctors you have seen) are only guessing.

I hope this helps.  EWH
---
24 months ago
Hi doctor, thanks a lot for getting back to me. 

Is a biopsy test something standard ?  would most laboratories have the capabilities to do such tests ? for some reason, I have been under the impression that HPV testing isn't necessary for men and would serve no practical purpose. last time, I had to practically beg the doctor to do a swap test.

On the other hand, having those warts for this long window of time, their unresponsiveness to aldara and warticon, and their not so typical HPV appearance, warrants more investigation. 

I have had one of the dermatologist even suspect Bowenoid Papules. Which honestly could be a possibility here.

Now, while I understand the notion that, further testing probably won't change treatment options, I am growing curious as to what those bumps really are. 

The main reason I didn't purse medical treatments such as cryotherapy and laser, is the fact that I feel like, if the main wart disappears on its own, so will the other hyper-pigmented areas (probably?)

Having the single wart removed would still leave me with the question if they hyper-pigmented areas are HPV or not. 

So far, only one dermatologist confirmed that those hyper-pigmented areas are in fact HPV. Which puts me in an awkward position really, attacking all these areas (specially given the fact they are a bit big, probably 2 cm or so each) would sure mean risking side effects such as post inflammatory hyper-pigmentation.

I received this response from the doctor  who confirmed the hyper pigmented areas are HPV:

"Yes, it's a diffuse involvement with many smaller warts. I did noticed that earlier.  For such a diffuse involvement I would rather suggest Podophyllum resin application Or Electrosurgery for the bigger wart and Podophyllum resin for the remainder diffuse involvement with smaller warts."

I never heard of such "diffuse involvement". Anyways, given the fact that warticon didn't work, what else would you recommend ?

The main issue is, whenever I see a dermatologist about the issue, they suggest going straight to cryotherapy. When I ask about the "diffuse involvement" they say they will look it up under magnifying glass and if it is HPV, they will destroy it too. Which, i don't think is the best approach really.

I guess my question is, given all the information above and in my previous messages, would you please let me know what exactly to demand once in a dermatologist office ? should I ask for a biopsy test ? should I also request a biopsy test for each and every "diffuse involvment .. aka hyper-pigmented areas" ? should I request a specific treatment option ?  any other advised you might have for such a case ? 







--------------------------
Below text isn't related to My HPV case, just something I wanted to say for a long time, specially since this is my last response :D

I am not sure if you know this already, or if was done on purpose, but the way your website is structured, makes its content unindexable and unsearchable, specially by search engines.  This means that your answers won't rank on google and people can't find you when doing a google search.

I think many of the repeated questions are due to the fact that people can't search your website neither from google nor from within the site. 

Loading posts through AJAX means posts don't have their own URL, which not only make the site unindexable, but also people can't share your answers due to the lack of a post URL.

Also, navigating through posts is a nightmare. If this wasn't done on purpose, your web developer did a terrible job. 

I think you guys are doing a great job answering questions with science and experience, these answers are great and high authority content. It should be there on the firs page on google when someone searches for a related question. Changing your website structure will definitely get you more audience, more traffic, more exposure, and ultimately, spread more knowledge. 



Edward W. Hook M.D.
Edward W. Hook M.D.
24 months ago
Thanks for your carefully thought out follow-up.  I'll try to help.  Your case is not typical and that is the reason I suggested seeking a biopsy.  I am not convinced that your hyperpigmented areas and the wart-like lesion you report are not necessary the same thing and my sense is that this is troublesome to you.  For these reasons I suggested the biopsy, perhaps of both lesions.  It sounds to me like the dermatologists you have sought care from are not sure what this is - another reason I suggested the biopsy. If you want to do something, and it sounds like you do, continuing to guess is probably not a good idea.  

Thanks as well for your input on the site.  We too have been frustrated by it and agree with you regarding all of the shortcomings you mention.  I will forward it on to the administrators.  EWH
---