Seeking treatment with poor insurance/no money

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C_lab34

No matter how affluent you may be, penis problems wreak havoc on the psyche. Not having the money to even get a proper diagnosis or explore treatment options makes it an even messier ordeal. I'm 27 years old and I work a low paying job with little to no hope of any advancement. I've never been materialistic, and I'm easily content with few possessions. Nevertheless, I'm screwed now when it comes to costs of doctors visits and possible operations. I desperately want to go to the San Diego Institute of Sexual Medicine for a two day appointment that will finally give me an exhaustive diagnosis. It's 2600 dollars, not to mention the plane ticket and hotel. I can't pay for this, and on top of my bills, it will take me months to save up for it. That's how poor I am. I guess I could wait it out but I'm so tired and it's already a major strain just to go to work to make next to nothing every day.

I wanted to see if others are in a similar place with finances and what they are doing about it. Does anyone have an opinion on personal loans or credit cards? I'm willing to go into debt for this; it isn't ideal but I don't have many other options. The trouble there is that I have never taken out loans or used a credit card so technically I have bad or nonexistent credit, making it more difficult if not impossible to even take the step of burdening myself that way.  

dplookin

C_lab34...........You are not alone.  I also have limited finances due to divorce costs and a lack of jobs in San Diego over the last 2 decades.  It is a problem when there is no money.  I have tried Pentox, which is cheap, but could not handle the side effects, and I have tried a few other things that were cheap with no success.  I cannot afford to be buying all the supplements that everyone is using, and not even sure if it would my condition.  I really don't have an answer to your financial situation regarding the 2600 dollars, etc.  Not sure if going to that place will solve your problem.  They will probably just give you suggestions, which everyone else have already given on this forum, tell you to take vitamin E and hope the problem goes away, then give you a Bill.  My situation is also drastic due to my condition, but I don't think I would gamble on the San Diego Institute of Sexual Medicine solving your problem.  I live here in San Diego and I wouldn't even consider going there.  You need to keep reading what other people are doing here on the Forum and do the best you can with what little money you have.  I understand the depression that goes along with this problem, but you have a lot of time to work on this problem because you are still in your '20's...........good luck.

dplookin

C_lab34.............I just checked the Reviews from people who have gone to see Doctor Goldstein at the San Diego Institute of Sexual Medicine here in San Diego.  The average score for him is a little over 3 Stars out of a total of 5 Stars as a Rating.  One of the things they said is that his communication needs improvement.  Just FYI

nemo

C_lab34, dplookin is right - I wouldn't put too much time into aspiring to get an appt with anyone in hopes that it's going to dramatically impact your Peyronies Disease. The richest guy on this forum doesn't really have access to any better treatment in this regard than you do - everyone's pretty much using the same things: some oral stuff, maybe the VED or traction. There just isn't any silver bullet, and what works for some does nothing for others - that's true for every single treatment option available. (And sadly, what some of think "worked" for us may even be coincidental to the natural course of the disease. Sometimes it improves on its own terms.)

Peyronies Disease is generally fairly easily diagnosed - has your penis changed shape? Do you feel a lump or hard spot when it's flaccid? Do you have a bend, indentation, or constriction where you never had one before when getting erect or when fully erect?  It's not much more complicated than that - expensive tests like ultrasounds, etc., paint a more accurate picture, but only provide more definition on an image you already can see pretty well.  

So if you're pretty sure you have Peyronies Disease (see above), then I'd simply suggest the current bread and butter treatment of Pentox (fairly cheap from online phrarm), conservative VED use (many models of varying quality available), and low-dose daily Cialis (also available online pharm).  I'm not sure treatment from a high-priced clinic would offer much better at this point, and in fact, you may not even come away with treatment as good as the bread and butter treatment I've just described. It's a crap shoot with urologists concerning Peyronie's Disease.

Best,
Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

UrsusMinor

I have to say that I'm glad I didn't go through what seems to be the usual sequence:

1) Waiting a month for an appointment with a GP, who scratches his head and sends you to a urologist;
2) Waiting a month for the appointment with the urologist, who diagnoses Peyronie's, and tells you that the only real answer is surgery, so we should wait 12-18 months until it stabilizes;
3) When the condition worsens, months later, and the urologist suggests surgery, you finally are driven to find one of the very few real specialists in Peyronie's...

...who then tells you about some of the other options--all of which are fully described on this forum!

The Internet was the first place I went. I expect I'll see a specialist at some point--I've only been working on this for about 20 days now. And, although 90% of everything on the Internet is crap, it only took me a little while to find this place, and I'm glad I waited and took the time to search through these threads. I have more confidence in the knowledge and experience and critical thinking I find here than if you gave me a dozen random urologists.

So, when the time comes for me to leap into the gaping maw of the 'health care' establishment, I will already be taking a set of sensible measures, and will come armed with journal studies and statistics, mostly thanks to this forum.

----------------------

That's a digression, of course, but to answer your question, there are some reasonably cheap things you can do. My one cylinder Augusta OTC VED only cost $87 plus shipping. $87 isn't a negligible amount of money, but it's a lot less than $2,600 plus travel expenses.

Then, in terms of other things that have varying degrees of scientific support, but all have some, there's Pentox, low-dose Cialis, L-Arginine, CoQ10/Ubiquinol, Acetyl L-Carnitine. And hot baths/heating pads.

A good traction device, if you decide to go down that road, is more like $250-400. But still way cheaper than a visit to a Sexual Medicine Clinic!

As Nemo says, diagnosing Peyronie's often isn't all that hard. For me, I am "lucky" enough to present like a textbook case. In fact, on seeing some of the medical diagrams, I wondered how they had got cross-sectional diagrams of my dick--and if they shouldn't be paying me royalties.

So there are a lot of things that you can do that are as effective as what any doctor might offer, and not all that expensive. (Sure, good Ubiquinol isn't cheap, but it's not out of reach compared to the options you're talking about.)

But if you aren't dead sure it's Peyronie's, then it's another matter. But again, as Nemo and dplookin' say, you don't need a high-priced clinic for a Peyronie's diagnosis. You could probably get diagnosed in a standard physical exam--I believe all policies now cover that.

(Though a GP will probably send you on to a urologist anyhow. Be sure you arrive with printouts.)

welshwales

I totally agree with everything nemo said. Peyronies Disease is extremely under a researched and as a result there are very few options available other than pentox/cialis and VED therapy. It doesn't matter who you see, be it a family practitioner or a world renowned uro, unless you are opting for surgery the above is about all you have available in terms of medically endorsed treatment. If you have a situation where surgery is necessary for sexual activity, then go to the best uro you can afford.

james1947

C_lab34

Regarding doctor. I don't know where you are living, but if you are in the west coast, Dr. Lue will be your best option.
I don't understand why you should pay $2600 for diagnosis to Doctor Goldstein. We don't have any information from forum members regarding this doctor, He is on the list, but no information.
I know how you feel with no money, I am waiting more than two years to make an implant and trying other cheaper things that maybe will help. Each time I have some money, have something more important to take care.
Regarding VED, you bought one as I understand from one of your posts. In my opinion you should use it according to the forum protocol, not to over-pump.
Myself and other forum members buying Pentox and Cialis from:
https://www.riverpharmacy.ca/drug/pentoxifylline
If you will take 3*400mg daily, it will cost you $0.483 per day.
https://www.riverpharmacy.ca/drug/cialis
Cutting the 20 mg to four to get 5 mg, it come out $0.533 per day.
For intercourse, if you are using Cialis will be $2.131.
I am using Viagra for intercourse, cutting the 100 mg in two or four to get 25 & 50 mg so it is $2.88 per 100 mg (quantity of 40)
https://www.riverpharmacy.ca/drug/viagra
For CoQ10, just one example:
Specials - iHerb.com
You can see from the above that the daily cost of the treatment for VED, Pentox, low dose Cialis and CoQ10 is not much.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

C_lab34

Thanks for your replies everyone. The main reason I want to go to San Diego is that my case isn't a simple, obvious peyronies. Not saying that having such a case makes it easy, of course. But, I'm generally fibrotic and have erectile dysfunction. And I should say that the ED preceded the fibrosis, it has been lifelong. I need to know what exactly is happening with my penis and Dr. Goldstein is, as far as I can tell, one of the only doctors who will give me a doppler, a test for nerve function, a DIC (a more specific test for identifying venous leakage) and even a pelvic floor exam. It is truly the most exhaustive set of exams for any man suffering from any penile problem. The 2600 is for a two day appointment where you get an hour with a sex therapist, an hour with a physical therapist, and 90 minutes with Dr. Goldstein. If it turns out that I have a blocked or pinched artery, there are tests on the second day that can confirm my eligibility for a possible revascularization. Not that I'm pinning my hopes on such a procedure being right for me, but I want to be absolutely clear about what I have and what I can expect. Plus, I had a free consultation with Dr. Goldstein and he was by far the warmest and most humane doctor I've encountered in this ordeal.

James I will be following most if not all of what you've suggested in your post. I will be ordering from River pharmacy, and I can at least afford the generic cialis and the pentox. I'm already taking cialis and at least it helps me have sex and masturbate. The size loss and weird, hard, shrunken flaccid state still makes me want to cry every day, though. I'll probably try light VED again and maybe even traction soon.

Really, all of this is leading up to an implant. If I just had peyronies, a clear bend or maybe one of the hallmark effects like hourglassing or buckling(again, not saying that this is easy to deal with) I'd aggressively stick to the treatments and hope for the best. It's the ED that is really bringing me down, and that really has no cure outside of an implant. It's funny to me that implants are often considered radical, especially for younger men. With my way of thinking, implants make more sense for the younger man. They are more natural and spontaneous than pills, injections, and pumps. What would you rather have by your side as a 27 year old man out on the prowl on a saturday night? A vial of prostaglandin and syringes or a totally concealed mechanism in your body that allows you to get hard and stay that way for as long you like?  

james1947

I agree with you C_lab34 that for ED the best solution is an implant. That's why I decided to do it.
I would love to be bionic!!!
Just in the mean time I am trying other things because I don't have the money for the implant and those treatments may add to a good outcome from the implant (gaining back some of the 2" length lost and 1/2 girth lost)

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

UrsusMinor

Hey, C_lab--

Well, it could be that you don't have Peyronie's at all, but other issues. In which case all of our advice might be worthless. (On the other hand, most of it won't hurt you, either!)

Other than suggesting you head for North Dakota and get a high-paying job in the Bakken oil fields, something you should consider while saving your $2,600 is keeping track of clinical trials for ED, etc.

I had a friend who did this to track advanced treatments for his prostate cancer, and ended up enrolled in a trial of dendritic stem cell therapies at Rockefeller University Med School--something advanced that will cost a bazillion dollars if it is ever perfected. He got enrolled for free treatment. Of course, he had to arrange to get to NY several times, but there are actually free hotels that let people stay there if they are in NY to receive medical treatment. (Who knew?)

Here's one example of an ongoing clinical trial for ED:

--------------------------------------------

Autologous Adipose-Derived Stromal Cells Delivered Into the Corpus Cavernous in Patients With Erectile Dysfunction

This study is currently recruiting participants. (see Contacts and Locations)

Verified March 2014 by Ageless Regenerative Institute

Sponsor:

Ageless Regenerative Institute

Information provided by (Responsible Party):

Ageless Regenerative Institute

ClinicalTrials.gov Identifier:

NCT02087397

First received: March 12, 2014

Last updated: March 13, 2014

Last verified: March 2014

History of Changes

Full Text View
Tabular View
No Study Results Posted
Disclaimer
How to Read a Study Record

 Purpose


This will be an open-label, non-randomized, multi-center, patient sponsored study of Adipose-Derived Stem Cell (ASC) implantation delivered into the corpus cavernous in patients with Erectile Dysfunction.

The intent of this clinical study is to answer the questions: 1) Is the proposed treatment safe and 2) Is treatment effective in improving the disease pathology of patients with diagnosed Erectile Dysfunction.

ASCs will be collected from the patient's adipose-derived tissue (body fat). Using local anesthesia, Liposuction will be performed to collect the adipose tissue specimen. The adipose tissue is then transferred to the laboratory for separation of the adipose tissue derived stem cells. In addition, peripheral blood will be collected for isolation of platelet rich plasma, which are then combined with the ASC's for direct injection to the Corpus Cavernosum (Penis).
----------------------------------

Anyhow, if I were low on cash and also wanted the possibility of cutting-edge therapy, this sort of thing is something I might look into. Of course, it makes you a guinea pig; and, if the study is double-blind, you could end up in the placebo group; but it's something to think about.

These sorts of studies are tracked on an ongoing basis by the NIH at ClinicalTrials.gov. Just go to this link

https://clinicaltrials.gov/

and type in the sort of condition you are interested in (e.g. 'erectile dysfunction'). It then lists all the trials underway, including those that are still open for enrollment.
At the moment, 'erectile dysfunction' gives 365 hits--but that includes studies that are already full and underway, as well as studies that are just completed and analyzing their results for publication.

At the moment, if anyone cares, there are two studies recruiting specifically for Peyronie's--one using Botox (!), and the other using implantable testosterone plus vitamins:
-------------------------
Recruiting

H-22411: BOTOX® for Peyronie's Disease

Condition:
Peyronie's Disease

Interventions:

Drug: 100 units of BOTOX®;   Other: Preservative free normal saline

Recruiting

Testosterone Pellets Plus Vitamin D and E Versus Vitamin D and E Alone for the Treatment of Peyronie's Disease


Condition:

Peyronie's Disease

Interventions:

Drug: Vitamin D2;   Drug: Vitamin E;   Drug: Testosterone Pellets
-------------------

More details are available at the link above if anybody is interested...


skunkworks

Some may think this irresponsible advice, but screw waiting for an official diagnosis.

1. Pentox from Riverpharmacy

2. Coq10 from Iherb

3. Acetyl l-carnitine (ALC) from wherever is cheapest

Start the above treatments, sort out diagnosis when/if you can afford it. The cautious route would be to just use 2 and 3 till you get a diagnosis, all of them are very cheap, ALC especially.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

UrsusMinor

Quote from: skunkworks on May 31, 2014, 03:14:54 AM
Some may think this irresponsible advice, but screw waiting for an official diagnosis.

My feelings exactly, especially with Acetyl L Carnitine and CoQ10, which aren't going to have any serious side effects.

I don't have any experience with Pentox (yet), but it is a prescription drug. I defer to the veterans on this site as to the wisdom of starting Pentox without a high certainty that you actually have Peyronie's.  

james1947

Again, let's not forget that Pentox weakening the immune system.
Myself had many other benefits from Pentox, not just for Peyronies.
Stopped after 18 months because was getting sever flue almost every month.
Will be on it again in the future.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

C_lab34

My penis feels fibrotic, especially in the flaccid state. If I press into it, it takes a second to fill back up, where normally it would bounce right back. I don't know if this counts as Peyronies, and the doctor I've been seeing just says damage has been done but won't give me a doppler. I guess my hesitation/confusion lies in the efficacy of treatments for this specific condition. It seems that many of the therapies are more effective for localized scarring. I don't even know if there is a real difference between fibrosis and scarring. I'm thinking about trying pentox, but I am concerned about my platelets. I'm already on the low end, and I'm already taking supplements that thin the blood out. Does anyone have experience with pentox reducing fibrosis and not just working on a localized plaque? Sorry if this is getting off topic.  

dplookin

C_lab34..........I can't answer your question about Pentox reducing fibrosis, but I want to comment on your Blood Thinning and using Pentox.  Pentox was developed to Reconfigure the Blood so that it would improve blood circulation in the legs.  So, not sure if it is safe to take the Pentox and blood thinners at the same time..............Just My comment.  dplookin

james1947

Pentox is not a blood thinner in the regular way, lets say like Aspirin.
Pentox makes the red blood cells more flexible so they can enter the thinnest blood vessels.
The red cells are carrying to oxygen molecules, this is how it helps.
I used Pentox, same time used (and using) 100 mg Aspirin daily.

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

emasculated

@C_lab34: I'm at the same age as you and can understand your enthusiasm for a complete diagnosis. Since I live in Germany I have access to all medical equipment and the best doctors we have for free. And so I spent months traveling through the country to these doctors. 3 MRI's + 1 angiogram (no results), countless ultrasounds, palpations, specialists etc. later I'm not much wiser. I mean in the end all they found is scarring in the septum and on top which measures a few millimeters. And they can't do anything about it. It was a huge waste of time. I almost have the same symptoms as you. Size decrease and hard flaccid.
I would not put so much believe in an implant. Sure it does give you reliable erections. But it is not the same as a natural erection. It's a far cry from a natural erection, which is a pretty complicated process. For one thing it does not stand up as straight (180° angle), because the Buck's fascia which works in a natural erection is not supporting the erection. Secondly, the corpus spongiosum might not fill up which will cause the glans to stay soft. And thirdly it may be not as thick, if you don't get in implant which expands also in the other dimension. And I'm not talking about the risks here. But I guess as a last resort what else can we do...  
"Without health life is not life; it is only a state of languor and suffering - an image of death."

Old Man

Hey Guys:

Why don't all of you contemplating implant surgery or even considering it please send a PM to JackP? He had an implant done over 5 years ago now and has offered his history before and after the actual implant to assist others who might be interested in implant surgery.

His posts contain a link to his blog spot that gives a complete history of his implant experience. Also, he offers his assistance via PM for those who wish to remain private.

Due to some severe medical conditions, Jack  has asked me to relate to the forum about his problems. He also states that he will be very glad to lend his experience on implants to any and all who ask.

The AMS LGX 700 series model penile implant can and will allow blood flow into the glans portion of ones penis. However, this takes some time with patience to develop this feature of the implant. Jack can and will be very happy to relate his experience when asked, etc.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

james1947

I just want to add to Old Man post that if you will read the posts all the people on the forum that had implant are completely different than emasculated sentences in his last post.
Even the malleable semi rigid implants that are considered less good than the inflatable ones:
Penile Implant Blog - Peyronies Society Forums
AMS 700 LGX RELIABILITY - Peyronies Society Forums
Malleable semi rigid implants - Peyronies Society Forums
And other topics also

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum