Peyronies Society Forums

Read This First => Introduce Yourself => Topic started by: baseballfan on June 04, 2021, 08:07:29 PM

Title: First Post - Need Help
Post by: baseballfan on June 04, 2021, 08:07:29 PM
Hello everyone,

I’ll follow the guidance and try to go to the right sections for help, but for now here is my situation.

I’m 53 and my Peyronie’s started about 13 years ago right after an injury during rough masturbation.

Right after, had pain during erections, a few days after felt a pea size lump when pressing my penis, then after about 2 weeks, one day noticed my penis got erect only from the base to about 2/3 of size (distal 1/3 and glans had shrunk and were flaccid) Scary and sad day!

It then went to a series of bents. First to the right, then right/upwards and now it's just upward. It starts bending right where the glans starts so I feel my scar tissue is right at the end of the corpus cavernosum.

I did not go to a Urologist initially (don’t ask) but read a lot and decided to let the condition run it’s course and get to the stable phase. Then I tried traction with PMP for a while and I think it helped in recovering some of the size I had lost. But it did not help with what bothers me the most about it and why I’m here: soft glans.

I did go recently to a urologist but got the impression he was not too versed in Peyronie’s and offered no real solutions other than recommend VED therapy. I do have insurance. Xiaflex scares the hell out of me.

I am in a relationship right now but it is about to end, I think in part because the insecurities this condition has given me has made me act in ways that has killed the love my partner felt for me before.

I read the “Survival Guide” and have a question: is the PAV cocktail any good at this stage of my Peyronie’s?

Thank you in advance for any answers and/or suggestions.
Title: Re: First Post - Need Help
Post by: Hawk on June 04, 2021, 09:22:15 PM
I am in a relationship right now, but it is about to end, I think in part because the insecurities this condition has given me has made me act in ways that has killed the love my partner felt for me before.

Baseball fan, I will start with the most important thing in your post and what happens to be the thing you can do the most about.  Let's be honest.  It is the thing you have total control over, and there is a possibility it is the only thing in your post you have ANY control over.  To suggest that Peyronies Disease "MADE" me act in any way is copout men have to face.  If your actions are ruining your life and hurting others, then that should be what you are educating yourself about and the thing you work to fix first.

On the subject of the PAV cocktail.  There is disagreement in the Peyronies Disease community among very competent doctors whether the PAV cocktail is effective at any stage of Peyronies Disease.  I think it is safe enough it is worth a try.  We will probably modify the survival guide to reflect that information.  The one study has been pulled as being either poorly or fraudulently conducted.

I am nothing but a former Peyronies Disease patient, but I would try a 3 cylinder VED if it were me.  Your plaque placement makes it tough for traction since most devices cinch right in that area.  An implant will do nothing to resolve glans issues, and the cylinders exert little straightening at the tips.

That seems to leave you with VED, hyperthermia, Xiaflex and trying the PAV cocktail. None of these will make as big of a contribution to a decent happy life as some sound Cognitive Behavioural Therapy from a very good counselor.


Title: Re: First Post - Need Help
Post by: baseballfan on June 04, 2021, 09:58:22 PM
Hello Hawk,

First of all thanks so much for your quick response.

Trust me, I totally agree with you that I should have worked before on the emotional issues; I’m doing so now. So I’ll work on both the mental and physical issues going forward. Thanks for the advice.

I’ll proceed with VED after asking a few questions in that section.

I know hyperthermia has to do with heat but, is there a section in the forum that explains in detail any protocol for that?

Thank you again.
Title: Re: First Post - Need Help
Post by: Hawk on June 04, 2021, 10:21:38 PM
It does not have its own section but is scattered with other topics in the alternative treatment section.  There is a rather low thermal threshold above which heat can be damaging so use caution and read before you start.

https://www.peyroniesforum.net/index.php/board,21.0.html
Title: Re: First Post - Need Help
Post by: baseballfan on June 04, 2021, 10:26:37 PM
Thanks!
Title: Re: First Post - Need Help
Post by: Hawk on June 04, 2021, 10:38:12 PM
One of your best resources is learning to use the forum search feature.
Title: Re: First Post - Need Help
Post by: Mikel7 on June 05, 2021, 06:09:52 AM
Welcome baseballfan!  It sounds like you have a similiar injury as I have had to deal with.  I had a pea size lump towards my glans that caused scarring around the tip internally. It caused an upward curve of about 30-45*.  I did use the PAV cocktail and it appeared to slow down the progression but I had to stop all meds because of SHL.
 I do employ the PMP and the VED therapy and have had good success. I also use heat therapy which I closely monitor with a digital thermometor. Doing nothing in your case is not wise . Read the survival guide and the VED protocol put forth in the forum.  So are you a Cubbies fan?  :)  Mikel7
Title: Re: First Post - Need Help
Post by: Pfract on June 05, 2021, 08:08:33 AM
baseballfan:

Welcome aboard. Going to a Urologist that specializes in Peyronies is key in improving your outcome. In my opinion, you should get in contact with Dr. Landon Trost. https://malefertilityandpeyroniesclinic.com/peyronies/appointments/

He is very easily accessible and very knowledgeable on the matter. He has plenty of information out there, both on xiaflex, traction and peyronies itself. You can also run a search on the board on his name, since you like to read.

Title: Re: First Post - Need Help
Post by: baseballfan on June 05, 2021, 12:31:58 PM
hawk: Yes I do use the search feature, thanks.

mikel7: I’m not sure at the stable phase if the PAV cocktail is good for me anymore? This first happened about 13 years ago. I have read the survival guide and have been reading all morning. I was adviced that since my injury is at the end of Corpora Cavernosa the small cylinder option might not do much for me. So I’m thinking single cylinder VED for my cold glans situation. Can I PM you about your method for heat terapy?
>>Red Sox fan ;)<<

pfract: I will look into Dr Landon although they don’t have an office here in South Florida. Xiaflex scares me; my bent doesn’t bother me since its mostly just the glans pointing up. You know, the risk vs. reward thing. But I will definitely keep researching about a Peyronie’s specialist close to me.

To all: Is this below a good option for VED?

https://www.ebay.com/itm/194176221773?_trkparms=aid%3D1110006%26algo%3DHOMESPLICE.SIM%26ao%3D1%26asc%3D20200818143230%26meid%3D2cd502678f0e4dae867240c236515e3e%26pid%3D101224%26rk%3D2%26rkt%3D5%26sd%3D324653472456%26itm%3D194176221773%26pmt%3D0%26noa%3D1%26pg%3D2047675%26algv%3DDefaultOrganic&_trksid=p2047675.c101224.m-1


Thank you so much to you all for taking the time to respond to my post!
Title: Re: First Post - Need Help
Post by: BrettC on June 05, 2021, 01:10:11 PM
Hey there baseball fan! 

I ended up going through at least 4 urologists before landing on the one I am using now to treat my Peyronie's.  I found that all the doctors have their own opinions on what is best, and how to treat this.  I say find one that makes you feel comfortable, and one that is willing to work with you in the directions you would like to explore. 

Xiaflex shouldn't scare you.  I have been through 4 rounds of two shots each so far.  The shots themselves are not all that painful.  The only downside is some swelling which looks bad but subsides quickly enough.  With an upward curve near your base that may be your best option. 

The PAV cocktail is something I have been doing for a long time now (well over a year).  I don't think it has done much for me, but I always encourage people to try it.  The thing is you are looking for what will work for you individually. 
Title: Re: First Post - Need Help
Post by: baseballfan on June 05, 2021, 07:58:16 PM
Well, if i remember correctly this is the last message allowed in my introduction post so I'll see you all in the other sections eventually I guess. Thank you again for your kind messages of help.

BrettC: My thing with Xiaflex is that I understand there are risks involved of even fractures of the penis. Even if the odds of that happening are minimal, I don't want to take that risk being that I'm able to have comfortable enough sex as I am right now. My curve is where glans starts, not at the base, as you mentioned.

The soft glans issue is bothersome to me because I get very self conscious when the female is doing oral sex, and that makes me lose hardness elsewhere sometimes. I also feel being soft it doesn't provide enough friction in the right places (G spot, etc).

Xiaflex as I understand loosens the scar/plaque in order to reduce the bent, and my bent doesn't really bother me. I also understand that the glans penis doesn't get scar tissue so Xiaflex wouldn't to any good to that part, i think. So again, risk vs. reward.

Thanks a lot for taking the time to respond to my post and your advice.


Title: Re: First Post - Need Help
Post by: Benraycamp0 on June 05, 2021, 08:37:05 PM
 Introductory topics are limited to 10 replies. As such, this is now locked but please feel free to post questions in the appropriate boards on the forum!