Peyronies Society Forums

Read This First => Introduce Yourself => Topic started by: GotHope77 on April 20, 2022, 10:38:19 PM

Title: Hello. Sorry to be here - but glad there is a place.
Post by: GotHope77 on April 20, 2022, 10:38:19 PM
Never thought I'd be the guy they talked about on the commercials.  I'm devastated, as many of you are. 
Age?  52
Doc's determination?  Only been able to consult via phone so far - but photos show confirmation.
How long had symptoms?  Since January when there was an injury (so 4 months).  It came on FAST - but took 3 months to start.  Seemed like overnight.
What are your symptoms?  Started with right curve w/dent 40 degrees, now progressing to upward as well about 15 degrees so far.
What treatments have you tried and what were the results?  Just stretching, castor oil, argnine,carnitine,gotu kola, was prescribed Pentox by family doc - but urologist says don't bother.  Uro recommends xiaflex - but the risks horrify me.  Cialis to keep going for now.
Do you have insurance or means to get medical treatment? yes.
where are you in dealing with the psychological aspects of Peyronies Disease?  not good.  I have other medical issues that came on around the same time & travel for work - so the stress is pretty bad.  When it rains  - it pours.
Are you in a relationship? My wife feels horrible - as it is possible she played a role in this on two specific instances. I don't think it was intentional - but I can identify the event the pain started.  I can still have sex - E.D. is minimal - but scared to.  Don't last long - but urologist prescribed cialis.
This is testing me in a lot of ways and I can't believe the psychological effects that so many of you are carrying - as now I am.
Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: Pfract on April 20, 2022, 11:17:02 PM
Hey Sam77.

Welcome aboard! You are not alone. It sucks to have this, but at least you are amongst folks that understand you. Please have a look at this link that has the most up to date treatment protocols and info: https://malefertilityandpeyroniesclinic.com/peyronies/treatments/

You can also schedule a free consultation with Dr Trost if you would like via his website. There is plenty of info there. Please also have a look at our survival guide here on the board. It is very good you are on Cialis.. but is it the daily 5mg? that is the best in your case and very easily tolerable.

You also have a partner that may have been the cause of this. I can imagine your conflict and dilemma. Don't shut her off. It is pretty ease to do that with this disease. Also.... if this may be an option as well: https://www.betterhelp.com/


Please stay with us.
Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: Mikel7 on April 21, 2022, 05:56:26 AM
Welcome Sam77 to the forum. You are among friends here as we have all started down the road you are on now. Don't despair as there is always hope and improvements in this race. One thing to adopt is the mindset that this is a marathon and not a sprint.

You should read up on Xiaflex as it has it does not work for some guys and is quite expensive. I would definitely recommend  starting traction and VED therapy. Also using heat really helped ease my pain and facilitated healing. Daily Cialis as Pfract suggested is a must if you can take it.  This can also be an opportunity for you and your wife to actually grow closer in your intimacy. Talking about this and sharing your feelings with her can bring you closer. There are a lot of creative ways to have sex and experimenting can be fun.

Do try and think positively each day and don't dwell on the negative. Get a plan of action and work it.  Reading the stories here and educate yourself more about this disease. Remember that we have Dr Trost here and he is a very gracious Dr and is a walking encyclopedia filled with useful knowledge. Don't ever give up!  :)

Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: LWillisjr on April 21, 2022, 08:56:34 AM
Sam77,

Your situation sounds similar to mine. Click on "My History" link below.
Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: GotHope77 on April 22, 2022, 12:46:13 AM
Thanks guys.  I appreciate the welcome.  I read all your posts. I have Kaiser insurance and there is only one Peyronie's doctor for all of Washington and Oregon. I basically spoke to the doc once on the phone, sent photos and she just told me to come in for a xiaflex injection.  But it seems pretty risky.  I am on cialis one a day 5mg.
Thanks again!
Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: GotHope77 on May 11, 2022, 09:31:28 PM

— Update-(5/11/22)
Today, I had my first Xiaflex injection.  It went well so far. Waiting for the bruising to begin.
Treatments I've tried/am currently on:
4/5/22 - started Pentoxifyllin (recommended by Dr. Ford)
4/5/22 - started Castor Oil + modeling (saw on Peyronies Disease Forum)
4/6/22 - started L Carnitine; Argnine; Gotu Kola; Saw Palmetto; Vit. E.; Vit. C; Quercitin; Q10;(saw on Peyronies Disease Forum)
4/11/22 - stopped Pentoxifyllin (as directed by Dr. Winter)
4/22/22 - added Iodoral 12.5mg Iodine tablets (saw on Peyronies Disease Forum). But i don't take every day because too much can be harmful to thyroid.
4/22/22 - started Pentoxifyllin again because I'm desperate & Peyronies Disease Forums recommend it.
4/22/22 - added topical Iodine (saw on Peyronies Disease forum).
4/25/22 - started using RestoreX device ($597.10) (as directed by Dr. Winter)
4/26/22 - tried DMSO topical + Iodine mix (saw on Peyronies Disease Forum) - but discontinued due to external skin damage.
4/27/22 - added Bromelain; Nettle; Ubiquinol supplements.
4/28/22 - changed from L Carnitine to Acetyl-L Carnitine.
5/11/22 - 1st Xiaflex injection .9g.  Stopped Cialis & Pentox for the day until after appt.
5/11/22- at the injection appt- urologist said I can stop taking Pentoxifylline.  She said it's old school and not enough evidence to prove it's better than modeling + Xiaflex shots.
5/11/22- I cannot say I've had improvements at all.  In fact, my upward curve has increased- despite all the supplements and RestoreX.


Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: FrankPD on May 11, 2022, 11:15:28 PM
Welcome.

We know the feeling.  Try and be as positive as you can.  It's extremely difficult but we gotta try.

I have my second opinion coming up June first from a urologist who is a Men's sexual health disfunction specialist.  From what I read, that's who we should be seeing.

Good luck.
Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: GotHope77 on May 14, 2022, 03:06:51 PM
Thank you Frank
Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: Bud luck on May 14, 2022, 04:05:37 PM
Welcome, you are not alone.
Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: GotHope77 on June 18, 2022, 12:04:33 PM
Quote from: GotHope77 on May 11, 2022, 09:31:28 PM
— Update-(5/11/22)
Today, I had my first Xiaflex injection.  It went well so far. Waiting for the bruising to begin.
Treatments I've tried/am currently on:
4/5/22 - started Pentoxifyllin (recommended by Dr. Ford)
4/5/22 - started Castor Oil + modeling (saw on Peyronies Disease Forum)
4/6/22 - started L Carnitine; Argnine; Gotu Kola; Saw Palmetto; Vit. E.; Vit. C; Quercitin; Q10;(saw on Peyronies Disease Forum)
4/11/22 - stopped Pentoxifyllin (as directed by Dr. Winter)
4/22/22 - added Iodoral 12.5mg Iodine tablets (saw on Peyronies Disease Forum). But i don't take every day because too much can be harmful to thyroid.
4/22/22 - started Pentoxifyllin again because I'm desperate & Peyronies Disease Forums recommend it.
4/22/22 - added topical Iodine (saw on Peyronies Disease forum).
4/25/22 - started using RestoreX device ($597.10) (as directed by Dr. Winter)
4/26/22 - tried DMSO topical + Iodine mix (saw on Peyronies Disease Forum) - but discontinued due to external skin damage.
4/27/22 - added Bromelain; Nettle; Ubiquinol supplements.
4/28/22 - changed from L Carnitine to Acetyl-L Carnitine.
5/11/22 - 1st Xiaflex injection .9g.  Stopped Cialis & Pentox for the day until after appt.
5/11/22- at the injection appt- urologist said I can stop taking Pentoxifylline.  She said it's old school and not enough evidence to prove it's better than modeling + Xiaflex shots.
5/11/22- I cannot say I've had improvements at all.  In fact, my upward curve has increased- despite all the supplements and RestoreX.
5/12/22- Second night after Xiaflex injection, nocturnal erection caused a "popping" sensation - accompanied by severe pain that made me sick to my stomach it was so bad.  Terrified.
5/13/22- Completely purple bruising.  Called advice nurse - spoke to another doc (since my doc is too busy with her podcast career/Dr. Ruth wannabe career) - he said that since I am not swelling anymore than prior - and since erections still happening - it's not fractured & doesn't need to be intervened.
5/20/22- Bruising is mostly gone.  Still sore.  Hurts to model.  No change in curve. 
UPDATE: 6/18/2022
6/11/2022- One month since 1st Xiaflex injection.  No change in curve at all.  Been taking all the supplements & modeling & Restorex device.  Nothing.
6/15/2022- 2nd Xiaflex injection today.  Same painful experience.  But at least I know what happens.  During the night I had that same "popping" noise accompanied by severe pain that made me nauseated.
6/18/2022- Completely purple & swollen.  Worse than 1st shot.  No severe pain last night - but still wake every hour upon erection.  I don't think I'll do another shot.  Take a month off - Until I get a new doctor.  I think this doctor has been injecting vertically - (vs. horizontally) into the veins/tube.  She could not explain what the "popping" + severe pain sensation was from.
Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: Dan1 on June 19, 2022, 06:38:27 AM
I'm sorry about what you're going through, but thank you so much for sharing.

I don't know that I'd get a second shot either. The popping noises very much confuse and scare me.

If you haven't already, one addition you can make is making yourself superhuman on nutrition for a few months. Only feed your body things that will go toward making healing easier. Pretty boring advise but...
Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: FrankPD on June 19, 2022, 11:36:44 PM
Welcome,

You are in the right place.  There's so much advice and different situations and experiences.

A great place to be.

All the best!

Title: Re: Hello. Sorry to be here - but glad there is a place.
Post by: Pfract on June 21, 2022, 12:37:19 AM
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