Any help or advice as I am struggling

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Patience39

I am really new and worried.

I have peyronies and am constantly reading the forums for guidance and advice.
I don't know if I am in the acute phase or chronic.
My urologist told me to wait and see.

This was last October.
Since then I have used somaerect every day without success. In fact, my peyronies has got worse. I am in a lot of pain, my oenis retracts a lot, especially when I sit down.
It has also lost so much length and girth.
The skin is so loose and feels like I have plaque build up at the base and penis is now hourglassing.

I am not going to lie, it is making me feel less of a man and very depressed. My relationship is now over because  of it
39 Yr old male. Plaque curvature at 25° last October. VED somaerect, progressively getting worse.

Mikel7

Have you considered using a form of traction to help reduce further shrinking and loss of length? I also assume that you have read the survival guide -->https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057 . Have you trie dheat therapy to help with the pain?  Also if you are not happy with your Dr maybe you could look into getting another one.
Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Patience39

Mike7

Thank you for your reply. This is really useful.

I am a little new and unsure what phase I am in. My urologist was not helpful and I don't really know how to measure my progress or lack of.
Would you advise I do measurements.

Is traction recommended with VED?

I wasn't prescribed pentox. Are there successes with his treatment alongside Cialis and VED

Many thanks
39 Yr old male. Plaque curvature at 25° last October. VED somaerect, progressively getting worse.

Mikel7

The jury is still out on Pentox as there are some men who swear that it works and others no effect whatsoever.  I would first say that you could do some measurements of your stretched penis length and erect length as a starting point.  This can be of some help down the road to gauge size/length increase or decrease.  I would look into getting into another Dr, a peyronies specialist if you can find one. Search the forum as to the different ones if you are able to go to one.

If you are in pain you could assume that you are in the acute stage whether you were stable previously is of no concern.  Peyronies can flare up at different times for no apparent reason. Yes traction is recommended along with VED.  Search the forum and you will read about the VED protocol suggested here which has been tested and successful. You have your choice of the Penimaster Pro or the Restorex.  The actual Dr who created and tested the Restorex is Dr Trost and we are very fortunate to have him here with us as a Physician who answers members questions.

You must also keep reading and studying the forum and the survival guide. You need to be more educated yourself as there are not many urologists who are. Also keep a check on your emotions and mental health as there are many who let this completely destroy their lives.  Keep things in perspective and remeber that this is a marathon and not a sprint.  Things with the penis take time and then some more time. Mikel7
Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Bud luck

The only advice I can give you is to be very careful with traction, and do not inject P-shot, CO2, O-zone, Stem Cells ....Also do not do Shocked Waves or Gain Waves. I did spent $2000 on the P-shot and $800 on Shocked Waves just to get worse!!!!!.
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Patience39

Thanks for your advice Mike7 and Bud Luck.

Means a lot.

When you say, in stable phase previously is of no concern, what do you mean?
As it is quite hard to pinpoint when this happened. I can remember an incident a number of years ago when I was only have Erectile Dysfunction. No bend, and was taking Cialis.
My penis did bruise and went a Little black and I waited for the swelling to go down. But like I say, was that the start do you think?
If so, would that have been the acute phase. Seems odd how all of a sudden, I am starting probably since November last year to feel pain flaccid.

In reference to urologists, Dr Rowland Rees is the main urologist who specialises in peyronies in Hampshire UK.
I have gone to try and get a follow up but don't want to commit to spending more more when side story....I have custody battle through court for my little lad.

Problems seem to be mounting up and it is certainly having a huge impact on my mental health which I am trying to address. It's pretty hard (pun intended) to keep positive when I feel things are getting worse.

It is though reassuring to know others out there in my position of all ages. I'm sorry for all your pain and troubles.

Greatly appreciate the advice and support.

I am going to commit to taking Cialis at 2.5mg a day now I have a pill splitter and the 5mg played with my anxiety a lot.
Would you recommend COQ10. I know L-Arginine cannot be taken with cialis due to interactions.

Bud luck,
I have looked into Pshot, Shockwave and gainwave therapy last year.. was put of with costs, as well as duration of success. Can't be spending close to 2k every year and with little improvement.

Sorry to hear those treatments at a cost also made things worse. That isn't good to hear.. I'm sorry for that.
39 Yr old male. Plaque curvature at 25° last October. VED somaerect, progressively getting worse.

AskinForAFriend

In my opinion, being clinically depressed since a teenager and a lot of mental health assistance for cognitive distortion, what you are going through and your feelings are normal. To me, the toll it took on my mental health was the worst part because I started out fine for the first year and then it got worse very quickly after that, almost daily is how it felt, suffering from much of the same as you. Thankfully, I had a rock solid wife that understood it wasn't my fault, that we would stick with it through thick and thin for the last three years. I promised I would do everything and anything to make it better no matter what I went through.

You have a long road, Patience39, in my experience, it gets worse because you haven't found the right doctor to really start treating it, been there as well. But, don't beat yourself up. It isn't like you chose it, just unlucky with the rest of us. I did open the door for my wife to leave because I knew the road would be long...I didn't want to hold anyone back and only said if it were somehow reversed I would be here for her. No reason keeping somebody that is short-sighted on the matter and can't see past the issue. There is resolution, just takes time, pain, and then more time.

Personally, in your posi6, I wouldn6do anything more until I found a new doctor to help guide you. Causing more pain with self-care would make me fear I am in acute phase still and possibly making it worse. From what I understand, you need to get to chronic ohase so the disease settles down but....gosh....you have a lot of symptoms that I had in chronic phase so maybe you are there and just aggravating it.

Both Peyronie's "experts" or urologists I have seen that "specialize" in it wanted to start with Ziaflex first. Hard to argue with that even though the shots took it all out of me every time...but....ya just need to find your doctor to really start on the journey, in my opinion. For me, the journey was already really long and I didn't want to waste time on my own and needed to get going with someone that knows the disease better than I ever could.
Peyronie's Apr 2019 -- small rightward bend, Erectile Dysfunction -- Jan 2020 severe upward bend, Cialis started May 2020, Xiaflex started Jun 2020 -- little results after 3 rounds, 4th Round Xiaflex Jan 2021 -- began using RestoreX

Patience39

Thank you for all your advice.

It has got to a stage now I can't even masterbate.
The curvature to the left is insane and it was nothing before I started to use the pump.
I feel so deflated and helpless to be honest and feel like I am doing more damage. But between a rock and a hard place, because if I do nothing, maybe it I'll continue to get worse. Facing a running battle all the time as I am sure many people have experienced for years.

I can't ever imagine being with anyone ever again now as this seems to me like I am just going to progressively get worse and that is getting me really down.

Is there anyone I can reach out to here for advice.

I am currently taking cialis 2.5mg as 5 was making me feel very sick, and my body seems to tolerate 2, but not helping at all with erections.
39 Yr old male. Plaque curvature at 25° last October. VED somaerect, progressively getting worse.

Mr man

Give up somacare. It obviously is not helping. Take a break from therapy for a couple of weeks. I would try gentle manual traction to begin. See if it helps. Avoid masturbation while your recovering. Or sex. Remember penis needs rest to recover.

Get onto a healthy diet and sleep early and well. The basics are important. Read a lot on this site and have patience. Read the beginners guide.

I believe most guys recover with conservative treatments.
New routine. Daily traction with restorex 30 mins. With 45 min UV heat treatment using a lamp. Gone from being 30 degree bend to 30 degree curve. Giving peptides a go. Totally new treatment.

Mr man

If traction is helping. Try p.master pro or restorex. Traction is key to help recovery.
New routine. Daily traction with restorex 30 mins. With 45 min UV heat treatment using a lamp. Gone from being 30 degree bend to 30 degree curve. Giving peptides a go. Totally new treatment.

ohnoohno

Quote from: Mr man on October 21, 2022, 08:12:53 PM
Give up somacare. It obviously is not helping. Take a break from therapy for a couple of weeks. I would try gentle manual traction to begin. See if it helps. Avoid masturbation while your recovering. Or sex. Remember penis needs rest to recover.

Get onto a healthy diet and sleep early and well. The basics are important. Read a lot on this site and have patience. Read the beginners guide.

I believe most guys recover with conservative treatments.

Do you think manual traction in opposite direction to curve is safe?

28yo, diagnosed Peyronies Disease 13/6/22, 30dg curve to right/slightly down, Erectile Dysfunction, indentation, shortening 1inch+

urologist gave me cialis 5mg to take daily and SOMAcorrect

praying i can get this under control asap, restore length/avoid Erectile Dysfunction

richestorags

Sorry to hear what you are going through. It is easy to say this, however, don't give up. It looks like you are from the UK and Pathright Medical does not ship RestoreX devices there, however, they do appear on this board and perhaps you can obtain one from a private seller. Everyone is different and these are my results. You may see similar results with RestoreX, better results or no results at all. Here goes: I started using RestoreX 60 minutes per day coming up on two months ago. Since then my length has improved to the point where I am thinking about installing the extended rods. At first I could barely get to 45 degrees of counterbending and can now reliably get to 120 degrees. Is the journey over? No, far from it. But there is progress and that's a motivating factor.

I purchased a RestoreX because it was developed in conjunction with the Mayo Clinic, one of the finest medical institutions in the world. It's the only device I have seen (emphasis added) that enables counterbending. It exerts significant pulling power both on straight and counterbent traction which seems to be the reason it is effectve. I wouldn't call it painful but you sure as heck know it when spring tension is engaged.
Spontaneous Peyronies Disease onsite approx. 11/2021
Started diet, exercise and Peyronies Disease self care 08/2022:
-RestoreX 2 x per day
-Post-T-Vac 2 x per day
-Meds/Supplements: 5mg Tadalafil, l-arginine, citrulline, Vitamin E, Carnitine, castor oil and hope

Ballasto

Manual traction is a bad idea because you are factoring in human error. You can really hurt yourself.

Like another poster stated, rest is key and cannot be overemphasized. Not enough people stress that here.

If your ankle was sprained would you keep running on it?


ohnoohno

Quote from: Ballasto on November 11, 2022, 05:43:58 PM
Manual traction is a bad idea because you are factoring in human error. You can really hurt yourself.

Like another poster stated, rest is key and cannot be overemphasized. Not enough people stress that here.

If your ankle was sprained would you keep running on it?

I believe I made mine way worse due to manual traction, only afterwards I thought, maybe I should've just left it and maybe it wouldve healed..
28yo, diagnosed Peyronies Disease 13/6/22, 30dg curve to right/slightly down, Erectile Dysfunction, indentation, shortening 1inch+

urologist gave me cialis 5mg to take daily and SOMAcorrect

praying i can get this under control asap, restore length/avoid Erectile Dysfunction

ohnoohno

Quote from: Ballasto on November 11, 2022, 05:43:58 PM
Manual traction is a bad idea because you are factoring in human error. You can really hurt yourself.

Like another poster stated, rest is key and cannot be overemphasized. Not enough people stress that here.

If your ankle was sprained would you keep running on it?


Would you have any advice on what to do after already doign manual traction and potentially made it worse? My curve was like a slight tilt to the right to begin with now its definitely way more prominent after i did manual traction for few months.. i wish i just left it at the start..

Feel traction gave me a dent and made curve worse

how to combat this?
28yo, diagnosed Peyronies Disease 13/6/22, 30dg curve to right/slightly down, Erectile Dysfunction, indentation, shortening 1inch+

urologist gave me cialis 5mg to take daily and SOMAcorrect

praying i can get this under control asap, restore length/avoid Erectile Dysfunction

LWillisjr

Peyronies worsens during the active phase. Unfortunately there isn't any way to know if the traction made it worse of if it simply got worse on its own.
Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
66y/o  14 years Peyronies free
[URL="[url="http://www.peyroniesforum.net/index.php/topic,895.0.html"]http://www.peyroniesforum.net/index.php/topic,895.0.html[/url]"]My History

ohnoohno

Quote from: LWillisjr on November 14, 2022, 08:29:55 AM
Peyronies worsens during the active phase. Unfortunately there isn't any way to know if the traction made it worse of if it simply got worse on its own.


That's also the thing! Maybe it just got worse naturally.... AHHH so confusing
28yo, diagnosed Peyronies Disease 13/6/22, 30dg curve to right/slightly down, Erectile Dysfunction, indentation, shortening 1inch+

urologist gave me cialis 5mg to take daily and SOMAcorrect

praying i can get this under control asap, restore length/avoid Erectile Dysfunction

JohnVermont

You will improve!!!

Dude, I felt hopeless at one point too. My dick had gotten so small if I sat down on the toilet to pee it wouldn't even point down and I'd wind up peeing myself.

I got a Restorex device (I echo Rich's comment above about it enticing me because it was developed by a urologist in conjunction with the Mayo Clinic.)

I've had dramatic improvement using the device and now I discovered I'm improving by having lots of salmon! Eat foods that fight inflammation and I suggest a Restorex device.

I started out slowly and gradually did more and more.

I'm so grateful for Restorex. I still have some bend but the improvement has been dramatic.

55 yrs Old
Curve upwards, slight dent at base on right causing slight turn to the right
lost 2 inches.
Erectile Dysfunction, yes.
Using RestoreX traction device and liking it. I have hope.