Newly diagnosed, not convinced though

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Melko321

Hi, everyone, thank you for this forum.

I am copying my own post from Reddit, sorry in advance for any illogical things or things missing, they advised me to come here for your opinion.

So, my story - I  am 33, already suffering from multiple sclerosis and, with it, ED.

I've been having painful erections for 5-6 days now. I've seen two urologists, one didn't say anything about a possible cause, just wrote a prescription for painkillers and Cialis, and said to come back in 3 months. The other urologist, after examination, diagnosed me with Peyroni. The ultrasound was negative for plaques both times, the other doctor made his diagnosis through conversation and palpating.

I have a few questions, if that's OK.

1. what is the prognosis of Peyronie? What I want to know is whether it is possible to have sex with this condition, or if I have to say goodbye to sex, which would be terrible.

2. The internet is very confusing. Somewhere it says that "prompt treatment is important, especially in the acute phase", while both of my doctors said there is not much that can be done in the acute phase. Which is it, then? Can I do something about this or can't I?

3.Another thing that confuses me is this: the second doctor first said that my condition is probably just an injury, and that I should refrain from sex until it passes, but later changed his mind and said that I should strive to get erections and have sex, in order to pump blood into my penis and speed up the healing proccess. Now I don't know what to do. Should I rest, or should I keep my penis active...

4. Connecting to question no3 - I do not understand the therapy I was prescribed - painkillers. I don't see the point in masking my pain and forcing my penis to work, when underneath something is obviously broken. Has anyone else been prescribed painkillers and nothing else except Cialis?

5. Finally, regarding Cialis - I've read that there might be some benefit in using PDE5 inhibitors like Viagra and Cialis. However, even with Cialis I donpt get much of an erection. Is it still beneficial or do I have to get an erection in order to get some benefit out of it. In other words, is it beneficial due because it helps to get an erection, and that erection gets blood pumping, or is it beneficial for some other reason?

Thanks to anyone who answers.

Melko.
Male, 33, recentl diagnosed, still very confused. Taking painkillers and Cialis for condition, so far no dice. Married, no kids, suffering from MS and ED already before. Currently waiting for control to see what happens next.

Benraycamp0

Hey! We were chatting on Reddit, glad you decided to join in! I'll let others chime in on your case since you heard some of my thoughts so far.

I know I linked you the Survival Guide already, but here it is just in case -  https://www.peyroniesforum.net/index.php?topic=3180.0

Also one more thing! Could you please take a minute to fill out your signature line? It's hard to remember your case details out of 20,000 members. You can find instructions here - https://www.peyroniesforum.net/index.php/topic,10819.0.html
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Melko321

Oh, hi. :)

Wow, 20000+ members. Feels good to know I'm not alone.
Sure, I will fill out the form.

Good to have you guys for support, there is really surprisingly little info online for a condition that isn't THAT rare.
Male, 33, recentl diagnosed, still very confused. Taking painkillers and Cialis for condition, so far no dice. Married, no kids, suffering from MS and ED already before. Currently waiting for control to see what happens next.

Mikel7

Welcome Melko321 to the forum!  Yes it is true that the general info floating around on the internet is very confusing and misleading.  Here though you will find answers and info from the largest and best organized forum regarding peyronies.  Read the survival guide and read it again. It can be very difficult in finding a peyronies specialist. Just because they are a urologist doesn't mean a lot.

Sorry to hear about your MS I hope you have a great Dr treating you for it.

If you actually have peyronies starting traction in the acute stage is what I would start right away. Cialis or similar is good at healing the penis and keeps fresh oxygenated blood in it and combats fibrosis. You should be gentle with your penis and you will be able to tell in a short time whether it is healing up or lingering. I would say you should limit sex and be gentle when you do have it. When I first had pain and then found a lump it persisted for months so I knew it wasn't a slow healing injury but rather peyronies. Your painkillers wil do just that and that only.  Read and search the forum and you will find other  men with similar experiences.  :)  Mikel7
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

Hawk

Welcome Melko,  You have found the best patient support and information on the internet. We are glad you found us. If you can not get any daytime or nighttime erections (NTE's), I would recommend a few steps to get the needed blood flow.

The penis needs oxygen which comes from erections to maintain healthy tissue. That is why males routinely have night-time erections (NTE's). With an absence of blood flow, it sets up conditions for plaque or fibrosis that if present will cause a loss in size and/or deformity in the way of dents and bends. At times such deformity can become severe.

The goal has to be to restore erections with any method that is not itself damaging to the penis. I would recommend starting with the following:

Daily low-dose Cialis is designed to support erections on demand rather than taking a pill only for intimacy. (if may have some benefit beyond erectionsfor Peyronies Disease).

I would add to this over-the-counter L-Arginine 1,000 - 5,000 mg a day.  Divide the dose and helps to have a little food in your stomach. L-Arginine is a vasodilator that can help by itself but works synergistically with PDE5 Inhibitors like Cialis, Levitra, etc.

I would strongly consider adding 1/2 of a 50 Mg Trazadone with a light snack before bedtime. Food helps with absorption. Trazadone is an old antidepressant. When prescribed for depression it is dosed as high as 600 mg daily.  It is often prescribed at 25 - 50 mg for insomnia.  - Trazadone has a side-effect of causing NTE's. In fact in healthy men at high doses, it can cause priapism, a condition of a prolonged erection that needs urgent attention. It is dirt cheap costing pennies a tablet which you cut in half. If you have a good Dr. you can tell him you want it for the side-effect of NTE's as you try to regain functioning. If you have an uncooperative Dr. suggest you need it for sleep since it is often prescribed at those low doses for sleep. More is NOT better. if it is going to work it will work a 1/2 of a 50 mg tablet with a snack. And NO, it does not do much for daytime usable erections. If has been established that NTE's use different nerve pathways than stimulated daytime erections.

I would also get a good Vacuum Erection Device to induce erections twice a day to preserve day-time blood flow and maintain size. Do not use the constriction band unless you are planning to have sex.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Melko321

Thank you all for your replies - Hawk, Mikel and of course Benraycamp.
Sorry if I am not replying to your posts correctly, I am still getting used to this forum.
The question of erections is the one that troubles me the most, and you have helped clear some doubts in that area. I will look into L-Arginine, or whatever the alternative name it is in my country. As for Trazodone, I welcome the idea wholeheartedly since I often have trouble sleeping at night, so that would be hitting two flies with one stone.

I will look into traction to make sure I'm doing it correctly, and start today. As for erections, I am not getting any despite Cialis (5mg), so I'm thinking of maybe upping the dose. It is interesting to note that one urologist prescribed 5 mg daily, and the other 10 mg daily. I only noticed after I already ordered the first box in the pharmacy. God, they are so expensive!
Also, it is hard to get erections now due to psychological pressure as well. I know I should get erections to get the blood flowing, and as a result I can't get them. Jesus...

I really hope I will be able to find out soon if I am healing up or not, though those painkillers are masking my pain and making it difficult to see if there is any progress. I just can't understand why I have to use them daily.
Male, 33, recentl diagnosed, still very confused. Taking painkillers and Cialis for condition, so far no dice. Married, no kids, suffering from MS and ED already before. Currently waiting for control to see what happens next.

GaussRifle

MS has effects on erectile function as per studies, are you aware of this ?
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

FlatteningTheCurve

Quote from: Melko321 on July 14, 2021, 11:24:37 AM
As for erections, I am not getting any despite Cialis (5mg), so I'm thinking of maybe upping the dose. It is interesting to note that one urologist prescribed 5 mg daily, and the other 10 mg daily.

What my doc said is that 5mg of Cialis is mainly for NTEs and increasing the blood flow to the penis in general. When planning to have sex, he recommended me to increase the dose to 10mg 1 hr beforehand, but only when I know I will have sex. It has worked well so far, try that and see what happens. Note that you are not recommended to take Cialis at multiple times in a period of 24 hrs, so either 5 or 10 mg each evening, not like 5 in the morning and 5 in the evening.
Early 30s, diagnosed with Peyronies in 2017 after trauma during sex. ca 15 degrees upward curvature. Restorex, VED, 5mg Cialis, Pentox, L-arginine, Coq10, Propolis, Vitamin E. Underwent 12 rounds of Verapamil injections 2021-22

Melko321

Hey, thanks for the replies.

@gaussrifle - yes, Erectile Dysfunction is one of the symptoms of MS. Painful erections, however, aren't. There is, I think, a possibility that years of Erectile Dysfunction led to Peyronies in my case. I often had sex and masturbated with 80, 90% of hardness, I guess it is possible I damaged my penis that way. I mentioned this to the urologist, but he neither confirmed nor denied it.

@flattening - thank you for the explanation. I am not sure I am getting NTEs even with Cialis, so I don't see the purpose yet, and they are insanely expensive. We'll see what happens later, I am only at the start of therapy. I think I need stronger doses though. I was taking a quarter of Viagra before sex for many years now, I feel like 5mg of Cialis is nothing in comparison.
Why can you only take 10mg if you KNOW you will have sex? Why not take 10 mg even without sex, just to achieve an erection and possibly maintain it for a while, to get blood flowing in the penis. Did the doctor explain? I won't be having sex for a while now, this is too freaky and I am too anxious, but  I would like to have, for instance, 20 minute or half hour long erections using Cialis + visual stimulants just to get blood up there.
Male, 33, recentl diagnosed, still very confused. Taking painkillers and Cialis for condition, so far no dice. Married, no kids, suffering from MS and ED already before. Currently waiting for control to see what happens next.

FlatteningTheCurve

The fact that you are experiencing different effects of Viagra and Cialis is normal as they are different forms of similar medication. As far as I understand, Viagra is designed to give strong erections for a short period of time, basically to facilitate having sex. The effect of Cialis is weaker but lasts for a longer period of time. In other words, Cialis enables blood to travel more easily to the penis and that is why it often helps against Peyronies Disease - an increased blood flow over a longer period of time helps the tissue to heal more easily.

It can thus be that you are getting the desired effect but you are not necessarily noticing the strong 20 min erections you are mentioning.

Cialis is expensive, have you looked at generic versions rather than e.g. Tadalafil? There can be quite a spread across different versions.

In terms of dosage, that is just what my doctor said for me, he said that the Cialis has effect but can be less noticeable than e.g. Viagra. I assume that since I had good effect from Cialis, there was no need to go beyond the standard dose of 5mg/day. The 10 mg dose would only be to enhance the erection during sex. I know other people take more than 5 mg but I would consider consulting a specialist before taking 10mg/day for a longer period of time.

One way to achieve the shorter erections to increase the blood flow to the penis further is to get a VED and follow a daily protocol. There are quite a few posts here on the forum on how to do that, as well as what VED to get etc.

Hope that helps.
Early 30s, diagnosed with Peyronies in 2017 after trauma during sex. ca 15 degrees upward curvature. Restorex, VED, 5mg Cialis, Pentox, L-arginine, Coq10, Propolis, Vitamin E. Underwent 12 rounds of Verapamil injections 2021-22

Melko321

I actually have Tadalafil, not actual Cialis, but it is still privey as hell. In my country, it costs like a tenth of the national montly average salary.  And you don't even get enough pills for the enture month, you get 28.

I hope I am getting some of the desired effect, like you said. Subjectively (and objectively) my penis is constantly flaccid. I am still unable to get an erection spontaneously.

When I try to sort of force an erection, I noticed that the painkillers are doing their job, it doesn't hurt when I bend it or when I stretch it a little. I don't get full erections, but that could be due to a lot of things (my ED, my MS, my sleep, 5mg Tadalafil not being enough...).

However, that is only so when I am laying down. As soon as I stand up and the dick has to fight gravity, it hurts somewhere around the base and the erection is dead.

So right now I am rubbing painkiller gel on the sore spot that the doctor found, I am taking oral painkillers 2x a day, and 5 mg Tadalafil. My next appointment is in a month and a half, by then I should know more.

I have to see where I can get those VED pumps and get one.

Thank you so much for your help, you guys are really the only feedback I get about this.
 
Male, 33, recentl diagnosed, still very confused. Taking painkillers and Cialis for condition, so far no dice. Married, no kids, suffering from MS and ED already before. Currently waiting for control to see what happens next.

Mikel7

You just hang in there and be encouraged!  The fact that you are trying to deal with this issue is a fact that you are going to get through this.!   All of us here have had our dealings with this and being upset and worrying. Just believe that you are going to make it through this somehow.  Don't ever dwell on the negative but rather the positive!  :)
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

Hawk

This topic is now locked as it exceeds the number of posts we allow for an introduction topic. We encourage you to continue by creating new topics/discussions in the other boards on the forum below.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums