PAIN related Q&A

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Fred22

Quote from: crashbandit on November 08, 2010, 11:40:55 AM
I did a drug interaction between the trental, trazodone and the new comer, neurontin. It seems theses a moderate interaction between trazodone and neurontin. Something about CNS/respiratory depression but it says to monitor it. I don't really understand what this is saying, can I still take these drugs together but with caution and monitoring? I only take the trazodone at night and not always and just 25mg.

http://www.drugs.com/interactions-check.php?drug_list=2228-0,1147-677,1826-1179

It's just that both have a sedative effect but 25 mg. trazodone is a very small dose...maximum dosage is 600 mg. if I remember correctly...Fred

Woodman

Bandit - I am in the minority in the pain dept. like Fred. I ve experianced long term pain with my condition. I ve had it since day one its now been almost 3 1/2 yrs. Its gos from very bad down to annoying it has a mind of its own. So I am not a good candidate to use to determine pain factors far as duration. The vast majority of guys do not have long term pain it usually dies out over time.

When I am all wound up the pain will come on. Its hard to discribe.......its usually a burning aching pain sometimes with sharper pains on top of it. I get the pain in the areas where the plaque is I have 3 plaques.

I get the same pains in diffrent levels normally, but stress will bring them on and will make them worse. I try to stay calm and keep my stress low as possable.  

crashbandit

Quote from: Woodman on November 10, 2010, 12:23:10 AM
Bandit - I am in the minority in the pain dept. like Fred. I ve experianced long term pain with my condition. I ve had it since day one its now been almost 3 1/2 yrs. Its gos from very bad down to annoying it has a mind of its own. So I am not a good candidate to use to determine pain factors far as duration. The vast majority of guys do not have long term pain it usually dies out over time.

When I am all wound up the pain will come on. Its hard to discribe.......its usually a burning aching pain sometimes with sharper pains on top of it. I get the pain in the areas where the plaque is I have 3 plaques.

I get the same pains in diffrent levels normally, but stress will bring them on and will make them worse. I try to stay calm and keep my stress low as possable.

Thanks for the feedback woodman and fred.

woodman - I got the burning and aching thing going on too but I have no plaque. Did your plaque develope before the pain or did the plaque develope after the pain?
Cheers

Woodman

Bandit- The pain started before the plaques developed and continued once they where present.

crashbandit

Dang.... I had a feeling you were going to say that. Can you give me an ETA on when the plaques arrived after the pain first started?
Cheers

Woodman

My first plaque the doctor was able to feel it on exam in approx. 6 months from my original injury. I am not sure if it developed faster cause I was still new to the whole condition and not as well educated as in the later 2 instances. Also, it is deeper in the tissue near the base on the left side. The second plaque developed after a reinjury due to not being use to the new curve and ignorance. It took exactly one month to pop up. It came up literally over night. Woke up one morning wasnt there layed down to take a nap felt something diffrent looked down there it had appeared. The third plaque came up about 4 months later after the pain started. The jurys still out how that one developed.......I think it was part of the second reinjury and it just needed that next little push to tilt it over to develop a plaque.

Although our symtoms have things in common I would not use my experiances as a bench mark for what may happen to you. I ve learned that this condition manifest itself in many many diffrent ways.  

George999


lespleen

MikeSmith:

I was curious about your " glandular" pain :  "Anyway, I am having a lot of pain - even when flaccid. There is also increased sensitivity - in a bad way.  In the shower, if water hits it (particularly the head) - there is just searing pain.  I have no idea what is going on." I also am experiencing this lately. I injured the shaft very near the glands and the sometimes the head feels super sensitive. did the pain you experienced around the head  occur subsequent to VI or was it somehow related to one of your plaques?

Farinthesouth

Many Thanks George for this very interesting article.

MikeSmith0

It's been about 6 mos since that post... and I think all the excess pain was due to the VI shots and also the fact that I was in the active phase at the time.  I think I am in the more stable phase now.   I do not have that level of pain anymore thankfully... it was really not a good summer... ubiquinol and penoxifiline have helped people w/ pain on this board.

ggilmann

I have had Peyronies for about five months now. When I was first diagnosed in February, it felt like I had "sprained" my penis, for lack of a better word; whenever I would push it past a certain point, there would be a sharp pain in the base and center of my penis, but otherwise it was normal (no ever-present pain, curvature, etc).

My doctor put me on Pentox, l-Arginine, and vitamin E. I'm not sure what exactly did the trick, but about one week after I started taking the meds my pain had completely subsided. About a month and a half ago, having not seen any symptoms for a while and having consulted my doctor, I decided to stop taking my medication and see what would happen.

I was still fine until about two weeks ago when I started getting pain in my penis again. However, the nature of the pain is very different now: it feels like the aching pain that spreads through the whole penis when you have a super-hard erection. At first it was mild and would only appear sporadically, in the mornings or if I was extremely aroused. Now, though, it has started increasing in intensity and frequency, and for the last two days my penis has ached throughout the day, regardless of whether or not I have an erection. This has been very painful and distressing in general, but it is also making sexual activity very difficult. As of the beginning of July, I have resumed my medication, but so far with no signs of improvement.

Does this sound familiar to anyone? Does anyone have any advice or stories to share that might be relevant? Is there anything I can do or do I just have to be patient and wait it out? I have tried browsing the forum for information, but have so far not been able to find anything definitive besides what I've already been trying. Thanks.

George999

What stopped your pain was Pentoxifylline.  Stopping it in a situation such as yours is not good.  You can drop the Vitamin E for sure.  It is next to useless.  L-Arginine will not help your pain at all but can improve your erections.  My advice at this point would be to add CoQ10/Ubiquinol to the mix.  I *can* help with pain.  CoQ10 works for younger guys, Ubiquinol tends to be better for those of us over 40.  I would also recommend Celebrex.  Multiple guys around here are finding Celebrex helpful with pain.  - George

Fredca

I think vitamin E is the cause, somehow. I stopped using it anyway because of this reason. If you read the description on vit. E you can see it can also cause some sort of infection in the veins. Maybe thats it.  

crashbandit

I have pain which feels very similar to yours. I also have no curve or ED problems, just pain and discomfort and the "sprained" feeling. My pain has flare ups for about 2 weeks of canstant pain (expecially after ejaculation), where it is really bad (5 out of 10).

Then it turns into a mild constant discomfort (2 out of 10). During the flare up, my flaccid twisting (to the left) is much worse, and the penis shrinkage is worse as well. There is also a cold type sensation in the glan as well.

Since my penis pain started 1 year ago, these periods of pain and discomfort have completely dissipated for 2-3 month periods, which I would feel completely normal. My pain is only on the left side and moves around from base to glan and towards the underneath as well.

It's amazing how the pain can move around so much. An area that hurt one day won't hurt in the same place the next. Wierd eh!

Recently I battled through a flare up and found relief with celebrex. I would recommend you try Celebrex for your pain.

Cheers

newguy

Oral strategies for peyronie's disease really aren't what you'd call short term. I'd say at a bare minimum pentox should be used for six months. Maybe in one month some positive changes are taking place (this could perhpas explain the pain reduction - either that or co-incidence), but stopping at that time really is a bad idea. You can potentially save yourself a llot of problems by sticking with it at this point, so I really do hope you're taking it again. Any chance of an update on your situation?

0x5555

Hey guys,

My pain has not ceased.  It seems to have been getting progressively worse and worse.  I talked with my urologist a while back, have been taking pentox for a month and no relief.  My deformity has also been getting quite a bit worse in the past month or so, wheras before there was a slight dent now there is actual disfigurement.

Any other advice you can give me?  I am about 6 months into this, I'm really hoping this gets better.

KAC

Ox5555

For me the first 6 months were the worst.  Curvature went from almost nothing to almost 90 degrees.  The pain stopped at my 3rd Verapamil shots--my doctor had told me that if nothing else the shots stop the pain.  I also started taking pentox and ubiquinol at this time and either this (or the V) stopped the pain.  Curvature started decreasing at about the 9 month mark (by 15th months was about 45 degrees).

But I wonder if the thing that helped most was decreasing my stress level.  I had been stressed out of my mind in an impossible job situation.  Eventually I was laid off at my own request--and I've been seeing a counselor to work on a variety of techniques for dealing with stress.  I got a complete work up by a naturopath/md who also helped me regulate some things he thought were out of line.  I think all this coincided with making progress.

Not that anyone's experience will be the same as mine--I think we are all too aware of that.  

And I'm sorry.  This is a hard thing to deal with.

KAC

Sorry it's hard.  

qweeny

Hi, my guy is on month 8 and the pain hasn't subsided yet. He's been on Pentox for about 2-3 months. He says the pain varies, but feels worse sometimes. A new lump seems to have formed too, but we have decided that in the acute stage, things are bound to be changeable, so we are holding on tight in this journey and trying to stay positive.

We are hopeful that the pain issue will begin to get better soon.

Lots of luck to everyone. x

0x5555

I appreciate the responses.  I can deal with the change in appearance but it's the thought of lifelong pain that's really getting me down.  It does make me feel a bit better to know I'm not unusual to still be experiencing some pain even this far into noticing the problem.

rd

Quote from: 0x5555 on December 09, 2011, 05:48:48 PM
I appreciate the responses.  I can deal with the change in appearance but it's the thought of lifelong pain that's really getting me down.  It does make me feel a bit better to know I'm not unusual to still be experiencing some pain even this far into noticing the problem.

I have pain as well, and its been 15 months I did however discover that if I leave the plaque area alone and when I say alone I mean not touching the area at all the pain is almost non existent. Even when I go to the bathroom I make sure not to touch the area as well. It seems anytime I touch the plaque area I start to feel a increase in pain and discomfort.

goodluck

My pain was never terrible but I can still imagine what you must be experiencing.

I found ALC to help with pain in my case.  I took 500mg 3 times a day.

Good Luck

Worried Guy

Guys are you talking about pain whilst flaccid or hard?  Most of my pain was whilst flaccid for about 6 months.  It really disrupted my sleep and I found the vibration of car journeys nearly unbearable.  I tried using ibuprofen gel directly on the plaque which helped.  The doctor said there was no harm in doing it.  The problem is that I have very sensitive skin and it caused me to develop eczema there.  I started taking ibuprofen tablets instead and this would keep the pain away for a few hours.  I have two plaques.  One ached and the other didn't.  The one that was causing the pain has now disappeared over a period of 12 months.  

Highland_Mtn_cat

I must chime in too.  I've got pain over 18 months.  If I don't touch or have erections the pain becomes less slowly over time until I have another erection.  There does remain sensitivity while flaccid that tends to wax and wane probably from when I have more blood flow, nocturnal rigidity, or mechanical stress from physical movement.  I'm essentially walking around on eggshells and don't exert myself.
When you get past 2 years of pain the question is what will they do with us?

Nothing but inactivity helps my symptoms.


0x5555

What's the longest you've gone without an erection?  I'm going to wait a looonngg time and see if that helps things heal.  I figure everytime it stretches I am doing more damage (hence the pain) so if I give it some time hopefully it will get better.  I'm exactly the same as you - a few hours after an erection it's terrible pain.  Leaving it alone seems to be OK.

My pain is while flaccid on the same day I get an erection.

Fred22

Pain in varying degrees for going on 6 years....sometimes manageable, sometimes excruciating.  Also recently had surgery for prostate cancer (successful thank God) and have some pain from that, so at this point it's hard to sort it all out. Then there are guys who never have any pain.  A strange condition that I wish I had never gotten...

Fred22

I've been having pretty bad penile pain since my prostate surgery in September.  It's pretty hard to sort out whether the pain is due to Peyronie's or after effect of the surgery or a combination of both.  I saw my surgeon yesterday and he gave me a prescription for Mobic (meloxicam...generic name).  It's a prescription NSAID.  Just wondering if anyone here has tried it and what were your results or your opinion on this drug.  I took one last night with dinner and starting around 9:00 up until the present time (2:19), I don't seem to be producing as much urine as usual. I'm drinking lots of water, but so far today it hasn't seemed to help.  I just read that the half life of Modic is about 20 hours, so hopefully it will be out of my system soon.  I also got very little sleep last night, which is another listed side effect (difficult sleeping).  This drug seems to have a lot of side effects and I'm leaving it off tonight to see if things get back to normal.  If you have any knowledge of this drug please post.  Thanks. Fred..

Old Man

Fred:

OK, I have used Mobic (meloxicam) for several years for relief of osteo arthritis. My ortho surgeon prescribed it after some knee surgery that has lingered on until now. Recently, I quit taking the Mobic due to a stomach acid reflux problem.

My gastro doc said that Mobic had caused the stomach flare up and it would take time to heal. He put me on an acid reflux med which did absolutely nothing toward helping the problem. I am now taking another acid reflux med to see if it will reverse some of the problems.

Anyway, I am relating the above in order to point out that Mobic/meloxicam can and will cause several side effects. I was instructed to take it in the morning before breakfast in order to have a food buffer between time of taking and eating, etc. This is supposed to cut down on the reflux problem.

Another item that I need to relate is that I am also taking Lasix after open heart surgery. This provides many urinations during the day and kind of offsets the "dryness" problem with the Mobic.

The above may or may be of value to you in taking the Mobic. You should ask the doctor who RXd the Mobic about changing the time of day taking it in order to relieve the urination problem.

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.

Fred22

Quote from: Old Man on January 10, 2012, 04:00:14 PM
Fred:

OK, I have used Mobic (meloxicam) for several years for relief of osteo arthritis. My ortho surgeon prescribed it after some knee surgery that has lingered on until now. Recently, I quit taking the Mobic due to a stomach acid reflux problem.

My gastro doc said that Mobic had caused the stomach flare up and it would take time to heal. He put me on an acid reflux med which did absolutely nothing toward helping the problem. I am now taking another acid reflux med to see if it will reverse some of the problems.

Anyway, I am relating the above in order to point out that Mobic/meloxicam can and will cause several side effects. I was instructed to take it in the morning before breakfast in order to have a food buffer between time of taking and eating, etc. This is supposed to cut down on the reflux problem.

Another item that I need to relate is that I am also taking Lasix after open heart surgery. This provides many urinations during the day and kind of offsets the "dryness" problem with the Mobic.

The above may or may be of value to you in taking the Mobic. You should ask the doctor who RXd the Mobic about changing the time of day taking it in order to relieve the urination problem.

Old Man

Hi Old Man....Yes, I just took the one and had mild indigestion and the urine production problem....not going to take it any more. Thanks for the info.....Fred

charlie44

I was diagnosed with Peyronies in August, but have had symptoms since May, so I am at least 8 months into the disease. I had pain for about six weeks, then it went away. It came back in November for a couple weeks, and then was gone till about a week ago. Now, after an erection/sex, there is some pain and tenderness afterwards for a day or two. So two questions on this;

Does experiencing pain mean I am still in the acute phase?....

Since I am now feeling pain, does that mean the disease is still getting worse 8 months in, i.e...more plaque being formed?

Thanks for any insight and guidance.  

james1947

In my opinion, yes, you are still in the acute phase. In my case, more plagues continue being formed up to 24 months from the first Peyronie's symptoms.
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

charlie44

James, thanks for the feedback. May I ask what treatment or meds were you taking during your 24 month acute phase?

james1947

Unfortunately and badly I just waited for a miracle (that don't come). I am sure my bad situation is because I have just waited. Don't wait, and don't wait to much for the doctors. Have many thinks to do like taking vitamin E and supplements, if you will search the forum you will get to conclusion what is best for you.
What other symptoms do you have except the pain>
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

charlie44

James, I was fortunate to have a Peyronies specialist at a nearby hospital. I saw him 4 months into the symptoms, and have been on Pentox since. I have Verapamil injections coming up soon as well. I am 8-9 months into having the disease. Right now I have plaque on the sides, so I have some hourglassing. Not extreme yet, but will be if the disease progression continues.  

james1947

I was not fortunate to find a Peyronie's specialist even in a near country. All the answers to my emails was that I need a fist visit to see what I have at around $US 1,000, just ultrasound $250 when here locally I can make for $25!!! All are "specialists" in degloving and cutting.
My actual uro is going with me and learning the subject.
Good luck with the Verapamil injections. What your doctor think about the Verapamil success?
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

charlie44

James, regarding Verapamil, the doctor said it might work or might not, but that it would not make things worse. So it's worth trying. I will post on this board (under the Verapamil topic) any results. I get shots this week.

Good luck to you as well.  

Old Man

Charlie44:

Suggest that you read more posts about this subject on the many that are included in the verapamil board. The jury is still out as to whether or not these shots do help or make things worse.

In my personal case after 12 of the injections there was absolutely no positive action, only negative. Each and every one of the shots caused more nodules, bruising that took weeks to go away and in general were bad overall. This may or may not be the outcome for every individual though.

The above is just my considered 2 cents about the subject!!

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.

charlie44

Old Man, yes, I've read the Verapamil threads and know that there is mixed results on VI. That is why the first question I asked the Uro was "can this make things worse?"....he said no. Now, I know he can say whatever he wants, but maybe also some of the results are due to the doctors skill in administering the shots, etc...who knows. I do know that the one big success story by the poster "Ek, I think is his board name" is by the same doctor I have (Carson). So to me, it's worth me trying this procedure....otherwise, I am not left with any other path besides Pentox which hasn't done anything so far.

As we all know with Peyronies, nothing is guaranteed, and there is risk in a lot that we do. I will post and update people results from my shots in the Verapamil thread.

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.

0x5555

Am I crazy to think that the injections sound a lot like fractures - like you're puncturing the corpus Cavernosum, blood leaks out and the resulting nodules are from scar tissue that forms.  

I know that when I scar it's usually a keloid (having moles removed for example), I suspect that is how my scar formed in my penis.  I can only assume that punctures from a needle might scar the same way.

james1947

0x5555
No, you are not crazy, is a logic thinking, but if we think like that, any injection therapy including Xiaflex an any surgery will do the same damage.
Your scar in your penis formed following an injection therapy?
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

0x5555

No, I it was an injury from trauma.  I didn't have classical symptoms of a fracture but I think that's what happened.

sadBuddyInLife

Ok this was just weird. I recently found a way to have masturbation without pain (OR SO I THOUGHT)
because today i did it successfully using a sex toy and then i thought that great "I didn't get any pain this time"
and yeah i didn't get any pain.

but then after taking a shower...and 20 minutes after the masturbation..I was sitting down flaccid and started getting sudden sharp pains. This is actually the first time i get pain while flaccide. It usually just happens when i get hurt while masturbating with an erect penis.

It was pretty painful so
But oh well. I took a hot bath and took advil to try to relieve it . It seems it calmed down a bit cause i haven't had pain in a few hours but i'm still worried i could get pain.

My question is , once you get a hard pain from masturbation....is it good after a while, to induce slight erections to try to at least placebo yourself to feel better. Because if it doesn't hurt when erect, at least you feel good and you start forgetting the pain.

That's how i've usually done it. I get sudden pains from mastrubation and then they last a while.. i use Adult DVD's to get erections and then it makes me feel better cause the blood flow makes me feel like it gets a bit healed/patched.

I've been hearing from many websties, that there's no solution so Is creating erections the only way to cope?
But at the same time i worry cause if i was hurt, then erections may create pain too.




Codeman

I have flaccid pain, the that has shortened the pain time after sex is to sleep on my back or in a recliner. Sleeping on your side will aggravate the plaques by having your penis on it's side or squeezed by your legs. Absolutely do not lay on your sides or stomach!
Peyronie's since 2016. Severe pain until 2017. Most subsided pain since then. Taking - vitamins, Cialis 10mg. Still suffering. Trying traction and VED but need to be consistent

TonySa

There are options for pain: pentox, ibuprofen, diclofenac sodium gel, etc.  be sure to check out the survival guide:  Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

LightAtTheEndOfTheTunnel

I've had painful erections going on 3 years now. Very noticeable hourglass on the left side and large indents, especially after I masturbate. My penis looks completely deformed sometimes. I could live with the hourglass but the pain is so annoying and irritating. Getting an erection.... something that is supposed to be fun and enjoyable is now just a constant reminder of this miserable F^@$!ng disease. Someone described it as a tight rubber band around your dick and thats exactly how my pain feels, only on one side though. At my wits end with that crap.