my pain management appointment

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Thisismyusername

I saw pain management yesterday.  It took 2 months to get the appointment, but it finally happened.  

I have had chronic pain while flaccid for the past 7 months.  One of the things they did was give me a list of types of pain and check which ones I had.  I chose "aching, burning, tender" and I also added "sensitive" to the list.  Because of this they wanted me to take neurontin.  Apparently one of the common side effects of this medication is memory problems, and being a graduate student working on a Ph.D. in math this is basically unacceptable to me.  So they talked it over and decided that they wanted me to try a cream that is specially ordered from a company called "total pain solutions".  The cream is a combination of neurontin, ketamine, baclofen, and ketoprofen.  I'm supposed to apply 3-4 times per day and pain relief is supposed to be immediate.  I'll be the first to apply this to my penis that the doctor knows of.  

I'm basically scared of putting it on my penis because I am afraid to damage nerves or make peyronie's worse, but I guess I'll give it a try as it is the only thing they offered.  I am also trying to get a referral to a pelvic pain physical therapist.  I have very mild/occasional pain in my perineum or testicles and occasionally some urinary pressure, as well as hard flaccid and perineum muscle spasms when I get an erection.  

I'm also trying to adjust my diet to include less carbs and more vegetables and protein.  It's a hard adjustment for me because I love carbs.  But I have problems with inflammation in general (tendinitis) and also have what I consider to be low testosterone for my age (28) although it is technically within "normal" according to my urologist.  

I'm just writing in case others were interested to hear about what I'm doing for pain.  Assuming I bite the bullet and give the cream a try I'll write back to comment on it's effectiveness.  Cream should arrive by tomorrow in the mail.

I just hope that pain goes away at some point so that I'm not effectively impotent for the rest of my life and so that I can enjoy life again and stop withdrawing from people and activities because I'm secretly suffering all day long.  

ak123

Awaiting the feedback. I have pain during erection that didn't go away despite that I'm 5.5 years after injury.

MattFoley

Thisismyusername:

(1) Are you taking Pentox? That helps me with penis pain.

(2) The cream you're getting should not damage any nerves but it is strong stuff so it should help with the pain.

(3) The fact that you have pain elsewhere indicates that you have non-Peyronie's issues that need to be resolved.

(4) We all love carbs but you have to cut way back on them for your health in general and specifically to help your penis recover as well as other issues.

(5) I don't know what your testosterone level is at but if it isn't at the higher part of your range for your age, you're doing yourself a great disservice.

Keep us informed. God bless.
Got Testosterone?

Thisismyusername

So I tried the cream yesterday.  I put just a little on the part of my penis that hurts the most around the plaque.  Unfortunately it burned after application.  When the burning didn't stop after 30 minutes I washed it off.  I didn't notice any beneficial effect.  Even if it does help the original pain (which I don't think it did), the burning it induces seems to make it not really worth it.  Not really sure what to do next.  

Matt: I was on pentox for 6 weeks with no benefit and significant side effects.  Since then I have tried to go back on it several times and every time I felt that I got the same side effects: anxiety, felt scatterbrained, and felt very tired all the time.  

Still continuing to try to cut back on carbs and eat more vegetables and meat.  I'm trying to get a referal to a pelvic pain physical therapist since I have some pain in the perineum, perineum muscle spasms on erection, and hard flaccid.  

jackp

Have you had a prostate culture?  Sounds a lot like a chronic prostate infection.  

Add 2 8oz glasses of cranberry juice cocktail to your daily diet. No citrus fruit or juice, no ahacol and if you smoke quit. An old urologist told my dad about the cranberry juice cocktail over 50 years ago. I has help prevent me from having flare up since I was 35.

My wife was diagnosed with a UTI last week. The instructions with the prescription said to drink 8oz of cranberry juice cocktail twice a day.

Jackp
http://jackp-penileimplant.blogspot.com

Thisismyusername

I've taken a month of antibiotics in case I had a bacterial infection.  When I first got peyronie's disease I also had urinary pressure, pain in perineum and testicles.  The symptoms all went away on their own.  Later after having sex all the symptoms came back.  That's when I took the antibiotic.  Over the month the symptoms did improve but not any faster or in a different way than they improved on their own previously.  The symptoms had been gone for a while but recently after doing some pelvic stretches came back.  I think I have a muscle tension problem rather than a bacterial infection.  The urinary pressure has gone away again and right now I just have some mild pain in perineum.  

jackp

I had a prostate infection about 20 years ago that I thought would never go away. I went through 30 days of Cipro, still there. Another round and I still had it. Changed to different antibiotic and finally I cleared up.  Then I had 2 TURP's a year apart. That is when I found Saw Palmetto and added it to my cranberry juice cocktail. Only one very mild infection since and it went away by just drinking the cranberry juice cocktail.  
For the first couple of years with my new urologist he kept asking what I was doing for my prostate. After a exam and culture he said keep up what you are doing.  
Prostate infections can be very hard to get rid of. I say every man over 35 should take Saw Palmetto every day.

Jackp
http://jackp-penileimplant.blogspot.com

Thisismyusername

What is the recommended dosage of Saw Palmetto?

james1947

On the bottle is written:
3 to 5 capsules daily, preferable with meals.
Jack is advising to take two per day. He have long time experience in the subject.

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

Thisismyusername


james1947

I have bottles from two different manufacturers, both the capsules are 450 mg.
Cheap, Walmart have it and I think every "mart" have it also in the US.

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

Thisismyusername

So good news, my pain management doctor finally got back to me.  The process has been very slow and that is upsetting, but she does seem sincere and genuinely wants to help me.  She told me she will contact the pharmacy and talk to them about why the cream may have burned me.  She thinks it may be the base of the cream, which is designed to penetrate tissue that is causing the burning rather than the active ingredients.  In the meantime she wrote me a referral to a pelvic pain physical therapist and a prescription for "nucynta".  I have not researched this medication yet or tried it.  I won't be able to give it a try for a few days.  Hopefully I will be able to find something that works.

In the meantime, the pain had been improving some, as it tends to over the course of weeks, but last night had another flair up again when putting my penis back in my pants after peeing.  I felt a sharp pain and now the pain is worse.  Not as bad as 4 weeks ago.  But maybe as bad as 2 weeks ago.  We'll see.  I'm trying to get through each day and keep succeeding in school and hoping for a better future.  I at least have a very wonderful and supportive girlfriend to help me through this even if she is long distance.  

MattFoley

Thisismyusername, Nucynta is highly addictive. Be careful. I don't recommend taking it every day because getting addicted to it is easy.


God bless.
Got Testosterone?

Thisismyusername

Finally got the prescription for Nucynta.  Haven't tried it yet.  I plan on trying it soon.
Also finally made an appointment for physical therapy.  It took me a week to even get through to someone on the phone because their new appointment scheduling line was always busy.  The appointment is for December 13th.

Thisismyusername

I tried nucynta.  It gives very strong pain relief - far better than vicodin.  But it has weird effects on me and it seems like it could be dangerous - psychologically addicting.  I don't really feel comfortable using it but I am so so tired of being in constant pain.  Life is hell right now.  

I made an appointment with a different physical therapist for next week.  They are out of network but I don't think I can wait a month for my appointment.  I am seriously suffering here.  

Thisismyusername

Update:

After trying Nucynta for about a week (but not taking every day) I stopped because it made me basically dyslexic and I was unable to be productive.  Overall it provided almost complete pain relief but after it wore off the pain was worse than ever.  Like if the pain was a 4 it would take it down to a 1 and then it would jump to a 6 after it was over.  Ultimately I stopped because of the effects it had on my brain.  

I started physical therapy for pelvic pain 2 weeks ago.  The first the thing therapist noticed was that my psoas and iliacus muscles were tight and my posture while standing and sitting were contributing to this.  She showed me how to adjust my posture.  She also showed me how to relax the pelvic muscles and breath deeply to help them relax.  I was able to adjust my standing/walking posture and and I noticed that after doing this my pain decreased significantly while standing/walking (from as bad as a 5-6 to just a 2 or so).  Changing my sitting posture is much more difficult and I haven't been able to do this yet.  I notice that after sitting for a while the pain gets worse.  So for about a week and a half I was able to control the level of pain by getting up ever 30 minutes or so and walking/standing with the corrected posture and consciously relaxing and breathing deeply.  This was very encouraging.

Unfortunately after going for 5 months without sex I ended up having sex with my girlfriend again and now that pain is back to a 5-6 at all times.  I'm completely miserable again.  I shouldn't have had sex but its really hard to resist sexual urges for so long.  Life is tough.  

So I'm back to the pain being as bad as ever after a week and a half of progress.  At least I've learned something on the way.

I'm seriously thinking about getting a corticosteroid injection into my penis as discussed here:  After 4 years with pain, how I recovered - Peyronies Society Forums

I called pain management and told them that I stopped nucynta and asked if they had anything else for me to try.  

Will keep updating over time.  

Thisismyusername

Quick update:

I have had chronic penile pain for 10 months.  The good news is that it has been less debilitating than it used to be.  For the past month or so I have been able to live my life a lot closer to a "normal" life than I used to.  I still can't really engage in sexual activity but lately I have been able to masturbate gently without causing flair ups in pain lasting more than a few hours.  This is a big improvement from when masturbating once would cause increases in pain for weeks.

I have been having a lot of pelvic pain too which is really unpleasant but not as debilitating as the penile pain.  I have been seeing a pelvic pain therapist who has found my pelvic muscles are constantly contracted.  She is helping me learn to relax them and release the tension in the muscles as well doing exercises that help the pelvic floor muscles operate in harmony.  Unfortunately I haven't had significant pain relief from the therapy yet.  I still often have hard flaccid.  My therapist thinks this is pelvic floor related and that it can be fixed by restoring the natural relaxed state of the pelvic muscles.  I've been seeing my therapist for about a month now.  

I am scheduled to have a subcutaneous corticosteroid injection into my penis in 2 and a half weeks.  The needle will not penetrate the scar tissue or erectile tissue but will deliver the corticosteroid between the foreskin and the penile tissue.  The purpose of the procedure is to reduce my pain.  It is considered low risk but not completely risk free.  

I had an MRI done of my penis which did not show any abnormalities.  It was done flaccid.  Blood flow was normal.  No scar tissue was found, but my guess is that I do have scar tissue.  The MRI can usually only see very large concentrations of scar tissue or calcified scar tissue.  My scar tissue is most likely diffuse.  

No changes in deformity over the past few months.  Currently at full erection I look almost normal with a slight curve to the left (less than 10 degrees).  While gaining and losing erection I sometimes look pretty deformed, but it is temporary.

Thisismyusername

I know that most people here are not dealing with pain the way I have but I thought I'd provide an update anyway.  I probably won't be spending too much time around here anymore, partly because my issues are different than most peoples here.  But I'll probably stop by from time to time.

There is finally some good news.  After the shot I had a major increase in pain for 3 weeks, but finally when the initial irritation wore off I had major improvements in pain.  Either the corticosteroid shot started helping or the initial irritation from the shot wore off and I've had natural improvement.  For the past few weeks my pain has stayed mostly at the level of 2 (out of 10) or lower and has maxed at 3 for the past few weeks.

Additionally, after 3 months of physical therapy my pelvic floor feels a lot more relaxed than before. I think physical therapy is definitely paying off. It took at least 2 months to notice any improvements but from the 2 to the 3 month mark I have had significant improvements.

I still have pain throughout the day but it is no longer debilitating in the sense of daily functioning. I am starting to feel "normal" again, at least in a sense.

Sexually I still get significant pain on erection and sexual activity increases pain for a while. Real sex is still out of the question. I also still have muscle spasms on erection and hard flaccid most of the day.

I still have a long road ahead of me, which may be filled with setbacks (or not, who knows?), but I'm starting to feel at least somewhat optimistic about things.  I'm not sure how close to normal I'll end up but I'm starting to think I can at least live a decent life.

I've learned not to get too excited over improvements and not get too upset over set backs after a year of this, but for now things are looking up.  

james1947

Thisismyusername

I doesn't matter how different you are dealing with the pain, what is important that you are improving :)
As many time we are saying, Peyronies is a very individual disease, and if your treatment helps you, I am happy to read about.
Keep in touch

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

Thisismyusername

Update:

It's been almost a year and a half since this all started.  The penis pain while flaccid is 100% gone when it hasn't been irritated recently.  However, my penis is very sensitive and certain things irritate it easily - after taking a long walk, I have pain for about an hour.  I still have pain on erection.  If I masturbate or have sex I have bad pain for at least a day.  A few months ago I masturbated too frequently and constant daily pain came back for over a month.  Fortunately things returned to normal since then after I completely abstained from masturbating.  I haven't had sex in over 3 months and I try to avoid masturbating.  This part is hard and sometimes I get depressed about it.  When I do have sex or masturbate it doesn't feel nearly as good.  I'm not sure if this is just because of the pain or if I have lost sensitivity.  

My pelvic pain has improved a lot.  I still have pain every day, but it usually isn't too bad.  However, I have to focus on relaxing and my lifestyle has been affected a lot.  I can't go out for too long, can't socialize for too long, can't let myself get excited about anything, can't play intense video games or watch intense movies or TV, and can't exercise too much without pain increasing.  I occasionally still have flair-ups where the pain gets a lot worse for a few days or so.  

My productivity is almost back to normal but my lifestyle as a whole is not.  I'm bored a lot because I'm so limited in what I can do without causing more pain, either pelvic or penile.  I also still have hard flaccid most of the time.  My erections aren't as good as they used to be but I can still reliably get good enough erections for sex, although I never have sex anymore because it hurts so much.  I still only have a slight leftward curve and some indentations.  Nobody would think I had peyronie's disease if they saw my penis while 100% hard.  When I have a partial erection deformity can be more noticable.  

I'm getting better at accepting things but I still get frustrated or depressed.  It's hard when I think about how much this has effected my quality of life and my relationship and for a year or so, my productivity.  But I just try not to think about it and focus on good things and focus on the things that I can still do.  It's been hard though but I guess things could be worse.  

james1947

Thisismyusername

What about treatment for the pain? Do you take some medications/supplements?

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

Thisismyusername

No, the only thing that helped was nucynta and I don't want to be on opiates.  Some other medications have been recommended to me but I haven't tried them because I'm worried about side effects.  I don't think medication will fix the pain from sex, and since I don't have too much daily pain I don't think it's worth being on medication.  

NeoV

Thisismyusername, that's really tough..

I can relate to you on the fact that daily discomfort negatively effects my daily life, socializing, work etc. luckily I don't have pain exactly but the sensation is a bad one, and it makes sex seem pretty undesirable. I'm working on fixing it and also on my mental attitude towards it. It's easy to start to fear or dislike sex but I hope you can find it enjoyable again or at least stop negative thoughts about it during your daily life.

I'm glad to hear you had improvements though man, that's just great, I hope they keep coming and the pain fades away.

Thisismyusername

Just an update; it's been 2 years since this all started.  The flaccid pain has mostly been gone for a year now.  Unfortunately I still can't masturbate or have sex without pain increasing for anywhere for a few hours to a few days.  Since this hasn't improved in about a year I've decided to have another subcutaneous corticosteroid injection.  I had one before and I couldn't tell if it helped or not, but I think it's worth another try because it is the last treatment option I have.  Last time it increased pain for 3 weeks and then I had a big improvement.  I'm not sure if the improvement was natural or due to the injection.  I'm obviously concerned that the injection will cause my daily pain to come back, but I hope that if so it won't last too long.  

My pelvic pain had improved drastically about 4 months ago to the point where 80% of the pain is gone.  Unfortunately I've been having flair ups for the past few weeks due to stress in my personal life.  Right now I'm feeling pretty depressed about the pain.  I feel kind of lost because I'm having a hard time reducing the tension.  But I think in time it will improve again.  I really do have hope of overcoming the pelvic pain in another few years or so, although I do have concerns about difficulties with stress in my personal life and some increased duties for work that may cause me more stress.  

I'm having a hard time mentally still with the impact that this all has had on my life.  The inability to have sex or masturbate, having to restrict many activities because they increased my pelvic pain.  I'm just trying to take it one day at a time, but it can be really hard at times.  The increased pain lately has really been getting to me.  I feel like I'm struggling in silence and sometimes I don't know what to do.  Nobody I know understands what it's like dealing with this.  

Anyways, right now I just want to reduce the tension so that my pain can reduce again.  And hopefully I will have some improvement in sexual function with the injection, which I plan on scheduling for sometime this summer.  

Sorry for the somewhat negative post, just having a tough time lately.  But overall I've had a lot of improvement, just very slow and a long way to go still.  

kuaka

Hi Thisis....  I've only been active on this board for a short time.  I've read through this thread and I definitely feel for you.  I have generalized pain that gets its own pain management from massive old injuries, including pelvic fracture.  My pelvic pain is mostly right where I sit due to improperly (as in NOT) set fractures combined with (supposedly healthy) early ambulation.  I also have rather severe low and mid back issues...low due to pelvic fracture and congenital sciatica tendency...mid due to an undiagnosed vertebra fracture.  Neck injuries have my spine causing issues at both ends AND in the middle.  Knee injuries make walking problematic, and plantar fasciitis adds to that.  I'm fortunate in that I don't have any significant penile pain anymore.  When the Peyronies Disease initially manifested, I had very painful erections.  I made and used a traction device and had enough success to correct the pain and "dents" at the bend even before I found this forum.

As far as pain management is concerned, all of the combination "opiates" introduce side effects caused by whatever is combined with the morphine.  I finally broke down a few years ago and started a pain management regimen, but I have never had success with anything other than Morphine Sulfate (MS Contin).  It reduces the pain to a manageable level without adding mental fog or feeling "high".  I do need to bump it with a Fiorinal-3 (caffeine, aspirin, butalbital, codeine) to get it started most of the time though...the codeine pills with Tylenol are useless to me.  You might consider looking at MS Contin as a possible general pain management.  Since you don't like feeling "high" or out of sorts, your potential for abuse is low.

Just a thought.

Thisismyusername

Kuaka, thank you for the response.  I'm sorry about everything you have been dealing with.  For me the daily pain is almost completely caused by muscle tension which I feel I can learn to overcome eventually.  In terms of the penis pain for now I just avoid sexual activity.  I'm not at the point where I need to go on pain medication, but I do appreciate the suggestion in case that ever happens.  We'll see how this shot works.  If it doesn't work and giving things more time doesn't help then I'll probably eventually pursue something that might allow me to have sex at least on occasion.  But I don't know what that would be yet.  

kuaka

I also have Flexoral for muscle tension.  I was switched to a new relaxant, designed for daily use, but I couldn't stay awake after taking it for a few days, so I went back to the Flexoral.  A good massage is worth a lot too, but hard to find.  I stumbled onto a masseuse with magic in her hands a few years ago at one of those "on the mall" massage places.  They and she disappeared one month and I regret not offering to adopt her.  She could do my back more good in 30 minutes than three visits to a good chiropractor.