Questions for guys with chronic pain

[Thisismyusername]

I would like to try to find out more about the people who are dealing with chronic pain while flaccid.  If you have, at some point, had pain on a daily basis for more than three months in a row, I'd very much appreciate it if you would provide some information for me.  I personally have been dealing with chronic pain for 4 months with changes in the pain but no sign of improvement.

1) How long have you been having chronic pain?  Has it stopped?  Has it ever come back after stopping?  

2) Are there any activities that make the pain worse?  Even more specifically, are you able to have erections and sex without a flair up of pain?  If these activities make the pain worse, how long does the extra irritation last?  

3)  Please describe the type of pain you are having.  Please state the range of pain you have from 0 to 10.  Does the pain fluctuate throughout the day or is the intensity and type of pain constant?  If it fluctuates, is it predictable or random?  

4) What types of things have you done to try to treat the pain, and do you believe they were succesful?  

5) Are you having any other health problems that may be related?  Specifically, I am intersested in prostatitis symptoms such as urinary frequency/pressure, pain or pressure in testicles, perineum, or rectum.  

6) What do you believe the primary source of your pain is?  (for example, peyronie's disease, trauma, prostatitis, etc)  Have any tests been done to find the true source of the pain?

7) Does the pain or associated anxiety make it hard for you to sleep or get restful sleep at night?  Have you found any way to counteract this effect?  

[Thisismyusername]

I'll answer my own questions.  

1) I've had chronic pain for 4 months.  It stopped once for a few days but came back immediately after having sex.  Hasn't gone away since.  

2) Activities that make the pain worse for several hours:  being in a car, walking, lifting heavy objects, being stressed out, having erections, wearing any type of pants other than loose athletic shorts and sweat pants.  Activities that make the pain worse for days or more: sex, masturbation.  

3) The pain started out as a general ache and random sharper pulsating pain in all different areas of the penis.  It has now evolved into a stronger ache, a feeling of extreme rawness and sensitivity on either side of the upper shaft of my penis, a burning sensation on the underside of my penis, and sometimes a splintery pain going along the top of the shaft.  The pulsating pain is gone now.  The pain ranges from a 1 to a 5 out of 10.  In the beginning I would have no pain at night or in the morning when I woke up.  The pain would start 2 hours after waking up, increase in intensity until mid afternoon, and then decrease in intensity until late evening, when it would go away.  Now the pain is always present but fluctuates in intensity randomly.  

4) I have tried pentox for 1.5 months with no effect (I stopped a week and a half ago because I thought it contributed to my sleep deprivation.  I may start up again in another week or two).  I have been taking coQ10 with no effect.  I have tried oral and topical ibuprofin with no effect.  I have tried tylenol 3 with codeine and vicodin with no effect.  I have tried ice and heat, which arguably made the pain worse.  Last night a warm bath eased the pain during the bath, but had no long term effect at all.  

5) I have mild urinary pressure, urination more frequent than normal, occasional pain in testicles and perineum, occasional pressure in rectum.  These symptoms are mild and bearable.  But the pain is pretty bad.  

6)  I think the pain may be caused by some combination of peyronie's disease, trauma, and prostatitis but I can't really say for sure.  There have been no real tests to figure out what is causing the pain.  

7) I have trouble sleeping through the night.  I wake up at least several times throughout the night typically in pain and feeling very anxious and tense.  Sometimes I can't fall back asleep for hours and other times I fall asleep soon again.  I haven't felt well rested in two months.  I tried some sleep medications to counteract the effects.  Trazodone (between 25mg and 100mg) helped me fall back asleep after waking up in the middle of the night, but didn't help me feel well rested the next day.  Dyphenhydramine (50mg) helped me fall back asleep and sometimes wake up less frequently, but didn't help me feel well rested the next day.  Melatonin (not sure the dose, but it was 1 pill) did not help at all.  Trying to relax or being especially tired can help me sleep better, but I still don't feel well rested the next day no matter what I do.  

[funnyfarm]

1) 4 years
2) sitting, masturbation
3)burning from anus to tip of penis, 3 to 8, completely random
4) I have tried everythng, pentox did remove most of the scaring but did nothing for the pain.  I do get slight help from TRE (tension release exercise)
5) "Prostatis".  Really this is just western medicines way of  describing my symptoms.  The root cause has nothing to do with my prostate.
6) Sadly there  are no tests or allopathic treatment for pain other than symptom suppression (ie pain meds).  My inflammation and Peyronies Disease were caused by an overactive immune system.  Their are many things that contributed to this, and many changes that need to be made to help correct it.  Like other forms of autoimmune disease there is no magic bullet or quick fix. Pain is the bodies  way of telling you that there are problems and imbalances that need attention.
7) yes, how you sleep is a reflection of how you feel in the day.  Again, no supplement or special pill will get to the root cause.  In my case they made things worse. I have had better luck with lifestyle changes, going to be early, daily yoga, meditation, acupuncture, fixing my diet, ect.   Not easy but worth it.

It is tough, but hang in there. You will get stronger and slowly find your answers.  One good thing about pain is you know within a few weeks if something is working so you really need to be open minded and try lots of different things.    Scarring on the other hand will take month or years to see any improvement so it is much tougher to fix.

[james1947]

Thisismyusername

I have some of your symptoms.
Regarding Pentox and sleep deprivation I would like to say you should try taking just in the morning and noon.
Myself if I miss the 6 PM target time I am skipping on the evening Pentox because it makes me insomnia.
I would like to say also that if Pentox does not help with the pain, maybe your pain is not Peyronies related.
In addition I am waking up a few times because of urgency to urinate, sometimes very little bit.
You should see a doctor not just for plaques but also for bladder stones. I am now on meds to dissolve my bladder stones and have some improvement already after 6 weeks.
Bottom line, you have to find a competent urologist to try to understand batter what you have and get some solution.

James

[payne]

@funnyfarm I recall that you said you take gotu kola. Do you still take it? I ask because I was having a burning sensation very similar to what you describe and I believe gotu kola contributed to it.  

[james1947]

If you will make a search for gotu kola you will find 24 topics it appears in.
I think you may be able to get to some conclusions regarding the efficiency for Peyronies by reading them.

James  

[funnyfarm]

Hello Payne, yes I take it 4x/day.  It does appear  to help with my scarring (although most others do not see an improvement) but I will stop for a little bit and see is anything changes in terms of soreness.  Thank you so much for the suggestion !

[Thisismyusername]

I just wanted to update to say that I have messaged a lot of people who posted that they have having chronic pain while flaccid on the forum and I have found that almost all of them have had problems with pelvic pain.  I am in the same camp and my best theory right now is that most of those of us with chronic pain are having it from a combination of inflamation due to peyronie's and nerve sensitivity due to CPPS muscle tension.  Some may be unlucky enough to have scar tissue rubbing against nerves.  

It seems that most of the people I have talked to have had their pain eventually decrease significantly to the point of being able to function relatively normally throughout the day, but for many this took years.  Some are still unable to have intercourse without flair ups.  

I personally have had pain for 7.5 months now.  I am going to try to treat CPPS with physical therapy and relaxation and hope for the best.  If this does not work I will have to eventually try looking into other causes, perhaps seeing a leading peyronie's expert who can try to see if plaque could be rubbing against nerves.  

If I ever find a successful treatment I will be sure to post about it here.  I know that many are having no pain or only temporary pain on erection on the order of month, but those of us with constant pain know how hard it is just to get through each day.  At this point I'd embrace never having sex again if the pain would stop.  Although of course never having sex again is pretty bad on its own.

[Knight]

I am obviously no expert but I am aware of what you are referring to. My urologist did tell me that plaque can calcify and rub nerves just like you are saying. If therapy isn't successful I think you still have the option of having the calcified plaque removed and replaced with a graft and have an implant installed. There are some very happy guys here that don't seem to regret taking that route before us.

It may be the last option, but it is a valid option and could be the answer to a normal, pain free sex life again!

[LWillisjr]

If therapy isn't successful I think you still have the option of having the calcified plaque removed and replaced with a graft and have an implant installed.

Knight,
I don't want to go off topic here but just wanted to clarify that an implant is only required where ED is a problem prior to surgery.  I had excision and grafting surgery, no implant, and doing great.

[Knight]

LWillisjr,

Thanks for the reponse! I don't want to hijack the thread either but you've got my attention and I'd like to know more. My uro told me that he could remove the calcified plaque and replace it with one of several grafting materials, or combinations of grafting materials, but he said none of these materials has been perfected and they all usually leak. Thus he recommended an implant to go along with the grafts.

All of this is to be revisited in about a year after we see if I show any improvement with VED therapy.

Does this sound logical? It sounds you had grafts without leakage issues?

[LWillisjr]

My doctor is Dr. Levine, one of the few recognized experts who treat Peyronies Disease. He said the removal and grafting would have little if any effect on the ability to obtain an erection. He said if I could get a good erection before the surgery, should also after the surgery. Of course there are risks, but the repair is being don on the Tunica. It is the corpora chambers that fill with blood and contained by the Tunica that then gives your erection it size and shape.

[emasculated]

1) How long have you been having chronic pain?  Has it stopped?  Has it ever come back after stopping?  

Since June this year. It often stopped for a few days in the beginning, July and August. But since then basically permanent.

2) Are there any activities that make the pain worse?  Even more specifically, are you able to have erections and sex without a flair up of pain?  If these activities make the pain worse, how long does the extra irritation last?  

Walking makes it worse, after sexual activity or just erections it gets worse. I have to lay off for days if I don't want the pain to be totally unbearable.

3)  Please describe the type of pain you are having.  Please state the range of pain you have from 0 to 10.  Does the pain fluctuate throughout the day or is the intensity and type of pain constant?  If it fluctuates, is it predictable or random?  

It feels like billions of tiny needles emanating from the base of the organ. This is combined with almost permanent hard flaccid (reduced size and overall hardening of the shaft). Pain and HF is at it's worst in the evening / night time increasing from perhaps 4 in the morning to a solid 9-10.

4) What types of things have you done to try to treat the pain, and do you believe they were succesful?  

Physical Therapy, Novacaine, Diazepam, Diclofenac, Ibuprofen.. did not work.
After approximately 1-2 weeks on 6 - 12 g daily Potaba the pain subsides completely as well as the hard flaccid and EQ becomes normal again.
Which proves to me that this is all related to inflammation of the tunica albuginea.
I should add another thing that helps: Having an erection.
If it gets unbearable I take 2.5 mg Cialis wait half an hour and have a prolonged erection which gives immediate release.
No sexual activity.. just an erection.
Of course afterwards it comes back, but sometimes not so bad anymore.

5) Are you having any other health problems that may be related?  Specifically, I am intersested in prostatitis symptoms such as urinary frequency/pressure, pain or pressure in testicles, perineum, or rectum.

I have some pain in the perineum area and rectum. High urinary frequency especially during the night.

6) What do you believe the primary source of your pain is?  (for example, peyronie's disease, trauma, prostatitis, etc)  Have any tests been done to find the true source of the pain?

Peyronie's, i.e. inflammation of the tunica albuginea. A lot of tests, no conclusive results. Except of course the plaques they finally found.

7) Does the pain or associated anxiety make it hard for you to sleep or get restful sleep at night?  Have you found any way to counteract this effect?

Yes. No...

[james12]

Pain specialists now prescribe treatments that attack moderate-to-severe chronic pain from different angles -- innovative drugs, targeted nerve-zapping procedures, and drug pumps that deliver strong painkillers to the nerve root. Doctors also endorse the use of psychotherapy, relaxation techniques and alternative therapies, supported by growing evidence of the mind-body connection in chronic pain relief.