Please help, can't find about my problem anywhere in the net

Male pelvic pain, prostatitis, IC
Paulius

Please help, can't find about my problem anywhere in the net

Post by Paulius »

I am 21. My native language is not English but I will try to express my self as clear as I can.

My problem (pain after ejaculation):

I experience this problem from my early childhood (10 years or so). Every time I ejaculate after ~ ten minutes I start feeling a strong burning pain. The pain usually lasts for 8 - 12 hours almost most of the day. I personally believe that something may be wrong with the sperm because it burns all the passages throughout its way. I feel the pain not only somewhere inside but in my whole penis and it becomes worse if I feel erection during that 8 hours after ejaculation (DURING THE ERECTION it feels like the cells are going to explode because of the pressure, especially at the base of the penis).

I wanted to write here, because it gets worse. And nowadays my penis becomes less and less sensitive and I also feel to have some problems with my potention (it is hard to focus in the end of intercourse) though my girlfriend does not sence that yet.


My story:

I went to the urologist for the first time when I was 15 with my father, but I was to embarassed to tell what was wrong to me. The doctor told that everything was ok.
Then, after 5 years, last year I had enough courage to go to an urologist myself because I had lots of pain everywhere and I could barely sit (it was really bad to me, because I am a musician and I have to sit). As I suspected the doctor diagnosed me a prostatitis and according to him after few moths it was healled.
I really don't have any pain when I sit and other symptoms of prostatitis but he did not help me with my pain problem after ejaculation at all and as I said I am starting to have troubles with my erection in such a young age. 21!!! It terrifies me a lot. I really love that woman and I want to marry her, but I am not sure what it will be with me in the future.

Should I go somewhere else to have tests or something? I have read many things in this page but I did not get the answers what was happening to me all these years.

Please help me if someone knows something about that. I am really terrified of my future.
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LightningTree
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Post by LightningTree »

Hey there,

I had post ejaculation pain, yes, usually after about 10 minues, once of every three times I ejaculated. This started around age 12. At age 30, I developed 'prostitis'. Anyway, I avoid sitting whenever possible now. This has helped reduce my symptoms

As a musician, could you get away with standing, if you informed people you had a medical condition?

This is not medical advice, and I am NOT a doctor of medicine or a related field.
* Age:33 Onset: February 2004.
* 99.9% IMPROVEMENT in 2.5 Years with the first year being the really hard part
* Current Symptoms: Mild irritation of perineal muscles on occasion. Relieved for days at a time by a specific stretch (see below).
* Initial Symptoms: Terrible penile, urethral, rectal, and perineal burning/aching with addition afferent sensations.
* Current Treatments: Deep stretching of the legs and pelvis. Most effective: Deep psoas and levitar ani stretch using the first phase of the "pigeon pose" from Yoga. When a deep pulling is felt in the middle of the pelvis next to the upper rectum, symptoms are completely alleviated for several days.
* Past Treatments Hyperprotection of the perineum for 1.7 years, Walking, Rectal biofeedback, Stanford/Wise-Anderson Protocol, Conditioned deep relaxation practice, Men's Multi-Vitamin and an Extra B-complex pill, all seemed to help.
Paulius

Post by Paulius »

Hey,

Thanks for your respond :)

Yes, I also try to avoid sitting. This helps to heal from prostitis, but I believe that that pain is not related to prostitis. It began much before I got that prostitis anyway...
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Post by LightningTree »

I understand where you are coming from. I didn't get "prostitis" symptoms until decades after I had the burning sensation in the tip of the penis.

All I know is that after a year of doing stretches and not sitting very often, I no longer get post ejaculatory pain at all.

(Now if only I could get my remaining sensitivity to sitting to go away. Any sitting for more than 30 to 40 minutes causes a day of perieneal pain.)

This is not medical advice, and I am NOT a doctor of medicine or a related field.
* Age:33 Onset: February 2004.
* 99.9% IMPROVEMENT in 2.5 Years with the first year being the really hard part
* Current Symptoms: Mild irritation of perineal muscles on occasion. Relieved for days at a time by a specific stretch (see below).
* Initial Symptoms: Terrible penile, urethral, rectal, and perineal burning/aching with addition afferent sensations.
* Current Treatments: Deep stretching of the legs and pelvis. Most effective: Deep psoas and levitar ani stretch using the first phase of the "pigeon pose" from Yoga. When a deep pulling is felt in the middle of the pelvis next to the upper rectum, symptoms are completely alleviated for several days.
* Past Treatments Hyperprotection of the perineum for 1.7 years, Walking, Rectal biofeedback, Stanford/Wise-Anderson Protocol, Conditioned deep relaxation practice, Men's Multi-Vitamin and an Extra B-complex pill, all seemed to help.
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Robert in New York 20 years experience

Post by robertpagen »

:mad: I can relate to the"terror" which you feel but first thing you need to do is get your emotions in check. It will be impossible for you to make good rational decisions in that state and peolple (doctors) may take advantage of a man who is not thinking clearly.

My name is Robert and I am now 38 years old. I have weathered a storm of symptoms for over 20 years, including the phantom burning you speak of. Remember that in 1982, when I was in High school, there was no internet. When I was irritated I went to the doctor, who would test me and tell me there was nothing wrong. When I told them I was still irritated they would say they don't know why. I would often accuse the woman who I was sleeping with of infecting me with something. I was sure because I felt a burning sensation. Over the years I tested my urine dozens of times, prostatic fluid twice, and took doses of antibiotics which did nothing. I used to masturbate to empty the "infections" from my prostate. In addition to burning, I had terrible pelvic pain and urinary urgency. In the absence of any plausible explanation from the dozen different urologists I saw about my symptoms, I would become paranoid, after every sex act attributing my discomfort to that person. I left a fine wife because the pain and dysfunction, coupled with FQ's which no man should ever take, drove me to madness. In those years prior to 1999, there was no source of info and doctors simply told you that you were crazy. You all should appreciate how lucky you are to have this forum and should gladly send the same fifty bucks I sent to it.

Anyway, back to the point, the cycle of tension takes its toll on the local muscles and nerves and you are irritated. If you have been tested regularly for infections and they are not there then that's not it. I think the explanation of chronic prostatitis / chronic pelvic pain syndrome as a muscle tension disorder is applicable to those who feel a referred burning at the penis. I further see it as a potential overuse injury, much the same as what we see in sports. Your "terror" serves no good purpose.

While I have finally taken the time to address all of you on this post, I will tell you that I think everyone here needs to be more specific in their posting to be helpful to others. Without specific info, this becomes just voyeurism. For example, many speak about PT therapy but no one addresses the costs. In my experience, since first learning of the tension theory in November 2002, I have gone up a few dead ends with a Great Neck PT, and one on 3rd Ave in New York. Both seemed like open ended laying out of 110 to 125 dollars a session with no cooperation on insurance reimbursement. I am a working engineer with a son and I can't just throw money at a PT who seems to have learned the theory yesterday, last month and is learning on me. I need to have someone who knows what they are doing. Otherwise I mind as well fly to San Francisco for treatment from Professionals who know this method. Even after learning what is wrong here, the pursuit of treatment remains logistically and financially difficult. My son wants me to play with him during this NY snow storm tonight so I will follow this post with my opinion of how to effectively live a life without letting these symptoms drive you to mistakes.

My sincere best to all of my brothers who have been challenged by this condition.

Robert Pagen, New York
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
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Post by webslave »

You make some very good points, Robert, and I look forward to your further thoughts on this topic. :smile:
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Paulius

Post by Paulius »

Hey Robert,

It seems you have seen a lot in your life.....

I did not really understood what you wanted to say here:

"....those who feel a referred burning at the penis. I further see it as a potential overuse injury, much the same as what we see in sports."

As I understood you suggest to let it rest for a while. :smile: maybe it is worth trying.....
Paulius

Post by Paulius »

...and one more thing.....

it seems from your letter that no one has actually helped you with that problem of yours. Is it worth going to those doctors again and again? I already spent about 500$ for my healing of prostitis last year.(it is a lot in my country)
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robertpagen
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Post by robertpagen »

:smile: Hey Paul, I know how it is to spend (waste) money on treatments which go nowhere. You have to have a sense of humour about it. Though I am a New Yorker, I lived in Hong KOong and China from 1993 to 1996 and in the absence of any real idea of what was wrong I went to several unusual characters who were glad to take hundreds of dollars at atime for the service of burning incence on my abdomen, sticking needles in me, or having me drink herbal tea concoctions which would only irritate my bladder and make things worse. I can look back at it and laugh at myself but at least I was trying. I have met personally guys who have done even more unwise things, like flying to arizona and letting a "doctor" administer a prostate massage DAILY for over a week. I can only Imagine the mind blowing pain that must cause. So hey, compared to us, you haven't spent too much. Which is why you need to keep a level head.
REMEMBER THIS SUGGESTION! You say you have a girlfriend. ALWAYS ask her opinion before getting any treatment. If she senses something wrong listen to her. My woman has saved me from doing some stupid interventions in life("WE can cut open your bladder neck and everything will be great") Respect her opinion and you will be better and closer for it.
Work up from the simple, cheap, non invasive methods. Stretch, yoga is an effective method of calming the Central Nervous system (One Thousand years of history from India). Pilates is a modern adaption of those disciplines. You will be OK when the action is your own.

A pro massage is good, yet considering where your tightness is, having your lady give an amateur massage is better and cheaper.

Snow is deep outside here in NY
Be well, Robert Pagen
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
Paulius

Post by Paulius »

Thanks for your advices, Robert.....I think they are worth listening to...

I am really happy I wrote here today as I feel now somehow much better psichologically....though it is 4 a.m. in Vilnius (that's the city where I live) and I should be working with some things as I always do at nights.

By the way, I practice Yoga already a year and a half. :smile: I think this problem and also back pains were the reasons that I started doing that.
It is really good to remove pressure from all the muscles.
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Post by robertpagen »

:evil: :icon_smile_lachuh:

Hey Paul, Just to respond to your question has anyone helped me.

Of course people have helped. By July 2000 I had become worn down by the ache and life affecting symptoms that I considered jumping off one of my building projects on thhe roof where I was working as a Telecom Engineer/Technician. That was the nadir(low point).
Since then I have stood on the shoulders of Giants like David Wise (whose counsel was very considerate and whose struggle I respect very highly) and a dozen other human beings who are good at what they do.
Symptoms are better but I still have flares which I continue to seek answers for. They irritate me. They affect my life.
Yet much living goes on. My healthy son turned three yesterday. His mom and I do a good job with him. I have always worked through my ailment, save for taking some sick days. So I have a nice job and a good home.
On the other hand I have meditated on suffering and I put mine in perspective. There are many in this world who have gotten a worse life than I and who have been braver in facing it. Children with terminal diseases, adults beset by amazing hardship. To paraphrase the american revolutionary leader Patrick Henry, In the choice between Pain and Death, I will take Pain. Your perspective on your condition is very important.

And life will reveal answers,

Got to go build a snowman,

Robert Pagen
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
Paulius

Post by Paulius »

Thanks a lot.

positive thinking! that is what people need. What you wrote about your family, child, snow outside in New Yourk and other things......if I am lucky to have a good understanding wife and children those pains will be of minor importance...
anyway, such problems scare a lot in my age.....
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Post by scotsman »

robertpagen wrote:On the other hand I have meditated on suffering and I put mine in perspective. There are many in this world who have gotten a worse life than I and who have been braver in facing it. Children with terminal diseases, adults beset by amazing hardship. To paraphrase the american revolutionary leader Patrick Henry, In the choice between Pain and Death, I will take Pain. Your perspective on your condition is very important.
Completely agree :simsim:

Managing to frame this condition is my main coping mechansim. I try to bring out the positives as often as I can: I've changed careers to less stressful one and one I enjoy as much as the 'high-flyer' life I had. I'm at home more instead of living out of hotels. I feel I appreciate the good and happy things in life more and outwith the chronic prostatitis / chronic pelvic pain syndrome I'm a LOT healthier (weight loss, little alchohol & junk food, etc).

My wife is due with our first child in 5 weeks time (IVF after 7 years of trying) and despite the constant pain and how that pain has forced me to make changes, good and bad, I can honestly say that I feel like the luckiest man alive.

This forum gives me the most amazing levels of support and encouragement and sitting at the PC this morning (frosty Scottish Sunday morning) reading Roberts posts has given me another lift.

I'm away to have a chat to my wifes bump :-D

Richard.
Not medical advice: Read my progress to date : Read about my W-A clinic visit

Age: 54 CPPS: 20 Yrs Recovery Status: 95% Symptoms: Pain around perineum Makes Worse: Tension, sitting Makes Better: Stretching, triggerpoint therapy, relaxation
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Post by chewymix »

Robert -

Have you tried Stacey Futterman of H&D Physical Therapy in New York City as according to others on this board she seems to know her stuff.

thanks
Age: 32 | Onset Age: 26 | Symptoms: 'Pelvic' pain / Abdominal + Pelvic + Hamstring Tension | Helped By: Relaxation / Rest | Worsened By: Sitting / Tension
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Post by robertpagen »

:wink: I was refferred recently to Ms Futterman by Dr David Kaufman in NY. (Dr Kaufman undertstands this type of condition) but when I contacted her office they did not take my insurance in network. As this is an open ended commitment I instead have been going to Ann Duffy at Duffy and Bracken on Maiden Lane in NY(Also refferred by Dr Kaufman), who are more cooperative on insurance reimbursement issues. I have not yet seen concrete results and I am making firm plans to go to Stanford for a week, "The A team".
I also briefly tried EMH in NY fron 11/03 to 3/04 but it seemed to me that they were all in training and too new to the protocol. My PT was Kathy, who certainly was a nice person.
Dr Robert Moldwin at LIJ understands the links between Pelvic Floor dysfunction and underlying causes like IC. He reffered me to a PT in Great Neck who seemed knowledgeable and capable, but was pricey.
So more than two years after understanding the theory, it's still a slog through the mud.

Robert Pagen
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold