Woes of a Prostatitis Newbie

[sediment6]

Hi everybody,

I would like to preface this post by saying that I do not pretend to "know the half it" when it comes to this terrible malady; I assume there are others who have it way worse than I do. Moreover I have tremendous respect for the selfless gentlemen who curates this website, to each and every honest contributor to this website, and to all the great urologists and scientists who are involved in the battle to cure this diabolical condition. As they say in southern Virginia where I live.....you're doin' God's work!

I have had prostatitis since July 7th, 2011. (about a month and several days.) It started out as a urethral, post ejaculatory burning type pain that would last for several hours. The first time the pain occurred, I was like "damn, maybe I shouldn't think about such hot women." Then it happened again the next day, and the next. Then a slight discomfort in my perianal area became noticeable. This happened about a week and half into the onset of symptoms. The pain went from purely post ejaculatory, to round the clock. Eventually the pain got worse and worse to where I am today. I've read significantly about guys having urinary symptoms, thank god I don't currently experience those. The only urinary symptom I have is a slight burning sensation pretty much every time I pee. The burning sensation doesn't hurt, but I know its not how I've pee'd for the previous 18 years of my life and I know its not supposed to feel like anything other than a regular tinkle! I went to the ER a couple times in the last week because of the abdominal pain. I have been to a female Urology PA who prescribed me 3 weeks of Cipro that didn't help at all really. She started to try Bactrim on me but thats when the abdominal pain started and I stopped taking it. A week later I had a GP tell me that because my multiple urinalyses were clear of anything, my CT scan showed now anatomical abnormalities, and my prostate wasn't "terribly swollen" that there's no point really in continuing with the antibiotics.

I have not yet had a cystoscopy, a EPS test, or an ultrasound though I am not too rushed to have those tests done because from what I have read, would they really reveal anything useful anyways?

To Date I Have....

• Perineal discomfort/ burning pain (borderline between nuisance and pain)
• Severe depression/ appetite reduction/ nausea from not eating very much.
• abdominal pain that I think is from the depression (big, big one, this is often debilitating)
• testicular burning and pain (significant symptom)
• burning on urination (nuisance)
• Inguinal Lymph node pain that radiates throughout my pelvis (big, big one, this just sucks, IDK how else to put it.)

My light at the end the tunnel? I was referred to physical therapy clinic that has a woman who does myofascial physical therapy for male pelvic floors as well as all that other "nifty" stuff with electrical measuring of muscle activity and biofeedback. This clinic is located in the same town that I live. Even more to my luck, in my conversation with the receptionist about my voiding history and pre visit histories, she said that the woman who does the internal PT was "trained in California". I was astonished and when I asked her if it was famous Wise-Anderson protocol that provided her training the receptionist said that was it.

So my first PT meeting is next week, I hope I can start down the road to recovery. I fully welcome any tips from the experienced folks out there.

[webslave]

Just some random comments:

1. Welcome
2. Make sure the PT has W-A training by checking with the PT;
3. You've only had the condition a short while, less than 3m, which is good. You are not yet in the chronic prostatitis / chronic pelvic pain syndrome category;
4. Abdominal pain and painful lymph node point to possible CFS element (I had it too);
5. Tests not worthwhile unless PT fails, in which case go for cystoscopy first;
6. Depression and anxiety are a feature in your case — get that treated if you can;
7. Start any accredited quercetin product (free, see my sig below).

[freddyj]

I feel for you. You state in your post feeling depressed and anxious (understandable)...which both compound any chronic pain syndrome, not just pelvic or abdominal pain. You could ask your GP about starting an anxiolytic dose of an SSRI, rather than benzodiazapines (which can be frustrating and lead to dependence). After really suffering for a few years, my impression is that the 24/7 tension occurring in your pelvis needs a 24/7 treatment.

[sediment6]

Well I went to the physical therapist today and several hopeful things happened that I feel the need to share.

1.) The initial physical therapist guy said that he thought my pubis/pelvis was slightly tilted in such a way as to cause the right side of my front external pelvis and the right side of my pelvic floor to be painful/messed up/spastic. The left side wasn't really painful. The right leg was harder to lift than the left, right everything seemed to be messed up. Ever since he pointed this out to me i've noticed that i always sleep in such a way as to relieve the right side of pressure and I always cross my legs in a certain way when I sit that addresses my right pelvic floor. All of this I do, without any conscious thought, its such an engrained habit.

2.) I confirmed that the woman I'm seeing was trained by Dr. Wise in California.

3.) He gave me some stretches that i'm going to do twice a day along with a hot bath once a day. Starting today (its only my first day after my first PT meeting.)

I don't need pain medicine ever, unless I "aggravate" my pelvic floor by masturbating. My first Internal PT meeting is later this week. I think at this point half the battle is won because I feel like now I have the comforting knowledge that my uncomfortable pain actually comes from something tangible. Granted the main fight is getting rid of the damn bothersome burning pain, but the stress is gone because i'm not driving myself crazy from worrying all the time. Tangible Information like "oh its just this horrible rare bacteria" or "oh you have a dysfunctional pelvic blahbiddy blah" Is really comforting to know. I am confident that in a half a year to a year or so of physical therapy and stretching I'll be alright. I'm just glad the ulcer I gave myself from worrying healed, that shit hurt so bad! Who knows I might be able to have a normal libido and ejaculate one day and not fear the burning pelvic muscle spasm afterwards. I might be able to drink one whole glass of wine and enjoy the lovely subtleties of a day without nagging pelvic pain.

Thanks to FreddyJ and webslave for your replies. It means a lot to a lot of people what y'all do here.

[sediment6]

Update:

I have been doing the stretches recommended to me by my physical therapist as often as I can. I had my first internal PT session today and at one point when she pressed on the obturator muscle, the pain in my right testicle was "reproduced". In addition to that when she pressed on that same muscle another painful spot of mine made itself known to me in my pubic bone where the abdominal muscles tie in. I now believe that there is a connection between my right obturator muscle and some of the symptoms I have based on this discovery. Unfortunately my life remains utterly miserable at this point in time :sad:


un·dead
adjective /ˌənˈded/

(of a fictional being, esp. a vampire) Technically dead but still animate

[sediment6]

Update:

I have resigned from college for this semester until I can get all of this mess straightened out. I have a dim hope that physical therapy will cure me. I have also come to the realization that I am deeply disturbed from the events of the last 7 weeks so I've taken the liberty of scheduling an appointment with a counselor to help sort things out.

[torontomale]

Don't give up and don't think about it 24x7. Try to enjoy life and continue with your stretches. Good luck.

[sediment6]

Update:
I got a minimum wage job washing dishes at a local restaurant which I think is the nicest thing to happen to me in the last month. I am seeing the psychologist for the second time tomorrow, in addition to my first visit to a pain management clinic. I must say that I am opposed to both narcotics and antidepressants. I also am meeting an actual urologist later this week as well. My plan for meeting with the urologist is to rule out all of the many ridiculous possibilities as to why I am in pain. Today I had some kind of ultrasound therapy on my inner hamstring. Basically the PT rubbed some fancy device on my ass for 8 minutes.

My Theory:
I don't think I have true prostatitis. I don't have any urinary symptoms other than mild burning. I have no frequency, hesitation or dribbling. I don't wake up at night to pee and I feel like post ejaculatory pain is not as nightmarish for me as it is for a lot of people on this forum. What I do have is a lot of penile, testicular, and peri-anal burning. Burn, burn, burn, burn. All the time. I have discovered via my physical therapist that my right leg is harder to lift than my left and that I have some really tight, knotty, and painful fascia on my right hip flexor. I've had problems with my hip in cross country in high school in that exact same spot where the fascia is screwed up now. The last 4 months before I got "prostatitis" I was weightlifting and my PT thinks I strained my pelvic muscles pretty bad by squatting with bad form. I've also had a traumatic childhood with both of my parents being chronically I'll with hepatitis C and breast cancer. I also have allergies, all my brothers have allergies, Every member of my family and all those on my mom's side of the family have depression. So based on what I have read, I think I fall into the general type of person to get this illness.

Conclusion:
I think I have "pelvic myoneuropathy" and that I just need months of physical and psychotherapy to calm my knotted muscles/fascia and my terrified mind. After I get this pain calmed down, I'll be able move along at a brisker pace.

Something I must say though, life does seem kind of lame right now. My girlfriend and I have been in a long distance relationship ever since going to college. I think me stopping weightlifting, dropping out of college, being depressed, and being in constant pain with no end in sight is going to be the proverbial "straw that broke the camel's back". Plus the transmission in my car is as F'd up as my pelvis right now.

[webslave]

This may be applicable
https://ucpps.men/lifting-and-testicular-pain-epididymitis

[sediment6]

I don't feel like stretching helps at all. The only thing that provides any degree of relief besides analgesic painkillers is the humiliating and painful internal physical therapy that I can only do once or twice a week. Even in the case of the internal PT it only provides maybe a few minutes of barely noticeable relief. Since the PT and I meet so infrequently I'm thinking about swallowing some more pride and ordering one of those massager dildo things off of the internet (satan 1, Me 0) . Can anyone please direct me to a good dildo thing for the purpose of dealing with trigger points in the pelvic floor? Lately the burning in my testicles and penis/urethra is so bad that i've had to eat pain medicine which I hate.

From what I gather this condition is curable in one of two ways:

Option A: a few years of monk like discipline over one's body (the Stanford/Wise-Anderson Protocol, or Zen and yoga, etc etc.)

Option B: 5 - 10 years of miserable "living" and then it just goes away if you're lucky.

Thoughts:
This really is a diabolical disease. Its almost unbelievably terrible. I mean it just feeds off of your sadness, which it also causes. Nobody can fix it really. your intimate organs hurt all the time without fail. It takes away the joy of doing pretty much all the stuff you liked to do before. I don't know about y'all, but lately my best days with this disease have been as good as my worst days without it. I mean what kind of god dreams up this incurable nerve muscle disease s***!? I mean really. What the F***!? I've only had this for not even 2 months and some of you guys have had it for years and years. I genuinely do not understand how you guys do it/did it. It amazes me, you guys have to be the toughest most indifferent people on earth. How do people live without joy? It just boggles my mind.

[webslave]

Your attitude is wrong and you're not helping yourself by thinking along these lines. I'll let others explain.

[guy97]

I'd like an explanation, too, honestly. On my worst days, I feel much like Sediment does... that this disease is sucking all the joy out of my life. I know that I'm supposed to do my best to not dwell on it. I know I'm just supposed to relax and stretch and drop the pelvic floor and think happy thoughts. (And do the massage, of course.) I know all of that.

But my f***in' penis, of all things, hurts from the moment I wake up until the moment I go to sleep. That's hard to swallow, especially when I know it's my own fault for being careless and getting a UTI. And the fact that nothing provides immediate, or even mid-term relief, that it's all with the vague promise of improvement several months or even years down the line, is really, really, really hard to swallow.

How do you guys do it? Webslave is cured, but some people here have seemingly little improvement after 12 years and that's, like... where I wouldn't even want to live anymore.

[webslave]

These thoughts are called "catastrophizing" and people who are prone to catastrophizing typically have a much harder time recovering. That's backed up by research.

The tendency to catastrophise (or catastrophize) is a deeply ingrained part of the personality, and extremely difficult for some people to suppress, but I cannot emphasize enough how important it is that you try.

You could start with relaxation CDs and books (the book by Wise on relaxation is aimed specifically at this audience).

[sediment6]

Without health life is not life; it is only a state of langour and suffering - an image of death.
~Buddha

[webslave]

To enjoy good health, to bring true happiness to one's family, to bring peace to all, one must first discipline and control one's own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.
-Buddha