4 years of fighting, changes and hope

[gran torino]

Hi Guys,

It’s my first post but I’m not new here. I have been reading this forum for about 2-3 years, but yet I wasn’t confident enough to start writing and sharing my experiences. I’m pretty advanced in dealing with CPPS thanks to this website and Headache In the Pelvis book.

In the beginning I want to thank Webslave and other active users, whose support and knowledge were bringing me back to life step by step during these few last years. Many times during the day, when I was in huge pain, I found myself looking for answers and strategies here, so one more time just: THANK YOU because I owe you everything I have now.

My journey started around 3,5 years ago very suddenly, however some of the symptoms were noticeable a few months before the first attack:
- not very intensive pain located in the penis head,
- urethra pain during voiding – no bacteria found in several bacterial tests
- pain in testicles from time to time (several USG scans with no abnormalities found)

Then all hell broke loose (2013) – huge pain in scrotum, buttocks, legs, burning skin down to my feet, visible red veins on the penis shaft, scrotum and penis head, peeing every 20min day and night sometimes, sitting was impossible, driving was a nightmare, deep depression started and resulted in lack of sex drive and fun in life.

My first urologists diagnosed me with prostatitis (no bacterial tests) and prescribed 30 days of Trimetrophin and Ciprofloxacin (another 30 days) with 0 results. During first few months (I was assured by doctors that I have a bacterial infection) a took all possible types of antibiotics together with 60 days of Avelox – (Moxifloxacin). Prostate USG showed 35 ml and signs of inflammation, so doctors continued to prescribe more and more abx, which led to total devastation and dysregulation of my body’s processes. Of course I didn’t feel any difference between the time I was on and off antibiotics.

When it all started I was a healthy 30 years old husband and father of 2 sons, playing multiple sports regularly with successful but also enormously stressful professional career in the industry. After 1 year of abx and progressing depression I lost 8 kgs, whole self-confidence and all the fun which my private and work life was giving me. I found myself crying like a child when there was nobody at home, what pushed me to start taking antidepressants. And then things started to change a little bit.

First of all I started to ask questions. How can it be that one year of taking the most powerful abx was not able to help me? How can it be that most of the doctors in my country are not able to interpret all the other symptoms I had and that in no way can they be connected to typical bacterial prostate infection symptoms? This way of thinking led me to this website and HITP book, which did change everything. I started to fight and this kind of attitude was a game changer even in the darkest hour of my life. If you think there is no hope and that nobody understands you and what is more important – there is no help anywhere, you have to pull yourself together and say No. I don’t accept it and I’m going to win this battle.

I started with combinations of exercises that consisted of: yoga + Thai massage, stretching, internal massage of muscles, slow jogging, walking, breathing, relaxation + pelvis drops during the day. After 1 year my symptoms decreased from 10 to 4-6 depending on situation. My prostate had no symptoms of inflammation and its size decreased to 15ml – normal size for a male in my age. No pain during examination.
While sleeping I had no symptoms from the beginning of the syndrome so at least, I didn’t wake up tired. After 10-15 minutes in the morning everything started usually and so it is until now, since I’m not 100% recovered yet.

How does it look now exactly?

Sex drive is back , no depression, I’m able to find fun in life, but the pain is still with me every day. There are days that it is 1/10 and there are days it reaches 5-6/10. Just for my own peace of mind I did 3 bacterial tests during last few months (semen, urine, urethral swab and skin outside) – all negative with natural bacterial flora on the skin only. The most disturbing symptom I have now is urethra, penis and scrotum skin redness, itching, burning – lots of small red veins showing an increased blood flow. Since there is no physical reason for that (I consulted it with dermatologist and a supervisor of the laboratory at medical university), and I believe it is connected with tensed muscles and neurological disorder in the area.

Regarding pain in the perineum: it is much worse when I’m sitting and it is much better when I walk and I’m not stressed and here I find a big obstacle in further progress! Since I remember, I have been very stressed person. I was in constant quarrel with my demanding father, later I had huge problems as a university student (I studied 2 faculties working days and weekends) and now as a working person. It’s part of me that is very hard to change. I’m trying but I think that it is preventing me from achieving full recovery. I have changed a lot so far and I’m far different person in comparison to the situation few years back, but still – this is not enough. Changing a job is hard and for the moment not an option for me unfortunately, but I'm working hard to change my attitude to daily tasks and objectives. The good thing though is that I'm sure I'm on right track and it can be only better in the future.

That is all for now. Best regards to all of you fighting with this syndrome. I'm sure your are gonna make it!

Take care

gran torino

[webslave]

It's shocking that in this day and age men are still getting months and months of antibiotics for a regional pain syndrome!

Your remaining symptoms are most likely neurological in origin. If you want to see how nerves and mast cells can beat people up, do some googling of CRPS (complex regional pain syndrome). Studies show there is an element of this going on with CPPS patients (doppler scans of the prostate show increased blood congestion and flow). One researcher even hinted at a "male pelvic congestion". Nerves take a long time to recover from overuse syndromes, so just stick with the program and like me, you'll see a gradual improvement over time.

[European]

Gran Torino, I see many parallels between your and my situation, also struggling approximately 6-7 years with CPPS. I agree with everything you wrote, this long antibiotics treatment are completely useless in cases like yours or mine. I also felt from the beginning, that there is some kind of "pelvic congestion" within my pelvis - initially the only visible sign was enlarged dorsal penile vein, which changed its appearance overnight after prolonged sex/masturbation. The pain waxed and waned first 1-2 years before it became chronic. I missed precious time taking pills instead to go for PT...First PT session I had 3 years after the onset of pain. Still struggling with pain, despite the PT delivered some partial success. Stress is huge aggravater of problems, every summer I have better period vacationing in our weekend-house in the mountains...And every stress event takes a toll...Regarding the coping with stress: I decided to withdraw from any demanding activity in my work, social activities or so...My health is the most important thing and I don't explain it to those who don't care about it...I have my girlfriend and some close friends who understand that. I don't care about the opinion of the others.

Back to the topic: I also have a feeling, that after the years of CPPS, the neuropathic pain and regional pain syndrome becomes dominant and it is very difficult to treat it. Muscular pain and trigger point are relatively easy to treat and to deal with them...but this relentless neuropathic burning pain in the scrotum, sides of the penis and perineum is a big challenge. This is something which PT don't address. You have to find some mixture of mind-body techniques and maybe pills like Lyrica or Neurontin. You are not alone in this struggle, I am battling very similar one...

[gran torino]

webslave, European - thanks for feedback!

Indeed not many doctors are aware of CPPS and still antibiotics are first treatment to use - even without a single proof of infection. When I described my muscular problems saying that I feel bad while sitting at work, I feel numbness in legs and skin burning - one of the urologists said that this is not usual, but there is no better solution he knows, than longterm abx treatment. Since I knew nothing about CPPS then, I accepted what they said that should be done.

European - as I remember you are from Slovakia so "dobry den" my neighbour from the south ;) You have the best ski resort for snoboard lovers I know in the area - Jasna Chopok!!! The ones we have in Poland are not even in the same league!

I would say that antibiotics shouldn't be used in CPPS cases at all. First of all a urologist should provide tests for bacteria and leukocytes. If you have commensal flora only, then abx shouldn't be used, period!. It's a shame that so many men suffer because of doctors ignorance and unawareness.

Sometimes I feel better when I don't have time to think about the pain - when I'm focused on something in 100% (f.e. snowboarding - mostly I focus how to not die riding down the hill ;), so my nervous system's "eye" is looking completely somewhere else. If I have the time to sit down and think, what is happening to me etc., then is strikes with a double power.

Parts of my body which hurt me the most are: perineum (raw feeling, burning inside), sides of the penis as in your case (muscles which go along the penis are super tensed and hard especially after sex), buttocks (hurt like crazy when I'm sitting or even lying on them), upper parts of thighs - very close to the buttocks). When I'm in stress, skin burning on my legs starts and goes down to my feet. The feeling is similar to having a burn because of the contact with boiling water.

After these few years of fighting, do you still have problems with peeing? After a beer or two ;) I pee as a teenager, also after stretching it is much better. The problem is at work where I sit most of the time and sometimes I have to wait until it starts and the stream is very weak and thin. It is much better now, 2 years ago I wasn't able to pee f.e. in a public toilet at all. I felt embarrassed that I have to wait so long as you can imagine.

Thanks for support once again. I'm glad that finally I decided to write something. It's good to know I'm not alone with this struggle.

Take care

[webslave]

Problems with peeing are best overcome by sitting to urinate (like a girl, yes, haha, but it works). Sitting allows you to relax fully and take time to empty the bladder properly. If you lean forward a bit on the seat, it also places the urethra at a better angle that offers less resistance to the flow.

[gran torino]

Unfortunately this is something I started to do long time ago with no major changes down there. I'm working on it recently by implementing more squat type of exercizes to my regimen. Yoga postures are a blessing here and I feel really great after 1h of such practice. I observed that after few days of regular exercizing (stretching, yoga, etc.), I often feel dribbling of some muscles groups in the perineum and buttocks. It was mentioned on the forum as a good sign, so it is kind of motivation for me to exercize more ;)
During working hours I try to inhale and exhale consciously and press air towards the pelvis to stretch everything out.

The most annoying thing though is the minor inflammation of the penis and scrotum skin with increased blood flow, visible as multiple micro red veins everywhere. This is a problem since there is a constant contact between my body and clothes, which I wear. I find it as rather not very common symptom, as many users here rather complain about general sensitivity of the skin in different places, especially in the genital area. I'm not able to control it apart from one simple rule: too much sex leads to increased redness and sensitivity, lack of sex - the symptoms are rather bearable and stay at very low level :) That for sure affects my head to a greater extent than other things. The good thing is that it is much better than it used to be when sex was impossible and sensitivity to touch was super high.

[webslave]

too much sex leads to increased redness and sensitivity,

A lot of sex irritates the nerves of the region. I urge men to find the "Goldilocks" level of sexual activity, which is different for each man, not too much, not too little. And of course, no tensing.
viewtopic.php?f=34&t=627

[European]

Hallo Gran Torino, yes, you are my neighbour ...you see, CPPS has its branches in every country

My pain profile is very similar to yours: pain in perineum, groin, shaft of the penis and base of the penis - these are the 4 most problematic areas for me. Especially this side penis pain is sometimes truly debilitating, mainly after ejaculation - it last several days (sometimes 10 days or so..). I was also a heavy clencher during the sex and masturbation and now I try to avoid ejaculations as much as possible because it is really debilitating...Maybe the worst psychological factor for me is that post-ejaculation pain is never immediate but starts 24-48 hours later...which makes the "waiting" for pain after ejaculation pretty horrible experience...I suspect my mind to "learn" it somehow in sense of negative learning...horrible things...

Yesterday I was at my PT, he focused more on the internal work with spots in anterior parts of levator ani, which are according to Wise and Anderson in 90% responsible for penile pain....I am still feeling pretty raw and my prostate and all its attachments were pretty painful...but there was no reproduction of familiar pain patterns as it was in the past...I feel that the trigger points deep in my anterior parts of levator ani (pubbococcygeus) are the main culprits...and maybe irritated pudendal nerve...

I don't have much problems with urination, there is slight hesitancy and dribbling, maybe weaker stream, but no real pain associated with urination, If these minor urinary symptoms were my only problem, I would be the luckiest person worldwide...Are there other sufferers who are fighting with significant pelvic pain despite having no or only insignificant urinary syndromes?

[webslave]

Those who have painful urination usually have an IC element. The hallmark of IC is urination pain.

[European]

So webslave, do you think that having the pelvic pain without significant urinary problems is pretty often? or is it seldom?

[webslave]

It is the norm, although urinary problems can feature for a time in most cases, because nerves in the region cross-talk:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2805190/

[gran torino]

And that is very unfortunate in this syndrome. One trigger activates lots of different types of symptoms. F.e. sex in my case leads to pain of the muscles in the pelvis, odd feelings along legs and increase of redness of the skin on the scrotum, penis shaft, foreskin and glans. I think the redness symptoms can be explained as Male Genital Dysaesthesia and they always fade down after a few days when I feel close to normal.

New thing which I'm going to test is low-histamine diet, what is often suggested to women with IC. I'll let you know, if I achieve something in this field.

[Alphalifestyle]

European, you mentioned the term "Pelvic Congestion" in this thread. Actually I am curious if there is any proof that CPPS symptoms could be caused by Pelvic Congestion, defined as varicose veins in the abdominal area/pelvic area. I know that this is treated as an exclusive womens issue, but I had varicose veins in my leg and also the veins in my penis become pretty prominent in recent years. Could chronically delated, varciose veins put pressure on nerves in the pelvic and produce pain, inflammation and dysfunction? Or is is "Male Pelvic Congestion" and clinics who offer operations for that as shady as the whole pudental nerve entrapment business?

What would be the diagnostic method of choose to check for damaged pelvic veins and what Doctor would do it?

Actually webslave posted something related a few years ago:
viewtopic.php?f=4&t=6853&p=38164&hilit= ... ion#p38164

So, should everybody of us do a 3D MRI venography to check for palvic vein congestion or is this outdated information?

[European]

The varicose vein should not be factor pressing to the nerves, because veins are not from hard body. But general problems with pelvic myoneuropathy, pudendal neuralgia etc. are frequently coinciding with varicose pelvic veins. Unfortunately, there is no surgical cure, the surgical repair has pretty abysmal record in this field. I also had a prominent enlarged dorsal penis vein in the start of my problems, so I think that some kind of pelvic congestion is in play in my case...