My story 6 months in - input appreciated

[da0092]

Just been doing a bit of reading in A HEADACHE IN THE PELVIS about my new symptoms, and I see that perineum pain/inflammation is commonly referred from the adductor magnus. I've been doing a lot of intense work on my adductors in the last week with both a Theracane and foam roller, as I've got some huge trigger points in there which weren't showing much improvement despite repeated work from my PT. I don't feel any soreness in the adductors despite my self-work, but is it conceivable that the inflamed perineum I have is a result of this?

As for the pain around my coccyx, I'm still wondering on that one, but at the minute it's generally manageable, although on a couple of occasions has caused quite strong pain for around 30 mins after a bowel movement. Will just keep up all the techniques I've been following and hope that it improves. Perhaps I've been focussing too much on anterior muscles both with my PT and self massage, since my primary symptom is penis tip pain, so looks like it may be time to give the posterior muscles more attention.

Oh the ever changing face of CPPS! All in all generally managing okay, feel like the good progress I was making over summer has reversed somewhat, but almost certainly because I'm now in the US undergoing my flight training with is very stressful with a lot of tense sitting. Only about 4 months left of that, and then back to familiar surroundings and a more relaxed schedule... which will hopefully be conducive to my situation improving.

[webslave]

Getting relaxed again will be key. CPPS used to be called "the truck driver's disease" (or "trucker's disease") because tense sitting, as truck drivers do when piloting large vehicles in traffic, is one of the worst environments for pain generation.

[MajorSky1]

(woops, this was a reply to European at the bottom of page 1).

I often have PF pain anywhere from 5 to 20 minutes after a BM. It's the same principle. There are nerves that aren't sensing normal, and they also cause just enough muscle tension to perpetuate or even increase pain for a while after ejaculation, or in my case a bowel movement. I have proven that the less I truly worry about pain after a BM, the less pain I have, and if I distract myself the right way, I'll have virtually none. I have a similar issue with the left testicle after ejaculation sometimes too, spermatic cord spasms. Don't care anymore if it does. Sometimes it's still gets annoying but I just try to care that much less. It ALWAYS fades away. So I'm onto it.

It seems this is how set up to become chronic back when it started. It begins with repeated and consistent muscle/nerve pain cycle that is more physiological, and after a while it reprograms the NS/brain to feel pain as a norm, or turns into over sensitization as over time, more pain sensory neurons are used as sensory pathways. And then, it sort of locks in the cycle. If one could interrupt the cycle early on, it would be much easier on the nervous system and prevent over/hyper sensitization, hyperalgesia. Remember when you were stressed out and a friend would say "relax dude, or your going to blow a cog"? Well, you blew a cog.

As for returning chronic pain that had been resolved previously for years, I don't so much think that everyone is susceptible to that, but some people return to bad stress habits or mechanical situations or injury that got them into trouble in the first place. Just like retraining the brain and healing yourself from this works best when you take a proactive approach to not letting the pain get to you, and retraining yourself to accept the pain as meaningless. In the same way, if think you might get it again some day, or have FEAR of getting it again, you probably will.

As so incredibly difficult as it can be to accept that this condition is about frame of mind and process of thinking and handling stresses and triggers, anxiety and fear, the sooner you accept that reality, the more you are on the true road to recovering and seeing results.

It has been proven to me that the pain is created by the brain. It's real pain, but it's a misfire/phantom/subconscious fears and anxieties manifesting through the nervous system, tightening muscles and connective tissue around sensory nerves, stimulating Meisner's corpuscles, and causing distorted impulses. Nerve impulses are chemical reactions when it comes to pain. When the axon is inflamed it doesn't function correctly and causes that ache you feel. It's not injury, just malfunction (unless there was actually nerve damage via injury to begin with). In other words, the nerves aren't going to die, they just feel like it, and that causes the muscles and connective tissue to reflexively tighten more. It only takes 10% connective tissue tightening to reduce blood flow to tissue by 60%. So, 10% tension can cause quite an oxygen deprivation in tissue over a certain amount of time. It's not enough to cause necrosis, just pain.

Once this condition becomes chronic, it's driven by the anxiety the pain causes. It can be REALLY hard to accept that when you're hurting like hell for weeks at a time, but it's true.

To sum it up - it starts with injury, infection, or some combination where often there is also an overwhelming emotional trauma (dying loved one, bankruptcy, other mega-stressful life events that dredge up a period of anxiety) and sets up a pain cycle that perpetuates itself even after tissue is healed, and the actual causation of traumatic stress is over.

Remember that stress can kill a perfectly healthy caged wild animal quickly. I've seen it happen.

Sorry for the big post, but I LOVE this field of study and find it fascinating as hell, and I'm in school to be a PTA right now and I'm working with my school to specialize in nerve and muscle pain, particularly pelvic pain. I haven't seen evidence that PT alone is a silver bullet for this condition, but it definitely helps bring relief, and is an important tool in the toolbox for recovery.

Happy New Year to all!

[mshaqal]

Happy New Year to you too.

[dailysuffering]

Excellent post thank you Majorsky1

[da0092]

I posted in December regarding new pains in my perineum and coccyx. I'm pleased to say that I've managed to almost completely sort my perineal pain, by gradually working on my adductor magnus. It's only after an intense session on my adductors with a foam roller that I have any noticeable perineal inflammation, and this subsides within a day or two.

However the coccyx pain has been more frustrating. At times it has been no problem, and others has been quite uncomfortable. Right now its at it's worst, and feels like I've been kicked very hard directly on the coccyx. My PT worked hard on my posterior muscles yesterday and so it's likely that we caused a flare.

I've been following my normal routine of hot baths and stretches, but the coccyx pain is being pretty persistent. Does anybody have any strategies for this particular symptom? I'm considering going in with the wand, but wonder whether that would be a bad idea as the muscles were worked on pretty hard less than 24 hours ago during my PT session? It stopped me sleeping last night, I think the first night that pain has really impacted my sleep at all!

Thanks.

[da0092]

It's been a few months since I posted. I'm pleased to say that things appear to be moving in the right direction, coccyx and perineal pain are things of the past, whilst the penis tip pain is slowly improving and the flares aren't lasting as long. I'm going to hold off a few more months before giving a full update, to ensure no false dawns, but the signs are positive.

Over the last couple of weeks, I've had a couple of bouts of inflamed scrotum skin. The first time it cleared after a couple of days of using a moisturiser before bed. However it then returned a few days later (after a particularly hot weekend by UK standards) and has been apparent for about 4 days now. For 3 days I've been applying a hydrocortisone cream that also contains anti-fungal and anti-bacterial agents to try and clear it, but haven't yet seen much improvement. I will of course continue to use the cream for up to a week, but just wondering whether this symptom can be in any way linked to CPPS? I really think it's just a case of jock-itch or fungal sweat rash, but thought best to check.

Thanks in advance.

[webslave]

Not related to CPPS

[European]

Hallo da0092, I have read that you had the problems with adductor magnus. This seems also be one of the main problem areas in my case, especially on the right side. My PT confirmed that and the spot where adductors is attaching the pelvis was one of the first pain spots back in the beginning of my painful journey with CPPS. Which stretches did you benefit at most? I have generally shorted adductors, hamstring and lowered mobility of right sacro-iliac joint, according to my PT. My adductors problems are accelerated also after longer car driving (more than 2 hours), I guess this pedal pushing is the movement which is the culprit, not the sitting itself...what do you think?

[da0092]

Hi European,

My adductor magnus issues were very curious. My PT regularly reported that they were extremely tight, despite my attempts to stretch them using a routine very similar to that given in Amy Stein's book. I then invested in a foam roller and started using it on my IT band, quad, and adductor magnus every few days. After my first intense foam rolling session, I woke up the next morning with quite bad perineum pain and inflammation, it was very 'puffy' to touch. I was persistent with the foam rolling on my adductor magnus and after around 2 weeks of coming and going pain/inflammation on the perineum, the pain completely disappeared and has never been back since. All this happened when I was based out in AZ in Dec 2016.

I've continued with the stretching and foam roller routine and now by UK based PT doesn't think that any of my external muscles are in bad shape at all. Hope this helps.

[da0092]

I was probably about a month away from posting a '80% healed' or 'success story' post. All of my symptoms have settled incredibly well over the last few months and I was feeling very confident about the routine I had going. I haven't had a single spell of perineum pain since Dec 2016, my coccyx pain has been a thing of the past since around March or April 2017, and in the last couple of months even my penis tip pain has reduced to the point that it only affects me about 1 day every couple of weeks, maximum. My penis tip can still appear red and inflamed, but a topical moisturiser helps with that.

However, for the past couple of weeks I've had bad testicular pain. I've never had any pain in my testicles before, whether from this condition or otherwise. However my right testicle in particular is now quite bad, it feels like a (mild-moderate) kick in the nuts, while there can also be some discomfort in the left. For the first week or so, the pain waxed and waned. I went to see my primary care doctor who did an examination and informed me I have a cyst on the right epididymis (which I was already aware of) and this can cause discomfort after physical exertion and I shouldn't worry about it, at the time I didn't. He did book me in for an ultrasound scan which is in a couple of weeks.

However since then the pain has got a lot worse, it's now constantly there and is very uncomfortable whether I'm lying, sitting, or standing. I have another appt with a primary care doctor (GP) today. I know there are many cases on this forum of CPPS sufferers having tesicular pain, but to me it seems so strange that everything was on the mend so well, and now this has hit with no other symptoms. I have no urinary issues, no sexual issues, and as mentioned all my other pain issues are generally a thing of the past. Will be interesting to hear what the primary care doctor says today, but I'm expecting a dose of painkillers and a message to wait for the ultrasound.

[WS1234]

hey, just curious what product you use for the tip of the penis issue.

[da0092]

Getting relaxed again will be key. CPPS used to be called "the truck driver's disease" (or "trucker's disease") because tense sitting, as truck drivers do when piloting large vehicles in traffic, is one of the worst environments for pain generation.

As predicted, the 2nd visit to the primary care doctor didn't show up anything spectacular. My testicles are fine on examination. Looking very likely that this pain is due to CPPS. Very frustrating as everything seemed to be on the mend so well. Webslave or others, from your own experience or the experience of others, is it common to get a new source of pain far down the line of recovery? I'm trying to stay positive and will be applying all the techniques I have been over the last 12 months or so, but can't help but feel a little dejected as I felt I was very close to the light at the end of the tunnel. Any advice for specific strategies/exercises that have helped others with testicle pain would be hugely appreciated.

hey, just curious what product you use for the tip of the penis issue.

Hey WS, I use an Aqueous solution to clean my tip every morning in the shower. I then apply Biafine topical emulsion in the morning and evening. I was prescribed it when I went to see a dermatologist over in AZ, and then stockpiled on a few more tubes (they're about $40 each) before heading back to the UK. It settles the irritation very well, I find.

[da0092]

Just had the ultrasound on my testes. The radiographer commented that there were signs of increased blood flow in both of the testes, in other words inflammation. He commented that the epididymis of each testicle was fine. If this were linked to my CPPS, is it normal for there to be visible inflammation in the testes themselves? I've read other accounts of CPPS sufferers with testicle pain getting an ultrasound and the outcome seems to always be that the scan showed nothing abnormal. I can see 2 possibilities:

1. The testes inflammation is directly caused by CPPS and therefore it's a new symptom I have to deal with and overcome.
2. The inflammation is in fact sign of an infection (radiographer commented on 'signs of infection') which is completely separate to CPPS.

I'd love it if option 2 were the case, but based on my CPPS journey of the past 18 months I am sceptical. I'm currently mid-way through a 10-day course of doxycycline prescribed by my primary care doctor, as she thought there was a small chance of infection that was worth ruling out. I wasn't averse to it as had no negative reactions to doxy when I've previously taken them as anti-malaria tablets, and have been antibiotic free for almost a year now. As of yet I don't feel any better because of the doxycycline, but maybe 5 days is too early to judge.

Thoughts appreciated, particularly on whether inflammation of testes when viewed under ultrasound is normal for CPPS.

Thanks.

[webslave]

Thoughts appreciated, particularly on whether inflammation of testes when viewed under ultrasound is normal for CPPS.

Haven't heard that much, but keep in mind that CPPS-IC can result in nerve-mediated inflammation of any area of the lower genitourinary tract, in my experience running this forum. Bladder, urethra, prostate, penis, glans penis, meatus, epididymis, testes ... the lot.

There is another study showing increased blood flow in CPPS prostates
http://pubmed.ncbi.nlm.nih.gov/10737481