Do I have CPPS?

[Dangerous_Dave]

Hi folks, been reading this forum for a couple of weeks, but this is my first post.

I have been suffering from groin and abdominal pain for nearly three months now, and am struggling to get a diagnosis from my GP or Urologist. Symptoms have improved slightly since the initial onset in November but are still greatly affecting my quality of life, work is a particular problem as I do a sedentary job (IT manager) and sitting aggravates many of the symptoms.

I have Googled my symptoms, read this forum and 'A Headache in the Pelvis' and everything seems to point to dysfunction or tension in the pelvic floor muscles, potentially caused by anxiety disorder and/or physical activity (I hike, cycle and lift weights - at least I did before all this started). However, when I raised the issue with my Urologist, he told me CPPS was ‘very rare’ and dismissed it out of hand.

Therefore I am posting my saga on here in the hope one or more of you will identify with the symptoms and perhaps help me reach a diagnosis that seems to evade my healthcare professionals, It feels like I am banging my head against a brick wall with the NHS so any pointers would be gratefully received. If this is CPPS, as I suspect, can anyone recommend a Wise/Anderson practitioner in the UK?

Timeline:

• 25/10/13 –GP informed me I had BXO (Ballanitis Xerotica Obliterans) and would need a circumcision. Start of period of increased anxiety
  26/10/13-1/11/13 – bad constipation, felt like I needed to go but pelvic muscles wouldn’t push!
  31/10/13 – 8 mile walk – could this have triggered symptoms?
  1/11/13 –Burning pain at base of penis during ejaculation, followed by urinary urgency, pain in urethra, tip of penis, testicles and base of penis. General onset of urinary/ejaculation symptoms.
  6/11/13 – Abdominal pain, went to out of hours GP: urine dipstick test and MSU tests - both negative for infection, glucose etc, checked prostate – no inflammation or sensitivity. Hernia and appendicitis ruled out. Treated as UTI and given course of antibiotics (Trimethorpim) – no effect.
  19/11/13 – First appointment with Urologist, referred for Ultrasound and Cystoscopy appointments
  29/11/13 – Ultrasound appointment – no urine retention, no bladder or kidney problems
  4/12/13 – Cystoscopy appointment – no problems, prostate and bladder both healthy. Urologist suggested I ‘retrain the muscles’ by delaying urination for 30 minutes from initial urge.
  20/12/13 - GP proscribed Naproxen for Side/hip pain, referred me to physiotherapist (still to have this appointment)
  21/12/13 - Bought ‘A Headache in the Pelvis’. Tried Paradoxical Relaxation but not confident self-administering trigger point therapy.
  2/1/14 – GP prescribed Propanalol (Beta Blocker) for Anxiety disorder
  7/1/14 – Saw urologist for circumcision op, suggested pelvic pain problem was ‘probably Prostatitis’ - prescribed Amitryptiline
  7-20/1/14 – Slight improvement in symptoms - possibly due to Amitryptiline/Propanalol

Ongoing symptoms include:

• -General feeling of need to urinate, especially after sitting (especially when I have heated car seats on!)
  -Pain in perineum/base of penis following urination
  -Weak/ arrhythmic contractions on orgasm
  -Ejaculation dribbles instead of shooting
  -‘Leakage’ for 5 mins after ejaculation
  -Twitching/trembling in pelvic floor area (usually waking me up at 1.30 am!)
  -Tingling in tip of penis and twitching in pelvic floor area during erection
  -Pain in perineum/base of penis after ejaculation
  -Need to strain upper abdominal muscles to defecate (this has improved of late)
  -Pain in perineum/base of penis after prolonged sitting/slouching, often referred to inner thighs
  -Pain in left hip and right side – triggered by sitting or slouching, no problems when standing or lying down, usually better in the morning and gets worse over the day.

thanks

Dave

[webslave]

my Urologist, he told me CPPS was ‘very rare’ and dismissed it out of hand.

Nonsense. Get another urologist.

can anyone recommend a Wise/Anderson practitioner in the UK?

There is a place nearby in Holland
viewtopic.php?f=45&t=7888

8 mile walk – could this have triggered symptoms?

Unlikely.

Burning pain at base of penis during ejaculation, followed by urinary urgency, pain in urethra, tip of penis, testicles and base of penis. General onset of urinary/ejaculation symptoms.

CPPS can begin quite suddenly. You do have CPPS.

Twitching/trembling in pelvic floor area (usually waking me up at 1.30 am!)

Search this site for 'fasciculations'.

[jcacciat]

Also, delaying urination is a VERY bad idea. You want to relax those muscles so things don't get worse.

The anxiety related to the circumcision has likely caused you to hold tension in the pelvic area. CPPS can be triggered by things such as a bad sexual experience, after which a man might hold tension in the pelvic muscles. So the circumcision-related anxiety would seem consistent with onset of CPPS.

[milou]

CPPS specialists in the UK are extremely hard to find. In my experience urologists are fairly useless and have little knowledge of CPPS.

Worth trying Karl at The bodyworks practice in Banstead, Surrey. He helped me a fair bit.
Otherwise they have some specialists in male CPPS at the White Hart Clinic in Barnes in SW London

[Dangerous_Dave]

Many thanks for your replies. Yes, I have been singularly unimpressed by my urologist's lack of awareness of this condition. That said, the amitryptiline he prescribed - whether by luck or judgement - seems to have had a positive affect on my symptoms.

[Dangerous_Dave]

My urological symptoms are improved of late - ejaculation/orgasm closer to normal, constipation gone, urinary symptoms slowly on the wane - but right hip/side pain persists and I have developed sciatica in the right leg, i.e. numbness down the back of the leg with pins and needles in the right toe and arch of the foot. Muscles also feel a bit tight in that leg. I've always had an overactive right leg while sitting (bounces around like crazy) and had some pins and needles there after being out in the cold but nothing like this.

The curious thing is, I had to stop taking Amitriptyline because I was experiencing side effects - mostly a general grogginess and 'zombie' feeling, but also numbness in a number of nerves: one was the right facial nerve that had been attacked by Bell's palsy in 2011 and the other main one was the right sciatic nerve above my buttocks and down the back of my right leg - this was before general onset of the sciatica and stopping Amitriptyline had made it subside. However it has now come back without the aggravating factor if the drugs.

I have recently started taking Gabapentin which seems to be OK so far, and has helped with side and hip pain although not making any difference to the sciatica.

The urologist discharged me - suggesting it was more likely spinal, nerve entrapment or arthritis than prostate (although I might have expected him to check my prostate first! That said, the out if hours doctor had done this back in November and noticed no abnormality). This seems to converge with observations from the physio (and more recently a chiropractor) that there was lack of motility in my lower spine. However my GP is reluctant to send me to a back expert, neurologist or for MRI, insisting that physio is the way forward. The physio has me doing stretches (most of those from A HEADACHE IN THE PELVIS in fact, as I had taken the book along to our first appointment) but I feel they might be exacerbating the sciatica and are not taking me any closer to a diagnosis and cure. Indeed, both the gp and physio have suggested 'we might never have a diagnosis' which is disheartening to say the least.

I feel totally let down by the medical profession, and this has led to a general decline in my mental well-being .

Has anyone experienced similar problems with sciatica and CPPS? Is this normal? The top Google result for 'prostate' and 'sciatica' is advanced prostate cancer which is obviously pretty terrifying, as is the possibility of MS. As part of my CBT for anxiety I have learned to identify catastrophic thinking, but its hard to eliminate it, when medical professionals seem disinterested in finding a cause.

[webslave]

I have periodic sciatica but it is unrelated to my CPPS. In fact I got the sciatica years after my CPPS was cured, and following a lifting accident.

It's tempting to see all medical problems as part of the same problem, but not always accurate.

[Caedar]

Have you attempted trigger point release on your gluteal and leg muscles on the affected side? I had sciatica-like symptoms for a period of time, but standing up more at work and TP release reversed that.

[Dangerous_Dave]

Caedar, you were on the money. The numbness in my leg subsided and I was left with a sharp pain in the arch of my right foot. I saw a TP therapist who diagnosed the problem as TPs in the calf muscles. After treatment of said TPs it subsided for a number of days before returning.

The TP therapist also released TPs in my Psoas and flank muscles, and stretched these muscles. I felt a lot more supple after this. Unfortunately it also left me in a lot of pain - particularly in my perineum, referred by the Psoas stretching - so I have not yet summoned up the courage to return.

I have also seen a tier 2 Physiotherapist at the NHS, who took a contradictory view: she palpated a number of trigger points in my back and suggested I have a generally heightened sensitivity to pain, likening my nervous system to an over-sensitive smoke alarm! She said this was common in people with 'health-anxiety', which I have suffered from quite badly over the last 3 years (I have become a total hypochondriac!). She also said tight muscles are 'natural', what is not natural is my nervous system's perception of pain, related to that tightness.

Oh yes, I also spent a hugh amount of money on an MRI which showed I had a bulging disk at L4/L5 but neither the TP therapist nor the NHS Physio felt this was the source of my muscular pain.

So, 4 months on, I am only about 5-10% better but I feel I have a few more clues as to the cause of this condition. Next step, I think, is to go back to the TP therapist, or discuss muscle relaxants with my GP. Although I am somewhat reluctant to go down the medication route again, as I find the side-effects cause a lot more anxiety than the pain.

thanks

Dave

[Caedar]

I have also seen a tier 2 Physiotherapist at the NHS, who took a contradictory view: she palpated a number of trigger points in my back and suggested I have a generally heightened sensitivity to pain, likening my nervous system to an over-sensitive smoke alarm! She said this was common in people with 'health-anxiety', which I have suffered from quite badly over the last 3 years (I have become a total hypochondriac!). She also said tight muscles are 'natural', what is not natural is my nervous system's perception of pain, related to that tightness.

Sensitization of the central nervous system is common in chronic pain conditions. Indeed, it may even be the fundamental component linking all chronic pain conditions. Anxiety can indeed increase pain sensitivity, but pain itself can increase pain sensitivity.

[davyboy]

Try meditation. It can ease the sensitivity.

[Caedar]

Try meditation. It can ease the sensitivity.

Indeed. Mindfulness meditation is accumulating a good body of evidence for pain, depression, and anxiety. Acupuncture, although more controversial, is also something to try.

[Dangerous_Dave]

Thanks for the suggestions. I am now working at mindful meditation, but finding it a real challenge.

I have been taking muscle relaxants (methacarbamol) four a few months and while I felt there was a profound difference at first, the benefits are now diminished. TP also seems to be having limited benefits.

I am definitely coming round to the opinion that muscular tightness is simply a symptom of the condition, and the major vector is dysfunction in my nervous system related to stress and chronic anxiety.

I found this page on Wikipedia of particular interest:
http://en.m.wikipedia.org/wiki/Neurogenic_inflammation

I have suffered from eczema all my life, and episodic rosacea, psoriasis and asthma.

Post urination/ejaculation pain is virtually gone but pain and tightness in my right calf, instep and core muscles endures. I hope, with perseverence, to make similar progress over the next year.