Experience of a UK newbie

Male pelvic pain, prostatitis, IC
Pootle1
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Experience of a UK newbie

Post by Pootle1 »

Hi All,

I'm a CPPS sufferer of 2 years, new to this forum. So far I'm finding the sea of information a little overwhelming; probably I need to focus on particular questions I want answered rather than try to take in everything. Anyway, I thought I would share my experiences which may well get lost in the sea but I think it's worth doing in case even just one person might chance across it and find something useful.

My symptoms started in June 2013, initially as a pain behind my right testicle which quickly shifted down to deep under my perineum on the same side where it has stayed since. I have had no urinary symptoms.

I had started mountain biking about a year before and intuitively I think my condition is a direct result. I tried to continue riding but soon after realised I would have to stop at least until I got better, then over time realised I might not be able cycle again. This had an added psychological impact, both as I was used to keeping myself fit and because I had a social group through cycling which I no longer have.

I also used to do weights at the gym and for a while I tried swimming but eventually I realised that any strenuous exercise worsened my condition. This has led me to think that my condition is a pelvic floor disorder rather than anything wrong with my prostate as the pelvic floor is stressed during exercise but I figure there is no great impact on the prostate, particularly during swimming.

Initially I went down the urology route for treatment but I have since moved towards the Anderson-Wise type treatment, largely self treating. Below I list the treatments I have tried, largely in chronological order, and what the results have been for me.

Ciprofloxacin Antibiotic :thumbdown:
The consultant warned me that there was a small risk of tendonitis from ciprofloxacin. I thus ceased treatment when I started suffering tendonitis in my achilles which lasted for several months. No change in my CPPS.

Tamsulosin
No impact on CPPS but at least no side effects.

Cystoscopy and Prostate Massage :thumbdown:
I underwent a cytoscopy under general anaesthetic and the consultant conducted a prostate massage whilst I was under. This worsened my pain for a short while afterwards and had no benefit. The consultant reported I had a tight bladder neck which he could operate on, but the operation had a fairly low success rate and a fairly high chance of side effects. I did not pursue this and do not think I ever will.

Quercetin
Took this for about a month with no noticeable difference. Might yet give it another go for longer if I hear that is worth trying.

Amitryptiline :thumbup:
When I went to my GP regarding the pain she prescribed me amitryptiline. This resulted in a reduction in pain in the first 24 hours and a further reduction over the months following. For the first day I was in a mental fog and considered stopping immediately. However this side effect stopped quickly. I did tire quickly at the end of the day for 2-3 months particularly if I had a drink. This has now passed and I have no lasting side effects. Amitryptiline has been the best treatment so far for me, taking me from a position where I was struggling to get through the day to a position where the pain is generally mild and bearable and at best is barely noticeable.
I have also suffered from chronic foot pain for many years brought on by running and the amitryptiline has helped greatly with this. I do wonder if the two ailments are linked in that my body is susceptible to injury and is then not good at dealing with the pain.

Stretching
I have followed a stretching regime from the book Heal Pelvic Pain. I'm not sure whether or not it is helping but it feels quite good to do anyhow and is not intrusive.

Trigger Point Therapy :thumbdown:
I found someone not too far from me in the South East of England who does internal massage for CPPS. I had been feeling increasingly better before I saw him; afterwards I felt worse for about 5 weeks but then had a very good 6 months. I don't know whether these 6 months were a progression from the trend before this treatment or if they were a result of the treatment after the initial flare up. However I have not gone back for more.

Relaxation
About 2 months back I tried the relaxation MP3 available from http://www.thepelvicfloorclinic.com.au. I have since moved to trying Paradoxical Relaxation. Like with the stretching I'm not sure how useful it is but it is non intrusive and is pleasant enough to try, though I'm sure I do not really "get" paradoxical relaxation yet. Though I'm laid back on the outside inside I'm like the "restless, worrisome, dissatisfied individual" which Tim Parks identifies himself as in Teach Us To Sit Still. So I'm generally trying to relax more and spend less time worrying about trifling things as I am prone to do.

My current plan is to continue with the paradoxical relaxation and stretching for some time and see how things go. If my symptoms persist I might look at the trigger point therapy again as it is part of the Anderson-Wise protocol. I must admit I have some scepticism about the protocol along the lines of it works then why haven't other practitioners in other countries adopted it or similar? Still, apart from the possibility of flare ups from trigger point therapy it can't cause possible harm like surgery or drugs so I might as well try it, though I certainly have a long way to go before I would consider flying out to the US to attend a clinic.

I feel somewhat fortunate to now be relatively untroubled by my CPPS when I hear of others suffering. Good luck to fellow sufferers; I hope you all find what works best for you.
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webslave
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Re: Experience of a UK newbie

Post by webslave »

Pootle1 wrote:Trigger Point Therapy :thumbdown:
... afterwards I felt worse for about 5 weeks but then had a very good 6 months.
TrPt therapy is notorious for initially making the pain worse. In fact, if it does not cause pain initially, you probably don't have pelvic spasm!
I must admit I have some scepticism about the protocol along the lines of it works then why haven't other practitioners in other countries adopted it or similar?
They have. Numerous therapists offer a similar treatment now, and more and more are moving towards it. It does remain a niche market though (especially intrarectal and transvaginal therapy).
Good News! The great ProstaQ is BACK at last! You must try it.

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Pootle1
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Re: Experience of a UK newbie

Post by Pootle1 »

Thanks for your taking the time to read my post and reply. I should have added that it was the length of time that my pain was worse after TrPt that put me off. I see that Anderson and Wise say up to 3 days whereas mine was 5 weeks.
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webslave
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Re: Experience of a UK newbie

Post by webslave »

5 weeks of pain after a massage means
  1. you have some nasty triggerpoints
  2. the initial pain caused by the massage created some neuronal windup and a flare
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SoothingSpaces
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Re: Experience of a UK newbie

Post by SoothingSpaces »

Webslave -- why would it be that I have no urinary symptoms -- only perineal pain ? Is there a physiological reason for that in the pelvic floor? I also have not penis pain. Occasionally the perineal pain will radiate into the scrotum on extended sitting ...
Age:51 Onset Age: 50 Symptoms: golf ball sitting pain leg pain buttock pain low libido Helped By: lying down breathing walking standing up hot tubs valium Extra Strength Tylenol | Worsened By: Sitting at office driving stressing about it Cipro (anxiety) Other comments: this is the worst thing that has ever happened to me haa -- but I so want to get well :smile: started PT, taking QUrol
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Re: Experience of a UK newbie

Post by Caedar »

SoothingSpaces wrote:Webslave -- why would it be that I have no urinary symptoms -- only perineal pain ? Is there a physiological reason for that in the pelvic floor? I also have not penis pain. Occasionally the perineal pain will radiate into the scrotum on extended sitting ...
Pain symptoms elsewhere in the pelvic floor, if left untreated, can eventually cause bladder pain and other urinary symptoms. This happened in my case. I started with only penile, testicular, and perineal pain, and at one point developed moderately bad urethral pain, bladder pain on filling, and frequency/urgency.
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
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Re: Experience of a UK newbie

Post by SoothingSpaces »

I am six months on. I would say I had frequency early on. But I can go through the night and pee once or no times. Also no burning. I am going to a trained internal PT person. So the hope is that could resolve the golf ball sensation? Is that a symptom that is purely muscular in your opinion?
Age:51 Onset Age: 50 Symptoms: golf ball sitting pain leg pain buttock pain low libido Helped By: lying down breathing walking standing up hot tubs valium Extra Strength Tylenol | Worsened By: Sitting at office driving stressing about it Cipro (anxiety) Other comments: this is the worst thing that has ever happened to me haa -- but I so want to get well :smile: started PT, taking QUrol
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Re: Experience of a UK newbie

Post by Caedar »

Well, almost any chronic pain is going to have some element of central (brain + spinal cord) component. Whether that's just heightened anxiety and depression about the condition, increasing the sensation and perception of pain, or biochemical changes that more permanently (but still reversibly!) "increase the volume" of your pain sensitivity, that all depends on the duration and symptomatic area of the condition.

That big caveat aside, if you are generally just feeling tightness and dull pain in your rectum (the classic "golf ball"), it's probably mostly muscular, yes. I've dealt with the golf ball off and on, and changes to my exercise (from running to biking) and the amount that I stand (balancing standing, sitting, and lying down time) have eliminated it over the course of a few months, as far as I can tell. That tells me it was mostly or all muscular. Magnesium also helped.
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
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Re: Experience of a UK newbie

Post by MajorSky1 »

Good questions, good answers. Thanks guys.
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: Experience of a UK newbie

Post by SoothingSpaces »

Good to hear from you, Major. I would like to talk to you by phone if possible ... my number is 978 697 2070.

caeder -- Is there a brand of magnesium you recommend? Also what about dosage?
Age:51 Onset Age: 50 Symptoms: golf ball sitting pain leg pain buttock pain low libido Helped By: lying down breathing walking standing up hot tubs valium Extra Strength Tylenol | Worsened By: Sitting at office driving stressing about it Cipro (anxiety) Other comments: this is the worst thing that has ever happened to me haa -- but I so want to get well :smile: started PT, taking QUrol
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Re: Experience of a UK newbie

Post by MajorSky1 »

Sure, when is good?
Age: 49| Onset Age: 47| Symptoms: Pain locations: Intermittent left and right front pelvic floor lateral to urethra; occasionally left side tailbone pain (rarer); left spermatic chord pain (become rare); Post BM-Pain helped by distraction during Bowel Movement.| Current meds: None. Helped by: deep breathing, mediation, hiking, distractions, exercise. Approximately 98% improved, varying depending on stress levels.
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Re: Experience of a UK newbie

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Now?
Age:51 Onset Age: 50 Symptoms: golf ball sitting pain leg pain buttock pain low libido Helped By: lying down breathing walking standing up hot tubs valium Extra Strength Tylenol | Worsened By: Sitting at office driving stressing about it Cipro (anxiety) Other comments: this is the worst thing that has ever happened to me haa -- but I so want to get well :smile: started PT, taking QUrol
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Re: Experience of a UK newbie

Post by Caedar »

SoothingSpaces wrote:Good to hear from you, Major. I would like to talk to you by phone if possible ... my number is 978 697 2070.

caeder -- Is there a brand of magnesium you recommend? Also what about dosage?
Mostly because it's soooo cheap in powder form, lasts for months. I'd say start with a tablespoon and work up from there to maybe a couple tablespoons. Play around with it. Mg Citrate can have a laxative effect at greater amounts, which may be good or bad for you depending on your bowels.

Admin comment: use Magnesium Glycinate because the citrate causes diarrhea (in fact the citrate can be used as laxative).
Age: 26 | Onset Age: 23 | Symptoms: Neuropathic-like pain and hyperalgesia (lateral/anterior thighs mostly, but distributed throughout body); Pain (penis shaft, right side, when erect for long or excess masturbation) | Previous Symptoms: Pain (testicles; penis underside, mostly near base and running up urethra, sharp/burning; perennial region, dull; ejaculatory; post-ejaculatory); Urinary (moderate incomplete voiding; moderate frequency and pain on bladder filling); Sensations (cold in head of penis) | Helped By: Stretching (especially hip rotators and flexors); Yoga (especially lunges, warrior 2, and pigeon) Trigger point release (abdominals; iliopsoas; gluteus muscles and piriformis; bulbospongiosus & ischiocavernosus; thigh adductors); Meditation (mindfulness); Walking & Aerobic Exercise | Worsened By: Stress, anxiety, too much alcohol, lack of sleep, sitting at length | Current prescriptions: nortriptyline (10 mg, 1x at night; for CNS sensitization and IBS) Previous prescriptions: hydroxyzine (10 mg, 1x at night; for urinary symptoms/mast cell stabilization; useful), clonazepam (0.25-0.5 mg, 1x at night; for anxiety/CNS sensitization; useful for short time)
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Re: Experience of a UK newbie

Post by SoothingSpaces »

Ok Caedar -- thanks. If you want to call me, I'd like that too...
Age:51 Onset Age: 50 Symptoms: golf ball sitting pain leg pain buttock pain low libido Helped By: lying down breathing walking standing up hot tubs valium Extra Strength Tylenol | Worsened By: Sitting at office driving stressing about it Cipro (anxiety) Other comments: this is the worst thing that has ever happened to me haa -- but I so want to get well :smile: started PT, taking QUrol