David E's story

[davidlondonuk]

Hi all. I have a 14 year history of what I've always assumed is a classic CPPS case, but in a severe flare over the last 18 months I'm really losing my way and not sure where to go next. Any help welcome - in particular I have some variations on the "usual" symptom list that may resonate with others on the forum. Like with so many of you this is a life defining condition - I struggled through work and family commitments for most of the history but had to give up my job a few months ago as I have so many days where I can't think of anything but the pain.

Usual stuff in brief:
- 14 year history, onset via intense spasm following long drive and awkward physical activity - but with hindsight a couple of isolated instances of something similar further back during my teens
- Roughly 2 years severe, 3 moderate, 6 not too bad, and then the last 2 severe again
- First time round I had the usual drugs and uro tests with nothing showing, but improved slowly and especially after reading "A Headache.." and practising relaxation/stretching as best I could
- Recent flare kicked off with stressful incident at work and built over time from there - have had most of the tests again plus more physical work, but what worked last time doesn't seem to be this time
- Pain is perineal/pubic and only occasionally rectal/golf ball sensation (was more so first time round). Full set of urinary symptoms, except no pain on urination itself. No sexual symptoms - sometimes worse afterwards but sometimes better. And the worst thing of all is the spasms - one sort which feels like, but not identical to, starting to pee, very localised; the other, usually at night, a deep, general sense of the pelvic musculature all going haywire

Particular symptoms - these seem to me to be key but I'm yet to find a doc who can explain them:
- Pain and urgency are both consistently worse ~10 mins after urination. I feel like I need to go all the time, even when bladder is clearly empty. A typical pattern is that I grit my teeth (and inevitably tense) as this kicks in, and 30 mins - 1 hr later reach some kind of equilibrium where urgency is less
- Getting to sleep is horrendous, but once I'm there I very rarely wake for pain or urgency - so clearly the nerves can switch off
- The volume and concentration of urine seems odd. I have days where I drink a lot and hardly go, others where the reverse is true. And the greatest pain tends to coincide with dilute, clear urine, which seems the wrong way round
- My instinctive reaction to pain and urgency is to cross my legs very tightly if sitting, or to put a hand on my groin to massage if lying down. I have no doubt this is bad and increases tension in the long run but I find it impossible not to do, else I go into spasm. (It seems to operate at a pretty subconscious level - if I'm having a good day, I don't do it, without having to tell myself not to...)
- In the past 6 months I've developed chronic sacro-iliac pain and "red scrotum syndrome" - a persistent rawness that looks and feels like sunburn (definitely isn't!). These could be unrelated to the pelvic/bladder pain but I doubt it.

I've been on Pregabalin and had some internal TP work in the last few months, which seemed to help a bit but never dramatic or lasting. I've had occasional glimmers of hope - half a day of smooth peeing here, a drive without pain there - but the next day it is often terrible again, and there's never been any pattern to why.

So I'm trying to work out what to do next - live with it? Persevere with stretching / relaxation programme as long as it takes? Try new drugs (have not had TCAs or benzos)? Or come at it from a totally new angle (ie "maybe it's not CPPS")

Really grateful for any thoughts and I wish all fellow sufferers well.

David

[Caedar]

Considering your urgency and frequency, have you tried alpha blockers? Have you been assessed for possible interstitial cystitis / painful bladder syndrome? Have you tried going on a low-acid diet? Have you had a pinprick tests of the nerves in your pelvic region (pudendal and inguinal, etc.) to see if you have pudendal neuralgia or neuralgias of other nerves?

[Wolfcub]

Particular symptoms - these seem to me to be key but I'm yet to find a doc who can explain them:

Hello, David. From our common experience, the medical science is unable to explain this "group" of conditions called CP/UCPPS/CPPS. The focus should be on trying to control/eliminate symptoms and improve quality of life.

- Pain and urgency are both consistently worse ~10 mins after urination. I feel like I need to go all the time, even when bladder is clearly empty. A typical pattern is that I grit my teeth (and inevitably tense) as this kicks in, and 30 mins - 1 hr later reach some kind of equilibrium where urgency is less

I also had it. A few weeks after taking alpha blocker on a daily basis this feeling significantly decreased. I still take this kind of drug.

- Getting to sleep is horrendous, but once I'm there I very rarely wake for pain or urgency - so clearly the nerves can switch off

Each person is unique. You see, my sleep is still interrupted (but less than before) as the tension built in my pelvic area wakes me up.

- My instinctive reaction to pain and urgency is to cross my legs very tightly if sitting, or to put a hand on my groin to massage if lying down. I have no doubt this is bad and increases tension in the long run but I find it impossible not to do, else I go into spasm. (It seems to operate at a pretty subconscious level - if I'm having a good day, I don't do it, without having to tell myself not to...)

There are different ways you can find to help you with that, maybe a CBT or a guided meditation for example. It should be something you can feel adjusted to.

- In the past 6 months I've developed chronic sacro-iliac pain and "red scrotum syndrome" - a persistent rawness that looks and feels like sunburn (definitely isn't!). These could be unrelated to the pelvic/bladder pain but I doubt it.

You didn't mention your age and/or how your health condition affecting your physical activity, but I presume you are physically active, aren't you? This area tend to be easily irritated in cases of long resting, especially in old people, handicapped or others with metabolic and another disorders/diseases (such as Diabetes, malnutrition and weakened immune system). Maybe it's some other condition, like an allergic one (does it appear only there?)

So I'm trying to work out what to do next - live with it? Persevere with stretching / relaxation programme as long as it takes? Try new drugs (have not had TCAs or benzos)? Or come at it from a totally new angle (ie "maybe it's not CPPS")

You can try another drugs (muscle relaxants for example) and different approaches. In my opinion, the key point is to be patient and be able to assess your progress. Personally, I use the NIH symptom Index: http://ucpps.men/1/

[davidlondonuk]

Hi Caedar, thanks for replying. Yes to alpha blockers (tolterodine) and low acid. The former seemed to make things worse, I had possibly my worst ever flare a few days after starting and so stopped taking them after another week or so - I theorized that if my bladder is in some kind of fragile equilibrium between urgency and hesistancy then any change to that might make things worse, but I don't know if there's any logic to that.

I haven't specifically been assessed for IC or PBS though I've presented with these symptoms to several (highly paid) urologists and always been diagnosed with CP or CPPS and treated accordingly. I think this is mainly based on tender prostate reaction, though I've never been sure whether it's tenderness of the prostate itself making me jump, or the bladder neck that it's pressing on.

Not come across pinprick tests though I've had a lot of physio treatment and not come across any unusual function. When the associated backache was at its worst I got classic neuropathic jolts down my legs, which I've not had since the treatment - the pelvic pain doesn't feel like that.

[davidlondonuk]

Thanks Wolfcub. Which alpha blocker do you use if you don't mind me asking? I've seen other posters talking a lot about Hytrin which works in a different way to Tolterodine/Flomax?

Re physical activity, I am generally physically very active, though the combination of back pain with pelvic pain is starting to compromise this - any vibration (running etc) is painful. (As an interesting aside, I find cycling beneficial, in contrast to the usual advice - my best year since I first had this was one where I cycled several thousand miles!)

Re the inflamed scrotum, it doesn't occur anywhere else, no, so I don't think it's an allergy and it hasn't responded to anti-bac / anti-fungal. Red scrotum syndrome is considered a neuropathic condition like CPPS, although my time on Pregabalin hasn't helped much.

[Wolfcub]

Hi Caedar, thanks for replying. Yes to alpha blockers (tolterodine) and low acid. The former seemed to make things worse, I had possibly my worst ever flare a few days after starting and so stopped taking them after another week or so - I theorized that if my bladder is in some kind of fragile equilibrium between urgency and hesistancy then any change to that might make things worse, but I don't know if there's any logic to that.

tolterodin is an anti-muscarinic drug, not an alpha blocker (which is antiadrenergic), which is usually prescribed to treat an overactive bladder. The urinary smooth muscles are innervated by both branches of the Autonomic nervous system (parasympathetic and sympathetic). You might still benefit from alpha blockers. How did this make things worse? What did you feel?

[Caedar]

Hi Caedar, thanks for replying. Yes to alpha blockers (tolterodine) and low acid. The former seemed to make things worse, I had possibly my worst ever flare a few days after starting and so stopped taking them after another week or so - I theorized that if my bladder is in some kind of fragile equilibrium between urgency and hesistancy then any change to that might make things worse, but I don't know if there's any logic to that.

Wolfcub already explained the response I'd have.

I haven't specifically been assessed for IC or PBS though I've presented with these symptoms to several (highly paid) urologists and always been diagnosed with CP or CPPS and treated accordingly. I think this is mainly based on tender prostate reaction, though I've never been sure whether it's tenderness of the prostate itself making me jump, or the bladder neck that it's pressing on.

IC/PBS is thought of as a "woman's syndrome" by many doctors, which may have influenced your diagnosis. However, studies are beginning to show that it may occur in men at a rate similar to women, and even that CPPS and IC share many common characteristics; just to close the case, treating men with CPPS on Elmiron (an IC drug that acts on the bladder lining) reduced their pain significantly. Also, you must keep in mind that CPPS is a syndrome, meaning it can have many underlying factors. It also happens to be a syndrome with strong links to irritable bowel syndrome and interstitial cystitis. It seems like you're treating the trigger point side of it, which is one part of treating pelvic floor dysfunction (the musculoskeletal side of things), but what about the rest? Remember that the organs, nerves, muscles, etc. are all very interconnected in the pelvic region, and they can all "talk" to each other via many mechanisms (neurogenic inflammation, cross-sensitization, etc.). Considering your urinary symptoms, I would strongly recommend seeing somebody who specializes in pelvic pain specifically (who are usually in the "women's health" category--see the bias?) and who knows about IC. You haven't mentioned any bowel issues, so irritable bowel doesn't seem to be a factor.

Not come across pinprick tests though I've had a lot of physio treatment and not come across any unusual function. When the associated backache was at its worst I got classic neuropathic jolts down my legs, which I've not had since the treatment - the pelvic pain doesn't feel like that.

I do not have neuropathic jolts down my leg either, but a small pinprick to my left iliac crest (where a branch of the pudendal nerve comes from) sent me reeling. This was opposed to my right iliac crest, which felt like nothing more than a pinprick. Check out Appendix A in Healing Pelvic Pain by Amy Stein for a good basic idea of the nerves in the region that can cause pain.

[davidlondonuk]

Wolfcub - how did tolterodine make me feel - the overriding sensation is of my pelvic musculature pushing outwards, in a way that sometimes feels like needing to pee but sometimes very different. I instinctively tense against this. The combination of the sensation and the counter-tensing causes pain, spasm and urgency. The tolterodine increased the sensation and the tensing.

(Incidentally, just read your signature properly and you mention need to press your abdomen to help - I get this quite often as well, especially for the second (or more) void).

Caedar - I'm familiar with the IC overlap. I've tried to find a pelvic pain specialist but they're not common in the UK. One thing I have meant to try is phenazopyridine which I understand can help for IC.

I don't think I have IBS, however pain is better more often than worse following a bowel movement (and always better after passing wind).

Interesting experience with the pinpricks. Is this something you can self-test?

[Caedar]

Caedar - I'm familiar with the IC overlap. I've tried to find a pelvic pain specialist but they're not common in the UK. One thing I have meant to try is phenazopyridine which I understand can help for IC.

Here's a list of international pelvic pain specialists. Hopefully it helps! Also, phenazopyridine is indeed ]recommended by the IC Network, but only for minor pain relief during flares. It isn't actually a long-term treatment.

I don't think I have IBS, however pain is better more often than worse following a bowel movement (and always better after passing wind).

You are likely just removing pressure on adjacent structures and nerves. Remember, everything is connected.

Interesting experience with the pinpricks. Is this something you can self-test?

I'm sure you could, but you wouldn't have the accuracy of a physician because of less clinical experience doing the test as well as the difficulty of self-testing. I'd expect the results would be inconclusive.

[Caedar]

For a little taste of how good Healing Pelvic Pain is, here's the list of peripheral nerve pain referrals.

- The genitofemoral nerve refers to upper part of the front of the thigh and slightly below the pubic bone.
- The ilioinguinal nerve refers to the inner thigh and the lateral part of the perineum.
- The iliohypogastric nerve refers to lower abdomen, groin, and lateral part of the perineum.
- The lateral femoral cutaneous nerve refers to the lateral and front of the thigh.
- The posterior femoral cutaneous nerve refers to the perineum, gluteal region, and the back of the thigh and leg.
- The obturator nerve refers from the groin area down the inner thigh area.
- The superior hypogastric and inferior hypogastric plexus and the ganglion impar are bundles of nerves, and they both are part of the sympathetic nervous system. The sympathetic nervous system helps control stress, so if these bundles are affected, it can be difficult to control heart rate, and pain can be referred to the pelvic floor area.

[Caedar]

And the titles of all the conditions that can contribute to pelvic pain (full descriptions in the book itself). This is all just in an Appendix!

Musculoskeletal Dysfunction Resulting in or from Pelvic Floor Disorders
Low Back/Sacroiliac Dysfunction
Sacral Pain
Groin or Pubic Pain
Piriformis Syndrome
Iliopsoas Syndrome

Pelvic Floor Pain, Tension, and Nerve Involvement in Both Men and Women
Pelvic Congestion
Pudendal Neuralgia
Peripheral Nerve Pain Referrals

Tension Myalgia of the Pelvic Floor
Pelvic pain
Coccydynia
Levator ani syndrome
Proctalgia fugax
Anismus
Hemorrhoids

In Women Only
Lots, but this is a forum for men.

In Men Only
Prostatitis
Chronic Pelvic Pain Syndrome

Bladder Disorders in Both Men and Women
Interstitial Cystitis
Urethral Syndrome
Urgency-Frequency Syndrome

Bowel Disorders in both Men and Women
Constipation
Diarrhea
Inflammatory Bowel Disorder
Irritable Bowel Syndrome

[raunow]

I recommend Ativan or similar. I myself am an anxious person and I sense in this discussion that you may have a similar tendency. Ativan is very useful in this regard.

[thomydiamond83]

Hello David,
sorry for my English. I'm from Germany. I am Thomas, 30, and suffering from CPPS since June, 2012.

- I had my first success by biofeedback.
        "the awareness of his hidden muscle" (February 2013)
- Whether at work or at the supermarket checkout I then tensed my pelvic floor muscle.

- That gave me the cure to 85%.
-------------------------------------------------- ------------------------------------
Currently I'm doing massage Trigger Point, in self-treatment.

-belly / Adductor /

greeting Thomas