New to forum - appreciate any help

[HClark]

Firstly, thank you to all who post here. The site is really helpful in dealing with something where good information is somewhat limited.

I'm 49 years old and have had symptoms for 3 years. My symptoms started after a period of heavier than usual drinking and more sex than perhaps was usual with my wife. It was also following a period of extreme stress at work (I eventually left my career as a result of my pain and issues). My symptoms began as feeling like a urine infection (of which I had a bad one in my early 30's). I saw my GP and eventually several urologists and had ultrasound, cystoscopy, MRI, bloods, urine etc. all clear. I was then told to go and see my orthopaedic surgeon who operated on my lower back 10 years prior to replace a deteriorated disc and install a cage. He scanned me and found I had stenosis at above the original issue and I had another op to extend the cage. It now runs from L3 to S1. He was confident this would solve my issues. It didn't and I remain with the same symptoms as when this began but they have steadily become worse when they flare.

My symptoms are penile and testicular pain, with the former worse than the latter, pain in the perineum, suprapubic pain and left abdominal pain. I have tried gabapentanoids, TCAs, SNRIs and they all cause unpleasant side effects at therapeutic doses. Pregabalin worked but I had a horrible time coming off those. I have also had several nerve blocks which gave me relief for 4 hours only.

In terms of flares I have worsening symptoms each time I void, especially if my bladder is fuller. Sex is worse though with a deep pain several hours after that lasts 24 hours. Ejaculation in general I avoid but sex causes the most pain post. The other bad flare is alcohol (beer and champagne particularly bad) which causes increased symptoms for 24 hours but helps at the time.

I have seen several Pelvic PTs without much success (I'm in the UK and a good pelvic PT who treats men is rare in my opinion). I've discovered my own routine through reading all the literature discussed on this forum. I have never been really regimented with it though or consistent. I have also only managed to completely avoid alcohol for three whole months in this 3 year period. It would be nice to have the odd drink and it does help at the time. A poisoned chalice.

My confusion remains as to whether I have IC or CPPS. My mother has IC and I know it can run in families. Clearly it's rare for men to have it but the reaction to alcohol and the extreme bladder pain makes me think my UCPPS is just more IC like than anything else.

I am contemplating visiting Holland and the F-Act clinic and have even looked into a trip to West Coast for the W-A Protocol clinic.

Any thoughts, hep, advice always appreciated.

Thanks again for inputs on this forum and good luck to all.

[webslave]

1. Spinal stenosis very unlikely to be related
2. Nerve block injections not recommended, avoid
3. Post coital pain and ethanol-induced pain very typical of UCPPS
4. UCPPS encompasses both IC/BPS(PBS) and CPPS, so the distinction hardly matters IMO
5. Follow the IC diet in any event. It's hard, and if you backslide even a little on it you may see no gains. https://ucpps.men/viewtopic.php?t=8733
6. Familial presence of IC very indicative, has known genetic component. Not "rare" in men, just lower incidence than females
7. Wise-Anderson Protocol clinic is only available for a few more months before David Wise retires
8. Fill out signature please, see my signature for instructions

[HClark]

Thank you for your quick reply. It’s very much appreciated.

I have filled out signature.

My only follow-up is by distinguishing between IC and CPPS do you not help distinguish part of the solution? Ie CPPS more focussed on musculoskeletal stretching and holistic care vs food/drink avoidance, medication and bladder installations etc

Or in your opinion does IC respond to the Wise-Anderson regime as well as trigger avoidance etc?

Thanks again.

[webslave]

Your clear cystoscopy points to a vanilla case of IC, which is usually related to a hypertonic pelvic floor, just like CPPS. The IC Diet helps the majority of men with CPPS as well, because it stops goosing the inflammation in the genitourinary tract, and allows the neural windup to unwind. You have to stop walking down the pathway in the long grass to allow the grass to grow back, as it were. It can take some time. Set and forget with the diet, work on trigger points, treat stress and pelvic tension as something to be avoided and if unavoidable, treated. You'll recover.

[HClark]

All makes a lot of sense. That’s incredibly useful. Thank you again.

[HClark]

I donated as a way of thanking you for the excellent advice. Hopefully you see that.

[webslave]

I did receive the donation and thank you for that! It's donations like that that keep the site going, seriously.

[LivingRoomFanatic]

I did receive the donation and thank you for that! It's donations like that that keep the site going, seriously.

Also just donated. I meant to do so a looong time ago but was caught up with piecing my life back together again. Thanks Webslave.

[webslave]

You're a star, David. A million thanks! It keeps the site up another year!!!

[HClark]

Just a follow up on this thread. Since June 24 I have been following a regular stretching plan which is a mix of Wise-Anderson and Amy Stein. I also went to F-Act Pelvic Clinic in Holland and they confirmed a lot of my problem stems from imbalances through my pelvic area as a result of life long spinal problems. I was also loosely following the IC diet avoidance plan discussed in this forum extensively. Plus avoiding ejaculation. For 10 weeks I was pretty much symptom free. It took a few weeks to have an effect but then was extremely effective. Of course once my symptoms abated I found it increasingly easy to slip from the regime. This has been especially true of alcohol. This has culminated to one of the worst flares I have ever had in the last week. I am back on the relaxation/stretching plan, now completely avoiding alcohol, also now avoiding spice & tomato (I think these are my main culprits from a food perspective) and keeping my fingers crossed it calms down. I guess my point (which I realise is somewhat obvious) is the regime can work but you have to be really strict and if you improve you have to keep at it.

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