UCPPS - Prostatitis, Interstitial Cystitis Forum

Thanks webslave...I'll try cutting out the cranberry and any accredited quercetin product and see what happens. Pete

Thought I would just update on my progress...prednisolone did nothing, so faded out. Antibiotics, although on two occassions helped a lot (at the start when I had discharge, and a second time, when I had white blood cells in my urine), haven't done much to help in the longer term. What has helped, oddly enough, is time. Over the last two weeks, I have started to feel back to normal, with no explanation. I played with my diet, drugs, supplements, and nothing really seemed to help. I got herpes stuck in my head again and was retested - negative again. So, who knows? I am not 100% recovered, but the terrible pain and burning have left, and I have some tingling in my penis and testicles. One new thing that did happen was right testicular pain - it was also senstive to the touch, along with muscle aches down the rear of both my legs. I used to exercise regularly (aerobic exercise) and have had to stop, so wonder if it is related. The only drug I am taking now is amytriptyline at night. I am beginning to think that all I needed was some time, relaxation, and reduction in worry to start to feel better.

Mild case, short term. Let's hope it keeps fading, as it should. :happy:

Fingers crossed - the pain I experienced sure wasn't mild...I have never felt anything like that in my life. I even took to using a portable TENS machine, which did help. I really hope this fades forever. I just wanted to say how much I appreciated this website and how useful I found reading about the experiences of others. That certainly led to me feeling like I wasn't alone, which at times, when faced with some members of the medical profession, I felt like I was very alone. Pete

I spoke to soon....my pelvic area has been on fire today and yesteday

You will have ups and downs. Unfortunately, it is a part of dealing with CPPS. Don't let it get you down. As hard as it may seem, carry on with whatever you're capable of doing, as your mental state is important.

I have a very severe case (on permanent disability), but I found that these fluctuations happened more and more with time. Eventually, I entered into a rhythm where I'd have flares alternate with long periods of more tolerable symptoms.

FIngers crossed, this settles. The odd thing is that I am getting less nerve pain in my groin/pelvic area, and more nerve pain in my legs, feet and hands. This seems bizarre, but having searched the forum, can see other folks who have had these problems.

I just wanted to ask if there is anyone who has managed to crack what seems to be widespread neuropathic pain? I seem to have this icy cold type pain in my hands, arms, feet and legs. Sometimes, it is very much like allodynia (sometimes I seem to feel it all over my body), while at other times, it just seems to be pain. The very severe penis pain seems to have subsided, but my genitals still feel uncomfortable and sometimes I get this odd buzzing sensation in my penis, which doesn't seem to last very long. Yesterday, I was filling up my car, and it felt as if someone was literally tickling the head of my penis. All of this is of course rather distressing! I also have these red/purple marks on the glans of my penis, which I swear were not there before, and this does worry me. The urologist I saw suggested this was pain related, and the nerve pain can cause discolouration of the skin, but the marks seem to be there all the time, but rather purple in colour sometimes. I've read many of the posts on the forum, where men have reported similar symptoms. I assume I am going to have to try to just wait this out? I have been trying stretches, and some internal work, but I really am not too sure what I am doing.

CPPS is often accompanied by other conditions, such as IBS and/or CFS. CFS symptoms include cold extremities, so you may have a touch of that. The buzzing penis is probably fasciculations (search for that word on this forum). Skin discolouration is, as you say, a common symptoms, and in my case faded completely with time.

I have wondered about CFS in the past. Once when I was very ill in my 20s (turned out to be EBV aka glandular fever or mono). I'm hoping the discolouration eventually fades. This illness has a life of its own, and I really haven't been able to work out any triggers, other than maybe sitting for too long. The really severe burning in my penis seems to have not returned, fingers crossed (it seems to be my groin, abdomen, legs, hands and feet). I guess I can just try to carry on as best I can.

My most recent flare up was preceded by nine months of mysterious nerve issues - mostly parasthesias and feeling cold patches. When the flare up happened it basically "replaced" those other problems. I had a million tests done and the conclusion was that the nerve problems were caused by anxiety. When those symptoms disappeared and the chronic prostatitis / chronic pelvic pain syndrome flare up started, I was essentially putting my stress and anxiety in a new place.

Thanks lugnut - I have considered anxiety, and certainly accept that it has a role to play in CPPS. I'm wondering if anyone has tried Normast? http://normast.wordpress.com/about/ Available in Europe, but seems to be little on it in relation to CPPS.

I'll soon be 6 months into CPPS, and have seen some changes - the terrible burning and nerve pain in the head of my penis has subsided, and I am left with some irritation, subtle pain, and some red marks on the head. I've been trying internal work, but I often think I have no idea what I am doing. I also have been doing the stretches according to Anderson and Wise. The symptom I can't shake is this stinging and burning in my suprapubic area, and my lower abdomen (from hip to hip), which sometimes travels to my groin and legs. Reading on this site, I see others who have had this, and just wondering what solutions have been found? I find it is worse while sitting, and the stretches offer some short-term relief - is it a case of battling on, or should I be doing something more specific?

I also saw this product : http://www.painkillernormast.com/palmit ... treatment/
advertised on some IC groups on facebook.
Also this one: http://www.ergomaxsupplements.com/pelvilen-forte

Palmitoylethanolamide is the ingredient on both.

I have started taking something called Cistalgan (200mg flavossato + 250mg propifenazone)
Not much to say about it though.

Maybe webslave can give an opinion on the above...