UCPPS - Prostatitis, Interstitial Cystitis Forum

I occasionally have leg pain in the thighs and alongside the groin, due to cross talk. As well, I get episodes further down, but my doctor believe those are a result of my degenerative disk disease.

Naturally, if this persists, get yourself checked out just to be safe.

I went to a chinese doctor and I took herbs from him for a month. Didn't 'cure' me, but helped a lot with frequency and urgency.

Friends,

Getting a bit more experienced with finding trigger points externally using the Theracane and internally using the slender 7. Major trouble spots are the abdomen especially suprapubic and around the belly button, the piriformis both externally and internally and internally the transversus perineus. Also areas a bit higher up (about 4-5 inches I would say) at the left and right which I believe are the pirifomis or the obturator. I stay away from the prostate area since it is quite fragile over there. Anyway all these areas hurt quite a bit when pressed and refer cramping to the suprapubic area which I define as them being a bad boy (a trigger point). However, holding pressure there does not result in a significant release. I would like to ask whether more experienced triggerpointers recognize this and would suggest an alternative modus or just persistence with these areas. My TP, who works mostly externally and a bit internally (about a finger-length) does sometimes release abdominal triggerpoints however I feel that my internal triggers are too high up for her fingers and therefore this area is my own to explore using the purple beast. Any comments on internal massage and lack of clear release is welcome. Thanks and regards.

Releasing a trpt is not an instant thing. I've got one in my shoulder from typing and it's very persistent, even after daily treatment with my Theracane. Just have to keep at it.

Indeed, releasing triggerpoints is not that easy as I have found out in the shoulder area as well. That being said, a while ago a PT released a triggerpoint in my shoulder using dry needling instantly. However, I wonder whether experienced internal triggerpointers could comment on how they approach an self internal release session. Searching the board I can find quite some posts of people describing their methods. That being said, maybe some of you would like to describe what they have learned during their learning curve of self internal triggerpoint release. For example, how often do you do it, what is your plan of attack (top down or vice versa) do you do only one one minute holding per trigger point or more, would one expect some feeling of release every time or just sometimes and how do you approach the areas around and above the prostate? Any tips and tricks would be helpfull. Thanks.

Dear all, I would like to see whether someone feels they would be able to enlighten me with regard to the above mentioned questions. Furthermore, I would be much interested in advice on how to treat the area above the prostate. This is a very painful area for me but I am hesitant to treat it given the proximity of the prostate and bladder/urethra. I read some have treated this successfully and I remember reading for example that Tim Sawyer treated scotsman in this area in the clinic so maybe some of you who have been treated by him could help. Thanks.

Dear all. After having had complaints for almost a year my symptoms suddenly disappeared about 8 months ago.I can tell you life was a lot better without CPPS! I almost started to feel that I was cured. However, a few days ago I suddenly felt some rectal pain and all of a sudden the symptoms reappeared fully. It is clearly linked to stress since I am going through a very stressful time with a sick parent and a serious marital crisis unfortunately. Alternatively the reappearance of my symptoms is associated with the use of antibiotics for a middle ear infection (augmentin), but this is less likely. I am quite distressed and depressed about this and I was wondering if some of you could comment on how to cope with such relapses and whether these are to be expected.
By the way this morning Tim Parks was on an interview on Dutch television. The interview is in English: http://beta.uitzendinggemist.nl/afleveringen/1104760.

The unfortunate reality of our condition is that you can and eventually will relapse to some degree. However, you can take comfort in remembering that you've made it through this before. It does get better. Ups and downs, something we must all learn to deal and live with.

I would encourage you to not get depressed or distressed. Get professional help with that, if need be, preferably from someone schooled in chronic pain/illness. Those feelings, although logical, eventually have to come under control when dealing with a chronic condition. They're counterproductive to getting well again.

Dave,

Augmentin can cause anxiety, or central nervous system side-effects. This can magnify your symptoms....breath, meditate, stretch, eat well, and clear your head....you'll feel better in no time...Quercetin and fish oil help as well.

Dear all,

My last post was in 2011. Since then life has been pretty good. Now and then some complaints or little setbacks but nothing major. I remember thinking just recently "I will never develop this again, I think I am over this". Well, I guess you will never really get over this. This maybe our problem area which will flare someday in a minor or more major way. But be assured, you can go long periods without complaints even after having had symptoms for quite some time. I hope this may be a reassurance for some who feel they might not much better one day.

However, so far for the good news cause flares may and will happen. I am going to a major one now alas. Urinary symptoms (which are the most annoying and frustrating for me) and typical rectal pain. And let me tell you: the brain has a memory for pain and worry which when one flares flares up as well. Worry, catastrophic thinking, anxiety they all come back full force in an instant. This enforces tension and a vicious cycle runs its ugly course in no time. Trying to get this back under control and try to not focus on worry and internet reading but focus on relaxation, a little trigger point work and a visit to the knowledgeble pelvic specialist that helped me before. Nevertheless it is so hard not to be fully engulfed in negative thinking.

Over the years I have come to see my pelvic floor as the "mirror of my soul". If something is bothering me, my pelvic floor notices it earlier than I myself do. This is interesting but confusing since I am in the process of making a big decision and being engulfed in catastrophic thinking I am inclined now to not make this decision out of fear for what chronic prostatitis / chronic pelvic pain syndrome might have planned for me now. Will I get this under control? What is my pelvic floor telling me? Should I pause my life and rethink or have faith that I will be good again soon?

Maybe some others who have flared may recognize this and comment on how they overcame these flare stresses and reappearance of catastrophic thinking. Much appreciated!

Be well!

Over the years I have come to see my pelvic floor as the "mirror of my soul". If something is bothering me, my pelvic floor notices it earlier than I myself do.

I like that. Very apt.

If the decision involves something that will put you into a more stressful lifestyle, it may be best avoided.

You could read the book 'Full Catastrophe Living' by Zinn

Thanks. As always I appreciate your feedback! I have the book and should re read it. Thanks for the reminder. Its great stuff.

One more question for the group:

Whats been puzzling me is the changed nature of my symptoms. Eight years ago I had a bout of chronic prostatitis / chronic pelvic pain syndrome with mainly milder urinary symptoms and some pain. Six years ago I had a longer episode with mainly pain and tension but no urinary stuff. This time around the urinary symptoms really are predominant. Horrible stuff. Constant urge to urinate, small voids, impossible to sleep and constant suprapubic pressure and discomfort. But no pain in other places to speak of. Sometimes urination relieves sometimes it exacerbates.

I am wondering these things:

1. Do I actually have Painful Bladder Syndrome all this time or this time around? My friend, who is a urologist, thinks unlikely mainly given my history of clear chronic prostatitis / chronic pelvic pain syndrome (Pain and PFD) symptoms previously. For some reason a diagnosis of PBS would freak me out so much more (having survived the other variant previously). It feels PFD is minimal this time but I very well could be wrong (sometimes hard to tell).
2. Should I get a cystoscopy?
3. Is it important to make the distinction, I believe it may be variants of the same (and I would be an example of this) since for PBS other approaches may be tried?
4. Given the fact that my symptoms this time are more in PBS terms should I alter my attack this time or go the same route as before?
5. In your opinion does the PBS variant versus the CP/CPPS variant have a worse outlook?

I will ask my PT tomorrow as well but your thoughts are appreciated,

Thanks D.

I'm new to this syndrome, so forgive me if I'm mistaken. My PT said to me yesterday after suffering for a week with urethra burning symptoms and asking her why the change in location, she said.... "your pelvic muscles look for other weak areas to exhibit these chronic prostatitis / chronic pelvic pain syndrome symptoms." it made sense and it sucks. Trying to stay positive and avoiding catastrophic thinking, for me is the hardest part so I empathize with you. I know I've been a pessimist and negative a good portion of my life, and the catastrophic ruminating thoughts have come with it. It's not easy and I wish you the best. The good thing is, you know you overcame this once and you can tell yourself you can do it again.
My question is, do people relapse because they don't keep up with meditation, stretching, diet and lose focus in the long term after being lulled into thinking they're "cured."? If there's a stressful event, (death in family, new baby, loss of job) wouldn't the maintenance help you from slipping and falling back?

To HCR123.

I have gotten better for a long time, many have. You will too. I am 100% sure of that. Definitely not easy to stop catastrophizing, I know. Try to have faith, yoga, PT, rest days, meditate, relax and dont try to rush it cause it will take time. You can't fight this, its more acceptance than fighting that will make it ease.

I am so sure you'll be better, i am not sure I'll be better but thats catastrophizing ! Its easier said than done, thats for sure.

Regarding flares: my PT says the pelvic floor is like water. In many the water is 20C, in us it was more like 5 degrees C. Any guarding, stress or whatever puts the floor under freezing point and the water becomes ice. Cold, expanding, painful and symptoms arise. The trick is to get back above freezing level and it will all thaw quickly. Preventing a flare is hard if you are not carefull, its easy to get back under freezing level.

In my case and I guess in many I tend to just get on with my life after a flare has passed and forget about all this misery. This time I hope I will learn my lesson and embark on a life long relaxation (meditation) practice and work on my emotions. But hey, lets first get better.