2 peoples accounts on how they beat this

[graeme]

Both taken off the uk site

1.

have dealt with chronic pelvic pain syndrome since I was
about 15 I am now 18. I believe the disease comes from chronically
tensing the pelvic floor muscles without being aware. Many-if not
the majority-of people dealing with this problem are dealing with a
long history of being stuck in a psychologically defensive state of
mind, often caused by tramatic events and followed by depression and
other mental illness. Both applied to me and over the years the
muscles become hard from tension and mine didn't even feel like
muscles for a while. I went to a physical therapist and he said I
had the most tense muscles he had ever felt. My symptoms also
included sever pain after ejaculation (easily the worst symptom for
me) and light urinary incontinence. I noticed burning when I
urinated for a while but that seemed to dissapear on its own.

Anyways I do not recommend this approach to everyone but I
found smoking marijuana with close and trustable friends brought me
out of my state of mind and I think doing this for a year has
relaxed my muscles and my mind. I also excercise my cardiovascular
system several times a week with running and I think this has also
helped bring me out of my depression and increased blood flow to the
tense muscles. I daily stretch my legs and pelvis thoroughly. Also I
have not slowed down on sexual activity, I don't know why but this
has seemed to help. I also meditate and my doctor has prescribed me
valium and muscle relaxers, also calming my mind and body. Wowever I
use them for half a month and then stop for half a month to avoid
becoming addicted and lowering my pain threshold. I'm quite afraid
of narcotic painkillers because of their addiction potential. Warm
baths are more relaxing and much less dangerous to me. I usually
take two a day.

I know this is not a good idea for all, but when you are
getting four hours of sleep a night because of the pain you can look
for drastic measures to escape it. It has worked rediculously well
for me, I can now enjoy a pain free sexual and every day life. I can
even drink energy drinks and things of that sort without the pelvic
muscles tensing up. Before I wouldn't dare touch them, any caffeine
brought excruciating pain.

I spent a long time looking for answers on the internet like
I'm sure a lot of you have and I never found anything that helped in
the long run. The only thing that gave me hope for a while at first
was the book A Headache In the Pelvis.

[graeme]

2.

Hi to fellow sufferers.

I suffered for three years with prostatitis which appeared after a
bout of food poisoning (campylobacter).

The symptoms were basically pain in the lower abdomen; urine
frequency, burning pain in the urethra, discomfort etc.

The treatment:

2 x 5mg Oxybutynin Hydrochloride daily. This drug reduces spasms in
the muscles at the neck of the bladder which effectively reduces or
even eliminates urinary frequency. It helps stop those visits to the
loo during the night. Might not be a good idea if an enlarged
prostate is causing urinary retention but if you have no problmes
with flow but are getting frequency problems and mild abdominal
discomfort then this is the drug to take. Much of the pain of
prostatitis is caused by a spasm at the neck of the bladder.

1 x 15mg Meloxicam Tablet daily. This drug is a powerful anti-
inflammatory. It has the effect of reducing inflammation at the neck
of the bladder, the prostate and the urethra particularly. The
urethra to the tip of the penis is an extension of the wall of the
bladder. You need a powerful anti inflammatory.

Paracetamol tablets. Take up to 6 500mg tablets daily if required to
help with any other discomfort.

Drink 1-2 litres of water at least each day

Now I am not suggesting this treatment will work for you but I
noticed an improvement in my symptoms within a week and I am now
pretty much free of all symptoms. It is not for all cases but these
drugs work because I think our understanding of prostatitis is all
wrong. Infections may start in the prostate, though most likely start
in the neck of the bladder. Anti biotics do clear the infection but
symptoms remain because of inflammation at the neck of the bladder
and in the region the prostate opens into the urethra. Urine is an
irritant and inflammation at the neck of the bladder is going to
cause it to reflux into the prostate causing further inflammation.
Its a viscious cycle. Break it by treating the frequency symptoms and
the inflammation with powerful anti inflammatories such as meloxicam.

You can help also by buying some Ibrupofren gel and rubbing this
intop the region very low in the pubic bone where it meets the base
of the penis. This will help further reduce inflammation.

Good luck all with beating this horrible condition

[garyholc]

Where did these come from? I surprised at some of the things said, particularly running and drinking caffene. Running in particular given the stress it puts on the muscles in that area and the impact. Also I thought taking paracentamols long term would cause some sort of stomach problem eventually.

I would love to read more about people who have recovered from ED, I am still having problems, last night being no exception while with someone and I just wanted to break down into tears and have a hole in the ground open me up. I would rather have the pain that have ED, I just dont feel like a man and its rarely you hear from people who (a) have this and (b) have recovered from it to get full functionally back again

Interesting posts though to see the ways people deal with this condition.

[graeme]

off the uk forum.

marijuana a big no no for me but we are all different in our responses !

paracetmol when needed not long term , did not touch my pain though.

http://uk.groups.yahoo.com/group/bps-assoc/

[webslave]

I would love to read more about people who have recovered from ED, I am still having problems, last night being no exception while with someone and I just wanted to break down into tears and have a hole in the ground open me up. I would rather have the pain that have ED, I just dont feel like a man and its rarely you hear from people who (a) have this and (b) have recovered from it to get full functionally back again

Oh oh, there you go catastrophizing again.

In this condition, we know the HPA axis is not functioning normally. At the end of the chain of reactions governed by the axis is testosterone. You could try Viagra, Cialis, or have a course of HRT (testosterone), now a treatment with a future for men:

Studies on primates have found that stress triggers a rise in corticosteroid levels, which in turn pushes down testosterone.

http://www.telegraph.co.uk/news/uknews/ ... Happy.html

http://www.telegraph.co.uk/earth/main.j ... est117.xml

[garyholc]

I understand that webslave - I'm not so much catastrophizing but its just frustrating thats all. What I dont understand is if this condition is caused by the HPA axis, then why dosent everyone get ED. We all tend to get similar symptoms such as aching, pain, urinary problems etc. and we all seem to have brought it on by stress in our lives, so why is the ED so variable between people - what I can gather, only a third get this problem. I've read the report about TP and it improving ED scores for men during a trial, and I am hoping that given time, PT and exercise that things will start to get back to normal, but its just frustrating (a) not feeling anything when with a woman in terms of wanting something, and (b) not being able to do anything or keep doing it when it comes to the crunch especially given I was so active in this department in the past. Hey ho, maybe thats what caused this thing in the first place, grrrrr!!!! Think I'll be a monk, hey, at least work is right on your doorstep, you dont have to worry about ED and its nice and relaxing lol !

[graeme]

I get a slight ED when pain is up and getting a stiff one can not be done without stimulation but when pain is low most of the time now My woody is back every morning

It must just depend on which muscles have the trigger points and there locations which then give off the different symptoms.People with your trigger points proberly have your symptoms.

I know guys who have the high deep trigger points right next to prostate 1 oclock and 11 oclock tend to have my symptoms (post urination pain).

[garyholc]

True, good point there G. This is why I know this isn't in my head, because my woody in the morning doesnt appear. Only on very rare occasions now! I'm sure I read somewhere that ED occurs when symptoms are usually at their worst, and gets better with time. One more question though I would like to throw out - I understand muscles and testosterone etc (mine was ok though) can cause ED, but what about prem Ejac, I am finding I really can't last very long anymore which is also frustrating, I wonder if this could this be something to do with the nerves???

[graeme]

I've heard it can be because of the muscles already being tight and disfunctional down there its like already being halfway there and is easy set off !

[Jay]

Paracetamol tablets. Take up to 6 500mg tablets daily if required to help with any other discomfort.

Wow, that's a lot of paracetamol. Up to 3000mg per day. I hope that fellow is being watched for liver toxicity!

Interesting stories, nevertheless, Graeme! The first guy sounds a lot like myself. I have some of the most hypertonic PF muscles my therapist has ever seen, too, and I am also on muscle relaxants.

[tiger]

I am successfully beating this. I am just short of a success story but I can now see the light at the end of the tunnel. Getting back to enjoying life brings relaxation for the most part. I am sure the time component has a whole lot to do with it. The golf ball sensation and the rectal trigger points are no more. Most of my tightness is now limited to the area near the left Alcock's canal and pudendal nerve. I continue to lightly stretch - too much vigorous stretching causes a mild increase of symptoms. I have no urinary symptoms since my TUIP last fall. I think increasing fiber in my diet allows for less pelvic floor irritation due to constipation. So breakfast now is limited to Raisin Bran and a banana. Erections are harder and more easily obtained. Pain after sex is gone. There is some mild tingling on occasion, but nothing distracting. Keep the faith - this gets better - but on a time schedule most of us are not accustomed to dealing with (2 years for me).

[graeme]

Jay the standard adult dose for paracetamol is 2 x 500 mg . 4 x a day . Which is 4000 mg a day .

[elitynski]

I'm not familiar with some of these drugs but it does seem that anti-inflammatories might be a very good idea. I'd love to hear others thoughts on this.

Also - there is an "Anti-inflammatory diet." I wonder if anyone has seriously incorporated this and what kind of success or response they had.

helpful thoughts.