UCPPS - Prostatitis, Interstitial Cystitis Forum

Something that I don't really see being discussed on this forum is the mental strain that this disease can cause - and given the clear connection betweem symptoms and stress (relaxation is key component of the Stanford/Wise-Anderson Protocol) I would have thought I'd have seen more postings on the subject.

I've been suffering for chronic prostatitis / chronic pelvic pain syndrome now for 7 months and mentally I've had big ups and downs. Probably 90%+ of the time I cope fine with it, but there's times (couple times a week) when I feel down, fed-up, incredibly angry, emotional, etc. All very common depression type symptoms which, of course, I need to keep in check/monitor. (I'm probably just feeling it more just now as I've just come through a flare-up that put me back a couple months.)

I get a lift from the improvements I'm making through PT/Stanford/Wise-Anderson Protocol but those improvements, whilst real and actual, do take a while and I can only really see the difference when I look back at least 4-6 weeks.

I'm lucky in that I have an incredibly supportive and understanding wife but it's been tough managing the rest of my family - who again offer support but I feel they get frustrated by how little they can actually help (not nice for them seeing a loved one in distress/pain). Work colleagues are yet another aspect.

I was wondering how everyone else dealt with the mental aspect of this disease? Do other people suffer from the classic rollercoaster emotions? Any techniques to address it (outside medication)?

Richard.

Richard,

for me the biggest thing that has helped my piece of mind is finding this site. I hit my low on New Years Eve day. I had a huge flare up, perineum, tailbone, burning urination, and left test huring with groin pain. I was distraught. I was still thinking I had an nasty infection that 12 weeks of Levaquin wouldnt kill, so what would? Needless to say my girlfriend and I missed a really good party with freinds and stayed in and watched a movie, I was glad to have her support.

So knowing I dont have an infection has helped a ton.

Adding the goodies that the site recommends helps physically.

But, beyond that I try to really get a hold of those nasty emotions. I try to realize thats what I'm feeling, go ahead and feel it, dont fight it, and then let go of it. Its like you are stepping outside of yourself. I've never been much on meditation. If my first course of treatment doesnt work then Ill venture to that realm. Good luck and I hope you feel better emotionally.

SS

I know just how you feel and I'm sure the Webmaster does too. Very distraught since no one could tell me what was happening. Unexplained pain and constant discomfort plagued me for over a year. They say over time it gets better. For me it got worse for the first year and then finally improved. I was very distraught, obsessed with finding the cause, the whole mental trap of CPPS. I found three things helped the depression. First, reading success stories on the forum and believing them. Second, keeping a diary which I still do. When it really hurts I read back to days when I wrote how good I felt and I calm down knowing that it will pass. Third, relaxing and letting go. I realized the only thing I can do to help(Prostaprotek, taking care of myself etc) myself is to let go and relax. I have found that lieing down always helps. Why is that? Well the pelvis relaxes when you lie down, pretty simple.

Thanks for the posts

Finding this web site has made all the difference and I guess I need to spend some more time re-reading the success stories whenever I'm feeling fed up.

Keeping a diary is a good idea - it does help when I look over my posts in the success story section (where I post each month) - as it does remind me how far I've come.

Yesterday was a down day as you could tell from my post!

Thanks for the support.
Richard.

This Board has helped me beyond words, while I have been suffering through CP/CPPS over the past three years. When I look back now, I realize that I have learned so much and come so far -- but I still have a long way to go.

Sometimes it's hard for me to even follow my own advice, so I am re-posting a section of an old post ( viewtopic.php?t=563 ) that may be of help:

What I have learned (in the past THREE years):

1. It Sucks. Live with it, but don't EVER give up. I have no idea what evil I did to get this suffering inside of me, but it's here. Experience it. Learn what makes it feel better and do it. Learn what makes it worse and stop. Constantly focusing on how much it's going to hurt next time you have to pee WILL make it even worse. Accept, but don't expect, that you will have pain. Easy to write, almost impossible to do.

2. Find the urologist, chronic pain specialist, or any other doctor, who you feel comfortable with, and who you believe will help you. My first urologist just kept calling in prescriptions for me -- didn't even let me finish my sentences. He told me there is nothing more he can do"¦ I finally found a great, compassionate urologist, who explains everything to me and listens to my complaints. I think we've finally found the "right" combination of medications and therapy to make my chronic prostatitis / chronic pelvic pain syndrome as tolerable as possible. Don't just go to same Doctor because you are "used to him."

3. Listen to your doctor -- But don't follow him/her blindly. If you are comfortable with your doctor, and he recommends an antibiotic -- take it all. If he prescribes you Cardura and you are uncertain, respectfully ask him why he is not prescribing Flomax or Hytrin. A good doctor will explain all his prescriptions to you. If you have severe pelvic floor spasms, ask him for a medication (e.g. Valium, Balclofen).

4. Learn. Read through the ucpps.men Website. There is so much knowledge, experiences, data, links, questions, answers here. Do a Google search with any terms you hear -- you don't even need a dictionary -- Google will usually correct "mispeled" words. Register with Medline/Pubmed. Look it up. When my treatment was at a plateau last year, an article about chronic prostatitis / chronic pelvic pain syndrome and Myofascial Pain caught my attention. I called one of the co-author's, who recommended a local physician to me for myofascial trigger point release treatment. I now see this physician regularly, and he has helped me tremendously.

5. ASK. If you don't understand, then ASK. Post a message. The Webmaster and moderators, and many fellow sufferers give great GENERAL advice. Listen to their advice then ask your doctor.

6. It's not in your head, so don't let it get in there. Don't listen to ANYONE who says your pain is psychosomatic, or that you are making too much of it. Unless they feel what you are feeling, they don't know. Don't expect anyone to really understand what you are going through. Everyone has different thresholds for pain/discomfort. Remember, the people who care for you most don't want to see you suffer! It is a natural social-psychological response for those who care for you to want to minimize their perception of your suffering, so while they may offer you sympathy, sometimes they too can't handle you being in pain.

7. No miracles. There may be a "magical" cure out there somewhere, but don't expect one single medication or treatment to solve everything all at once. Try Algonot and Quercetin. Try hot baths and broccoli. Try relaxation, yoga, physical therapy, and myofascial release therapy. Read a "Headache in the Pelvis." Try Dr. Stoll's S-R techniques. Try Dr. Sarno's method ("The Mind-Body Connection"). All or none of these may help.

8. Don't ever give up.

May you pee pain free"¦
MS

Thanks MS - it does help

Wow! these are some good lessons that all of us should learn to live by!
I couldn't have read truer words!

In 'A Headache in the Pelvis,' Wise mentions Byron Katie and her book 'Loving What Is' which has a simple technique for overcoming mental anguish by questioning the validity of stressful thoughts. I've just started reading it and I'm going to see a therapist who uses it with patients. For me, the mental aspect of chronic prostatitis / chronic pelvic pain syndrome has often been worse than the pain itself, but I stay positive anyway I can.

Thanks kpbos - I'll look that book up

MS that is great advice for all . On this web site you are never truly alone . And I thought you would sign off with ( when you pee , may the force be with you ) LOL .

Everyone who has this condition should be doing some form of skilled relaxation(meditation, autogenics, progressive relaxation, etc) at least once a day(twice is better, when you wake up in the mornings, and after getting home from work)

Open Focus is also a VERY interesting thing, check into it, its pretty different than the other relaxation techniques ...... I have the CD's for it but haven't really started it yet. I'm good at meditation now, but this is coming from a different angle

http://www.openfocus.com/

jd - openfocus does look interesting. Once you've started it could you give us a post on your experiences and assessment?

tia
Richard.

scotsman wrote:jd - openfocus does look interesting. Once you've started it could you give us a post on your experiences and assessment?

tia
Richard.

Sure, I would be happy to, it should be a few months before I get to that point though.

basically the premise of Open Focus is that people are conditioned from a young age to focus far too attentively on things in life, this can be pretty much anything.....

and when a person focuses too attentively on things, their body essentially goes into the fight or flight mode where so many bad things happen(blood flow changes, hormonal inbalances, muscle tension, etc)

It's a very interesting way of looking at things, something that's probably overlooked.....but the idea that each thing we react to causes us to tense up more than we should is prety powerful

Also, there is the idea that you can perform even better on things when you focus less attentively on them. Certain things of course need to be focused attentively on, but other things in life don't need the same degree.

I really like this concept in addition to some form of relaxation/meditation because it will basically teach a person to stay relaxed(yet still performing on a very high level) throughout the day, so it's basically present throughout a person's daily lives, not just during a relaxation session. So I think Open Focus and meditation could go hand in hand, or perhaps a person wouldn't need to meditate once they do open focus.

This is a very broad attempt to describe it in my words, so there could be some inaccuracies here.....the site describes it better than me.

Plus, Dr. Fehmi is one of the original pioneers of Biofeedback in the world and works for Princeton University, an Ivy league school. He's been developing this for 30 years, so his credentials speak for themself.

here's the FAQ

http://www.openfocus.com/faq.htm

Looks like I might be ordering the CD's next week - both my wife and I fancy giving this approach a shot.