Need to get this off my chest (Garyholc's Case)

[garyholc]

I know a lot of what I will say here will have been mentioned before, I know what some of you guys will say, sorry, I just have to get what I am feeling off my chest, needing to talk to people about it, because its been bothering me the past few weeks. I guess I am somewhat scared, and feeling that I have little control over things at the moment, and a bit down in the dumps.

This all started for me in March this year (07) with very frequent urination. I guess looking back, I had small episodes which I thought of as nothing, such as pain in the lower back, testicles etc. I ignored them, they went away.

March, April, May, June, was terrible. Just constantly back and forth the loo. Worried about work, my love life etc. But no pain. All the tests I had done, nothing, all clear. Gradually this frequency started to reduce, and I would feel my spirits rise again, I wanted to go out again. Then again, the symptoms would come back for a few weeks and I would feel myself go back into my little dark corner.

Since the summer, I noticed pain starting to occur. Mainly in my lower back, sometimes in my groin area. The past two months in particular I have been noticing it a lot more, pain in more areas, particularly down my legs, behind my knees, between legs, sometimes in the penis.

I have been having a hot bath every night for an hour while listening to relaxing cd's, I have trying to relax a lot more, and trying to keep my spirits up. Howevr, I am fearful for the future. I am not trying to think catastrophically, its encouring to read how people are coping - but at the moment I guess I am just feeling on a low.

My 8 year partner left in the summer, which left me alone. And trying to start a relationship with this, well, its difficult. I have a date tonight, I really like this girl (met her before) but I'm afraid I may not be able to have a relationship with her should this continue or get worse. I'm keeping it to myself, but planning a night out for dinner with someone, or going to bed with them - things I would look forward to, I now dread and they fill me with fear, as I just dont know how I will feel on that particular day - I feel like its my body ruling me at the moment.

What also really scares me is that people say the first year or two is the worst. Also, many people find their condition to be progressive, particularly true if you read the extracts in HITP. I'm thinking, well, I started with no pain, I now have pain, usually on a 2-3 / 10 on the scale, sometimes up to a 5, but nothing I cannot cope with and I dont need painkillers. But what does the future hold... I am worried this will get much, much worse, I am waiting for the day when I get pain 8/9 on the scale and work/relationships etc will be impossible. I am trying my best and am determined to get through this without popping pills, they will only mask the true reason behind this. In the past 2 months, I probably have only taken 3 painkillers when things got uncomfortable.

I know I have to learn TPR and I will go up to Scotland to see Bill in the new year. Unfortunately, running a house on my own now, money is a big issue for me. I guess I'm just fearful for my future. Will I be able to lead a fairly normal life with this in the future? Go on vacation, long flights, have a good love life? Sometimes I think not, or I am unsure.

This condition has made me realise how much stress I used to put on my body, and made me realise just how much I would disrespect my body sometimes, and that is a good thing, but its whats around the corner which is worrying me, particularly as I feel over time, the pain aspect has got slowly worse not better.

Sorry to type all this out, just needed to get it out, share it with people who no doubt, some of which have been there, some will be thinking it now, while others have been through it and out the other side. I honestly have to say I dont know what I would have done if it not for finding this board and the people upon it, I know compared to others I have this condition mild, and I should be thankful for that. I guess I just want to be my normal, happy, funny and cheerful self again......

[Richard.N]

I know only too well what you're going through, mate. I know you know I'll say it does get better, but it does.

What also really scares me is that people say the first year or two is the worst. Also, many people find their condition to be progressive, particularly true if you read the extracts in HITP.

It's not my experience that this is progressive (and I don't get that sense from anyone else or A HEADACHE IN THE PELVIS). However, I'm at the end of a two month flare and this time I have experienced some new symptoms. Not worse - far less severe than in the past - but some different symptoms. Your symptoms may change over time, but I think the waxing and waning you are experiencing is a positive thing. When I got this - and like many others - it was full on every day for a very long time.

I guess I'm just fearful for my future. Will I be able to lead a fairly normal life with this in the future? Go on vacation, long flights, have a good love life? Sometimes I think not, or I am unsure.

Short answer: yes. You will cope, you will improve. You were on the razz in NY the other day - a triumph!

Edit: Where are you going out tonight? I know Cardiff quite well as I'm originally from Monmouth and my sister lives in Penarth.

[garyholc]

Hi Richard, thanks for the reply. Well, I'm taking this girl to the Bay first for a meal then into Cardiff town centre around the clubs, prob Yard, Square, Walkabout etc. Going to be a late one, will be sticking to the vodka though, no beer!!! Only thing I hope is that walking around won't cause me pain like it did in NY last weekend ) I go through Monmouth regularly on the motorbike, past Tintern abbey, stop off down there for a drink. Know Penarth well too, been looking at apartments down there in the bay )

[webslave]

I have never heard of it getting worse once the patient decides to take an active role in getting better, and start trying one mode of treatment after another that we talk about here, until they strike on the combination that is right for them. It's the ones who think negatively and refuse to join or read this forum who are in real trouble.

[Richard.N]

Hi Richard, thanks for the reply. Well, I'm taking this girl to the Bay first for a meal then into Cardiff town centre around the clubs, prob Yard, Square, Walkabout etc. Going to be a late one, will be sticking to the vodka though, no beer!!! Only thing I hope is that walking around won't cause me pain like it did in NY last weekend ) I go through Monmouth regularly on the motorbike, past Tintern abbey, stop off down there for a drink. Know Penarth well too, been looking at apartments down there in the bay )

I was down the bay a few weeks back - stopped off at Pizza Express before going to a gig at the Millennium Centre. The bay is absolutely buzzing now, isn't it? I know the yard and the Walkabout is another pre-gig venue (close to CIA). The Wye Valley is great for derelict heritage sites and pubs! You should check out The Boat in Redbrook. It's in England, but it's still good

Penarth is bloody expensive but it's a lovely place to live.

I guess with the walking, don't overdo it - get a cab from the bay to the centre and try and sit down a bit in the pubs (difficult on a weekend, I know). Anyway - the vodka should keep you nice a relaxed.

Good luck!

[graeme]

Progressive I've had this for over 14 years and my first 2 years were by far the worst ,remissions and waxing and waning but never progressed worse than the first 2 years .

I believe that once your first flare calms which can take years many of us are left in and up and down wax and wane state which the body struggles to heal but I would take these symptoms everytime over the initial first flare ones

So many posts contain the following words including some of mine. ( Feeling better,improved,another flare,thought I was getting better ,worked for a while)

I've often wondered if many guys who treat themselves for a couple of years and improve might of improved anyway due to time

[carld]

Gary,

What you are experiencing is all part of what we go through in the early stages of CP/CPPS. You are in the early stages and I think you are miles ahead in terms of getting on this early and discovering this site and the protocols that are here for you. BUT.....

What I have noticed from your posts is this....I don't really see you aggressively ( in a relaxed way) dealing with your underlying factor of anxiety which is the fuel that feeds this syndrome. I see the relaxing baths and CD's all that is great but correct me if I'm wrong here. I have read nothing from you in regards to seeing a therapist and having your generalized anxiety disorder taken care of. I know you are against medication but by closing your mind to that actually becomes counter intuitive in helping your self. The ego takes over and in the end, it's the ego that causes all of this in the first place. I really believe you need to fight this condition on many fronts and a correct mental diagnosis from a doctor and medication like Elavil, benzos can help break the mental and physical cycle of CP/CPPS. That way all the other things you are doing will help.

Not sure if you have had a pelvic floor exam from a PT to really get you in the right direction on muscles (pelvic/internal).

Also don't worry about your new relationship, go with it and continue to leave her out of the whole CP/CPPS game. Until your relationship deepens, then you can tell her about it, but that you are confident that this condition is no big deal...that you will man up no matter what. Leave all that CP/CPPS bull sh*t for us here to help you through.

Cheers and don't worry, this condition is not progressive if you do all that you can to get well again.

[raggededge]

I have never heard of it getting worse once the patient decides to take an active role in getting better, and start trying one mode of treatment after another that we talk about here, until they strike on the combination that is right for them. It's the ones who think negatively and refuse to join or read this forum who are in real trouble.

Okay, I am not going to throw gasoline on the fire but...

I started with symptoms very similar to gary and I have been reading here, bought HITP and have been trying to do the best I can on my own. I cannot go to the SP clinic and finding a PT that knows what they are talking about has been difficult.

Currently I would say that my symptoms have been progressively getting worse. Pain in the lower back, burning and pain on the inside of my legs, left side of penis pain, left testicle pain. I'm not freaking out, because I know that I can get better, I just haven't been able to figure out how yet.

I, like Gary, do worry that the pain, which is now at a 4-5, will escalate to a 8-9 and disable me from living my life in a meaningful manner.

Sometimes I wonder, what if I don't have CPPS, but something else entirely and I am chasing the wrong path to getting well? This disease will drive you to thoughts that are ridiculous. Anyway, Merry Christmas to all...

[carld]

I have never heard of it getting worse once the patient decides to take an active role in getting better, and start trying one mode of treatment after another that we talk about here, until they strike on the combination that is right for them. It's the ones who think negatively and refuse to join or read this forum who are in real trouble.

Okay, I am not going to throw gasoline on the fire but...

I started with symptoms very similar to gary and I have been reading here, bought HITP and have been trying to do the best I can on my own. I cannot go to the SP clinic and finding a PT that knows what they are talking about has been difficult.

Currently I would say that my symptoms have been progressively getting worse. Pain in the lower back, burning and pain on the inside of my legs, left side of penis pain, left testicle pain. I'm not freaking out, because I know that I can get better, I just haven't been able to figure out how yet.

I, like Gary, do worry that the pain, which is now at a 4-5, will escalate to a 8-9 and disable me from living my life in a meaningful manner.

Sometimes I wonder, what if I don't have CPPS, but something else entirely and I am chasing the wrong path to getting well? This disease will drive you to thoughts that are ridiculous. Anyway, Merry Christmas to all...

So with out knowing your profile and reading what you just wrote....You are basically not doing much to get well. Reading this site and A HEADACHE IN THE PELVIS won't do anything for you unless you do the many protocols.

You have to find a PT to palpitate your pelvic floor to start with, other wise an investment to stanford may have to be considered

You have to do daily stretches and practice some form of relaxation and
hot baths

anxiety management...key here for recovery over time

change your diet and avoid foods that irritate

look into phytotherapy like Quercetin

Try meds as needed like Aleve (naproxen), Elavil and Benzos under a doctor's care.

Positive thinking and gage your recovery by months and not days and weeks because it takes lots of time to recover and recovery is through out a life time in my opinion. Like a person that does a 12 step program to recover from addiction.

With out a profile signature, I don't know if you have tried all these things.

Regards, Carl...

[Richard.N]

raggededge,

What timescales are we talking about here? Difficult to tell without a footer.

Just to illustate:

I was probably at my worst with chronic prostatitis / chronic pelvic pain syndrome at the end of my first year with it. My initial supra-pubic pain and urinary dysfunction was joined by lower back pain after a few months. With all the worry, my back pain got worse and I entered into a chronic fatigue-like state. I was knackered by worry.

After trial and error with a lot of different medications (this was a bit before A HEADACHE IN THE PELVIS), I got rid of the fatigue and additional back pain and was left with a base line of supra-pubic discomfort and less severe frequency. This reduced over time and I had about two years that were practically symptom free - i.e. a period without flares.

I had a flare last December and one this October. Both happened for different reasons (the avoidance of which I will add to my notes to self) and both lasted for about two months each.

So...it did get progressively worse for about a year - but some of that was due to my stressful response to it. The condition doesn't get progressively worse in the long term, as far as I'm aware.

Edit: PS - as Webslave said above, it's important to find a combination of therapy (be that medication, phytonutrients, diet, lifestyle, SP) that works for you.

[raggededge]

Sorry, I guess I could have given some more information :)

I am in my 15th month of this. I have tried:

Quercetin, any accredited quercetin product - Haven't noticed any real benefits, but am willing to continue trying

Valium - I use this SPARINGLY, it does help some.

I am doing the HITP stretches daily - have not noticed much improvement. No internal work at all, trying to find a PT.

I do 2-3 per week a nice long hot bath, this is by far the most beneficial thing I have done.

Aleve (naproxen), again some help, not much.

Bought a Hara Chair, no benefit yet, but it's a comfortable chair, so no big lose.

I will put in a footer, but basically, I am 36, onset was at 34. I did have some relief for a 3-4 month stretch, but symptoms have been getting significantly worse the past 2 months.

Again, I am not in total dispair over this, I am encouraged by this site and HITP and feel that my condition will improve. I know I need a PT, but again, I have not been able to locate one that knows what I am talking about. Any help would be appreciated. I am in Middle Tennessee.

[carld]

Sorry, I guess I could have given some more information :)

I am in my 15th month of this. I have tried:

Quercetin, any accredited quercetin product - Haven't noticed any real benefits, but am willing to continue trying

Valium - I use this SPARINGLY, it does help some.

I am doing the HITP stretches daily - have not noticed much improvement. No internal work at all, trying to find a PT.

I do 2-3 per week a nice long hot bath, this is by far the most beneficial thing I have done.

Aleve (naproxen) (naproxen), again some help, not much.

Bought a Hara Chair, no benefit yet, but it's a comfortable chair, so no big lose.

I will put in a footer, but basically, I am 36, onset was at 34. I did have some relief for a 3-4 month stretch, but symptoms have been getting significantly worse the past 2 months.

Again, I am not in total dispair over this, I am encouraged by this site and HITP and feel that my condition will improve. I know I need a PT, but again, I have not been able to locate one that knows what I am talking about. Any help would be appreciated. I am in Middle Tennessee.

Throw in some anxiety management, relaxation and a PT and I think you will be on a great track. Now the question is to locate a QUALIFIED pt in the south??? Real tough I think. Call Dr. Wise himself and ask him. You may need to travel for a PT session and so forth.

[Richard.N]

It sounds like you're already doing a lot of the right things.

I did have some relief for a 3-4 month stretch, but symptoms have been getting significantly worse the past 2 months.

It could be that you're at, or approaching, the worst that it's going to get.

Edit: and what carld said

[raggededge]

My biggest Anxiety is not being able to find a PT. Maybe I need to start calling and emailing and see if anyone in the Tennessee area can help.

[boulder]

Ragged, sounds like you're getting a lot of good advice from everybody. One thing I would add, that hopefully will help to keep you from worrying/catastrophizing: I've been getting a bit worse in the last month or so too, but I'm chalking it up to the colder weather. I think a lot of us have symptoms that get worse as the temperature drops. Try to stay as warm as possible in the meantime, ride it out, and I bet you will see things getting better come spring/summer!

As for finding a PT in Tennessee, here's a list viewtopic.php?f=45&t=6289 The PTs they list for Tennessee appear to focus on women, but if you call them and explain your situation, they might be able to refer you to someone.