Is AHIP really the solution?

[Paso]

Gents,

Lately I have after 2 years of feeling great had 2 very close flare-ups. The first one (Frequency, Pubic bone burning and some stinging pain) went from Nov-early Jan. My wife (who does the internal TP) found triggers on the inside (levator ani and coccygeus) and the outside (on the actual pubic bone) and we managed to treat them to break the flare. Then a couple of weeks ago (after some serious anxiety about other stuff and a cup of black tea) I got new symptoms that I have never felt before (5 years into this now).

They are a much more raw inflamed feeling in what feels like my bladder area with some frequency. Pain gets worse when the bladder fills as well as if the urine is more concentrated. Here is a weird finding however... If I fill my bladder with water by drinking a large quantity I feel no pain and my bladder holds plenty of urine (probably 750cc or more). Also I do not wake up at night to pee. When I wake up I can have really concentrated urine in my bladder that does not seem to hurt or bother me during the night...WEIRD

We started looking for TrPs on the inside and found none. It feels smooth... I did have some TrPs or actual bladder pain in my lower abdomen area. When I press there it recreates some of my sensations. Don't know if they come from the bladder or if they are from surrounding muscles. I do not want to push on my bladder so that it hurts if you know what I mean.

These new symptoms together with the fact that I was so well for so long obviously makes me feel sad and frustrated.

I have also lately started to see more people here (new and some old ones) that share my symptoms. We all have the IC/PBS version of this it seems. I also noted a lot of people in this category, sadly does not seem to benefit from TP work. I have certainly been helped with TP work during my 5 years with this so I am not saying it is not a viable option for many, but I wonder if it is THE solution if you know what I mean.

How do we explain TPs causing added diseases like CFS, Sjogrens etc in IC patients? Or are they anxiety driven?

Do we here need to broaden our approach or do we feel like what Dr Wise et al are working will help most people done right?

Paso

[webslave]

If you have a serious episode of anxiety, no matter how well you currently are, or how "cured" you feel, you will probably develop symptoms. My answer to this is to limit anxiety to the greatest extent I can, and I am mostly successful at this. Now if you go further, as you did Paso, and combine a big dollop of HPA-axis-disturbing stress with a megadose of caffeine from strong coffee, you will make it worse still.

Other points:

• Stress and anxiety are pro-inflammatory (complex hormonal cascade, but just take my word for it)
• A very full bladder is therapeutic in the same way a hydrodistension can help, inter alia by stretching deep pelvic muscles
• The fact that you were "well for so long" and now have symptoms again should not make you sad or frustrated, because you are never fully "cured" of this condition, you only learn how to put it into remission
• Unfortunately, the people who post here and seem not to be improving are giving a false impression, because the many men who are getting well and going on their way, or who join but never post messages, are not here to tell you the other side of the story. Here you see a lot of messages from men who are 1) not getting proper treatment, 2) don't really "get" what they should be doing 3) are depressed or so anxious that they will never improve unless they get psychological treatment as well as physical treatment, 4) have another issue/illness altogether (often OAB and detrusor problems), or 5) have additional triggers that are not being eliminated (especially dietary).
• Trigger points do not cause CFS, Sjögren's etc. However, CFS/fibromyalgia has been linked to the same sort of HPA axis disturbance as CPPS.

[Paso]

I think to a large extent you are right in what you say. I worked on my abdomen today and found some new trigger points close to my pubic bone that may well be the cause of my issues. Additionally I will go see Bill Taylor, hopefully this week to get a "check up". What he then find, I can work with my wife on.

On a sidenote and regarding anxiety, I feel I have to share an experience I had a couple of years ago. For various reasons (mostly my hypochondria) I thought I was developing ALS (bad nerve disease you die from). When my anxiety increased I started having lots and lots of so called fasciculations (Muscle twitches) and I almost felt paralysed and very weak in my legs. I also suffered from very sore and stiff legs. I ended up in the hospital with a panic attack...

Meeting a good doctor who explained to me why I did not have ALS and getting my anxiety (for the time being) removed all my symptoms within a week. This taught me the power of our mind...

So back to relaxation for me and stop worrying.

[superuse]

Paso-
Have you ever had a good 18++ month stretch of practising the SP relaxation, etc without the added pelvic stress of tennis, soccer, weight training, or cycling (if any?) I know when first getting a handle on the condition many have an enforced break, (the pain or discomfort eventually ensures it) only to return to it as soon as the discomfort hits nuisance level (with flares). I mean getting all the ducks in a row, familiarity with SP, no heavy pelvic exercise, getting past the first year or so when getting some perspective on the condition and getting it settled down. Also a breakup of long periods of sitting? (if any?) and work on anxiety.

Webslave has some good points above as to the persistence of the problem. However far too many men (70%?) on these boards have a similar profile to the one I have below, possibly with a pelvic stressful sport like soccer, hockey, karate, etc. to ignore the contribution of heavy exercise starting and exacerbating the condition. This seems especially relevant given the symptoms and young age of most.

On the ladies pelvic pain boards, many times the size of the male community (almost all PTs are ladies treating ladies for pelvic pain) there is no shortage of young women and running shoes, elliptical, and gym visits along with major culprits, dance and ballet shoes (major pelvic stress). Of course, a career and 50 hours of sitting as a lawyer, accountant, computer gal, whatever not uncommon.

On the ALS, MS, Reiter's syndrome etc. front, many have been there as the symptoms of pelvic problems are somewhat similar to the neurological diseases. Hypochondria and catastrophic thinking seems to come hand in hand with the anxiety and OCD that is prevalent.

[calguy]

Paso,
My Pt did some lower abdominal work on my me last week and it really helped with groin and tightness around bladder. Everything is not internal as I have found. I have another session Monday and we will continue with external abdominal (lower) work and internal work. Be careful with working on the lower abdominal area because my PT overdid it there right before Christmas and it caused frequency to pick up. I didn't see her for 2 weeks because she had something come up so I suffered with it. When I saw her again she said she was sorry and wouldn't have done so much abdominal work if she new I wasn't going to she her. After one session she calmed everything own with internal and loosing/massaging the ab muscles she triggered and set off. Yes definitely external trigger points, some as far up as your belly button to the left or right. I can get better description on Monday and will pass it on.

[Paso]

I have had a crappy weekend with pain and discomfort in my lower abdomen. Not so much frequency, but this really scares me. I have always looked at IC as to what I have (But less so when I was feeling well of couse) but I have never done a cystoscopy. I did some research and found out that a team here at Swedens biggest hospital can diagnose inflammatory diseases with NITRIC OXIDE instead of a Cysto. They fill the bladder with Nitric Oxide and then make you hold it in your bladder for 5 mins or so. They then measure inflammatory markers on the Oxide when out of the bladder. They also use this for measuring what treatments you respond from. If the levels seen drops during treatment, that particular treatment should be beneficial.

Read more here http://www.kup.at/kup/pdf/6298.pdf

Do we know if people with IC/PBS have the same positive reactions to the protocol? I know David Wise and his group are now seeing a lot of Women (which I assume have IC) and it would be very intersting to hera more about how that goes.

Anyway, I will try and see the people above and get a proper diagnosis (Which I know will be IC) and then hopefully they can help me with treatment. I will continue with TP work and resume my SP work.

Paso

[scotsman]

Paso - sounds like you're in the middle of a flare - and all the anxiety you're self generating will be making things worse.

You worked on your abs yesterday, found some triggerpoints, treated them, and you're amazed that you're having a reaction the day after? That is very commonplace.

Take a deep breath and don't let yourself get wound up. This all sounds like your posting 18 months ago when you were convinced you had IC. You did TP work, did the relaxation and your symptoms went away. You stop doing the relaxation work, stop doing the stretching, have a very stressful job, young family and you wonder why it's come back?

Keep this all in perspective my friend.

Richard.

[Sleeper Service]

Patrick, it's worth pointing out that this condition is notorious for waxing and waning. You've had two short flares - and there is no reason to suppose that this second one will last for ages - after two good years. Prior to this you had bad symptoms for two or more years so it's not the same duration or intensity.

Do what works for you and you'll get better. You may want to ask about Elavil for bladder sensitivity.

[HelpADude]

I had cysto done (without Hydro) and the uro said I don't' have IC yet sometime I wonder when a flare comes on and I get suprapubic discomfort...

I would say this, if certain foods irritates you, then avoid it. With a diagnosis of IC there isn't a whole lot more/less you do anyway.

[kevin]

I had cystoscopy done (without Hydro) and the uro said I don't' have IC yet sometime I wonder when a flare comes on and I get suprapubic discomfort...

A uro can't determine whether a patient has IC/PBS by doing a cystoscopy. They might be able to tell you if you have Hunner's ulcers, but those occur in only 5-10% of IC patients. Fewer physicians are doing cysto with or without hydro these days; it is not really a reliable indicator of anything. These days, diagnosis of IC is made based on symptoms.

Case in point: I have all the symptoms of IC/PBS and have not even bothered to get a cysto done.

As I have stated many times, I see IC/PBS and chronic prostatitis / chronic pelvic pain syndrome as being different ends of the same disease.

[Paso]

I hear you guys and you are of course right to a large extent. My point is that very few people here seek treatment for IC. I am talking about instillations in the bladder etc. They might not be the solution long term, but they can help in short to mid term I suppose. Kevin, you have had issues for 5 years, yet have you tried any bladder instillations and other IC remedies?

Boy oh boy does this suck...

Off to do some relaxation (Thanks Scots for getting me back into this)

[carld]

I had cystoscopy done (without Hydro) and the uro said I don't' have IC yet sometime I wonder when a flare comes on and I get suprapubic discomfort...

A uro can't determine whether a patient has IC/PBS by doing a cystoscopy. They might be able to tell you if you have Hunner's ulcers, but those occur in only 5-10% of IC patients. Fewer physicians are doing cystoscopy with or without hydro these days; it is not really a reliable indicator of anything. These days, diagnosis of IC is made based on symptoms.

Case in point: I have all the symptoms of IC/PBS and have not even bothered to get a cystoscopy done.

As I have stated many times, I see IC/PBS and chronic prostatitis / chronic pelvic pain syndrome as being different ends of the same disease.

Good points Kevin, but I will disagree with you that cystoscopy "with or with out hydro is not really a reliable indicator of anything"

They can check for narrowing..and check the bladder for tumors like we all know. Once more serious things are ruled out...you can relax and not worry as much because after all, anxiety is the major component to CP/CPPS, at least it is for me.

Paso...The good news is you know what to do to break the flair and stay in the relaxed mental state needed to keep this under control. I think health anxiety men like myself....always concerned about my health opens me up to being a pelvic clencher and more CP/CPPS prone. Since I have gotten my anxiety under control and watch my diet...my recovery continues to improve...days that I have that are off are no big deal to me any more. Just a friendly reminder to stay relaxed and on track that's all.

[kevin]

You're right carl, I meant with respect to IC. People used to think IC was caused by glomerulations, but this theory does not seem to hold water based on more recent evidence.

[carld]

You're right carl, I meant with respect to IC. People used to think IC was caused by glomerulations, but this theory does not seem to hold water based on more recent evidence.

[Paso]

Back home after 2 sessions with Bill Taylor. He is a really good guy and very knowledgeable if you ask me. I have been to Stanford and also seen Bill before and in my view he is the real deal.

Also met a guy there who had severe pain in the urethra for 22 years...Now he is virtually fixed...

We found a very tight abdomen with many trigger points in and also some nasty ones but few internally (iliococcygeus). They recreated some of my symptoms from my lower abdomen.

Got a home program that I will try and then try and cut back on my anxiety which I know is feeding my issues.

More when I know more.