Thoughts on where to go from here.

[coppertop]

Dear fellow CPPS'ers,

I have been a member of this board for almost 2 years and have posted a few things from time to time. Mostly I read other's thoughts and have gained a great deal of insight especially from people like Webslave, Carl, and Jay. I am now looking for a bit more perspective from anyone who wouldn't mind sharing some.

A brief background: My symptoms started in April of 2008 with frequent urination, pelvic pain, supra public pain, and mild urinary retention. I went to a local urologist and went down the road many of us did; "prostatitis" diagnosis and antibiotics. A month later symptoms continued. I had many tests done; CAT scan, MRI, cystoscopy, multiple DRE's, urine cultures, stool cultures, colonoscopy, etc. Nothing showed anything pertinant nor any sign of infection. (My blood work showed low testosterone at 201, but that was it.) After being placed on Flomax, and more antibiotics without relief, in July of 2008 I went to Columbia University Medical Center in NYC and saw a great urologist who immediately diagnosed it as CPPS, told me to get off all the meds, and start pelvic floor PT. I started treatment with a therapist trained in HITP techniques and got some relief, but after about 10 sessions, while the LUTS symptoms subsided, I got a new symptom; terrible pain in my sitz bones areas whenever I'd sit down. The more I sat, the worse it would get. I tried several medication trials including Lyrica, Elavil, Flexiril, anti-inflamatories, Prednizone, and Urozatrol. None provided any relief.

I saw a PM&R physician who did an EMG and found nothing conclusive. I had several trigger point injections done without relief. I saw a chiropractor, accupuncurist, massage therapist, and an osteopathic physician, all of whom provided no relief. I saw three different pelvic floor physical therapists for a bunch of sessions. A few trigger points were found which were released, but this symptom remained. I saw a neurologist who saw no neurological deficits.

In the Summer of 2009 I saw Dr. Robert Moldwin (see my previous posts on this) who put me on low dose tramadol (25-50 mg/day) and low dose valium (2-5 mg day) as well as referring me to his PT. I exercise every day (swimming and running), I do yoga, paradoxical relaxation, and moment to moment relaxation. I take any accredited quercetin product and hydroxizine as needed.

The PT (recommended by Dr. Moldwin and trained in HITP protocols) says I have no trigger points that she can find. (and believe me, she looked!) I have been taught to do self care PT and have a wand, which I do several times a week. I skin roll and do myofascial release. I stretch multiple times a day and am about as flexible as they come. I don't "strain", I avoid sitting as much as I can (hard with a desk job), and enjoy my life, family, activities, and kids to the fullest. I have been following this protocol for almost a year. I have accepted my condition and know that I could live like this the rest of my life, but I'd rather not if I had a choice.

So, over two years since initial symptoms I get an occasional LUTS flare for a day every month or so, but my only major symptom is the chronic pain in my rear. I take my tramadol and valium every day to knock the pain to a bearable 1-3 on the scale so I can live my life. It seems like there are no further options to explore beyond what I am already doing.

So, any thoughts on where I go from here?

Coppertop

[webslave]

An unusual case.

You have a few options.

1. With the ischial tuberosity pain, there may be something completely different to CPPS going on.
2. If not, go to a very experienced PT (eg Marilyn Freedman in NY). Never decide you do not have TrPs based on one female PT's investigation.
3. Give it Time. Many cases fade with time (see paper presented in AUA 2010 by Jessica Brewer)
4. You may have a spinal nerve issue. MRI does not always show these problems (I know from personal experience).
5. Get a Wise-Anderson wand (when it becomes available). It looks to be much more effective because of its design than stick wands.
6. Investigate some of the experimental therapies discussed in the Research forum

[samgg10]

There are a lot of external TPs involved in that kind of pain. From your description it sounds like you've taken care of these, or at least a PT has, but it might help to grab the Clair Davies book and investigate one-by-one the externals that refer there.

Another PT is an obvious step I'm sure you've considered. I'd try it.

[coppertop]

Thank you both for your thoughts.

@Sam I have actually seen 4 different PTs; all of whom were well versed and trained in internal TP release and subscribed to the theories in HITP. Marilyn Freedman is my current PT. According to most (and my doctor), she's the best around second to Tim Sawyer.

@Webslave I have an preexisting minor ridiculopathy at L5/S1. Thoughts on if that could be a contributing factor and any further thoughts on who I might see on treatments to look at.

Thanks.

Might anyone have a diagram or description of any external TP's that refer pain to that area?

[webslave]

Yes, the spinal issue could easily be the cause of pain in that area. This is a difficult issue. I had a spinal injury in 2005 that took 1.5 years to begin to fade (mine was slightly higher up than yours, and it caused pain throughout the top of my buttocks). I found relief with ice pack treatments and specific exercises given to me by a PT. viewtopic.php?f=7&t=6464

[carld]

I know from my own experience that the 3-year mark is where I noticed the recovery state working on my protocols...