A forum newbee's intro...need help

[steveinville]

Within the last 3 years I have been diagnosed with both interstitial cystitis and chronic pelvic pain syndrome. Here is the sequence of events. I began having increased urge to urinate, especially at night. It got worse to the point where it often burned during the day, causing me to feel like I had to urinate about every 45 minutes. During this same time period, I began to have increasing discomfort when sitting. (I sat for about 3 to 4 hours of my 8 hour work day--office work.) The discomfort often was such that I felt uncomfortable in my underwear--a nervy kind of irritation.

In working with my urologist, we scheduled a bladder distension--fill with fluid--procedure, and was diagnosed with IC. Over the next 2 to 4 months, the situation--urinary problems--improved greatly, but another problem began to develop which has been the most difficult to deal with over these last 2.5 years.

That other problem is very painful buttocks. Both sides are always sore to pressure, just about right on the ischial tuberosity. Sitting is often very painful. My hamstrings are always tight and sore, no matter how much stretching. Various medicines were tried, and I went through a 6 weeks series of physical therapy sessions involving much stretching and electrical stimulation. No help. The PT thought is was piriformis syndrome. I went to a massage person who told me that the muscles deep in my buttock were always tight/knotted. She was able to loosen them up, but apparently they tightened right back up, and the pain continued.

The PT and massage technician suggested lying on a tennis ball. When I do this, I can "find" the extremely sore area, and feel it loosen up, but that is oh so temporary.

I have worked with a rheumatologist, and through all his testing he finds nothing. His theory was that it was bursitis of the ischial tuberosity. Anti-inflammatory meds were of no help. Muscle relaxers were of no help.

For about a year now I have been taking tramadol (brand name Ultram) which is pain reliever. This helps some, but makes my stool so firm that BM's are often tough, and that just introduces another kind of pain.

Can IC cause this kind of buttock pain? My situations waxes and wanes. Sometimes I can take an easy bike ride and feel fine, other times the thought of getting a bike makes me sore.

I have made significant diet modifications: no juice, coffee, alcohol, spicy stuff, etc. I guess the main thing I wish I could figure out is if I have two problems: IC, and something causing the sore butt muscles/tendons, or could IC be the source of it all. Also, what to do/try next.

I hope someone has some insight, or maybe has faced this and found something to provide some relief. On days when I am having the worst buttock pain, I get so tense that it is difficult to relax enough to urinate. The urination issue now is not too bad. I get up 2 to 3 times a night. The urge is not so uncomfortable, but it is hard to relax enough for the flow to start. I do take Flomax.

Thanks for reading/responding.

[webslave]

It sounds like trigger points to me. You need proper treatment, such as you could obtain from David Wise's team.

[carld]

Steve,

Welcome. You can read my starter list to get some insight on what can get you in the right direction. IC,UCPPS,CP/CPPS...In the end...It's all part of many faces of this condition. I think you would benefit from the Wise Anderson protocol if you can do it.

Best

[coppertop]

Steve,

The sitting/buttock pain that you describe is my worst symptom, and it happened to me as it did to you. I was being "treated" for prostatitis with antibiotics, Flomax, and pelvic floor PT last summer when towards the end of the PT sessions as my urinary issues were getting better, the sitting pain began in August. It wasn't bad at first; only when I'd sit for a while. Then it eventually progressed to a pain immediately upon sitting, and then standing as well sometimes. Here I am now, over a year later.

I'm still working on several facets to provide relief. Here are some things that DIDN'T work:

• I had regular back PT, as at first they thought it was a radiculopathy at S1/L5. Didn't help.
• I saw a chiropractor for several months who did some stretching, minor manipulations, and e-stim. Didn't help.
• Tried several rounds of drugs including Lyrica and Elavil. They help a little at first, but then the pain went back to where it was. I take a Tramadol Extended Release tab 100mg every morning, and that takes the edge off.
• I tried 12 sessions of acupuncture. Didn't help.
• Had a nerve block injection. Helped for a few hours, but then the pain returned.
• Osteopathic manipulation. Felt good while he did it, but the muscles and nerves went back to feeling tight within a few hours.
• Home TENS unit. Feels good when it is on, but no lasting effects.

Things that help somewhat:

• Staying relaxed as often as possible. I do deep breathing, yoga breathing, and cleansing breaths throughout the day.
• Regular stretch and walking breaks from my desk. I have a timer plug in called "Remind Me" that is part of firefox. It beeps every hour to remind me to get up from the computer, walk, and stretch.
• Swimming, walking, and regular exercise. It may hurt at first, but as I loosen up, it always feels better. I try to cardio works outs every other day.
• Warm baths with deep relaxing breaths. Go low in the tub so you are off your tush.
• Stretch in the AM and PM, but get warmed up first. Focus on knee to chest stretches, hamstrings, squat, hip ad/abductors "cat-cow", and child's pose.
• A supporting PM&R physician who specializes in Pelvic Pain, esp. for men and she is sympathetic, a great listener, and very proactive.
• Hatha Yoga (but watch out for deep poses that over stretch, esp. the buttocks.)
• Skin rolling and light massage. I'm with a new PT now who does the myofascial release and Trigger Point PT. She is teaching me how to do it myself and I believe it to be helping somewhat.
• Get good supportive cushions to sit on for hard surfaces. I personally like gel seats, but it is a personal preference. It took me a while to find a cushion I liked. Donuts and wedges didn't help me.
• Avoid catastrophic thinking
• Don't troll the internet looking for a "cure". It only makes things worse.
• Enjoy life as best as you can. I feel the best when I am involved in activities I like; playing with my kids, watching a movie with my wife, exercising, doing hobbies, etc. When I am engaged and not thinking about it, I do not notice it as much. If I do notice it, I stand rather than sit. My family knows my issue so it is no big deal. For those who don't understand why I might need to stand for a while at a movie or football game, who cares?

I will beat this thing. You will too.

This is a great forum to remind yourself you are not alone.

Keep me/us posted on how you do and what things are helping and not helping.

[Hacksquat]

Please explain these stretches in more detail.

hip ad/abductors "cat-cow", and child's pose.

[coppertop]

These links have descriptions and visuals- I learned them all in a hatha yoga class.

http://yoga.about.com/od/yogasequences/ss/catcow.htm

http://www.abc-of-yoga.com/yogapractice/childpose.asp

Hip Check:

Many people experience imbalance between the hip adductors or inner thighs and abductors, the hip and gluteus muscles. To counter this muscular imbalance, my favorite exercise is a stretch, which needs to be held at least 30 seconds.

Preparation:

* On floor or mat, lie face up with arms extended at sides
* Lift one leg straight up then bend knee and hip to 90 degrees flexion

Execution:

* Lower bent knee leg to opposite side toward hand.
* Hold stretch for 30 seconds, maintaining 90° flexion in hip with both shoulders flat on the floor.
* Repeat with opposite side.

[Hacksquat]

I suppose you mean something like this:
http://www.exrx.net/Stretches/HipExtern ... isMod.html

I try doing that one too, for my hip.

Thanks for the info on cat-cow and childs pose, I´ll try those too.

[steveinville]

Thank to coppertop for the detailed feedback, and encouragement. Had I written an even longer first post, I would have mentioned that I, too, had tried accupuncture, chiropratic, and the meds you had listed. Is anyone familiar with the locations available for the Anderson-Wise protocol? Is it only available on the west coast? What does it cost?

[snoopy]

Only available in the bay area, and it cost me about 4000+. It is worth the trip, especially if they still have that hot and nice assistant PT that works with Tim.