big breakthough after six months

[johnnyblotter]

Hi all,

New user here. I recently had a major breakthrough after 6 months of fighting this horrible problem. From multiple emergency room visits to just general debilitating pain and discomfort, to useless rounds of antibiotics and visits to urologists and colorectal doctors, to complete and almost radical dietary changes, to lost income, I've been through the ringer with CPPS. I'm posting here in the hope that someone struggling with similar issues might be helped by what I've been through and how I've just recently started to find success and relief.

I should preface everything by saying that three years ago, I had both back surgery for a huge bulging disc between the L5-S1 vertebrae on the left side as well as inguinal hernia surgery on the right side. These issues turned out to be at the core of my CPPS problems, but not necessarily because of any functional problems - rather, it was due to the tension these issues caused in my lower abdomen. In reading A Headache in the Pelvis and CPPS in general, one thing I found difficult to resolve was how they talked about the idea of "tension". My symptoms had included one rough bout with interstitial cystitis (that ultimately resolved in a few weeks) and then a horrible 6 month battle with rectal swelling and discomfort (the golf ball feeling). What I rejecting in all of it was the idea that I was a guy who held all my tension in my ass. Who wants to think of themselves that way?

So just recently, on a day of abject misery, I went to the gym just to try anything to get any kind of relief. The "charley horse" in my rectum was just so terrible, I don't know how I sat on the subway without weeping. I got to the gym and sat in the steamroom for half an hour, then went into the pool. I went into the multi-use lane with the old ladies and a few other people doing various invented movements and just floated underwater to try to get some type of silence and peace where I could try to listen to some type of body signal. (in NYC it seems underwater is the only place to get any real quiet).

After an hour of this I got out still feeling miserable, put on sweats and went into the stretch room. I took a yoga ball off the rack and just laid on top of it, with my pelvis pretty much on top of the ball and my arms out in front, for about 20 minutes. And that's where I finally started to put together what was going on. I realized my left lower abdominal muscles refused to relax while I rolled on the ball, as well as just my lower abdominals/bladder area as well. Of course, that makes complete sense. After rough back surgery for a problem in the lower left back and inguinal surgery on the right side, my abdomen had been protecting that left side. The charley horse really was in my abdomen, not in my rectum, and not related to my prostate.

I rolled on the ball and forced my abdomen to relax by putting all my weight onto it for ten minutes at a time, after which point I'd walk around slowly, barely believing that the horrible rectal charley horse was starting to noticeably improve. And at that point I suddenly got a picture in my head of what was really going on. I just hadn't understood it until that point, but what I realized was that the "plate" that was my pelvic floor was being pulled up too high by the tight muscles in my abdomen (and my back, to a lesser extent). The plate at the bottom was being pulled up and basically, squashing or irritating my prostate, nerves, and everything else in there.

After an hour of gentle rolling on the yoga ball I got dressed and left the gym, with an extremely convincing feeling that although I wasn't through with this, it wasn't going to hurt me and I was going to get better.

As this happened in the middle of a round of Cipro, I immediately realized I needed to stop taking that, and instead went home, had a nice meal, and took an 800mg horse pill of ibuprofen. Woke up feeling 90% better.

While I can't say this was a spontaneous resolution, and to be honest this just happened yesterday, so I'm fully prepared to put in what could be a lot of work in physical therapy (which starts in a few days) I do have to say that most of my symptoms seemingly abated within 24 hours. And I also want to emphasize that everything in brain up until that point was telling me that I had some kind of nasty infection. Because it 100% felt like an infection...just nasty and gross.

I'm not telling this story to give anyone false hopes, but rather that I might be able to help others figure out what muscular problem might be causing their CPPS...what might be pulling that pelvic floor plate up too high. Once I realized my junk was being pulled up and squashed, it really was like a huge lightbulb went off. The anxiety disappeared almost completely and I am not extremely confident that even though I'm not 100% "better" yet, that I will get there.

I will also add that it took a lot of different types of experiments just moving, stretching, gyrating...all sorts of stuff to try to figure it out. Being that I have been through tons of physical therapy in my life, I might have a bit more experience trying different types of movements and exercises than other people, so I would really encourage anyone out there to think about / try different types of SAFE movements and stretches to see if any lightbulb goes off..as well as finding yourself as good physical therapist.

That's it. Hopefully I am going to continue to beat this thing.

[webslave]

Very interesting insights, thanks for sharing that!

[johnnyblotter]

Just got back from the physical therapist and my god was she terrible. Holy crap. Just shockingly bad.

I'm going to continue to fight this thing on my own while I look for someone qualified. Haven't checked out recommendations on here but will take a look later.

I guess what I learned here is that for something this difficult, a physical therapist is someone I'm gonna basically interview. I've lived with this for a long time and if you won't listen to what I have to say, I'm out of there.

[johnnyblotter]

One thing I really should emphasize is this yoga ball thing. I bet that it's a common thing for people to protect their genitals via tight abdominal muscles and especially the area just above and where the bladder is. What I have learned to do is roll on top of it, relax my abdomen and let the ball press into it. When I hit certain points, I feel my sphincter relax and everything opens up a bit down there. I guess this is what they call a trigger point. It just so happens lying on top of the yoga ball has been what has allowed me to find this trigger point.

Again I went and sat in the steam room and sat in the pool today after this horrendous run in with this stupid physical therapist, and again what is actually really helping is hitting the trigger points with the yoga ball.

[webslave]

Yes, therapists can be very variable, as you have discovered. Perhaps we can make suggestions about other therapists, but what is your location? (If NYC, then go to Marilyn Freedman). Add it to the "Location" field in your profile. Also complete your signature, thanks.

[johnnyblotter]

Yes, I'm in NYC (Brooklyn). I saw Rozeanne Cruz Schoen mentioned from Beyond Basics Physical Therapy and Marilyn Freedman's location in Long Island is slightly inconvenient, but if she has the best chance of helping me out, I'll go see her.

After my "big breakthrough" I've had a few variable days. Hopefully I'm out of the torture zone, but jesus is this thing frustrating.

[johnnyblotter]

Hi all,

I posted above about a breakthrough I had with some trigger points and a yoga ball. As my symptoms have sort of crept back (though not as bad) I thought I would talk about what my drug prescriptions had been prior and see if I can get any feedback on whether I really should be just stopping the Cipro at 2 weeks in. My history of pelvic issues and surgery is about a mile long (including 3 urethral stricture surgeries going back to age 13, disk surgery of the L5/S1 vertebrae and inguinal hernia surgery) so I really appreciate anyone who makes it through this and might have some useful feedback.

My symptoms started with classic type of bout of IC (lots of urinating and pain above the penis), which were severe enough to send me to the E.R. Fortunately this has turned out to be a one-time occurrence which went away in a few weeks.

A few months later, after vigorous masturbation and smoking pot, I once again triggered the usual symptoms that I seem to trigger about once a year (usually brought on my masturbation and pot...I should have learned by now to not even smoke pot occasionally) - a swelling and full feeling in the rectum, which switches between knifing, aching, and just kind of a sick feeling.

For years I have always treated this as hemorrhoids because that's what I thought it was. I would treat it with hot and cold sitz baths, tons of water, and lots of hemorrhoid creams. After about 8-12 frustrating weeks it would finally always go away.

This time it's been six months dealing with the rectal nasty feeling. Last December I had an absolutely horrendous problem with the rectum, which was the terrible swelling mixed with a horrid shooting sensation all the way in the back of the rectum. I should say here that my apartment was incredibly cold this winter. I went to the E.R. and was given a round of doxycycline hyclate for two weeks along with 2400mg of ibuprofen a day. I improved about 30% but was still miserable.

The uro I saw put me on two weeks of Cipro as well as Flexeril. At the end of two weeks, I felt about 80% better. Of course I decided to smoke a little pot (and I do mean a LITTLE). Not sure if that was what put me back to feeling bad, but within a week I was sinking again. The charley horse and kind of sick swelled up rectal feeling just came back fairly strong.

At no point did the uro discuss trying to figure out whether this was bacterial or not. He said the approach was to basically try things and see if they work, and that physical therapy would also be something that I should do. So he prescribed 4 weeks of Cipro this time. I got about 25% better during the first week, but then into the second week I started getting worse and the charley horse in the rectum started to just get incredibly nasty.

I should also add that tomorrow I am getting an MRI of the anal area which a colorectal doctor ordered (the same doctor who told me 100% my problems were not hemorrhoids).

Now just 3 days ago, feeling more miserable than I had in a while, I went to the gym and seemed to find a trigger point on a yoga ball that gave me somewhat dramatic improvement fairly instantly. It was just like a switch that I hadn't flipped or something. I did this yoga ball thing for like an hour, and then left the gym feeling absolutely great...even though I still had the rectal problem, it had been diminished by 50% with just these exercises.

At that point I decided that the Cipro HAD to be a waste of time. After 12 days of it, and feeling like crap only to have it turn around with some trigger points seemed like proof positive that this was a muscular issue, and that tension in my hamstrings/abdomen/rectum (stemming from protecting my lower back due to rough back surgery and hernia surgery) were the real issue.

However now a few days later (after stopping the Cipro) I am having a day where my prostate just feels big and gross and I feel kind of sick and listless. There's no doubt this trigger point I found was big step, but there's also the fact that the prostate area just FEELS sick. Do you think it's safe to assume that this is just because of inflammation and trauma to the area? Am I wrong to stop the Cipro? Should I fire my uro and find one who will commit to doing lab tests on my prostatic fluid? (he's only done urinalysis which was negative and my PSA is fine). Should I go back ON the Cipro? I have to fly to California next week to meet my girlfriend's extended family, and while I can see that this might be causing anxiety (even though I've met her folks and gone on vacation with her and her aunt and I'm generally pretty easygoing and comfortable), I think my main worry about that is just being there and not feeling good. But putting that aside, I guess my concern is about just stopping Cipro of my own accord and assuming this isn't bacterial.

One final note here is that I have been having some slight IBS issues that have accompanied the rectal pressure - some excess uncomfortable gas, and some occasions of slight straining or not great bowel movements. What that is, I really have no idea, but my working theory is that all this stuff is a chain reaction stemming from overprotective muscles, smoking pot, and a somewhat jumpy and edgy nature to begin with.

Thanks for the your patience, and let me know if you think quitting the antibiotics is the right thing.

[webslave]

after vigorous masturbation and smoking pot

Both known triggers for CPPS.

This time it's been six months dealing with the rectal nasty feeling.

Usually known as the "sitting on a golfball" or "golfball in the rectum" sensation.

I should say here that my apartment was incredibly cold this winter.

Another well known trigger for CPPS.
viewtopic.php?f=4&t=7879

Am I wrong to stop the Cipro?

No, you are absolutely right.

Should I fire my uro and find one who will commit to doing lab tests on my prostatic fluid?

Fire your uro and see Freedman, and do more reading here.

[johnnyblotter]

Thanks for the replies webslave. This is a big help.

The other part of my miles-long health history is that I'm bipolar, with a pretty severe past, although I have actually been medication free and symptom free for 5 years.

I've gone from being on charity housing and Medicare to owning my own reasonably successful web company. The back surgery seemed like the last straw for my bipolar mania. I felt that there was no possible way to generate that kind of out of control energy again as I was forced to re-learn how to walk, and basically give up my weight lifting and running.

But now, even after 5 years of extremely stable mood (even with this hellish CPPS I've been managing to avoid serious depression) I am thinking it's time to consider going back on Lithium. It was the only drug I was ever on that served to bring me down from manic episodes, and I think that possibly these manic tendencies are kind of expressing themselves in the form of CPPS. Although, I doubt I could have any productive discussion about this with my doctor. And I'm extremely leery of getting back into the psych system. And who knows if Lithium would do anything to help my CPPS. I worked incredibly hard to get out of all that. And I haven't told the guy about it either. I don't think he'd know what to do with the information, but as he's a nice guy and not an idiot and I can access specialists, I'm not sure how productive it would be to try to find some heroic general practitioner who would be able to give me any decent advice.

I was able to swallow giving up the heavy exercise and running but it's going to be a real test for me to figure out how much of a type A personality I'm going to be able to keep. I like to focus hard on things and work to get them, and I've always been the kind of guy to be able to react well to pressure, getting stressful work stuff done at the last minute, etc. I also have been a musician forever, owned recording studios and the like, and am also pursuing opportunities in that area, but over the last few months I must admit I've given up (hopefully temporarily) on working on this stuff. Where I'm at is basically just trying to make sure I do enough work to pay the bills and keep my clients. The rest of the time has been spent going to doctors, not sleeping, panicking, or going to the gym to try to stretch and swim and figure this stuff out.

So I am definitely feeling a bit neutered by all of this. On the plus side, I am able to have satisfying sex (although I'm not in the mood as much) with no additional pain. I am thinking that although the golfball symptom is so terrible, maybe it's a good sign that it's really my only symptom, aside from a slight bit of an IBS-ish type of gasiness which has been annoying but mild and a brief bit of ICS which thankfully resolved (so, so terrible). And I've also had a less stressful (but still quite uncomfortable) version of this same thing every year for the last five years. I've always treated it like hemorrhoids and it's always completely resolved eventually. This round obviously is much worse and has lasted much longer and is a bit of a different beast, but maybe it's just a stronger version of this beast.

But for now the biggest thing is just not sleeping. Who can sleep with a golf ball in their ass? I don't fall asleep until 5 or 6 sometimes, wake up at 10 o clock groggy and muddle my way through work. It's put me in a low-grade type of cloudy depression, although it's not like a real deal depression, just a situational type of thing.

Anyway, I suppose at this point I'm ranting.

Wondering what you or anyone might think about the Lithium idea.

[johnnyblotter]

Wow. This whole thing is just something else.

Spent twenty minutes doing back bends and realized all throughout rehab I had a tense abdomen. I spent a lot of time strengthening my back, but never relaxing the abdomen, due to the inguinal hernia repair and the fear associated with that and with bending my back without protecting it. With each proper back bend I do now, as soon as I finish and release my stomach down, I feel the sphincter and rectum relax more and more.

This has to be the key. It may be related to anxiety and food or whatever else as well, but this is more a matter of proper pelvic alignment and stomach relaxation than anything else, I'm thinking.

I'm supposed to have an MRI today that was ordered to find an abscess or an infection. I'm going to cancel it and call my trusty back P.T. I don't think he's gonna put his finger in my butt but I think a good session with him will get me moving in the right direction. Likely I'll need internal trigger point as well which I'll contact Freedman about.

[webslave]

I wouldn't go back on lithium until you've seen the results of treatment with Freedman.

[johnnyblotter]

I got EXTREMELY lucky and, probably because of the desperation in my voice, actually just saw Freedman TODAY.

All I have to say is THANK YOU. She is absolutely fantastic.

[Caedar]

Any insights on the first visit?

[johnnyblotter]

Absolutely. Let me say first that after six months of absolute torture, this morning I feel 60% better and completely positive that I'm going to be fine. This isn't to say there may not be setbacks, but now I have some tools to deal with this situation.

The biggest thing I learned was the idea of breathing in gently while just slightly contracting the sphincter in, and then while breathing out, relaxing it out as much as possible. In, out, in out, pretty much just doing that the whole time I'm walking around. I had already gotten to the "out" part on my own just due to being in such terrible pain, but because everything was so painful I didn't realize about contracting it in just a bit. This was very important.

If I hadn't had access to this therapy session, what I would have done is make my environment as relaxing as possible, taken a hot bath, and then found a quiet place to do a child's pose (or,maybe just do this in the bath) and gently put my finger into my rectum, telling myself it wasn't a dangerous or scary thing at all, and trying to be calm and let the sphincter relax. I don't think I would have gone in that far and in my first session, she didn't either. Then I would focus on nice, slow in and out breaths with the slight "in" contraction and then the out contraction, pushing the sphincter out (not pushing, but just letting it open).

This would have been pretty difficult for me to do on my own, but if I had known what needed to be done, that's what I would have tried if I didn't have access to someone to help me.

Also, in my case, due to back surgery, hernia surgery, and three urethral stricture surgeries (back years ago), my abdominal muscles had gotten very knotty and hard just because they were acting protectively. So she encouraged me to work on those muscles with a finger, until I can push all the way in (sort of) from under my ribs down to my lower abdominals. Again, this was something I had partially discovered on my own, but with her help I am starting to get the full picture.

And I only had one short session, but I already have achieved a significant amount of relief. Today I'm going to continue to work with the breathing and try to do a little work putting my own finger up there. I know it's not going to be fun, but if I put some effort into relaxing with it, I think it will help.

I've also been advised to try to get a scrip for valium, oral or suppository, to help me with an upcoming trip I have to take to California (6-7 hours on a plane, and in someone else's house for a week, etc.). So, I'm going to have to go work on my primary care doc or uro to help.

Last thing - what I've been through to this point has really opened my eyes to how slow (or profit driven) urologists are to get people into qualified therapy. How many thousands of people with similar problems have had antibiotics shoved at them with no results? It's pretty fucking terrible, in my opinion.

[johnnyblotter]

Well, I did it. Both the parodoxical relaxation CD and yep, got my finger up there and made friends with it.

It wasn't actually that difficult. If part of the answer to this thing is work out the kinks in the levator ani muscles, then I don't have a problem trying to do that...I guess I don't want to overdo it though (??). I'm a beginner at putting my finger in my butt so I'm not sure how aggressive to be with this. I got pretty far and sort of tried to do some massage of the muscles. I guess I should be trying to find trigger points in there. But I'm not really sure. For now I think Freedman suggested the idea was to get it in there, work it around a little and not be afraid of it. Which I was able to do fairly easily. But as for what comes next with this, I'm not sure.

I also got my any accredited quercetin product in the mail, so I think I will start that tonight.

This morning my girlfriend sort of faked like she was going to kick me, just as a joke, and I kind of tensed up and also sort of felt like I lost a slight bit of progress as far as doing the breathing/contracting/releasing. Hard to explain I guess, but just shows how sensitive the whole thing is. After I did the relaxation and finger stuff I feel ok...certainly a whole lot better than yesterday, before I saw Freedman! The first part of that day was a nightmare the likes of which I wouldn't wish on anyone.