jg6075's Case/Rambling Story

[jg6075]

Hi all, just following up with a question. I did try avoiding gluten for a period of 2-3 months with no luck. I've made some progress otherwise, but I'm stuck with a few things. The most prominent issue is the pain is mostly concentrated in the area just slightly inside the anus. It seems like my internal work further in has relaxed those muscles, but the area near the opening is something I can't figure out how to effectively calm or target. I'd say it accounts for most of my remaining symptoms and can still get intense at times. Is this a common issue? I try to relax, not tense, focus on my pelvic PT stretches, do therawand internal work 3x a week, etc. but I still can't get this area to chill out in particular. Any ideas?

On a similar note, I'm noticing a link between my digestive system and flareups. It seems like they sort of feed off of each other (no pun intended!). I notice when I'm flared up that I'm also bogged down by abdominal pain and fatigue. Similarly, it seems like my pain is much worse just prior to a bowel movement, and abates shortly thereafter. I try to make sure my digestive system isn't too bogged down, but it still seems to be happening. It's getting discouraging having tried so many different treatments over the years, but I'm trying not to let it get to me too much. Just wondering if these are familiar issues, given the link between IBS/CFS and CPPS. Thanks!

[webslave]

Rule out some issues with a colonoscopy, sigmoidoscopy or anoscope, if you can afford it. Fissures, hemorrhoids etc

Otherwise it could be anorectal spasm, so try sitting on a heating pad while you work. Some people try anal dilation using dilators to overcome spasm (technique described here https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5479997/ )

Could also be an element of proctalgia fugax, so look into that.

The nerves enervating the bowel and genitals talk to each other ("cross-talk"), so that's why symptoms flare concurrently.

[jg6075]

Rule out some issues with a colonoscopy, sigmoidoscopy or anoscope, if you can afford it. Fissures, hemorrhoids etc

Thank you! I'm on a much better health insurance plan now so I'll take a look and rule out any related issues.

[jg6075]

So, doing a quick update since I haven't in awhile. It seems like there's been some incremental but very slow progress in the past 6 months, and each gain is a hard fought win.

The first note is that my PT has noted that my internal muscles seem largely improved and almost back to 'normal', but I'm still feeling a similar set of symptoms that I've always had. The difference now is that the tightness is mostly limited to the levator ani about an inch or two in, as well as muscles towards the coccyx region. I'm confused how the symptoms are largely the same, but to the PT the muscles look improved. Is there a sort of 'mental lag' between the reality of improvement and the brain being used to pain there for so long?

Plan wise, I've been paying more attention to stress, and more specifically its effect on GI issues. I am also trying some elimination diets to see if there are any triggers that could be eliminated. After some reading here, I'm trying Quercetin, CoQ10, and buffered vitamin C to focus on any inflammation or irritation that could be arising on a day to day basis. Similarly, I've been focusing on watching how I hold my muscles and constantly trying to let go of gripping or tension, which I was finding myself doing all hours of the day, including right before sleeping.

I've also been focusing extensively on strengthening my core and posture, as I suspect slouching, sitting, and poor workplace ergonomics might be a contributing factor. I have a bit of numbness and tingling in my legs, feet, and lower back but it's seeming to me like that's a separate issue that might feed into the overall feeling of pain. So I'm core/back stretches in addition to the standard internal work and pelvic stretches I've been doing all along.

I know that's a lot, but is that a good plan of attack? It seems like there's a bunch of small things I need to address individually, and those add up to the bigger picture of remaining symptoms. I'm always worried I'm not "doing enough", or conversely that I'm overthinking and the solutions might be simpler than I think. Overall, I'd say I have improved significantly since starting this thread, but sometimes lack of progress and occasional setbacks can get really discouraging when it feels like I've been doing so many things right for so long.

[webslave]

Dry saunas (can you arrange them?) and/or hot long baths can help with the constant pelvic holding tension. And yes, the brain is involved as does take some time to stop 'feeling pain' where there is none (UCPPS is linked to brain changes). Keep going, be patient.

[jg6075]

I'm just doing an update for something that may or not be relevant. I had an MRI of my lower back a couple of months ago, and the neurologist said my back mostly looked healthy. However, I received a second opinion from an orthopedic, who found something else on the MRI. There is a fat deposit (likely genetic) in my lower spine which is bumping up on something and possibly causing spinal stenosis and nerve compression. He thought that would contribute to the leg weakness, back, and foot pain, but didn't really say much pelvic wise. He kept mentioning how this affects the sacrum, and I have noticed most of my remaining pain is internally in the 10-2 o'clock position near the tailbone internally. The only ways to deal with this, however, are injections or surgery, which is scary. :/

The condition is called Epidural Lipomatosis, and it's very rare. I'm hesitant to think this is causing CPPS issues after having my hopes dashed so many times, but this is also the first thing of substance to show up in my many scans. I'll at least hear out the orthopedic as to next steps.

Otherwise, pain hasn't really gotten much worse, but I'm still massively plateaued. I've realized I haven't had a week-long true flareup in over 3 years, and mini flareups are mostly predictably caused by actions involving lots of sitting or exertion. So I'm feeling hopeful at the gradual progress.

Per recommendation, I also did a colonoscopy and endoscopy, which yielded nothing. That's good to know, at least. I'd have to assume I have IBS at this point, but I'm glad it's nothing more severe.

Anyway, just thought I'd update since this is seems like a pretty unique finding.

[jg6075]

Just following up on the above query. I generally am doing well at times, but progress has been stalled for awhile. The back issue is complicating things, because it's making me wonder if I've been misattributing certain symptoms to CPPS.

I definitely have the classic CPPS symptoms, but I've been dealing with persistent leg fatigue, difficulty with stairs/hills, and burning in feet. My orthopedic says I have a form of stenosis caused by a fat deposit in my lower back throwing things off, creating a bone spur, and blocking off the base of my spine. No disc issues or anything like that.

The doctors aren't attributing any CPPS to this, but it is all based in the same area so I'm having a hard time parsing all of this. I've seen the thread here that CPPS can be caused by spinal issues. To make things worse, the only treatment for the back issue is surgery to remove the deposit. I'm terrified to do any surgery because it could have complications in an already crazy area.

I guess I'm wondering how to make sense of this. The back issue is called epidural lipomatosis, pretty rare, but my doctor is adamant that's the case. I'm for sure better than I was 8-9 years ago, but these lingering issues are still draining and confusing.

[European]

I would be very very careful regarding any surgical intervention into pelvic/sacral region. Did you try some diagnostic blocks? Like ganglion impair,superior hypogastric plexus etc...

[canada604]

Try doing this exercise daily. It's just 12 minutes. https://www.youtube.com/watch?v=4BOTvaRaDjI

I started it a week ago and it started to help with my chronic back pain (almost 12 years now) and using it as part of M-F CPPS exercise routine (along with other exercises/stretches).

[webslave]

For something as serious as a fat tumor inside the spinal column, I'd get a second opinion from a top orthopedic surgeon. Then take their advice regarding removal. We cannot advise you, it's way outside my remit. Anything putting pressure on the spine can cause a lot of symptoms, and may be the trigger/ultimate cause for the UCPPS symptoms you have.

[jg6075]

Thank you for response. To be clear, the leg fatigue and back issues are not a pelvic issue? I got into the habit of attributing a lot of general malaise to CPPS, but it's hard when there's so many health issues happening at once.

I have done a fair bit of stretches and will try to follow the recommended video. I have not done any other spinal/back treatments other than a couple of injections as a diagnostic procedure. The first did help with the leg fatigue and back issues.

I'll look into orthopedics further, and from what I can tell it's a very rare occurrence that a number of specialists didn't see for years. If it is relevant to CPPS I will update this thread, otherwise I will keep on focusing on stress and other bad habits.

[webslave]

Correct, I would say that the leg fatigue and back issues are not connected to your pelvic symptoms, and are far more likely a result of spinal stenosis.

[jg6075]

So a little bit of an update... after some additional scans and trips to specialists, the back issue seems to be a false alarm. The consensus was that there is simply a mildly bulging disc around L5 and it's probably only contributing to minor non-CPPS symptoms. No stenosis, no nerve issues, nothing to worry about. I was a bit relieved and confused at the same time. I still have some questions but I don't think they're relevant to this forum, and I can live with that diagnosis for now.

The same day I got the results on my back, I had an anoscope done by a colorectal specialist. He found an anal fissure in pretty much the exact area that has been giving me trouble on and off for years and prescribed some Diltiazem gel to apply topically to the area. He also claimed that sometimes fissures can contribute to CPPS type symptoms via muscle spasms, which I still don't fully understand, but I can take him at his word on that one. I'm afraid that I'm falling into the "final piece of the puzzle" trap again, where I'm putting too much hope into solving the fissure and moving past my longtime plateau of progress.

I'm just increasingly confused in general. I do get some CPPS symptoms, but my pain flareup lately has been dominated almost exclusively by burning/discomfort in the anus -- I'm wondering if my issues are more fissure than CPPS at this moment. When I last checked in with my PT last year, she noted that my internal muscles were drastically improved and almost tension free, a massive improvement over when I had first started.

So while this all sounds positive, I'm feeling discouraged because my pain has been at a sustained higher level for a long time, and a lot of my coping mechanisms/stretches aren't working as well. To be this far into the process and have such a backslide is demoralizing in some ways. The Diltiazem seems to burn or make pain worse sometimes. My biggest confusion is I've dealt with the specific pain of the fissure's location since the very beginning over 9 years ago... I didn't think fissures could stick around that long. Some of this may be venting, but does any of this make sense to anyone? I've really been doing my due diligence and self improvement over the years, so it's just been frustrating to be stuck on a roadblock whose solution is not clear (if any).

[jg6075]

Posting a progress report on my end since it’s been half a year

Upon restarting Pelvic PT for the first time in a couple years, most of my “deeper” internal tissues are almost fully healed. A drastic improvement from 5 years ago. However, I’m still getting some tightness in the 10-2 o’clock region of the rectum, not far in at all. Not coincidentally I feel like this is the exact area I habitually tense.

In the meantime, I was formally diagnosed with an anal fissure and the doctor told me sometimes these can contribute to pelvic spasms. Dunno if there’s any truth to that? Either way, IBS-D and the fissure can contribute greatly to pelvic pain, so I’m focusing on those. One thing that helped me IMMENSELY in this regard is setting up a bidet.

My aforementioned lower back issues remain a mystery, dunno if they’re even related to CPPS. However, I’ve been able to do a gym routine on machines for the first time in awhile.

Anyway, things are at a crossroads. This issue isn’t debilitating anymore but primarily the sexual issues remain with regards to post ejaculatory pain and some numbness remain. I’m coming up on 10 years of having CPPS but all improvement feels very slow. I really try not to fixate on this or let it define me. But CPPS combined with secondary issues can still grind me down systematically over time still. So…a semi positive post? Trying to think what to do next since there’s so many potential culprits at play still.

[webslave]

Any source of pain and discomfort in the pelvis can start neuronal windup. The anal fissure is prime example.