jg6075's Case/Rambling Story

[jg6075]

So it sounds like it’s worth aggressively treating then? I’m wondering if the fissure was around from the beginning or started later but kept the neuronal windup rolling along. It feels like playing a game of whack-a-mole sometimes

[webslave]

Yes, try hard to get rid of the fissure.

[jg6075]

I’m working on the fissure but it’s reminding me of something else. It seems like my pelvic pain is acting in tandem with my digestive system and has been for years. Now I’m experiencing a low level upset stomach and burning feeling like reflux, and it is almost completely mirrored by an increase in levator tension and general body aches/fatigue. I have been puzzled by this since they don’t seem connected, but I’m guessing it’s some sort of sensitivity?

The problem is if my stomach gets upset it seemingly undoes weeks of positive progress with no apparent cause. I’ve tried a lot of elimination diets to no avail and I’m experimenting with PEA now. Is there any advice or clues what I should look up for this phenomenon? It’s hard for me to separate the science from pseudoscience when it comes to food sensitivity and digestion. Thanks again

[webslave]

IBS and food intolerances are very common in our community. I myself have had awful problems with it, and it's taken me decades to identify the (surprisingly wide range) of problem foods. Nobody knows why UCPPS and IBS are linked (the link to food intolerances remains unacknowledged). Unfortunately the only way is to learn by experience, and what makes it even more difficult is that you can have delayed reactions, so the problem food or drink could be something you ate 2 or 3 days ago. Keep a food diary and look back. And if any food makes you phlegmy or your nose run or causes a scratchy / raw throat or cause diarrhea or stomach pain within 12 hours or rash on your face or burning gums or difficulty swallowing, look out!

[jg6075]

Gotcha, there’s certainly no shortage of those symptoms from certain foods so there’s a lot of trial and error to do. I’ll try to be more diligent and report back in awhile. I’m coming up on 10 years of these issues soon, so sometimes I’m wondering if I’m missing something obvious or not doing something correctly. But since symptoms are much improved overall I’m trying not to dwell too much and accept progress might just be slow and incremental.

[jg6075]

One update and question. I recently saw a colorectal surgeon regarding my fissure, and since more conservative treatments haven’t worked, he is offering to get rid of it via a sphincterotomy. Generally it sounds like a pretty low risk procedure, but does this have any potential complications for CPPS? The specialist seemed to think the procedure could ultimately help pelvic pain but didn’t guarantee anything. It feels like a gamble since I’m not seeing much definitive information with regards to pelvic floor muscles and this procedure.

[webslave]

No, no risk for UCPPS patients. In fact, the op has the potential to resolve the problem and quieten the pelvic nerves in the long run. If you have a treatment-resistant fissure, surgery is the best route. Of course, do your own due diligence, look at studies, look at the success rates and failure rates before deciding.

[jg6075]

Will do, it’s seeming like a good option and given most of my remaining issues are muscles closest to where the fissure is, I’m cautiously optimistic this could help a lot. I’ll be sure to report back in awhile when/if I opt to do the procedure.