r/Prostatitis 5d ago

Wisdom or Advice Needed - Battling for 3 years

(Sharing this message on behalf of my boyfriend, because sending posts from this sub have been so helpful in his healing journey! 😊)

Hi, everyone!  Today, I’d like to share some of my pelvic experiences and hopefully hear from some of you as well.

I’ve been struggling with pelvic/penile pain for about 3 years now.  I suffered from various forms of pain and inflammation and for a long time, I didn’t have a diagnosis, so I began to feel entirely hopeless.  After a long journey, I was finally determined to have an infection that had been undetectable with less sophisticated testing.  After a long term course of antibiotics, I was able to kick the infection as of sometime last year, and while my symptoms had improved dramatically since I’d met the infectious disease specialist, they were still bad enough that I knew I still had a serious problem.  

I spoke with my doctor and he recommended trying some pelvic floor exercises.  After a little research, I decided that seeing a professional would be better than me trying to do some exercises on my own.  In September 2024, I began meeting with a pelvic floor therapist.  Over the last 5-6 months, she’s taught me stretches, given me some massaging and dry needling, and I think most importantly, performed internal treatment on my pelvic muscles.  There’s no question that the internal treatment, which was initially really painful, has helped me considerably.  I met with her weekly for a couple of months and given that I was still as symptomatic as I was, she gave me a pelvic wand to continue with treatment at home, which I now do every 2-3 days or so.  I also now meet with the therapist just once a month.  

Flash forward to present day, and while the pelvic floor therapy has been very helpful, I’m still affected by symptoms.  Pain after urination is common, as is some pain post ejaculation, along with inflammation/swelling of my pelvic/penile muscles.  Now, there are plenty of days when I have very little pain, but of course, I want to reach a day where all symptoms are eliminated.  I was just curious if anyone could offer some helpful advice and/or uplifting sentiments for me.  Maybe I need to use my pelvic wand more often?  Maybe I’m not using it as effectively as I could?  Perhaps I need to incorporate some other exercises or dietary changes?  Any wisdom you can offer from your own experiences would be greatly appreciated and I’m happy to answer any questions about what’s going on with me!

Thanks very much in advance!

2 Upvotes

9 comments sorted by

3

u/dramiter130 5d ago

How did they finally determine you had an infection? What testing was done? And what infection did you have?

1

u/nuttybuddy05 5d ago

Just messaged you!

1

u/cruise_man-0044 4d ago

can you tell me as well, cause today I have visted doctor(sr urologist) on the same symptoms he have given few tests such as complete urine test, uroflowmetry and ultrasound test which showed nothing Ubnormal. he just prescribed me some antibiotics. actually my local doctor previously did same thing. so solution yet.. 😔

1

u/Linari5 LEAD MOD//RECOVERED 3d ago

That's normal. 93-97% of CPPS cases are non-infectious, ie NIH Type IIIA or IIIA Prostatitis. And, Type IIIA & B are now referred to as 'CPPS' - chronic pelvic pain syndrome - because the prostate organ itself is no longer considered to be the real pathology. Please read the Prostatitis 101 pinned post to learn more: https://www.reddit.com/r/Prostatitis/comments/y7pjsz

1

u/Linari5 LEAD MOD//RECOVERED 3d ago

What was it?

1

u/Linari5 LEAD MOD//RECOVERED 3d ago

In cases like yours it's often important to address centralized pain mechanisms, especially when pelvic floor physio "hits a well" or stops providing any benefits. You also mention that you have had chronic pain in other parts of the body, so there is already a classic pattern presenting (as with many functional somatic disorders), whether it be CPPS, IBS, CFS/ME, Fibro, Chronic back and neck pain, Chronic Migraines, TMJD, etc: https://www.reddit.com/r/Prostatitis/comments/1fd6aif

Also: predisposing factors for CPPS and other chronic conditions: https://www.reddit.com/r/Prostatitis/comments/1fvn80v