UCPPS - Prostatitis, Interstitial Cystitis Forum

Hey Major! Just wanted to say that your posts in here are very inspiring to me. :D

I just started my battle with this condition but hopefully can make it back to normal or some what normal again.

Great! I have the Power of Now book... haven't read the whole thing. I'll dig it out of the attic.

I like Ellis's ideas, don't care for his delivery. He speaks without punctuation. Thanks for the Byron Katie, and Eckhart Tolle links!

Hey SoraStar, I'm glad if you can get something useful from my experience to help you. You're young, and from what I've seen, younger guys seem to bounce back a little quicker. Still, you have to be patient. I would recommend, above all else, that you start a meditation regimen (guided to start with), and then for the first few months do it before noon, and then before you go to bed. Make it habit. Practice deep-breath sighing throughout the day, especially when you feel stressed.

Also, if you can afford it, do acupuncture and keep doing it at least once a week, as well as massage if possible.

PT will help with TrPs if you have them.

Regardless of what the initial trigger was for your condition, you want to keep you PSN active as the dominant side of the ANS (and NOT the SNS).

Until the pain stays down more, treat yourself well.

After it shifts down and is more of annoyance as opposed to debilitating, then start doing everything you can to keep your mind off it.

Just checking in, it's been a while.

Things are pretty good lately. Still have some nagging pain at front of pelvic floor lateral to the urethra. It's the pudendal nerve, on both sides.
The left side includes testicular pain which I'm pretty sure is a branch of the pudendal nerve; and often still having the post-ejacluation spasm right around the epididymus. Getting really tired of that. Would love to know how to get that to stop for good.

The pain that I have left is mostly being perpetuated by stress. However, I know that over time, as my brain begins to understand that I can handle every day stressors, it will heal and fade, just as it has thus far.

Not on any drugs or supplements right now, except a natural one-a-day vitamin, and a few days on and off vitamin D.

I've been in a new relationship for a couple months now, and even though all relationships have stressful times, I've been doing pretty well.

Glad you're doing well Major. Ever since I've started any accredited quercetin product (been on it for months now) I have not had a single episode of pain during ejaculation. Have you tried it?

Chris

I'm 100% recovered, and have been since early June.
Everything I've posted about helping me has been key in the long journey. However, even though I don't have definitive proof, I think the EMDR treatment I did in May(?) is what torpedoed my CPPS/Pudendal Neuralgia/Anxiety Pain. If you're struggling, you may want to look into it.
Typically EMDR is for PTSD patients. It may be a challenge to get a Psychologist to diagnose you with PTSD if you have not had any clear trauma. I was lucky to have a psychologist who dug deeper to find out that it was possible I had some, though she was still skeptical until we did the treatment itself and saw that I definitely had trauma.

I only have hints of tailbone, testicle pain, or pudendal nerve pain when I have deep stress - the kind where you can't help but worry about your life's future - for extended periods of time. It's NOTHING like it used to be, and I have learned to ignore it, and it goes away.

There are still left over things from my condition - things I compare to scar-like symptoms. I get a weird ache in my left calcaneus bone that I think is from walking strange during an extended period of left-side perineal, and upper leg pain. Occasional tight feeling in the front pelvic floor as if sinews are tense around nerves. Not painful, just feels like something left over. All of this may clear within another year, as this whole condition takes its damn time - that's for sure. And because it takes SO much time to see change, I'm convinced it is centered in the nervous system, including the brain, brain stem, and the dorsal horns, and the entire nerve axons.

I've been spending the past 5 months trying to get my life back on track, taking a little break from school (only to realize that I really just want to finish and get to working in my new field being a PTA, helping people with chronic pain). It's been a horrible sort of limbo for me with a crappy job market (sorry I can't live on $12/hour), helping to take care of my stubborn, ailing father who has given up on life, and I'm also turning 50 in less than a week. This condition stole over 2 years of my life, and that's just the way it goes, but I know now that I can take more pain than anyone I know. I also use all the gifts that beating this condition left me - by showing me just how strong my will is, and what I can accomplish, and how much I can take - which is a LOT more than I ever thought.

I feel lucky, and extremely grateful that I'm recovered. Once in a great while I remember the hell I went through, and for so long, and it keeps me moving forward toward better days. I have 100% of my mind back with no space rented for pain anymore, and it is WONDERFUL!!!

Best wishes to anyone struggling with this horrendous, difficult, misunderstood condition. Don't ever quit on yourself. Keep doing all you can to heal yourself. The best advice I can give is to be open minded to alternative modes. Question doctors, get second opinions. Find a good, empathetic, encouraging pelvic floor PT and make good friends with them.

Cheers!

That’s great Major, congratulations. Still struggling a bit myself. I get testicular pain 1-2 times a week, so my work is not done.

Chris

Chris,
Thanks!
I still get just a TINY bit of testicular pain - left side, but I notice it comes after durations of stress.
It will go away for good. Just think how so many horrible things have resolved over time. This will too. Just keep on!
Brant

Very interesting about the EMDR treatment. I have so much physical trauma in my past going back to age 12 and I just have this constant feeling of not being well...obviously the pelvic pain is the center of that, but it's also more than that, and I don't think it's anxiety or a ton of stress either. It's a type of fatigue and frustration that I've felt even before I had pelvic pain. I wonder if psychotherapy and EMDR might be something to try. Great news about you feeling better!

Try it! You have nothing to lose.

I just wanted to stop in and say hey since it's been many months since I was last here.

I'm in my last semester of PTA (physical therapy assistant) school and have clinicals starting in August. I'm seriously considering pelvic health as my wheelhouse. I worked my butt off to get this far, and the stress has been heavy. BUT... funny thing - NO pelvic pain since I beat it completely in early 2017.

That's right guys - I'm cured. I'll never have it again. How did I beat it?

There were several tools in the toolbox being used over a 2.5 year period. Here's what I consider to be the combination of things that I cured myself with:

1. Pelvic Floor Physical Therapy. This alone probably won't cure you, but it will teach you how to manage your flares, and reduce them over time.
2. Exercise. Walking a couple/few miles almost every day. If you're in the flare phase, just walk - no running. Work out if you want, but don't do leg presses.
3. Zyflamend (a formulation containing 10 different herbs). Take as directed. Takes the edge off of the nagging pain.
4. Meditation - deep breathing, and guided meditation.
5. Lifestyle changes: Let go of things that cause you grief. That can mean people, bad habits, foods, jobs, etc. Value yourself.
6. Eat healthier. Always a good thing.
7. Convince your mind that the pain can't stop you (after you've gotten through the constant flare phase).
8. Accept it's not bacteria and that you don't need to keep taking antibiotics.
9. Do things you love that mean a lot to you. It helps take your mind off the pain, and fuels the purpose and self love.
10. EMDR*. If you can find psychologist trained in this, DO IT. It can't hurt. After my EMDR session I had the biggest drop in pain that I'd ever had - pretty much down to ZERO.
11. Bonus: Love yourself, give yourself a break. Quit beating yourself up with guilt. Do the right things going forward. If you cheated on a girlfriend (which I did not, but I see many of you did and started having pain) forgive yourself and move on, and don't do it again.

I'll check in again soon!
Best wishes, and remember it gets better.

Brant

* Eye movement desensitization and reprocessing is a form of psychotherapy in which the person being treated is asked to recall distressing images; the therapist then directs the person in one type of bilateral sensory input, such as side-to-side eye movements or hand tapping