Hello and looking for additional help

[HCR123]

Hi everyone,
I've been reading this forum for about 3-4 months since I started suspecting that my epididymitis was actually prostatitis or CPPS. I had an early bout in January that sent me to the ER but my urologist said it will go away. And it did! But it came roaring back in April when I doubled over in pain in my lower back after walking home from the gym. I've always had an issue with my SI joint but never did anything about it. I kept going to the gym thinking it would go away, but never did. Instead I started getting the perineal pain and full rectum. That prompted me to get the antibiotic Cipro, but I couldn't handle it. Instead I went with Bactrim for 30 days and nada. The urologist said, it will fizzle out. That's when I knew to cut bait with this guy.

I then found Dr Pontari through this site and went to visit him in Philly. He confirmed a lot for me. My prostate was 100% A-OK. My thyroid and testosterone are fine. And negative on the bacterial cultures again. He gave me a prescription for 4mg of Tinazidine to relax my pelvic muscles but haven't found it doing anything yet in 3 weeks. My next move was to find a PT that might know something about pelvic exams and CPPS. I got lucky and found a great PT that studied under Wise for a few years and treats men and women. She's no nonsense and has given me tips (sitting on a tennis ball for perineal pain, making my own foam seat for my car) and totally advocates homeopathy if possible. I'm only 3 visits in and my internal trigger point therapy has focused on my sphincter so far. I couldn't believe how damn tense it was and hurt! It's pretty agonizing and have the classic pain after bowel movement. What I did mention to her and found on my own was how I constantly tighten up my ass/glutes All the time. She told me that identifying that was half the battle and to keep practising dropping the floor. It's not easy, I'm dropping it 3-4x's an hour. I can't believe how long I've been doing this over the course of my life!

So here I am taking 1000mg of quercetin, 500mg of turmeric, 50mg of 5HTP and .25-.5mg of Klonopin when I need it. I've yet to ejaculate or have sex since June for fear of getting a flare, but I'm determined to try and just relax. I have flares after PT anyway right? The pain moves around after PT. It can start in my anus and then migrate to the perineal, and back to testicle. I notice that the current flare up didn't last long in terms of the golf ball feeling, but I got these electric type shocks along nerve paths to and from my anus and scrotum. Anyone else get these?

I want to believe these are all good signs that I'm resetting my pain threshold. That I'm on the right path based on the many stories I've read here. My perusing Headache in the Pelvis told me to expect many of these things. I think because of my anxiety and past bouts of depression, I was susceptible to this. I was on Lexapro for 4 years after losing my job and got off it in 2015. I felt great, then I had a family incident that stressed me out for two years. I took klonopin, but I was constantly worried. I think that triggered the CPPS among with the back pain.

Today I do circuit training, lost 25lbs the last few months, and watch what I eat as best I can. Not gluten free yet but trying to. Vodka sometimes but no more beer. Just changing my lifestyle as I go on this journey. And of course I'm trying to meditate every day. It's tough, but I like doing full body scans. I'll be taking an MSBR course later this year to learn how to get better at being mindful. I know that 80% of my battle is in my head. Ignoring the pain. Not anticipating what may come next. If things will get worse. When will I get better? Will I ever be the same? It's not easy but I'm determined to do everything I can. I have no choice.

Thanks for this forum and if anyone has any tips on external trigger points, or homeopathic stuff to relieve burning in anus or other meditation books, I'm all ears. I like Kabat Zinn and his book Full Catastrophe Living. I'd like to avoid getting on a mood stabilizer or SSRI again but I think it will depend on how quickly I can get relief from symptoms or get better at meditation.
~H

[webslave]

I got these electric type shocks along nerve paths to and from my anus and scrotum. Anyone else get these?

Fasciculations.

You're doing well.

[HCR123]

Thanks for putting a name to what I was feeling. That helps. I appreciate the positivity as well. I feel I'm on the right path but sometimes hearing it from others is nice.

[WS1234]

If you happen to have an interest in Poker or gambling, read "Painless Poker". Its a great book about meditation, written for the common man (not overly fluffy). Has made a huge impact on my practice.

[HCR123]

Thanks WS, I actually looked at the book from your post about it. I like watching the WSOP and have played but not on a regular basis. I was hoping it was available via audible but I may give it a shot on kindle. I think the hardest part for me is putting the time aside and practicing every day... Trying to get from 15 to 45 mins a day. The fact that meditation has been proven to help bring down pain thresholds should be reason enough to practice! Takes time and patience which I've never felt I had. Well now I have no choice. TX!

[HCR123]

Web slave, today I started feeling a bit of pain/sensation coming from right kidney area in am. Seemed to think maybe it's just referral pain cuz of pain in groin and urethra. I'm feeling it a bit more this evening. Any chance it's just referral from CPPS, or should I get checked out for uti or stones? I haven't had sex to get any uti and I've never had stones. The groin pain has been persistent for a week, along with some abdominal pain when stretching. Today my PT did some work on the Levator Ani for first time. Tx

[webslave]

Abdominal pain can be due to many reasons, not typically associated with CPPS. UTI no, stones unlikely (pain is usually in flank for stones). Could be colon if pain is in the back, but many causes possible. If it gets worse or persists much longer, see your doctor.

[HCR123]

So an update:

1. I know this is a long term battle so I'm under no illusions that I'm going to get better 100% any time soon, but I've made progress.
2. Pain when sitting hasn't really occurred much if at all in the past 2 weeks.
3. Perineal pain has generally subsided. I used to get it a lot after bowel movements but that's gone. I've also kept up doing sumo stretches and others my PT recommended.
4. Testicle pain mainly on right one is still there but not as intense. It seems to ebb. I do have pain in loins after an internal PT session and it feels connected to soreness in abdomen. I'm back on quercetin for the past week after cycling off a week. I'll cycle every 3 weeks as recommended on this site. Other than the levator ani, not sure which other stretches might help here.
5. Pain in tip of penis still there. I'm trying to treat this as an irritation more than pain. Trying to change my mind set on this since it's been 3 weeks. I'm going continued stretching of abdominals and looking for trigger points in area will help. PT recommended pushing muscle down toward groin area but not to push down on bladder or the nerve under my navel. I have gabapentin available, but I haven't pulled trigger on taking it yet. I don't want to rely on it but if the pain continues or kicks up in intensity, I may need to. There have been a couple days where the pain is gone but it appears after sitting for a little while. Almost like the pressure on the bladder area triggers it.
6. General soreness and pain in external muscles continue. Some from working out, while others from I think is bursitis in hips. Continue rolling and stretching this area. I know this is all connected to weak pelvic muscles.
7. Meditation is daily in morning and try mindfulness throughout the day. Listening to Get out of Your Mind and into Your Life. Trying to change my thought process and behavior.
8. Diet has been pretty clean and healthy. Vodka on some weekends has been tough to break free from. But no beer and trying to get to 50% gluten free.
9. Added Omega oil and probiotics to my supplements. I have 200mg of chelated magnesium. Is this ok to take in evenings. Trying to add stuff to help with inflammation.
10. Sex! Ah how could I forget. Old flame came around and I tried to relax as much as possible. Afterwards I felt a little throbbing in my prostate but I tried not to freak out. Didn't try going again for fear of pushing it. Half hour went by and nothing. I let 24 hour to by and still nothing. Pain in testicle didn't intensity either. This helped me psychologically for sure. I feel comfortable enough know to know I could possibly date if opportunity arises.

So I see this all as progress. I know there can also be steps back. The winter and cold loom ahead. There can be stressful situations in unaware of in future. But for now I feel almost normal if it wasn't for the sensation in tip of penis. Again if any suggestions for this, I'm all ears. I'm hoping time just helps heal this for me.

Thanks for reading and support through this forum.

[webslave]

This is progress. Baby steps.

[HCR123]

Thanks webslave. That was good. Lol. What About Bob? Funny flick.
Yea I think the initial thought is I'll get back to normal quickly, and reality is it's a marathon, not a sprint. I need to take advantage of the time and change my behavior and habits for the long term so I'm better prepared for stressful moments in life.

[HCR123]

Update: so two weeks ago I thought I was finally turning the corner. I went to a PT session and the therapist pressed on an area on the levator ani that seemed to replicate the penis tip sensation. That seemed to clear it for about a week, but then it returned. Feels like it returned after doing some sit ups while exercising. I don't want to stop exercising and gain weight back after all the hard work. It can be disheartening when that happens. I have to look at the bright side that the pain after urinating is not as pronounced. It's more irritation and annoyance because it's cold to touch and slight pain. Overall I'm much better than I was a month or two ago. I can have sex and masturbate with no issues after ejaculation. Anyway, hearing from others here that have been on for very long and overcoming it means that it does get better, just have to be patient and understanding with yourself.
Any advice on treating trigger points in abdomen? I feel that's what may be setting this off regularly.

[HCR123]

Update:
I've been chiming in now and then on various posts looking for answers about spasms but here is where I stand now. Would appreciate any advice to get me through some dark times.

1. Been seeing my PT for about 5 months and I still have a bunch of trigger points in the puborectlis. She worked on those today.
2. I've been dating someone who understands everything I'm going through including the spasms and my recent bout of tinnitus. I'd like to have sex more regularly but this spasm lasts 5-7 days. It usually starts a couple days after ejaculation. But she's very understanding.
3. I am titrating up on zoloft, as I need an AD to cope at the moment. Too much emotionally for me. By next week I'll be at 50mg.
4. I know my job has been stressful, but they understand what I'm currently going through and are willing to let me work from home. I still feel some stress from it and try to reframe it. I'm still there cuz I need the health insurance.
5. Trying to meditate in the morning and evening using Jon Kabat Zinn CDs, Dr Wise relaxation CD and even Sam Harris.
6. I know the original source of my stress was a situation my brother got into two years ago. He got arrested and almost went to federal prison. Instead he got probation. I had just gotten off taking Lexapro for 4 years. I lived every anxious and stressful moment of those two years even though he told me not to worry. I couldn't stop the train! At one point i thought something terrible had happened to him and I catastrophized and had close to a nervous break down thinking he was gone.
7. I'm going to start seeing a CBT to help me cope with the pain and help me stop catastrophizing.
8. Finally, I need help with breaking flares. I have read Valium and Tramadol as two that can help numb the pain. Is there anything else that also won't affect the zoloft I'm taking. I know there's kratom but I'm really unfamiliar with the strains and if it might interact with the zoloft. I'll do my hot baths but it just isn't enough with the spasm.

I know I'm thinking about the pain too much when I should be distracting myself but I find it so difficult. A little relief would help me get off my couch and heating pad.

I really appreciate anyone here taking the time to read this and comment. Really need some support.
Thanks
Hugo

[HCR123]

I just find it weird that this summer I didn't have any spasms when ejaculating. Then all of a sudden it started a few months ago. It took me a while to realize why I got them. I'm afraid that with my anxiety, I'll start to get recurring spasms without ejaculating (yes that's catastrophizing). Anyway, I'm hoping with time and meditation my nervous system calms down and the PT work helps work things out physically in my pelvis.
I need to stop internalizing worry and things I can't control.

[webslave]

I think we can only provide limited help to you via this forum because your psychological issues are holding you back and those can only be fixed with intensive therapy. You need to go ahead with the CBT as planned.

[HCR123]

Yes. I have an appointment tomorrow.

I understand you can only help so much on the forum and no one here's a doctor. it falls on me to do the heavy lifting. More than anything from my post I was looking to try and break a flare. Wasn't sure how much Valium or Tramadol you need to take. I've read numerous posts that it helps break the loop back to the brain.