CPPS story

[Ksdog7]

Hello, I'll try to be brief and to the point. Thanks for taking the time to read this. I am a 35-year-old male:

It all started ~ 2010 after having sex w/ my ex. I developed unspecific urethritis that lasted 7 days. Urine/blood cultures came back negative for STDs as a urethral swab. It really scared me enough to go the the ER as it would any young male in his late twenties.

Over the next few years, I had intermittent unilateral testicular pain that came and went. Went to Uro at the VA medical center, but they couldn't find anything wrong - was prescribed pain killers.

This is where things really heat up. In 2013, at the beginning of my internship (ironically at the VA medical center) I developed a burning pain in the urethra during the tail end of urinating in a stall. This was when a constellation of symptoms came crashing down on me thereafter. Here is a list of what I experienced for the next 9 months:

• increased urge/frequency of urination
• burning sensation in tip of penis
• lower back pain
• rectal fullness (intermittently)
• heightened anxiety and depression
• testicular pain (intermittently)

This lasted for 9 months - well past my internship and into my clinical fellowship at the VA medical center. Here is the care I received during this time:

• multiple urologist appointments
• multiple digital rectal examinations
• urodynamic testing (came back as normal)
• multiple rounds of antibiotics (different types and for long periods)
• chiropractor adjustments (none which helped and cost me a lot of money)
• acupuncture (did not help)

Here are the pain management strategies I employed to reduce pain (not sure all of them worked):

• heat to the perineum
• sitting on the toilet after work for hours
• stretching pelvic muscles frequently
• supplements like any accredited quercetin product and turmeric compounds

At the end of the nine months, this problem faded out gradually and then completely. I figured my "prostate" problems finally went away on their own. So I as basically symptom free by the middle/summer of 2014.

Lets fast forward to now. I moved from my hometown to a new state, and I have been working full time for about 4 years at various SNFs (skilled nursing facilities). My job is pretty high stress. I would often smoke marijuana for 6 month increments and was smoking cigarettes as well (have been smoking cigarettes long before these symptoms ever came on the scene). I have quit smoking cigarettes and using nicotine in any form 3 separate times while I have been living here. I have exercise a lot and have a extensive hx of exercise (I was infantry in the Marine Corps for 6 years). My symptoms would mildly flair up from time to time if I lifted very heavy w/ squats or ran distances longer than 6 miles at a time. Nothing significant though.

This new flare up comes at the heel of quitting nicotine - again - and about 1 month post quit. I was very stressed at work and I recently decided to quit marijuana as well so my system - to say the least - was pretty shocked. I ate way more junk food than usual, quit exercising , and masturbated more to relieve the stress. On 8/7/18, I felt the same symptoms come back in full force and it brought me to my knees. Except this time, the symptoms are different:

• rectal fullness and feelings of incomplete evacuation
• extreme difficulties passing gas
• feelings of genital sensitivity and being aroused but with no erection (what I found to be called PGAD) - kind of an electrical/fullness feeling in my genitals.
• hard/flaccid penis
• slight burning in urethra
• burning sensation in coccyx area

I have been using turmeric compound pills, sitz baths, heating pads on perineum, and pelvic stretching to alleviate the pain. It's been over three weeks and the symptoms keeps changing in intensity. The relief efforts I've employed seem to minimally help. I've been to the MD and they sent me to physical therapy to relax the pelvic floor muscles. My therapist is very knowledgeable and is now seeing my x1/week.

My questions are:

1. Do you think this issue will fizzle off like it has before?
2. Should I try medications like Lyrica and antidepressants (I'm deathly afraid of them as i'm currently taking .5 mg of clonazepam -been taking it for 10 years - and have a hard time coming off psych drugs)?
3. Should I insist on a nerve block before getting on medications?
4. Does anyone have success stories that are similar to mine and would like to share their "secret?"

I'm very distressed right now...can't go into work because it's too difficult to deal with the pain. I'm not sure I'll be able to go back to work unless I can alleviate this pain or the anxiety/depression. My boss is very understanding, but I don't know for how long. I'm at the end of my rope here.

[webslave]

1. Yes. Flares with squats are indicative of neuromuscular CPPS. That's reassuring. Cannabis smoking can be a trigger for some men so be careful. Use meditation to cope with stress, not masturbation (which involves tensing muscles) or junk food.
2. Only use antidepressants if you have been diagnosed with depression. Don't take benzos long term; they increase your risk of dementia.
3. No, nerve blocks are the wrong way to go with CPPS, IMO
4. Read the forum, lots of similar cases and strategies

[Ksdog7]

Thanks for the response webslave.

It's just discouraging as I thought I was over it. But now I have to work through it. I plan on bringing donut cushion to work and a heat pad. Any other suggestions re: coping mechanisms anyone has found to be effective at work? Also, the urethral burning has abated and now the main symptom is tenesmus (feeling like I haven't had a complete bowel movement). The feeling waxes and wanes throughout the day. My stools are completely normal however, and I eat very healthy. Anyone else have this issue? Thanks.

[webslave]

Sounds like IBS, a common comorbid condition with CPPS

[Ksdog7]

Well, here's an update.

I've been back to work for 1 week and I think it's probably better than staying at home and ruminating. I can definitely feel an uptick in pain when I get acutely stressed, so I've been actively addressing this w/ relaxation, prayer, meditation, hot baths, etc. I think I'm still adjusting from quitting nicotine (will be 2 months this Friday) and marijuana. Those substances can affect neurotransmitter levels. Still having high anxiety but it's more in spurts than consistent - which is good. I've been masturbating every other day and it definitely causes mini flares. Perhaps I'll try the method webslave proposed. It's really hard not to masturbate after a 2 day period for me (I'm not sure why). There are minimal feelings of burning in my urethra, but I get hard/flaccid frequently throughout the day.

The tenesmus is still there but waxes and wanes. My diet is very clean (mainly potatoes, sardines, vegetables, oatmeal). I go in to the hospital for a sigmoidoscopy this Monday - it'd be nice if they found an internal hemorrhoid. At least it would explain the tenesmus. I absolutely know that my pelvic area is flared up though. I just need to ride it out without going insane in the process. Thanks for letting me vent.

[Ksdog7]

Just got done with the sigmoidoscopy and i'm in a huge flare. Number one symptom is extreme tenesmus. It seems the enema they made me take triggered it big time. I'm laying here in bed freaking out because this feeling is pretty intense...it's like how you feel when you have extreme diarrhea from food poisoning (except there seems to be no relenting). Anyone have any advice on this? Thanks.

[webslave]

Breathe in such a way that your stomach and not your chest expands. Stomach breathing it's called. It works amazingly well to stop abdominal pain.

[rjdemarx]

KS - you may want to try some CBD oil which can help calm your system. Also, try supplementing with magnesium which seems to relax muscles and is a good nerve tonic. I second the use of belly breathing. You want to feel your anus bulge just a little bit. This will relax the pelvic floor.

[Ksdog7]

Thanks rj. I'm just laying in bed and it feels like my anus region is pulsating, on fire, and needing to defecate - although clearly there isn't anything to evacuate at this time.

Webslave - i'll try the stomach breathing. Anything to take this pain and tenesmus away.

[Ksdog7]

Do you think gabapentin could help with this?

[webslave]

If you're having a crisis, try opioids or a benzodiazepine

[Ksdog7]

The pain has substantially lessened but it was quite traumatic. Thanks for the input and support. Will update more soon.

[Ksdog7]

Hello everyone,

It seems like the sigmoidoscopy set me back quite a bit with a flare. Mostly rectal fullness and the incomplete evacuation feeling which comes and goes in intensity as well as feelings of pressure in the genitals. The last time I had CPPS - years back - it was focused on the penis tip (cold, burning sensation) and not in the rectum. This time, I really don't have much burning in the penis tip at all. It makes me wonder if this is CPPS at all. But it most definitely is muscle and nerve related. One morning, I had pencil thin poop - indicative of very tight rectal muscles. My anxiety and depression are still high (I know this because my appetite is way down and I've lost weight), but i'm managing. It's been two months now since I've had nicotine and marijuana. I'm hoping that my body will readjust the neurotransmitters back to normal (last time I quit smoking it took around 4-6 months to feel "normal"). Perhaps when my body achieves homeostasis w/ neurotransmitters, I'll be able to heal quicker. Last time I quit smoking, I developed an ulcer and reflux for about 2 months before it went away.

If anyone has of had symptoms similar to this and can lend some encouragement or advice, I'd really appreciate it.

[Ksdog7]

Update:

I started getting full body massage work x1/week and it seems to be helping. My massage therapist says my psoas is very tender and tight. Also, it's about the 1 1/2 month mark since I've been taking PEA (palmitoylethanolamide) which is an endogenous active lipid that works directly on peripheral and central sensitization via glia cells and mast cells (both central and peripheral) as well as other biological pain pathways. There is a lot of research on it. Here's one article - however weak since it's only case studies - that addresses it superficially: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/ I do believe it is helping my pain.

I also take 1) turmeric, ginger, black piperine compound; 2) quercetin and bromelain compound; 3) Omega 3's; and 4) magnesium glycinate at night.

I'm taking short walks in the park, meditating, spending 4-6 hours at work, stretching and using a foam roller and tennis ball to work out trigger points. Also taking hot baths, and I often use a sock full of rice as a heater (microwave it for 1-2 minutes) to place on my perineum - this is very relaxing. Also seeing a PT for internal work x1/week. My anxiety is settling down a little - which is good. Hopefully I'm on the up and up.

Currently my symptoms are as follows:

Tenesmus (rectal tightness/golf ball feeling): ranging from 3/10 to 6/10 on the pain/discomfort scale
Genital fullness (almost like the feeling you get before an erection/or perhaps pressure against prostate): ranging from 2/10 - 8/10 on the pain discomfort scale

These symptoms rarely happen at the same time. They tend to play tag.

I know that setbacks and flares happen, so I'm prepared for that. I just want to catalogue my story so others may comment and help. Also, so others may follow along and perhaps learn a few things from my experience.

My update posts will be similar in format to this in the future for easy readability and comparison.

Thanks.

[webslave]

You are doing a lot of the right things. Keep going and you should gradually improve as per "the graph"