My Story (What I have tried and what has helped)

[Nitz42]

Hi everyone,

Happy to have joined this forum. I wanted to share my story in the hopes that it will contribute positively to the discourse and help someone. I’ve been dealing with chronic pelvic pain since 2018. Here is an overview of my symptoms:


Burning sensation while urinating
Stinging / burning sensation while ejaculating
Swollen meatus (occurs post-masturbation - it really swells up, but then goes back to 'normal' after 20-30 min)
Painful urination (occurs (post-masturbation)
Redness, irritation on the skin of the glans
Loss of sensation / sensitivity on the glans (little to no orgasm)

Here is an overview of things that I have tried thus far:

Full STD panel
Urethral swab
Cystoscopy
Prostate fluid secretion test
Prostate examination
Various topical creams of different kinds
Two short term courses of different antibiotics
Comprehensive stool test
Tested specifically for mycoplasma and ureaplasma
A few semen and urine cultures
MicrogenDX testing
Pelvic floor physiotherapy
Acupuncture
Ibuprofen
Quercetin (Q-Urol supplement)
Naturopathy
Osteopathy

Most of the test results above have come back negative or unremarkable.

What has / may have helped:

Pelvic floor physiotherapy

Admittedly, I’ve experienced limited relief with pelvic floor physiotherapy but it’s relief nonetheless. I experienced some sensation return and a few painless pees after my sessions. This only lasts about a few hours though. I recently had a second assessment done and the physio noticed some pelvic tension. Told me to try yoga, pelvic relaxation techniques, and reverse kegels. I'm seeing her again next week.

hot showers

Hot showers and baths have really helped calm the genital area down, specially after masturbation. I believe it reduces some of the inflammation. I also occasionally take baths with Epsom salts, which seem to help relax the body.

Daily walks

I try to take daily walks for a minimum of 20 minutes. This at the very least helps me get some fresh air and gets my body moving.

Pelvic stretches

The jury is still out on this one for me, but I’m going to include it here anyway because I think it could be beneficial for some. I’m not always the best at keeping up with this, but I try to do a series of pelvic stretches every night before bed. I don’t think this can hurt but I am not really sure it has benefited me either.

Ibuprofen / Q-Urol

I did have a painless ejaculation a few hours after I took Ibuprofen, so this can be a pain relieving approach for some, but it didn’t solve my issues with loss of sensation. It works in the same way as the antibiotics might - temporarily relief due to anti-inflammatory properties. The Q-Urol is an interesting one. It is a quercetin supplement that I plan to take long term. It does seem to help minimally, but more time taking this is needed.

Psychotherapy / positive thinking / mental distractions

This has been incredibly hard for me mentally and has had a considerable impact on my sex life. Since my sensation / pleasure has been greatly impacted, it’s taken something that used to be stress relieving, and turned it into something that is stress generating. What used to be a very sensitive area now just feels like tugging on skin. If anyone has any idea why I have experienced a loss of sensation - and moreover, what could help solve it, please let me know.

Because this may be a neuro-muscular related issue for me, I try really hard to maintain a positive outlook and try to recognize when I’m slipping into the abyss so to speak. It is really easy to look at your symptoms, self sabotage and catastrophize (which then can feed back into making symptoms worse, due to a heightened nervous system).

I see a psychotherapist and am exploring the possibility of seeing a sex therapist to deal with the mental aspect of this condition. I try to repeat mantras like “I’m sore but I’m safe” every time I go pee.

That being said, I’m still pretty bad at following through with the above and have had some tough times, but I know a lot more now then I did before and it helps to remind myself that negative thinking does not make things better. I believe this is a huge aspect of CPPS and managing it appropriately. I continue to struggle though, specially considering that there is no rhyme or reason to any of these symptoms.

Acupuncture

I have just started this, but at the very least it can help me / my nervous system calm down, which I think will be beneficial overall. I am not expecting it to help with my CPPS, but you never know.

Osteopathy

Another thing I have just started. Again, I don't expect it to do anything for my CPPS, but it can't hurt. The osteopath did say he noticed some back compression, so we'll see. He doesn't know if it's related but it can't hurt.

If anyone has anything to add, anything to explain, or any suggestions on what to try next, please offer your input.

[webslave]

If hot showers help, try dry saunas as well. Your case is clearly UCPPS, no need to waste more money on tests.

[Nitz42]

Thanks webslave. Yeah I have pretty much run the gamut in terms of tests. The only ones I haven't done are a pelvic MRI and a penile biopsy. My request for an MRI was denied, and I was assured by a top dermatologist that I didn't need a biopsy.

I'm no longer trying to pursue any further testing and have been on the UCCPS train for a while now (though it took me a while to get here).

Do you have any ideas regarding my lack of sensation / loss of sensitivity?

[webslave]

Loss of sensation and even libido are typical symptoms of UCPPS, although it is not permanent. So just reassure yourself that the nerves will recover.

I would also add PEA (palmitoylethanolamide) into the mix (Amazon, WalMart etc).

[Nitz42]

Yeah I've heard about PEA and thought about taking that along with quercetin. Is 400 mg 3 times daily enough? I should also mention I take a bit of CBD oil every morning and have been doing that for about a week or so now.

[webslave]

Just follow the dosages advised on the bottle.

[Nitz42]

Thanks, I will order some PEA soon. Any particular brand you recommend? Can it be taken in tandem with Q-Urol?

[Nitz42]

I'm also thinking about taking Co-Q10, I've heard it can help with nerve pain and muscle soreness.

[webslave]

Always buy the big selling brands with lots of genuine positive reviews. CoQ10 won't hurt, and may help.

[Nitz42]

Hi all,

This will serve as a bit of an update. Also welcoming any comments or feedback on these points.

1. I have noticed I'm experiencing less ejaculate coming out during ejaculation. I am not sure if this is related to tense pelvic floor muscles, lack of sensation or both. With lack of sensation comes less arousal and libido, so I'm assuming that less ejaculatory fluid is being produced, resulting in less amounts coming out over all. Wondering if anyone else has experienced this.
2. I had a productive appointment with my physiotherapist last week. She suggested that I may have some lower back issues / compression, and that this could be contributing to a chronically tense pelvic floor. She suspects that one of the reasons I haven't really responded to pelvic physio (this includes manual therapy with a pelvic wand), is because of nerve compression caused by lower back compression. This is plausible, because I do get some radiating pain (burning sensation, mostly), when I sit for long periods of time. She says this could be causing me to be unable to do reverse Kegels that well.
3. Obturator internus nerve entrapment - she says I could be experiencing this, which could be causing a lack of sensation in the penis. This discussion started when I told her that I sometimes experience muscle spasms while ejaculating on my right inner thigh.

All of this is (chronically tense pelvic floor) is potentially causing inflammation and a host of my other symptoms.

Has anyone experienced anything similar or have any insights?

[webslave]

1. Very common symptom, due to ductal inflammation, and not important
2. That's quite possible. Use ice on lower back and see if that helps. https://ucpps.men/viewtopic.php?t=8015
3. Again, it's possible.

[Nitz42]

Is there anything you’ve found that helps with inflammation?
I believe a lot of my symptoms are inflammatory related. One of the only times I’ve experienced relief of all symptoms was when I took antibiotics (I know there’s a piece on the anti-inflammatory impact of antibiotics) - just wondering if there’s anything that has worked

Admin comment: There are a lot of things you can use for inflammation. See the Tips thread: https://ucpps.men/viewtopic.php?t=9338

[freemeofthis]

Nonsteroidal Anti-inflammatory Medications (NSAIDS) can help systemic inflammation including the inflammation associated with CPPS. In US this would be Ibuprofen, Naproxen, Meloxicam, Celecoxib, Nabumetone, Sulindac, Etodolac, Diclofenac among others. Since upregulation of Mast cells could be part of the problem (and mast cells release histamine), consider some non-sedating anti-histamines..in US, Xyzal (Levocetirizine), Zyrtec (Cetirizine), Allegra (Fexofenadine), Claritin (Loratadine) among others which are considered "histamine 1 blockers"; also could consider Famotidine/Pepcid "histamine 2 blocker'.

[Nitz42]

Thank you webslave, freemeofthis. I apologize if I'm asking questions that have already been answered. I'm going to take some time to comb through the forum resources tonight.

In the nearly 4 years that I've had pelvic pain, I have noticed symptoms greatly improve or even disappear (temporarily) when I am completely not thinking about my pain, the condition, or anything associated with it.

This has happened on occasions like an outing with friends or when I am entirely engrossed in a task. However, it is extremely difficult to achieve this regularly due to the fact that pelvic pain is pretty much always present in the back of my head. In the early stages of my condition, I was also in a constant state of anxiety, which obviously has not helped long term.

The first pelvic floor physiotherapist I saw stated my pelvic floor was fine (after a couple of months of manual pelvic therapy sessions) and was convinced my condition was due to neurogenic inflammation. I have seen an occupational therapist in an attempt to deal with the psychological component of pain, but I am now in the process of searching for and contacting a psychologist who specializes in chronic pain / chronic illness management.

The latest therapy to not lead to anywhere successful for me is chiropractic care. I have been doing it for several weeks now, and I do not think it is leading anywhere productive for me. I am not entirely sure what I need to consistently not think about my pelvic pain. Seems like an almost impossible feat.

For 4 years I have been searching for that 'missing key' that would help bring me some relief. Unless there's a more obvious physical (other than a tight pelvic floor) or pathogenic cause I've been missing.

Has anyone heard of a case like this - with a strong psychological link? How would I go about reducing neurogenic inflammation?

[webslave]

The brain is strongly involved in the maintenance of UCPPS. It's probably the chief culprit.