Stubborn trigger points (Ramana's Case)

[boulder]

I'm no guru, doctor, or anything special, but I didn't ejaculate for the same period of time (no nocturnal emissions even): viewtopic.php?f=37&t=4620&p=24977&#p24977

In my case, I think it was helpful to give myself a rest. Since attending the Stanford Clinic in summer '07 and getting rolling with proper treatment, I have been easing back into sexual activity. My sexual function is returning to normal, but very, veeery slowly (which is OK, patience is a key skill with this condition).

BTW, great find, Kevin! Gotta love that PubMed.

[kevin]

Thanks Kevin. I should have clarified my point further. Does the fact that there has not been much ejaculation makes the vessels 'clogged' and contribute to the pain. It sounded like BS to me but I have heard it from some people in the know (but they admitted that it is difficult to ascertain without any tests). I just wanted to elicit opinion from the gurus and their experiences.

This is an old-school theory. It may have some truth to it, but I'm not aware of any solid evidence. I'm not sure if it's bad for your health to go a long time without ejaculating.

Frequent ejaculation probably has some health benefits, and there are some people here who have found a good balance by having sex a few times a week. However, chronic prostatitis / chronic pelvic pain syndrome patients have to weigh this against how much it aggravates their symptoms. How much do you flare up after sex? Do you get way worse after a nocturnal emission? It's hard to come up with any kind of rule about this, but I would say don't force yourself to endure a flareup just so you can "unclog" the ducts.

There's still no consensus on why sex causes chronic prostatitis / chronic pelvic pain syndrome patients to flare up. Part of it is probably due to the pelvic floor, especially after orgasm. I strongly suspect there's a neurological aspect to it as well (i.e. nerves being sensitized).

I think a large, randomized clinical trial on the effects of sex/abstention is warranted.

[garyholc]

I believe it is possible to ache after going for too long without any release, and I find personally I feel better after masturbating occasionally just to release the pressure so to speak, and to keep blood flowing the muscles in that area. Plus it may help relax you a little, that is if you can take your mind off the worry of any pain later.... but you won't know until you try :)

[carld]

I feel better after masturbating occasionally just to release the pressure so to speak, and to keep blood flowing the muscles in that area.

Agreed or sex...Bottom line releasing the fluids 2 to 4 times a week works for me.

[Psychic Garbage]

Me, every other day.

You're doing regular PT - shouldn't that have helped your ejaculatory issues by now? Personally, my ejac. symptoms went away by 90% after a few sessions.

8 months is a long time. I'd say relax, fill a warm tub, and let 'er rip.

[ramana]

I did not try ejaculation. It was more because even nocturnal erections give me pain. I asked PT. She is concerned that my pain level is not going down and does not know what else to do. Then she says go to psychologist. Psychologist says I am all good (no depression - not much anxiety apart from that caused by pain). As I mentioned in other posts - same TrPs every time - all the time. Sometimes something gets addeed e.g. I am getting sharp pains (thorn in flesh) like in my left sphincter but then it goes away. No one has been able to figure out why. But most of the time same TrPs continue. Getting vitamins tests etc done as suggested by mbaker

[webslave]

Ramana, have you had a lower spine MRI?

[ramana]

Yes lumbar MRI as well as pelvic MRI. All clean. Semen test (when it happened) all normal. TRUS / Scrotal doppler all normal. All tests done in August 2007 at the time the testicular pain happened.

I am thinking of getting some test done which can show if the prostate is inflamed (now). What does one do for that - TRUS/ prostate secretion? (but this is moving away from the topic)

Thanks for the replies guys. Much appreciated.

[ramana]

Just to update this thread.

• Hand pain significantly down after ultrasound/ taping. And being in good posture and being off the PC(which actually means that I cannot do much work because I have work from bed).
• I did lidocaine injections today and they gave me dizziness. Maybe sedation in Botox started the intense headache. That does not explain the second episode of 4 days but let's assume that God wanted to delete 4 days from my life

That leaves me with pelvic pain. Of course there is a question why so much pain suddenly. I had to be physically lifted out of the bed for 3 days for daily activities but now I can move around the house as earlier. (and drive the car some distance).

You know, Ramana, you are still in the early stages of this. With CFS/Fibro/CPPS type illnesses (HPA axis involvement almost certainly), you need to give it a little time, and in cases like yours where the immune system is really riled up, total peace and quiet, a healthy non-allergenic diet, supplements, and patience are essential.

Its been a year and 14 days now. I can give it all the time it takes except I need finances + someone to be around to live by. People burn out after giving me unconditional support and I can see that. Nevertheless, I guess it cannot be helped. But any methods of expediting the process are certainly welcome.

[webslave]

Wow, Ramana, your case is quite unusual, and you've done a good job investigating it thus far. I'll have another look at your posts again soon and see if anything suggests itself, but you seem to have stumped the uros and me too at this point. I'd like to see how you feel after another year of rest and relaxation (hope this is what you are getting, because you seem pretty fanatical about trying everything, which makes me think you are not really relaxing at all...). I know that sounds bad, asking you to take a year off from your life, but that's what I did, and it did help.

[strobers]

If masturbation originally caused the chronic prostatitis / chronic pelvic pain syndrome symptoms, as in my case, or if masturbation exacerbates the issue in some way, it's best to give the body some rest. We have been led to believe that sex/masturbation is "healthy and normal." Yes it is, but not every day or multiple times a day. People don't realize the force of contraction when you have an orgasm. I started masturbating at the age of seven and from my mid teens to my early thirties I was a Man Whore as well. If I wasn't doing one thing I was doing the other thing for almost 40 years. Of course the body is going to respond negatively.

Back in 2004 when I started getting frequency, I wish I knew what I knew now. My body at that time was telling me, "Hey, HEY, slow down a bit" but I didn't understand what was going on, so I couldn't listen. Now I'm paying the price.

In my particular case, frequent orgasm, coupled with extreme stress and anxiety and tight pelvic floor finally caused the tipping point that has brought me to this place in my life.

[ramana]

Update
Met the pain mgmt doc:
a) Given that it was not clear if Botox 100 units worked - he (and I) have agreed on 300 units.
b) He claims that during the earlier lidocaine and Botox procedures done through EMG, he detected a location where there was no nerve activity. It was the same place both times which indicates nerve damage.

He is therefore also suggesting a trial of spinal cord stimulation if Botox fails. I told him that I have never heard of pelvic pain being helped by SCS. He said that he has treated one person successfully (he had no trigger points) last week with SCS (Spinal Cord Stimulation). I have agreed to a trial now. In fact due to my constraints on the current living arrangements, I have requested him to do the trial before Botox and then make decision on SCS later

An interesting point that came up during the discussion was that even with SCS physical therapy can continue (in the hope that it may still cure). So SCS is not the end line treatment that we are all conditioned to believe. I started thinking of it as glorified tramadol (on another note 50 mg tramadol is NOT helping me at all) i.e. if SCS succeeds at all.

I don't think anyone has tried SCS on this board. But if anyone has got any ideas on how the procedure is done it will be useful. The doc said that no incisions and just put leads near the area.

Comments / perspectives are welcome. I rely on the collective wisdom of this board to make inputs on decisions on the line of treatment to follow.

[ramana]

Forgot to mention this: UCSF does MRN for pudendal nerves. I know it has been mentioned earlier from a google search but I have now verified it with the radiologist

[webslave]

You are becoming a pioneer in treatment, Ramana. You have a serious case and we are all interested in your findings with SCS and Botox.

[J Dimitrakov]

Update
Met the pain mgmt doc:
a) Given that it was not clear if Botox 100 units worked - he (and I) have agreed on 300 units.
b) He claims that during the earlier lidocaine and Botox procedures done through EMG, he detected a location where there was no nerve activity. It was the same place both times which indicates nerve damage.

He is therefore also suggesting a trial of spinal cord stimulation if Botox fails. I told him that I have never heard of pelvic pain being helped by SCS. He said that he has treated one person successfully (he had no trigger points) last week with SCS (Spinal Cord Stimulation). I have agreed to a trial now. In fact due to my constraints on the current living arrangements, I have requested him to do the trial before Botox and then make decision on SCS later

An interesting point that came up during the discussion was that even with SCS physical therapy can continue (in the hope that it may still cure). So SCS is not the end line treatment that we are all conditioned to believe. I started thinking of it as glorified tramadol (on another note 50 mg tramadol is NOT helping me at all) i.e. if SCS succeeds at all.

I don't think anyone has tried SCS on this board. But if anyone has got any ideas on how the procedure is done it will be useful. The doc said that no incisions and just put leads near the area.

Comments / perspectives are welcome. I rely on the collective wisdom of this board to make inputs on decisions on the line of treatment to follow.

I would be very careful making those choices with regard to SCS and Botox. If this is a case of centralized pain, both approaches are unlikely to succeed. I would probably get an fMRI of the brain before deciding on either approach. Naturally, you have to discuss this with your physicians and get that done at a place which has experience with chronic prostatitis / chronic pelvic pain syndrome patients.

Best of luck,
JD