New here, any advice much appreciated

[Nick]

My story starts in late February, shortly after buying a mountain bike. A couple of days after a hard ride I experienced pain in my left testicle while passing a stool. The next day pain had moved to my right testicle and stayed there for a couple of weeks, the pain then went away only to return a few weeks later but with bladder pain/pressure quickly followed by a strange discomfort in the head of my penis. The bladder pain only lasted for a few days but since then I have been left with a penis discomfort. It sometimes goes away for a few weeks only to come back again. There seems to be a link with exercise, running has on a few occasions triggered symptoms. I have seen a urologist and have had urine tests, cystoscopy and an ultrasound of my bladder/kidneys, all clear. I should add that I have experienced isolated identical testicle and penis discomfort before, for a few weeks about 7 years ago.

I am now at a situation where my urologist states that I don't have prostatitis and he is not sure what is causing my symptoms, he has pretty much given up, I am not scheduled to see him again. I have only taken a 1 week course of trimethoprim and I don't believe bacteria are the culprit. My urologist hasn't forced the issue and thought about trying Cipro but backed off I wasn't keen on trying it.

I have been trying pelvic stretches/relaxation but it I guess it is early days yet to see if that works. I did see a chiropractor who said my pelvis was way out of alignment but he doesn't know much about CPPS. Living in the north of England there isn't much expertise around and I haven't found any physical therapists nearby.

I am really after some advice, have I missed something? Is there any other tests/treatment I should ask for? It sounds like I have chronic prostatitis / chronic pelvic pain syndrome but I have a urologist saying that I haven't got prostatitis. Confused? I certainly am. I am seeing my GP shortly to see what the NHS can offer me and could really do with a bit more direction. Any help or advice would be much appreciated

Sorry for the long post, than you for reading this far

Nick

[webslave]

Do you have post-ejaculatory pain?

[Nick]

Yes, I have actually had post-ejaculatory pain for a number of years. I don't get it all the time and never when masturbating, the pain I get is an intense burning/stinging at the tip of the urethra, it lasts for no more than an hour. I used to consider it a minor inconvenience as it would always go away. It was a symptom my urologist was interested in when I first saw him, he that stated that post-ejaculatory/penile and testicle pain was suggestive of prostatitis.

[webslave]

It is. It's the classic hallmark of CP/CPPS. You do have it, in my estimation.

[tweezerr]

What up Nick!! Welcome aboard. It sounds like you have chronic prostatitis / chronic pelvic pain syndrome to me, but more of a minor case. The one thing i've noticed is that everyone has a slightly different experience with their symptoms of chronic prostatitis / chronic pelvic pain syndrome but there also the hallmark symptoms that everyone seems to get. Post ejaculatory pain is definitely one of the top most common symptoms that everyone with chronic prostatitis / chronic pelvic pain syndrome seems to have.

I would make sure you were tested for STD's, just to rule that out.

Another thing to try out is any benzodiazepine drug; the most common/best are Klonopin, Ativan, Valium, Xanax. These are hands down the best drugs to alleviate flares and symptoms. If you have symptoms and take one of these drugs and your symptoms go away you can be almost 100% sure its CPPS.....IMO. Be careful with these drugs though as they have a nasty withdrawal if you take them on a daily basis.

Lastly pickup the latest version of "A Headache in the Pelvis". That book answers literally every question out there on this condition. Good luck!

[Nick]

Thanks for the welcome folks. I am thankful that my symptoms, bad as they are, could be worse. I have read the latest edition of "A Headache in the Pelvis" and "Heal Pelvic Pain" by Amy Stein, both very useful and make so much sense to me.

I am hoping that I can stop this think in it tracks before it gets worse. It is not quite working as planned at the moment, I think re-training my brain will be the hardest part. I suffer from health anxiety and have a history of random pains, these range from IBS type pains to chronic headaches and other physical anxiety symptoms. What is interesting is that since getting pelvic pain I have not had a headache or any other pains, my brain seems to be focusing all its energy on my pelvic region right now. The mind is a powerful thing. It is a fascinating area, one I would be very interested in if I was not the subject matter.

Thanks for the info about benzodiazepine drugs, I amd going to mention these to my GP. I have taken Valium before so it may be a useful thing to try when I get a bad day.

Nick

[Nick]

Hi,

I have been suffering from tip of the penis pain for quite few months now, intermittent at first, but I now seem to be in a continual flare, my last period of no symptoms was in later October. Strangely, I sometimes get discomfort/sensitivity on the shaft on the penis, just under the head. This seems to happen when my symptoms are not too bad, when in a bad period I get burning after urination. After reading headache in the pelvis and reading this forum I have been searching for trigger points in the anterior levator ani but I can't find any, in fact, I can't seem to find any trigger points anywhere. The only pain/possible trigger point I can find is in my glutes and that pain is related to exercise. I was really hoping to find some trigger point that I could treat, but no matter how hard I look both internally and externally, I can't find any. The question I have got is has anybody else experienced penis tip pain but with no trigger points? I do suffer from anxiety and have had many random pains from anxiety in the past so I am sure there is a large anxiety aspect to my pain. In the past, pain has always gone in a month or two, but this pain is lingering and not improving.

I am aware that I am a complete amateur in finding trigger points and access to specialists is not easy in the UK. I am going to try to book an appointment with either Bill Taylor or Ruth Lovegrove-Jones, maybe they will find something. Does anybody have any experience with Ruth Lovegrove-Jones? She sounds quite knowledgeable in this area and is based in the south of England.

Nick

[webslave]

As an amateur, you cannot assess whether or not you have trigger points. The shaft sensitivity points to hyperalgesia and allodynia. The UK is not well served by physios who can treat this, and I have reservations about Taylor.

[Nick]

Thanks for the reply webslave, I have read some worrying reports about Bill Taylor on here so I have been looking for alternatives. You are right the UK is not well served in this area, as most people find out if a urologist can't see a physical problem or find bacteria they just seem to give up. There is a real lack of specialist help. I wonder how many people are suffering with this condition and really believe that it is caused by some unknown bacteria or virus and there is nothing that can be done. I am really glad I found this forum, it is the best resource I have found. Thanks for your help webslave, you are doing really good work here.

[we.the.hulk]

Nick, tip of the penis pain is common. It's actually fairly easy to get rid of (although, in the beginning it freaked me out to no end), and if this is your main symptom then you're in good shape. You can see the diagram in HITP. Its really just referred "pain" from the the anterior prostate. Tim says the insertions get tight. I have the benefit of the wand now, but I think I could have gotten rid of this sensation by just stretching the area out with my finger. What I think works best is inserting a lubed, gloved finger and just stretching, pull down and out. This will indirectly stretch the insertions of the prostate. If the wand is available in Europe, just go get it. Its pretty self explanatory and if you need help most folks on here can get you started. Don't sweat it. You don't need a specialist. I mean, this board is your specialist. Oh, and in my opinion I would not stress about finding trigger points. I got too caught up in that too. Most likely its some tension around the prostate anyway. Thats not to say you shouldn't be evaluated for them, but in my experience, it was more important just to stretch the area daily. You'll be fine.

[critthinker]

WTH, can you talk more about your strategy of stretching the insertions? I've been able to reach the area lateral to the prostate toward the middle and even higher up near the top of the prostate. What I'm a bit confused about is whether this stretching should be directly to the side of the prostate or over the prostate itself? How thick is the tissue that separates the rectum from the prostate? Does this tissue need to be stretched, too?

[Nick]

Thanks for your positive response WTH, I do hope you are right that it is fairly easy to get rid of. Again, more info about your stretches would be really useful. I don't think the wand is available in Europe, I could be wrong though.

[critthinker]

Nick, Dr. Wise told me on a phone call that the wand is currently available through a distributor in Holland.

[webslave]

Nick, Dr. Wise told me on a phone call that the wand is currently available through a distributor in Holland.

I did a Google search and found a site in the Netherlands that mentions the wand, so I emailed them asking if they are selling it. The response was:

Thank you for your email. I have a pain clinic in the Netherlands and I am trained by Dr. Wise to provide his work in Europe. The Wand is available for our patients only until now. I do not sell the product. If people want to by one they should contact Dr. Wise via http://www.pelvicpainhelp.com
More information about the clinic and the products we offer on the website http://www.pelvicpain.nl (choose English in the menu)
If you have any questions I'll be happy to answer.
Kind regards
Fetske Hogen Esch

Is there perhaps another distributor, critthinker?

[critthinker]

Hmm, this is interesting. It could be another distributor -- or maybe this was the one Dr. Wise was talking about. I emailed Dr. Wise to follow up about the name of the distributor, but he never got back to me. I will try to call him again this week.