New here and my story

[bobby]

Hello fellow chronic pelvic pain sufferers, my name is bobby or just bob is fine and here is my story. Around 12 years old when I was playing tackle football in the pop Warner league I all of sudden would start having extreme pains in my penis, it was at the time on a maybe once a month basis and usually after masturbation but not always after masturbation. So I would kind of just deal with it cause it didn't really happen very often. So I went on for years just very randomly having this symptom and it would sometimes go months without hitting me so it wasn't a really a big deal to me at the time. Around 17, very randomly the pain became constant and an everyday thing, I dropped out of high school, and for about a year would just sit at home and do nothing. I saw about 3 different urologists, each prescribing me antibiotics with no results. I became extremely depressed. I stopped drinking caffeine and that brought down by symptoms a bit which was a small relief. Also I had been smoking cigarettes from about age 13. I stupidly didn't connect those dots for a little while longer. At 18 I decided I needed to start working cause I was not pleased with the way things were going, pain or no pain I am an extremely responsible and ambitious human being so I would try my hardest to work. I got a job at a local retail store, mervyns, there I met my girlfriend (or ex-girlfriend I should say), for the sake of the story lets just call her whatshername. So anyway she too had chronic pain issues, ovarian cyst, so we quickly related on that among other things. So about 2 months into this relationship after having sexual intercourse for about a month my symptoms started to become less and less noticeable and there were even times in which they didn't bother me at all, although rarely. This went on for the three years we were together and we broke up last August and come October my symptoms came back with a vengeance. I spent the months before October partying, drinking and smoking weed. The symptoms came back so ruthlessly I had to go on medical leave from work for 2 weeks and almost lost my job. After extensive research I found the PNE forums, in which I was convinced I had had this pudendal nerve neuralgia or entrapment. I posted on there for about a month or so and even set an appointment to get a pudendal nerve block, which was going to cost me grips but 5 years of going through this I was willing to believe and try anything. Honestly I was just looking for any other explanation for why I was going through this hell other that what the doctors had diagnosed me with. I then received a private message from a user named medguy with the link to this site and all the amazing information that lies here. All this time I thought it was my prostate problem that created my pelvic muscle tightness when really it was my pelvic floor tightness and caused my prostate pain. After looking back on everything and comparing it to the causes here I see that the reason I was in less pain when was with whatshername was because she distracted me and put me at ease and the reason I got it again was the stress and anxiety the break up put me through. I can also look even further back and remember how nervous and anxious I was as a child as my mom is a nutcase and made me all scared, and anxious with all her catastrophic conclusions and paranoia. I had irritable bowel syndrome as a kid and it was all do to stress which I am sure had a large play in my pelvic muscle tension. Anyway 5 days after finding this site and it making me realize how i was unconsciously flexing my pelvic muscle I have been constantly reminding myself to not flex my it and just let it go limp and relax. Although sometimes it can be difficult to relax it, especially when I am standing and walking I have already gotten pretty good at it. And honestly I already feel a little relief, not completely but It feels... Different, good different. Anyway I have a physical therapist appointment on Friday with Angela Spruill and am stoked about it. She is mentioned on this site in the pt section and has extensive training in trigger point therapy as well as the pelvic region. A little nervous as last time I had a prostate exam it hurt like a mother ****er but I plan on doing some of my own anus massaging from now to my pt appointment so I can hopefully desensitize it a bit. Unfortunately this is going to be a long journey but I am completely devoted to this and will do this protocol for as long as it takes. I am usually afraid of doing things cause I am afraid of having a flair up when I am out and about and being crippled by it but I now realize that that very nervous and anxious thinking is what brings my symptoms on... I cause the pain myself by being afraid of the pain... Oh I forgot to mention that I purchased A Headache In The Pelvis and am more than half way through it since I got it last Friday. The book is fascinating and makes so much sense. I have been doing the moment to moment relaxation mentioned and have found it to be extremely helpful in relaxing my pelvic muscles. Anyway let me list my symptoms.

1. Discomfort in base of penis/urethra (constant but recently since pelvic relaxing not as bad as usual)
2. Discomfort in scrotal area (sometimes)
3. Extreme, usually crippling pain at tip of penis (only when flared up)
4. Small pain throughout legs (usually only when flared up)
5. "Shriveled" hardnened and sensitive penis (sometimes but not always sensitivity)
6. Discomfort in pubis area, what feels like my prostate (sometimes but not often)
7. Pain after ejaculation (not always and usually never had pain after sexual intercourse)
8. Discomfort, burning at tip of penis during urination but then relieved afterwards
9. Discomfort after bowel movements (sometimes)

Well that's really all I can think of. Anyway I am glad that I was referred here and if whoever referred me is here, again I thank you.

[webslave]

Hi Bob, and welcome. Just a quick note to say you may be better off avoiding marijuana (many men find it makes them worse) and likewise alcohol.

[bobby]

Yeah I have definitely stopped smoking anything, sucks but I'd rather be able bodied than in debilitating pain. In any case I have noticed small little things ever since I have been relaxing my pelvic muscles, small symptom relief and feeling progressively less irritated, urine flow feels... different, good different though. I feel less fatigued and the feeling is making me less and less anxious and stressed which is in turn making it easier to relax. The cycle of fear of pain being the cause of pain is broken now that I have been informed. I feel a whole lot less depressed than before, seeing a light at the end of the tunnel all a while knowing I have only started my journey and there are still some painful times ahead but also good, pain free times even further. Hmm I am terribly optimistic but that's just me. As the book says, just let your body do it's thing, no set dates as that can create anxiety and be counter-productive. Excuse my rambling but this is the first time in 5 years that I feel like this and it's a good feeling.

[bobby]

Ok so I tried doing the rectal massage thing in the shower and well I don't know why but I got really faint, breathing got difficult and my ears started ringing... One thing is though it didn't hurt... Which I guess could mean there are no trigger points in the rectal door I'll call it. I never have rectal pain so that could explain the lack of pain.

[webslave]

Bobby, see Carl's starter list

[bobby]

Very nice list, I will be sure to do all of these things. I have my first physical therapy appointment tomorrow with Angela Spurill and I will definitely post how my experience with her is and how knowledgeable she is on chronic pelvic pain. Today my legs hurt a lot but I think it has more to do with the weather. I have been pretty good with constant relaxation of the pelvic muscle and that has been a great help in reducing pain and discomfort. Anyway I will share my experience tomorrow.

[bobby]

Had my physical therapy appointment with Angela Spurill and she is great, she is familiar with chronic prostatitis / chronic pelvic pain syndrome and with a headache in the pelvis and seems well versed with the protocol, tigger point release and what not. I am going to be going weekly and am very pleased that I found someone so close who knows there stuff.

[carld]

Hi Boby and welcome. Glad you were able to read my starter list that perhaps can help you manage your symptoms.

[bobby]

Thanks Carl, for the welcome and the helpful list.

I have a question, I am getting like muscle spasms in the pubic bone area, like behind it. They're not painful and they don't seem to bring on any symptoms. I have never had it happen before and was thinking it had something to do with the trigger point release and the skin rolling the PT did as well as the constant relaxation of the pelvic floor. Anyway if anyone has any insight I would be glad to hear it.

Thank You.

[webslave]

Bobby, search the forum for "fasciculations". It's a good sign.

[bobby]

Sweet! Honestly they feel nice, like finally something new! Anyone have any idea on riding dirt bikes and the affect they could have riding them?

[bobby]

Another question. Should the stretches be causing flare ups or discomfort? Cause there not and I was wondering if that's a good or bad thing.

Thanks!

[webslave]

Yes, typically trigger points can get worse when stretched or massaged. Just keep going, but alter the intensity. This is one of those "asked-and-answered a million times" questions.

[bobby]

I do apologize for asking a question that has been answered so many times but I did try doing a search and couldn't find the question in which I asked. Basically what I am saying is although I am having flares, I am doing the stretching everyday and am going to see a PT once a week for internal and external trigger point release. Also I am constantly working on relaxing my pelvic muscles. I mean I am seeing a change in my symptoms, actually feeling pretty good most of the time but I was just thinking that pain was part of the healing process. I asked my PT and she said she is not trying to cause any flares in her trigger point release and that she is being gentle on the tense and tight tissue and muscles. Anyway I am just making sure I am doing this correctly cause most of the stories here people say during the protocol they experienced flares quite often. Also I got my any accredited quercetin product and am going to take 2 a day for a month and see how that goes. Thanks for any feedback!

[bobby]

Ok so here are somethings I've observed since being made aware of my compulsively tight pelvic muscles. One is after constant relaxation of the pelvic floor muscle for the past month I have found that the discomfort in the upper urethra, near the prostate(feeling as though there was an object in my urethra) has basically disappeared. Also I am able to comfortably wear jeans and jockey boxers. My penis has significantly lost its extreme sensitivity, it is most of the time flexible and relaxed. Now this is not to say I am anywhere near cured of this. After ejaculation my perineum feels tight and I can feel tip of the penis pain coming on but am usually able to fight it with relaxation of the pelvic muscles, which I am quite pleased with. Although the perineum tightness still lingers. Now this was what happened after the last time I masturbated and the night before I was drinking so that could easily be a contributing factor to the pain. So in most cases as long as I continue to relax the pelvic muscles my symptoms don't show. Now I have also noticed it is much easier to relax the muscles when I am sitting or laying and more difficult when standing/walking. It feels so foreign to me, not tensing my pelvis when walking/standing... Anyway I have an appointment with my PT tonight and am going to ask her if she can show me where my internal trigger points are so I can work on them at home as well as there. Wish me luck!