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    Old 02-26-2007, 01:27 PM   #1
    ruko4
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    chronic pelvic myoneurpathy.

    hey, youngone I too suffer from chronic pelvic pain which I guess now they are calling it chronic pelvic myoneuropathy which means muscle nerve pain on the pelvic floor. I have have been through it all from nemerous rounds of antibiotics, alpha blockers, antiinflamatories, anticonvulsants, tricylic antidepressants, opoids,etc. I have seen 5 urologists, gastrointestinal doc, pm doc, etc. Non really nowing what to do my current gp was a urologist for 30 years and I also see a pm doc who has me on metadol (methadone) 50mg a.m 25mg afternoon, 50mg p.m., lyrica 150mg twice daily, and elavil 25mg at bedtime which was working really good up until this weekend where I have been to the er twice. I was on oxycontin 60mg tid with the same other drugs, and I definetly find the methadone to be much better for pain relief.

    Anyway I feel your pain my pain is deep inside my pelvis radiating to my testicles which is unbearable at times!! And don't worry your not the only one out there whith this condition that no doc understands or has a real name for other than wastebasket names. I gotta run it is good to now that somebody else is out there to talk to. If you have any questions post em I will try to get back to you, and sorry to hear about new pm treating you that way.
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    Old 02-26-2007, 02:40 PM   #2
    youngone00
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    Re: chronic pelvic myoneurpathy.

    I appreciate your response. Yes, it is very hard to deal with. Not putting down anyone else on this board, or the pain that they go thru, but atleast they have Dr's that understand there conditions. Besides the pain management, I reccomend finding a Physical Therapist who can do trigger point therapy of the pelvic floor. There is a Doctor, named Dr Anderson, and another Doctor, who is named Dr Weiss. Dr Weiss actually suffered from Chronic Pelvic Myonurpathy for years. Anyways, they are doctors at Stafford University who treat this condition and actually understand it. I've been seeing a PT that they reccomended me too, and doin certain stretches they reccoemended that help tons. Although even though they help tons, I'm still in more pain then I think is imaginable for most people. There is no resting my leg on a chair, or wearing a back brace, it seems there is no way to get out of this pain I"m in. The only thing that is a some what immediate help is hot baths, but once i get ouf of the bath I'm back to square one. Do a search for Dr Weiss and Stafford University, and you can call him and he will do a free consultation over the phone and reccomend you to PT in your area. Its really really worth it. There is also a book called a Headache in the Pelvis, that teaches you stretches and other stuff that can help.

    Bryan

     
    Old 02-26-2007, 04:03 PM   #3
    Fabrashamx
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    Re: chronic pelvic myoneurpathy.

    Hi Ruko and Bryan,
    I am glad you found each other, its great when we have people on the board with the exact same thing, you guys can help each other and educate the rest of us at the same time.
    Bryan, isnt it great when a doctor has had the same thing we have? Not that I'd wish your problems or mine on anyone, But it is nice when the doctor really gets exactly how painful our situations are, Mine had had a fusion in the same cervical vertabrea as I did, and even though she hadnt gone nearly as long being misdiagnosed as I did (she wasnt my doctor then) she knew the pain, and on days when the weather made it worse (humidity or approaching low pressure systems make my fusion swell up like a softball) she knew when I needed better break through meds without me having to tell her why.
    I hope you come back to the other post when you get a chance and see what I and more importantly, surgicaldisaster has to say.
    Your Friend, Fabby

     
    Old 02-27-2007, 12:49 AM   #4
    youngone00
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    Re: chronic pelvic myoneurpathy.

    Thanks alot of the reply Fabby. I appreciate it.

    I'm sorry for this post, its going to be very long, but I"m hoping it answers some questions for Shawn, or anyone else who has chonic pelvic pain. Please read, trust me it will be worth it if you are a sufferer. Good luck!

    Now, as far as Chronic Pelvic Pain Syndrome goes. It's not that I'm misdiagnosed, I've been diagnosed by Dr's who know what they are talking about, but there are tons (probaly 90 percent) who dont know. I live in New Jersey, and had to go to New York City for over a year for Physical Therapy, because nobody out here knew how to perform the trigger point therapy that I need done. Finally, I found a very nice therapist here in NJ, and she said she had a couple of patients who were diagnosed with prostatitis and pelvic pain, and that she couldn't do much for them other than bio feedback (hook them up to a machine and show them how tense there pelvic floor is). I than explained to her what I had been getting done, and she was interested, went and bought the book from Dr Weiss, and started learning. From there, I had my PT (From NYC) and her get in touch, and the PT from NYC helped teach her, and now my Physcial Therapy is 20 minutes from home instead of 2 hrs.

    Shawn, I dont know if you ever notice it, but people with CPPS, tend to tense the pelvis alot, especially when stressed out. When I first went to PT, she hooked me upto a bio feedback unit, and it would show my pelvic floor, and how tense it is. I would be as high as around an 18-19, some days when I came in during flare ups I'd be a little over 20. What she does is trys to teach me to relax the pelvic floor, by doin different relaxation techniques. By the end of the appointment alot of times, I will leave and be at around a 7-8. I used to be hard for me to even get to a 14 when I first started. Now another thing that seems to help people with cpps, is hot baths. I remember when I used to go to the ER every week, and they would tell me I had prostatitis, and to take antibiotics, more and more of them. I used to tell them I already was on Cipro for 3 mos straight, yes, thats right, 3 mos straight and it did absoloutly nothing. Anyways, i would wonder that if it had to do with my prostate, why them hot baths help me soooo much. I mean dont get me wrong, 10 min after I'm out of the bath my pain is back to normal, but while i"m in it really helps (brings my pain from a 9 to maybe a 6. Well what this Dr says, is our condition is more of a chronic spasm of the pelvic muscles, which makes alot of sense. The reason that stress seems to induce flare ups, is because the more we stress, the more we tense our pelvic floors, which in turn turns in to a flare up, because tensing causes our muscles to become tighter thus they spasm more.

    They actually call this the stress tension pain cycle. It becomes one vicious cycle. The cause of this is unkown still, but one thing that remains common is that people with cpps tend to for the most part be high stress type of people, inwhich to be honest with you I never considered myself to be. Now I do, but thats because of all of this. Anyways though, they say that the more you stress, the more your going to naturally tense (and you dont realize your doin this), and the more tensing the more pain it causes. And obviously, the more pain you have, the more its goin to cause you to stress, and tense, and soo on again, and cycle keeps going.

    How this Dr helped so many people is he runs clinic called the Stanford Protocol, I dont know much about it except that you can do everything they teach you there at home, and save the thousands they want to charge you. What they teach is first the trigger point therapy, which I heard they teach you to actually do on yourself, or you can bring your wife and they will teach her to do it on you, but there are more and more PT's who are becoming familiar with this. Now what the PT does, when they do the tp (trigger point) therapy, is they go in and touch on certain muscles on your pelvic floor. With all of the tensing we tend to do, we tend to form trigger points on the muscles. Now I'm getting into a part I dont understand real well so bare with me. What trigger points are, are pain spots on the muscle, and when the therapist touches the painful spot, it usually recreates the actual pain that you have. In other words, I have testicle pain besdies from the pelvic pain, and she may touch one spot that actually makes my testicles hurt every time she touches it. Well that would be considered a trigger point. When touched, they actually refer pain to your painful spots. Well they will find these spots, and some how lengthen them, I think they basically just press them, and kind of try and extend them with there fingers. We do this for about 15-30 minutes per session, as it can be a little painful. The reason behind tp therapy is it reverses some of the damage done in the sense that it re lengthens some shortened and chronically tight muscles. Now if your getting this done it will help, but if your still tensing the muscles alot, you are just going to keep reversing all the good the therapist is doin. So they try and teach you to relax your pelvic floor, they call it moment to moment relaxation. They try and train you so that every lets say 10-15 minutes, you have something that reminds you, and you let go of your pelvic floor, and just relax it. See its really intersting, because once you start this, you will really really realize just how much you are tensing the floor. I still have trouble relaxing my floor, and I've been doin this for about a year. The Bio Feedback machine (i'm pretty sure thats the name of it, I hope I havn't been using the wrong name this whole time), is cool because it atleast lets you see how your tensing the muscles, and its like a graph, and when you finally learn to relax them, you will see the graph shoot down, and back up when they are tensed, so it atleast teaches you what it feels like when you are tensing, and relaxing. The goal of the bio feedback,a nd moment to moment relaxion, is to get you to subconsciously relax your pelvic floor. Its kind of like people who get bad tension headaches, but instead of tensing in your head, we tend to tense the pelvis, which is why the book is actually called A Headache in the Pelvis. So they feel if you do the moment to moment, you are not tensing as usual. If you do the PT, you are healing what is already messed up, and doin the moment to moment, you are not making it worse anymore. Now they also say you should to atleast 20 min 2x daily of relaxation. Kind of like Yoga or something. Between these three I personally know a guy I worked with (my ex-boss) who told me about this, and he says it has cured him 90 percent. He still gets flare ups now and than, but not nearly as bad as they used to be, and dont last nearly as long.

    I apologise I know this was a long long long post. You may have knew about all of this, I dont know. I went a long long time not having any idea what was causing my pain, and thinking there wasn't nothing at all I can do. While my pain is still extremly terrible, I can say that when I do stuff I'm suppose to it does help me a little. My problem is alot of times I wake up in soo much pain, and nothing helps (inc the meds I'm currently on), and I feel like I"m in way to much pain to get out of pain, never the less make it all the way to physical therapy. And the PT hurts a little too, so I cannot even think of adding extra pain. So there are weeks i call and cancel. The PT also only seems to help me if I do my take home stretches she gives me, which take about 20-30 min in the morn, 30-40 in the PM. Its very very hard for me to do these. They reccomend doin them right after your bath, becasue the muscles are warmed up a little that way. I will tell you this. right now my pain is on average about a 7, when I have flare ups it is definatly a ten. Before I was doin all of this, it seemed like I was always flared up, because I was always at a 9 or 10. Now, I can say that when I do flare up, it may only be say 2 days a week. Little by little flare ups started being fewer and farer inbetween, and lasting a shorter time. Dont get me wrong, this is no quick fix, and it seems you definatly get out of it what you put in, but it is something that works. My ex boss who it has helped so much, started doin yoga for relaxation, made sure he strectched atleast twice a day for 30 min minimum, and usually did for an hr at night time, took a hot bath twice a day before stretching, and did the PT twice a week. He was also on good pain management, and had this pain under control, so he weas able to do all of this stuff that needed to be done. Now when he gets flare ups, he may take a perc 5 once or twice a month. Thats all.

    I'm sorry again for the long post. I hope it helps ya. Any questions pleeease dont hesitate to post back.

    Bryan

     
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    Old 02-27-2007, 12:53 AM   #5
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    Re: chronic pelvic myoneurpathy.

    Oh sorry one more thing, I just wanted to make it known that I beleive deep in my heart there is something else that is causing are problems. There has to be an easier way to get rid of them, they just havn't found one. But atleast there is something out there, some way that offers hope. There is a very prominent urologist in NYC who now refers people to a PT who have prostatitis, or cpps, or whatever else all these doctors diagnose this as. There are more and more doctors now realizing its muscle disease. Id post how to contact the Dr, and he will actually talk with you (he doesn't sell anything, nothing costs anything). This guy just dealt with this pain for 20 years, and now that he has his under control, he is more than willing to spread the word. I just dont know if it would be against the rules to post his information.

     
    Old 03-02-2007, 04:50 PM   #6
    youngone00
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    Re: chronic pelvic myoneurpathy.

    Quote:
    Originally Posted by HBMod07 View Post
    You may post the Doctors name, city and state only. You may not post the address, website url or phone number. I hope that helps clear things up for you!
    Yes it does clear things up for me, thank you. The Dr's name is Dr Weiss, hei s located out of Stanford. I beleive thats in CA, he is also the writer of a book about it. Also, the physical therapist I was seeing who you can actually call and she would talk to you is Stacey Futterman, she has her office in New York, NY. She works with some urologist in NYC too, that actually refers people to her. If your interested in this Ruko, let me know. If you want I can see if there is anybody good in your area. I can guarentee you that it will help, and your ins will cover it. I'd actually be excited I'd be able to help you, because I know how helpless and alone I feel with this condition, and also I felt even more helpless when I felt there was no way out before I started this. It definatly does help. \

    Bryan

     
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