I went to the Stanford clinic 2 months ago, have been following their protocol and receiving PT ever since but am not better. 2 weeks into PT I had a few days that were pain free and my PT couldn't find any more internal trigger points. Past month I had regressed and symptoms of perineal pain and recurrence of trigger points has been relentless. I'm not stressed, I relax often, take hot baths, avoid sitting, I don't know why I can't resolve this. When I was at the clinic I had deathly painful internal TPs but could never reach or find them myself and after lots of attempts at my own internal work my fingers still cannot locate them. Should I get a tool or is internal self treatment dangerous? Can things really be that far in that they are unreachable? My problem areas are in the front primarily to the sides of the prostate. Thanks,
Matt
PT not Working
PT not Working
Age:25 | Onset Age:24 | Symptoms:anterior levator ani pain, pain w/ sitting particularly, urinary symptoms | Helped By: ? | Worsened By: stress and worry
Re: PT not Working
Hi Matt,MattK wrote:I went to the Stanford clinic 2 months ago, have been following their protocol and receiving PT ever since but am not better. 2 weeks into PT I had a few days that were pain free and my PT couldn't find any more internal trigger points. Past month I had regressed and symptoms of perineal pain and recurrence of trigger points has been relentless. I'm not stressed, I relax often, take hot baths, avoid sitting, I don't know why I can't resolve this. When I was at the clinic I had deathly painful internal TPs but could never reach or find them myself and after lots of attempts at my own internal work my fingers still cannot locate them. Should I get a tool or is internal self treatment dangerous? Can things really be that far in that they are unreachable? My problem areas are in the front primarily to the sides of the prostate. Thanks,
Matt
Try some searches on this forum for "wand" or "crystal wand." You should find what you're looking for there. Basically, using a wand should not be dangerous.
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy; pubic/prostate/perineal discomfort; Helped by: trigger point therapy, Afrin nasal spray, Cymbalta, hydrocodone (small doses), distraction. Makes worse: sex.
Not medical advice. Consult your doctor.
Not medical advice. Consult your doctor.
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scoobysnacks
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After two months I was not much improved either. On the scale of things, your journey is 2% complete. However, I believed in the SP based on what I experienced at the clinic, so I stuck with it, and I continue to stick with it. Got to see the big picture.
I had very painful tps at the clinic too. Are you mimicking what Tim did. I made him explain in great detail and then I tried it at the hotel one night to make sure I could reproduce and mimic. I was successful.
Sounds to me you need to go see your PT again. From your post it almost seems you were pain free, stopped PT, etc., so of course you are having a relapse. You can't get rid of this in a few weeks.
Good Luck,
Ss
I had very painful tps at the clinic too. Are you mimicking what Tim did. I made him explain in great detail and then I tried it at the hotel one night to make sure I could reproduce and mimic. I was successful.
Sounds to me you need to go see your PT again. From your post it almost seems you were pain free, stopped PT, etc., so of course you are having a relapse. You can't get rid of this in a few weeks.
Good Luck,
Ss
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex
thanks for replies. No I never stopped PT which is what is perplexing. 2% complete! I've been resting up for 2+ months, you think it will take over 4 years for this to go away?! I began having symptoms 5 months ago and treating 2.5 ago, it doesn't seem like I should be in that deep. I have not had times of stress lately and have been getting exercise but laying low most of the time so I feel like I should be fast recovering right?
Age:25 | Onset Age:24 | Symptoms:anterior levator ani pain, pain w/ sitting particularly, urinary symptoms | Helped By: ? | Worsened By: stress and worry
Also, no I could never reproduce Tims trigger point finds. They were all anterior and fairly high next to the prostate out of my reach even after practice.
Age:25 | Onset Age:24 | Symptoms:anterior levator ani pain, pain w/ sitting particularly, urinary symptoms | Helped By: ? | Worsened By: stress and worry
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Sleeper Service
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scoobysnacks
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have you tried sitting on the toilet, arm running down inner thigh with forearm on inner thigh and going that way, middle finger palm down, not up. I can get very far up anteriorly this way. Actually I dont think I can much higher this way I seem to hit a wall of muscle.
I am not saying 4 years literally, I cannot determine when you will heal, my point was that you have just scratched the surface after only 2 mos removed from the clinic and I think your are getting frustrated WAY to early. As Wise said, this is not a fast approach. He told me to committ to a year and then ask whether I am better now than I was when I went.
I can certainly answer that question with a HELL YES. I am not 100%, but I dont think about that anymore. I think about dealing with this and continually improving my quality of life. For instance after sitting all day at work, all I could do was rush home and sit in hot water and take Aleve (naproxen). Today I'm meeting my workout partner for a chest/tri workout. Do I have a little uncomfortable feeling down in the pelvis, a bit, is it keeping me from enjoying life anymore, NOPE. I hope this helps in sowe way.
I suspect your PT is not able to do what Tim Sawyer can do, dont feel bad, I dont think many of them can. Tim found my areas within minutes of listening to my complaints.
Take care,
Ss
I am not saying 4 years literally, I cannot determine when you will heal, my point was that you have just scratched the surface after only 2 mos removed from the clinic and I think your are getting frustrated WAY to early. As Wise said, this is not a fast approach. He told me to committ to a year and then ask whether I am better now than I was when I went.
I can certainly answer that question with a HELL YES. I am not 100%, but I dont think about that anymore. I think about dealing with this and continually improving my quality of life. For instance after sitting all day at work, all I could do was rush home and sit in hot water and take Aleve (naproxen). Today I'm meeting my workout partner for a chest/tri workout. Do I have a little uncomfortable feeling down in the pelvis, a bit, is it keeping me from enjoying life anymore, NOPE. I hope this helps in sowe way.
I suspect your PT is not able to do what Tim Sawyer can do, dont feel bad, I dont think many of them can. Tim found my areas within minutes of listening to my complaints.
Take care,
Ss
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex
A couple of things:
1) I bought a wand similiar to the crystal wand named "ez-wand" when I visited Marilyn Freedman. She likes it and I bought one in case I needed it.
2) My problem areas are in the anterior levator area also. These are hard to get to and I never could find anything myself with the toilet seat or arm-around-and-under-the-leg posture. However, Marilyn showed me how to get to these using my thumb. Basically, you lay on your right side, take a gloved, lubed thumb on left hand and insert into rectum. Rotate the thumb downward feeling for the prostate - hard to miss as the feeling it generates when pressed. Then move around to the right edge of the prostate and move outward in 1/4" increments. I was able to find my anterior ones doing this. Marilyn was able to reproduce intense pain after pressing on these areas herself.
--mb
1) I bought a wand similiar to the crystal wand named "ez-wand" when I visited Marilyn Freedman. She likes it and I bought one in case I needed it.
2) My problem areas are in the anterior levator area also. These are hard to get to and I never could find anything myself with the toilet seat or arm-around-and-under-the-leg posture. However, Marilyn showed me how to get to these using my thumb. Basically, you lay on your right side, take a gloved, lubed thumb on left hand and insert into rectum. Rotate the thumb downward feeling for the prostate - hard to miss as the feeling it generates when pressed. Then move around to the right edge of the prostate and move outward in 1/4" increments. I was able to find my anterior ones doing this. Marilyn was able to reproduce intense pain after pressing on these areas herself.
--mb
Age: 45; Onset: Jan 2007; Initial | Symptoms: perineal, pubic, penile, right testicle pain, pain while sitting; Current | Symptoms: 95% better; very seldom do I have pain now; caffeine was the culprit; Helps: No caffeine (even decaf), Red tea, Getting exercise, Pure Encapsulations Nutrient 950 multi-vitamin; Hurts: Caffeine, sometimes when my l5s1 back issue acts up.
anterior levator ani trigger points are difficult to reach for many people; unfortunately many of us have these as problems. 2 months is a short time to see improvement. Give it at least a year. I have been following the Stanford/Wise-Anderson Protocol for 4 years and am much improved but not cured. Of all the PTs I have seen, Tim Sawyer was the only one who could reliably reach the anterior levator ani. Don't give up yet. Call Dr. Wise if you are getting frustrated. A pep talk from him can give you hope even when you are feeling hopeless.
Age: 39 | Onset Age: 32 | Symptoms: urethral burning, increased urge to urinate, pain after sex, rectal fullness, now much better 6 years into Stanford/Wise-Anderson Protocol | Helped By: PT(trigger point therapy), paradoxical relaxation, valium, hot bath, stretching, Theracane | Worsened By:too vigorous sex, skipping stretches and daily relaxation
GS,
Since you are in NJ, did you see Marilyn Freedman?
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Since you are in NJ, did you see Marilyn Freedman?
--mb
Age: 45; Onset: Jan 2007; Initial | Symptoms: perineal, pubic, penile, right testicle pain, pain while sitting; Current | Symptoms: 95% better; very seldom do I have pain now; caffeine was the culprit; Helps: No caffeine (even decaf), Red tea, Getting exercise, Pure Encapsulations Nutrient 950 multi-vitamin; Hurts: Caffeine, sometimes when my l5s1 back issue acts up.
no, I never saw Marilyn Freedman. I saw several PTs in Manhattan. I no longer need regular internal treatment.
Age: 39 | Onset Age: 32 | Symptoms: urethral burning, increased urge to urinate, pain after sex, rectal fullness, now much better 6 years into Stanford/Wise-Anderson Protocol | Helped By: PT(trigger point therapy), paradoxical relaxation, valium, hot bath, stretching, Theracane | Worsened By:too vigorous sex, skipping stretches and daily relaxation
I can certainly answer that question with a HELL YES. I am not 100%, but I don't think about that anymore. I think about dealing with this and continually improving my quality of life. For instance after sitting all day at work, all I could do was rush home and sit in hot water and take Aleve (naproxen). Today I'm meeting my workout partner for a chest/tri workout. Do I have a little uncomfortable feeling down in the pelvis, a bit, is it keeping me from enjoying life anymore, NOPE. I hope this helps in sowe way.
Loving the talk. I try to be positive as I hope most of my posts reflect. This is how I live with CPPS. And I tell you now with no word of a lie - I have improved as a person and developed so much character since I came down with this.
Age: 29 | Onset Age: 26 | Symptoms: initially severe burning throughout pelvis - much better; muscles spasms all over region, back pain, chronic IBS (much better) | Helped By: Psychotherapy, SP stretches, swimming, accepting the condition (understanding there is treatment); stress/anxiety management; possibly basic quercetin; valerian root, vit B & calc & magn supplements; gluten avoidance & especially dealing with chronic constipation. | Worsened By: stress / anxiety, too much sex; repressed emotions; personality goodist traits. 80% better
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chrisjiujitsu
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My main source of pain is about 7 inches internal. I am wondering why they would have missed that at the clinic. I thought they were supposed to catch everything. I don't think it will hurt you to do some exploration internally, I couldn't reach anything with my finger. I would be very careful, just focus on finding the pain first and takes things slowly.
Personally I have done internal work on an area that I am talking about. I am not sure if it is going to make me better, sometimes I feel more relaxed after, sometimes not. Next year I am getting checked out for meatal stenosis, which a recent doctor was sure I have.
Personally I have done internal work on an area that I am talking about. I am not sure if it is going to make me better, sometimes I feel more relaxed after, sometimes not. Next year I am getting checked out for meatal stenosis, which a recent doctor was sure I have.
Age: 26 | Onset Age: 20 | Symptoms: Used to be pain around the base of the penis, now I have golf ball in rectum feeling that can be very painful. | Helped By: kegal exercise/biofeedback (fixed ejaculation pain), antiinflamatory drugs, warm baths (intermediate term relief), hamstring stretching (very short term relief), the biggest being stress management | Worsened By: Stress, Standing for long periods, ejaculating used to make it worse, but not anymore
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LifeInTurmoil
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Hi MattK!
Please read this reply that I sent to Calguy earlier:
Good going!! Stick with the therapy and you WILL get better!! I have been going to therapy for quite some time and do feel MUCH better than when all this started 4 years back. I didn't start my therapy for about 2 years after this began for lack of finding a good therapist so my condition had a chance to really "dig in" on me. I believe like most guys here that the sooner you start therapy, the sooner you will get better and possibly need even less therapy than we late starters. Do not let anybody convince you that you are going for too much therapy and cause you to stop too soon! Once I was told by a therapist that receiving too much internal therapy would negatively "retrain" my pelvis muscles. She didn't know her "ass from her elbow!!" It turned out that she was more interested in appeasing my insurance company than helping me get better!! Once I found the RIGHT therapist, things starter to improve. Stay well!!
I have already received upwards of 120 internal treatments. It took me quite some time to see ANY improvement even after finding a really great and understanding therapist. I myself am also thinking of buying the Crystal Wand to do some of my own internal work just to maybe help speed things up a little more. Everyone's body is different. Some guys are very lucky and get positive results right away. Others, like myself require much therapy to even see any positive results at all. I know that most guys here cannot afford to go to therapy for very long. I myself have been lucky to have insurance that, so far, has covered me in all these treatments, not completely without some questions though! I believe that if you can afford to go to therapy for as long as it takes, you will eventually start to see good results and get much of your life back in order. The Crystal Wand and some external TP work is probably a good addon/alternative for those of us with financial difficulties. Don't get too discouraged and give up because you WILL get better and we are all here to help see you through it!! God bless!!
Please read this reply that I sent to Calguy earlier:
Good going!! Stick with the therapy and you WILL get better!! I have been going to therapy for quite some time and do feel MUCH better than when all this started 4 years back. I didn't start my therapy for about 2 years after this began for lack of finding a good therapist so my condition had a chance to really "dig in" on me. I believe like most guys here that the sooner you start therapy, the sooner you will get better and possibly need even less therapy than we late starters. Do not let anybody convince you that you are going for too much therapy and cause you to stop too soon! Once I was told by a therapist that receiving too much internal therapy would negatively "retrain" my pelvis muscles. She didn't know her "ass from her elbow!!" It turned out that she was more interested in appeasing my insurance company than helping me get better!! Once I found the RIGHT therapist, things starter to improve. Stay well!!
I have already received upwards of 120 internal treatments. It took me quite some time to see ANY improvement even after finding a really great and understanding therapist. I myself am also thinking of buying the Crystal Wand to do some of my own internal work just to maybe help speed things up a little more. Everyone's body is different. Some guys are very lucky and get positive results right away. Others, like myself require much therapy to even see any positive results at all. I know that most guys here cannot afford to go to therapy for very long. I myself have been lucky to have insurance that, so far, has covered me in all these treatments, not completely without some questions though! I believe that if you can afford to go to therapy for as long as it takes, you will eventually start to see good results and get much of your life back in order. The Crystal Wand and some external TP work is probably a good addon/alternative for those of us with financial difficulties. Don't get too discouraged and give up because you WILL get better and we are all here to help see you through it!! God bless!!
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