"Ask Doctor P."InContiNet gets lots of interesting mail -- often from isolated individuals who fear they are the only ones on the earth with the same afflication! We've collected some of the more interesting letters, and answers from our webmaster, "Dr. P" -- Dr. John Perry, the inventor of the EMG biofeedback system used to treat pelvic muscle disorders. Where confidentiality is required, we've disguised the author's identify to avoid embarrassment to individuals. But the facts are exactly as reported. Check out the letters below -- you may find someone has already asked your question!
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Diathermy for Levator
Syndrome?
How to Use
the Regain Home Trainer?
Hysterectomy
for Rectal Pain????
Imperforate Anus
Incontinent
After Prostate Surgery
Incontinence
after Rotorooter Job
More Levator Syndrome
Nocturnal Enuresis
Orgasm Problems
Sexual Problem:
Prostate?
Tethered spinal cord
Vulvar Vestibulitis
If these topics don't speak to your
concern, why not
ASK Dr. P. a new question?
My husband has been incontinent for seven years following prostate surgery. At present he uses a McGuire urinal which he likes better than pads. His urologist has suggested that he have an AMS Sphincter 800 implanted. The video from the company looks great but I fear it is one-sided. Does anyone have information about this prosthesis? We would be grateful to hear about anyone's experience. Thanks.
Dr. P. replies:
It would be tragic if your husband had an implant before trying modern EMG biofeedback,
as described on the incontinet website. Most people can be helped or cured by EMG
biofeedback. On the other hand, your surgeon will be out about $5,000 so don't expect him
to be excited about it or to recommend it.
The artificial sphincters are very good, but they have about a 20% failure rate (last I
heard). They are definately the alternative of last resort, since once attempted,
the only other future alternative is a drainage bag, forever. There are lots of good
therapists in California; send me your ZIPCODE and I'll try to locate one near you. Or
look in our Registry of Incontinence Professionals (via our home page)
On the 26th of Jun I am scheduled for a rectocele/total hysterectomy. My intial complaint that has brought me to this point was rectal pain. I have been diagnosed with Levator spasms which are brought on by intercourse, jogging, extending periods of sitting. I have had a uterine suspension in '94, two children the last in '93. The first birth I had a 4th degree lateral tear into my rectum with the episiotomy. My pain started at the end of '94. I felt it was related to my uterine suspension. The doctors say there is no way to tell. That one thing has to be ruled out at a time.
I am very scared. They have agreed to take out my uterus with no
guarantee. They must do this abdominally and the risk of death is greater through this
procedure. I do not know what to do at this point. My proctologist could not tell me if
the pain could be related to the uterine suspension and has recommended the basic
manipulation of the levator muscle and then electrical stimulation. Regardless I will be
going in to have the rectocele repaired. Please advise. Will having this surgery set me up
for more problems in this area? I am so confused. -- Norfolk, VA
Dr. P. Responds:
1. There is absolutely NO reason to have a hysterectomy of any sort for this condition,
especially if the surgeon won't even guarantee that it will solve your problem! There are
several good and readable books on hysterectomy at any good bookstore; I strongly suggest
that you do NOT allow a hysterectomy until you have read at least one of them. I
personally recommend "Hysterectomy: Before and After" by Winnifred Cutler, but
there are many good ones.
2. Your proctologist is a little behind. Did you read the articles on our website about
levator syndrome? EMG biofeedback is much more effective than electrical
stimulation, and you would be very foolish to have a hysterectomy without trying the safer
procedures first. Levator spasms often start as a result of irritation from scar tissue,
which is inevitable after any surgery. If you try to pretend that the scar-tissue pain
isn't there, your mind looses control over the muscles and spasms result. With biofeedback
training you are forced to AND enabled to regain control over the muscles, and fairly
quickly, the spasms go away.
3. You probably should get the rectocele repaired. Yes, you will have more problems, but
the rectocele needs to be fixed. You should, however, try biofeedback therapy for the
levator syndrome FIRST; it will be much more difficult to learn after another surgery.
I have a male friend (seriously) who has been experiencing a
sexual problem for the last six months. I've extensively searched online for information
on his specific problem and my searching led me to you. I hope you can shed some light on
this. I told my friend I would check out information online.
This is his problem. During sex he is having difficulty getting a good erection. He gets
an erection, but it's not a strong one. Then when he ejaculates his seminal fluids are
drastically reduced from what it was prior to 6 months ago. He described to me that the
"white" semen is mostly clear. As he termed it, he used to ejaculate "in
buckets". He has no pain or discomfort of any kind.
Last night I got online (into a chat room of people age 50 and over) and I seriously spoke
with them about this. The chat room was my preliminary search. Many of the men were
helpful, but they took the conversation to the topic of impotence.
Then I searched extensively for info on impotence since I'm not knowledgeable of the
subject. Lack of a strong erection is one of the symptoms, however I wasn't able to locate
any other information on the rest of his symptoms. The men in the chat room also suggested
that he see a urologist. I am going to strongly suggest that to my friend.
After checking out some of the topics on impotence I know that many things could cause it,
from stress or high blood pressure to a physical disease such as diabetes. Dr. Perry, do
you have any insight for me on this? I really appreciate any information you could give
me. He is really bothered by this.
Dr. P. replies:
The men in the chatroom are right; your friend should see a Urologist. The most likely
problem would be the Prostate Gland, which causes trouble in, I think, 1/3 of men over 50.
It is probably responsible for the "white" portion of the fluid, and the
reduction may be a sign that the prostate isn't working. Since prostate troubles can be
benign or cancerous, prompt medical evaluation is essential to find out how serious it
might be. (By prompt, I mean THIS WEEK.) There are many different treatments with
differing degrees of side-effects.
The lack of full erection may be related, or be caused by some other problem (stress,
blood pressure, or diabetes); or it may be a relatively normal function of aging. It, too,
should be discussed with a urologist.
He should be aware that there are extensive resouces on the internet for men with prostate
problems and/or cancer, including an email list that is VERY active. Use a webcrawler to
seach for "prostate".
HAVE URGE & STRESS,FOLOWING 2 CRYO's & 1 ROTOROOTER JOB.
HAD 7 COLLIGEN INJECTIONS NO HELP ! ARTIFICIAL SPHINCTER ??? DONT LIKE THE EXTRA PLUMBING
IN MY BODY. DR STAMEY IN CONN HAS AN OPERATION THAT MIGHT HELP, DO YOU HAVE ANY INFO ON
HIS OPERATION OR KNOW OF ANY OTHER FIXES? TIME MAGAZINE 7/22/96 REPORTS "NEW
OPERATION IN WHICH A MUSCLE FROM THIGH IS WRAPPED AROUND THE URETHA" DO YOU KNOW
ANYTHING ABOUT IT? ANY ASSISTANCE APPRECIATED JOHN
Dr. P. replies:
The success rate for collagen injections after prostate surgery is quite low. The
artificial sphincter is very expensive, and it is quite irreversible; it depends in part
on how long you hope to live. Eventually, the sphincter cuff erodes the urethra, and you
are forced to use a collection bag. The use of relocated thigh muscles to perform
sphincter functions was pioneered by colorectal surgeons. The tactic seems quite good (for
the most serious cases), except that EMG biofeedback is virtually required to teach the
owner how to use the pld muscle for a new purpose.
You didn't say anything about your experiences with EMG biofeedback, which is the
recommended therapy for first line of attack. What has been your experience with
biofeedback? Did your physicians recommend it to you? Did you read the articles about it
on our website? It is important to consider less dangerous methods first.
We are using a Regain home trainer, with limited success so far.
Part of the problem is I never have used biofeedback in conjunction with PC muscles
before. My patient, "CS", is a more than willing subject and quite enthusiastic
about the process. The most interesting observation so far is: CS has almost
"no" awareness of her PC muscle. It is nearly always in a totally relaxed state.
That's not surprizing, and it is a fortunate finding. It means you have a good
starting place, because you've identified an abnormality. Sensation inevitably increases
with practice of exercise. She may not "feel" it at first, but the feedback will
show her that she is finding the correct muscle.
Please give me some pointers on the optimal use of this system for
CS. What is the optimum position that the patient should take when doing the feedback with
the vaginal insert? We are trying: standing, supine with legs horizontal, and supine with
knees raised. Each gives varying degrees of results. What I'm interested in is the optimum
position to train CS in the perception of when the muscles are being used and when they
are not.
We usually train seated in a comfortable reclining chair, at least at first; later,
if necessary, use other positions. I don't think you can train for perception; train for
strengthening the muscle, and the perception will follow. How is her vaginal sensations
and sensitivity?
It appears that CS can approximate a PC contraction by either
contracting her "abs" or by squeezing her thighs together (adduction). This may
be because of an incorrect position for doing the feedback sessions.
This is very common and basic in PC work. We recommend that the knees be kept 6-8
inches apart; any movement of them towards each other is a sign of adductors and should be
eliminated. We recommend that the belly be depressed by the patient using one finger, half
way between the navel and the pubic bone. When relaxed, she should be able to depress the
finger into her flesh. Then, when she contracts, the finger should NOT move. If her abs
tighten, the finger will be pushed outward; another sign of incorrect muscles. It may take
many sessions before she gets good isolation. You should concentrate on sub-maximal
contractions with good isolation, given what you've said.
I'm also interested in some initial settings for someone whose PC is
nearly always in a relaxed state. I'm presently using: 5.0 uV for Contract goal and 3.0 uV
for the Relax goal. It seems as though both goals are too high. But rather than "wear
out" CS with a number of trial and errors - I wondered if your experience can offer
some suggestions.
Ideally, the "evaluation" should be done on an office system which gives you
better numbers for what she can and can't do; then you set those numbers into the Regain.
Without that, you'll have to guess. don't be afraid to set it lower (such as contract 2,
relax 1) at the beginning. This is behavior therapy; the patient should be able to reach
the goal about 80% of the time. Don't demand resuls right away; play with the settings.
Let her have fun trying. Many patients are unsure at first and then, after 1, 2, 3, or
even 4 weeks they suddenly start to "get it", and then make good progress each
week. You might check the several articles about Kegel and exercises on my website for
additional ideas.
A visitor asks: I have a 13-year-old child with
nocturnal incontinence only, as a result of needing to take lithium together with anti
psychotics. I need a device that will wake him up enough times a night to allow trips to
the bathroom to replace bed sheet washing. We presently wake him up 4 times/night. I need
a device that will wake up a heavy sleeper--maybe a vibrating alarm worn on the wrist?
Dr. P. replies:
We have had excellent results with the "Wet-Stop(tm)" made by
Palco Laboratories, 1595 Soquel Drive, Santa Cruz, CA 95065. (1-800-346-4488) It consists
of a moisture sensor which is sewn into the underware, and an alarm which is sewn on the
sleeve of a tee shirt. That's a little work, but heck, the price is very good (can't
recall, but definitely under $100).
It is extremely unhealthy (for YOU) to get up that often; it will soon have a detrimental
effect on your own mind! So you want to work on this one quickly!
The Wet-Stop includes excellent if simple behavioral instructions for training. I would
recommend you start with this level of device before going for the more expensive ones.
You can pay up to 20 times a much, but why buy a print shop if all you really need is a
typewriter?
I hope you will also investigate the references to enuresis on our website, and find the
links to the Tri-State Inc. Support group, which has excellent information.
In addition, join InContiList (instructions on our home page at
www.InContiNet.com). Someday very soon I promise to complete our essay on treating this
problem as "near-hyperactive-syndrome". Basically, we found that many children
do NOT empty completely before going to bed.
If you ask them "did you pee before going to bed?", they are likely to answer
"yes" -- meaning that they stood over the toilet and counted to ten.
But if you ask them "HOW MUCH did you pee?", they are likely to report that they
in fact "didn't have to go" --- as nothing came out.
Children think that peeing is automatic, and it comes out when it has to. If nothing came
out, they think they really didn't have to go. They are not aware of the role of
sympathetic activation in preventing urination, and have no sense of how to
"relax" and let it flow.
Another problem with young boys is that they think, quite erroneously,
that they Have To Stand Up in order to pee. That's NOT conducive to relaxing, which is
required to pee.
With one child, we developed a "journal" technique. After normal bedtime
toileting, he was required to SIT on his bed for 15 minutes and write down the entire
day's activities in his journal. [There was nothing magical about the journal; it was to
FORCE him to sit quietly and relax!]
After completing the journal, he was required to go one more time to urinate, which he
did. He started having virtually every-night accidents. For three weeks, the kid didn't
have a single accident at night! Then, in the last week before his appointment, he had
five accidents.
When we examined the journal, we noticed that the variety of pens and entries for the
first three weeks was gone during the fourth week. Upon careful but intense questioning,
the child admitted that all of the fourth week's entries were written the single night
before the appointment; he had just "gotten behind" in his "homework".
When his parents double-checked the journaling every night, there were no more accidents.
This amounted to an A-B-A experimental design for this child's nocturnal enuresis, which
we call "near-hyperactive-syndrome". Given your comments about the drugs your
child is already taking, it seems likely that he fits this pattern.
My doctor recently referred a patient to our dept for SWD to the levator ani. The PT dept is obviously resistant to comply without discussion with him. Subsequently we learnt from him that he has recently returned from the Mayo clinics in USA, where folks there were using SWD probe in the anus for levator ani spasm. We have no literature on this, although our Bosch catalogue does show that diathermy probes for these body cavities are available. All the same, the PTs are very sceptical about this.
Dr. P. replies:
In my experience (as a physiological psychologist specializing in pelvic muscle problems) the track record for various kinds of stimulation of the muscle in levator syndrome is pretty poor, probably because such stimulation effects only the muslce itself, leaving the cause of the problem untouched.
EMG biofeedback, on the other hand, has a very high success rate. The clue
is that many patients are unaware of the actual spasms (in spite of their great magnitude)
because they have turned off proprioception there and the muscle is actually fibrulating
out of control. With biofeedback, one teaches the patient to become MORE, not less,
conscious of the muscle and its activity, thus bringing it (back) under conscious control.
This has been called the "sensation-perception" theory of pain.
If the patient blocks the pain at the (lower) sensation level, the muscle can fibrulate.
But if the pain is blocked at the (higher) perception level, the muscle remains stable.
The way to tell is by EMG biofeedback with computerized videograph displays. The display
must be able to show "spikes" without smoothing them out. You wait until there
is a spike (spasm) and ask the patient "did you feel that?" Invariably they say
that they did not. After a few minutes, the spasms begin to register in the conscious
awareness (again), and gradually the patient reports "feeling" more and more of
these spasms. Of course at the same time, they become less frequent. It is important to
explain to the patient that these spikes indicate actual physical contractions of
significant magnitude, and that their inability to perceive them is a learned function
(and a bad habit at that.)
It helps to have the patient doing biofeedback-assisted Kegel exercises (submaximal), with
emphesis on "control"; i.e., rapid transition from contract to relax and v-v.
Additional material on treating levator syndrome is posted at our website.
I have suffered with Levator syndrome for seven years. Your article about the treatment of chronic pelvic pain describes my condition to a "T". Would you send me the names of practitioners in the Connecticut area. I really need help in at least easing the discomfort I have been living with since 1989. Thank you for your consideration.
Dr. P. replies:
You are in luck! There are two nearby facilities that can probably help you. Try Lisa Curley, PT, or Lisa Pane, PT at PT of South CT, 111 New Haven Ave, Derby, CT 203-735-8336 or Janet Hartery, PT at Sports Training PT, 66 Glenbrook Rd, Stamford, Ct (no phone number available). I suggest you call and speak directly to the therapists. Decide who seems best to you. If they are not expeienced with this problem, they can call me for help.
I am 20 years old and am currently suffering from Vulvar Vestibulitis Syndrome. Next week on June 28, 1996 I will have surgery for this problem. I am very nervous and I did not know if there was any one out there who has had this surgery or has any advice. Thank you. --- Raleigh, NC USA
Dr. P. Writes:
Did you read the VV article by Dr.
Howard Glazer on our website? It is by far the most
popular article we've posted. For the past YEAR, more than 20 people a day, on AVERAGE,
have read his article about biofeedback
treatment of Vulvar Vestibulitis.
I'm not sure what sort of surgery is being proposed, but I certainly would be nervous
about surgery unless I had exhausted all other alternatives first. Have you? Have you seen
the "informed consent" form that you will be asked to sign just before surgery?
Does the surgeon have you sign away your rights? Will you lose some or all of your sexual
response? What is he guaranteeing you? There are a lot of good biofeedback specialists in
the R-D area who could help. If you want further help, ask.
I learned about this website today after I received the NY Times story published May 30. Due to a tethered spinal cord at birth, my five-year-old son now experiences urinary and fecal incontinence. We are currently using a catheter four times a day to empty his bladder, and are in the process of determining a bowel management plan. I would love to be in contact with parents of children who have similar issues. My son is ambulatory and has no other effects from the spinal defect. I would appreciate information on how to find a more specific site for support of any kind.
As you may have picked up from my message, my son's condition is very rare. Usually these types of disabilities are found only among the severely handicapped. So we have an unusual situation. Our kid is bright, well-coordinated, very "typical." But he's at the age that society in general will be none too forgiving if we do not find ways to manage his incontinence. Thanks for your response. I hope I find other parents out there. --- Cambridge, MA
Dr. P Writes:
While I am not familiar with the exact condition of your son, I do know that many children suffering from various birth defects have been successfully treated for incontinence using modern biofeedback training methods. Usually we wait until a couple of years older (7-8) but not always. Have you looked into the options? If you don't know anyone else, try Dr. Bruce Masek at Boston Children's Hospital, 617-735-6730. There are many other specialists in the area of children with birth defects affecting incontinence.
My 10 month old son was born with high imperforate anus with a
prognosis for fecal incontinence. His surgeon, Dr. Alberto Pena, from Schnieder's
Childrens Hospital in New York, reccommends a bowel management program using daily enemas
instead of diapers. I would like any comments on this approach. Also, anyone who suffers
from incontinence due to imperforate anus or hirschprungs, this webpage may be of
interest. http://members.aol.com/pullthrunw/Pullthru.html
--- Seattle , WA USA
Dr. P. writes:
Thank you very much for the link to the pullthru group. We were in touch with them before, but got disconnected when we moved to florida three years ago. We will check out their link and post a cross-link to it soon.
I can't speak to Dr. Pena's management approach, but we have worked with him for several years on the EMG rehabilitation biofeedback that may help your son when he gets a little older.
I have a concern. I am a 35 year old healthy white male. I have been divorced for 3 years. I feel good about myself however when I have a difficult time achieving an orgasm with or without a partner. This has persisted for atleast 3 or 4 years. I assumed it was a psychological problem stemming from a bad relationship. I have been patient and optimistic with myself and I believed that over time the problem naturally rectify itself. I dont seem to have any sex drive. It is difficult to achieve orgasm with a partner or through masterbating. To achieve an orgasm I have to tense the muscle of my entire body up I am in good shape and women find me attractive but I am reluctant to try for any sexual involvement because even though my thoughts are willing my body just doesnt want to.
I use to think that I was afraid of women but I have sinced
realized that I have been using that as an excuse for not being able to acheive an orgasm.
Whether I am with a woman or not, achieving an orgasm is difficult. I am concerned because
I believe that the problem is not pschological anymore but maybe physical. Do I have
delayed ejaculation or inhibited sexual desire. I have read about these dysfuctions, and
they are usually attributed to some thing psychological from a bad relationship. Not being
able to materbate easily tells me that it might be something more. I would greatly
appreciate your insights and advice. Thank you.
Dr. P. replies:
It is possible that all of these problems are related to not having a good
relationship, and, in addition, you appear to have developed bad muscular habits (tensing
all muscles) that only make it worse. Yes, it might go away by itself.
But if you are concerned, then you should make an appointment with a Urologist who
specializes in sexual dysfunctions, or other sex expert. There is one doctor that I have
heard of in Tokyo: Genichi Nozue, MD, Kitaaoyama 2-11-10, Minatoku, Tokyo, Phone
3-3401-2581. I do not know him personally, but he has good credentials. I strongly
recommend you check him out and see what he thinks. Good Luck!
(In most countries there is at least one professional organization of sexologists who
specialize in these problems. Use your web crawler to search for "sex therapy",
etc.)
Copyright 1997 by Incontinet. This page is http://www.incontinet.com/askdrp.htm
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