<icnmgrjill> Greetings everyone and welcome to the ICN Meet The IC Expert chat for Tuesday August 28th. Tonight we welcome Rhonda Kotarinos. Rhonda first came to my attention several years ago when she came to California to train physicians at Stanford in Pelvic floor work. It just so happens that her patient example was one of my group members who, after the fact, raved about Rhonda's knowledge, techniques and approach to IC. So, we're blessed tonight to have a practitioner who not only understands the complex physiology in the pelvis but she's also totally practical. She knows the muscles and how to assess their health and, best of all, works with patients in a hands on fashion to help improve PFD! Rhonda is in private practice in Illinois.

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<icnmgrjill> Welcome Rhonda!

<rhondak> Thank you for inviting me. I look forward to being able to answer questions and to be as helpful as I possibly can be!

<icnmgrjill> I wanted to begin this chat with a quote from Robert Moldwin's book, "The IC Survival Guide." He emphasizes the role of PFD in IC "is rarely only a bladder problem. Problems in other organs systems are common…one striking example.. is abnormal activity of the pevlic floor muscles, broadly described as PFD. PFD is seen in about 70% of IC patients and can worsen symptoms." Rhonda.. do you agree?

<rhondak> Yes I do in part. But, actually, I believe that all IC patients have PFD?

<icnmgrjill> What is PFD?? Can you explain it for the layman?

<rhondak> It's going to be variable depending on who you talk with. A standard belief, of Dr. Moldwin and others, is that there is excessive electrical activity in the pelvic floor; that the pelvic floor is in spasm. Biofeedback is used to try to help the patient learn how to stop the pelvic floor from being in spasm. Biofeedback is a mechanism where you can monitor how much electrical activity is being generated by the pelvic floor muscle.

<rhondak> The pelvic floor is never electrically silent. It is unique in that it is one of the only skeletal muscles in the body that has electrical activity at all times and the sole purpose of that activity is to maintain continence. Without that activity, we could be incontinent of urine and feces.

<rhondak> So, the approach that many pelvic floor therapists and physicians use to turn off the excessive electrical activity of the pelvic floor will be Kegel exercises while being monitored with biofeedback. The theory is that with maximal contraction of a muscle you will get a maximal contraction. Objective feedback of this activity visible on a monitor facilitates the relaxation process for the pelvic floor.

<rhondak> In my experience, Kegel exercises are not the first line approach to treat the pelvic floor dysfunction of IC. Skeletal muscle has an optimal length for optimal function. If you have a muscle that is too long (overstretched) it will be weak. If you just pushed out a 12 lb baby, your pelvic floor is mostly likely overstretched and weak. Biofeedback is extremely beneficial in that situation to help you locate the muscle and monitor the progress as it strengthens with each active contraction.

Skeletal muscle can also become to short. A muscle that is too short is said to be in a state of contracture. It has the ability to contract, but it will be a weakened contraction with a decrese in its range of motion. A muscle that is too short needs to be lengthened before it can be strengthened. A common example of muscle contracture that most can relate too would be an extremity that has been in a cas. If the arm is broken and in a cast with the elbow fully bent with the hand at the shoulder, when the cast is removed the elbow will be stuck in a fully bent position. Now the biceps muscle is weak because it has not been used for 8 weeks, but it is also too short; a contracture. The biceps would need to be lengthened before it is strengthened. Spasming would not be occurring in the biceps

<icnmgrjill> What does a pelvic floor muscle feel like if it is too short?? What symptoms do patients experience??

<rhondak>To the examiner the pelvic floor would feel stiff and resistant to passive motion. There could also be stringy bands felt running through the muscle. During an exam the patient could feel extreme tenderness as well as variations of pain complaints; sharp, ache, burn stab, etc. Symptoms associated with a short pelvic floor could be a sense of fatigue, things falling out, frequency, urgency, pain with urination, usually a the beginning and end of urination. Pain during intercourse or after (dyspareunia) could also be a symptom.

<icnmgrjill> Sounds like IC symptoms. We have some patients who have tried most classic and alternative IC treatments with little response yet still have symptoms. If they don't respond to treatments yet still have symptoms, could it be that they have PFD instead?? Or at least have PFD contributing to their IC?

<rhondak> Absolutely yes. PT is a simple, safe, and non-invasive approach to management of IC. . A pelvic floor assessment is simple and safe to do. I feel any patient diagnosed with IC, urethral syndrome, frequency/urgency syndrome, vulvar pain syndromes is a candidate for at least a physical therapy evaluation.

<rhondak> In the ideal situation physical therapy and medical healthcare providers will work closely together. If any of the medical management protocols, such as Elavil or Elmiron, etc., are providing any benefit Tthen it should continue while therapy is progressing. Once a patient is symptom free on medication then the goal would be to continue therapy and achieve symptom free status without medications.

<icnmgrjill> So, what should a patient expect if they come to a physical therapist?

<rhondak>My evaluation involves two components: a pelvic exam and a comprehensive musculoskeletal evaluation. The pelvic exam has two components; and internal exam and a computerized muscle assessment .The pelvic exam is focused on assessing the musculature and other pelvic tissues not the organs. The pelvic floor, also know as the levator ani, is evaluated with regards to its function. Can the patient locate the muscle and perform an isolated contraction? Or does she use other muscle groups to assist her in contracting the muscle? This is also known as substitution.. Is there difference from the right side to the left? Are there trigger points in the muscles? Trigger points can be a source of pain as well as cause the muscle to not function properly. The therapist will also assess the ability of the pelvic floor to relax after a contraction. The ability of the patient to do a lengthening contraction from the resting position is also evaluated. This is also known as an eccentric contraction. An eccentric contraction is the motion that is required to initiate urination. During the internal exam the therapist will also be assessing the other tissues found within the pelvis; the connective tissue and the neural tissue specifically.

<rhondak> We're looking for differences from left to right. It's a two- bellied muscle that has two separate nerves that innervate it. So, we often see that it can become very uncoordinated, especially if there has been trauma to one side. For example, if you came sliding down on the ice and hit your right butt, you could really traumatize that side and the right pelvic floor could be more traumatized than the left. This includes the development of trigger points and neural trauma. The key thing is that you're left with an assymetrical pelvic floor, that can severely limit its ability to function normally.

<rhondak> There are also other muscles inside the pelvis that are actually leg muscles. These are closely related to the pelvic floor muscle. So, if you traumatize a leg, you could set up a domino effect that could cause a pelvic floor problem. You need to monitor those muscles as well. Most physicians (urologists, urogynes, gynees) don't even bother to check that group because it is a "leg" muscle and not thought ot be part of their medical speciality.

<rhondak> One other things that we look for is scar tissue. Have you had a baby? Did you had an episiotomy with the delivery? Scar tissue from an episiotomy or a tear can cause problems. They can in and of themselves be sources of pain but they can also cause the pelvic floor to not function correctly. I had one young woman who had never had a child. But at the age of 12 fell on a picket on a fence. While she was being sutured up in the emergency room she recalls the doctors telling her that it was the same type of surgery that they do during the delivery of a baby. Shortly after becoming sexually active, she developed severe frequency and urgency. When she started physical therapy she was urinating every 15 minutes. During the internal exam the scar tissue from that injury was felt and, was again questioned about ever having had a baby. It was not until then that she even remembered the injury. Intercourse had always been painful and she assumed that that was normal and had nothing to do with the scar tissue. Treatment focused on releasing the scar tissue, resolving the trigger points that had developed in response to the poor functioning of the pelvic floor and behavioral modification techniques to desensitize the bladder. When she finished therapy she had no nocturia and was voiding every 3 - 4 hours during the day.

<rhondak> Besides the internal exam, there is also computer assessment. The computer assessment measures the force the pelvic floor muscle generates when it contracts and its range of motion. I utilize the computer to provide objective data to describe the pelvic floor changes as treatment progress. As treatment makes changes, and symptoms are decreasing , repeating the computer assessment provides objective documentation of the improvement in the pelvic floor function.

<icnmgrjill> What else can cause trauma to the pelvic floor?

<rhondak> Well, we've already mentioned pregnancy and delivery. Other things would include falls, motor vehicle accidents, bicycle riding, weight lifting, horseback riding, etc. And, of course surgery. That includes surgical procedures in other areas of the body that are known to refer symptoms and problems to the bladder and pelvic floor. Examples would be an abdominal hysterectomy, appendectomy, femoral hernia repair, or any laparoscopic procedure.

<icnmgrjill> Do you also do an external physical exam??

<rhondak> Yes, I do. It can include evaluating posture, gait, range of motion of the trunk and hip girdle muscles, assessing the abdominal wall and it's strength, and general overall strength and fitness of the individual.

<rhondak> The primary focus of my external exam is a connective tissue and myofascial assessment. This is an external exam to check the connective tissue and muscle tissue for irritable restrictions. There are specific areas of the external body that relates to the symptoms of IC. The tissues in the area of referral will have experienced changes in blood flow, changes in the texture and structure of the skin and subcutaneous tissue, which will include thickening of the subcutaneous tissue and atrophy of muscular tissue. Sir Henry Head mapped out the referral patterns in research published in 1893. The referral areas associated with specific organs became known as Head's zones.

<rhondak> Muscles are evaluated for trigger points. Trigger points in certain muscles can cause referral of problems back and forth between the bladder and the muscles.

<icnmgrjill> Can you define a trigger point?

<rhondak> A trigger point is an area of hyper-irritability in a muscle, usually caused by a muscle that is being overloaded and worked excessively. How does this affect an IC patient? Unfortunately, we do not always know what comes first; the chicken or the egg. Let's assume in this case we do. A patient who has never had any symptoms before develops an awful bladder infection, culture positive. She is treated with antibiotics, as she should be. Symptoms are, as we all know, frequency, urgency and pain on urination. Maybe the first round of antibiotics does not help, so she goes on a second round. They work. But she has now walked around for 2, maybe 3 weeks with horrible symptoms. Her pelvic floor would be working very hard to turn off the constant sense of urge. This could create overload in the pelvic floor. A trigger point develops, that can now cause a referral of symptoms back to her bladder, making her think she still has a bladder infection. Her cultures are negative..

<icnmgrjill> We had a patient who stated that she had walked around with her pelvic floor tight with her knees together for years so that she wouldn't feel like she was going to leak. After ten years of this, her pelvic floor was in horrendous shape. Is it common that patients have poor muscle habits that can cause this??

<rhondak> I don't know what comes first, the chicken or the egg. Any IC patient will have very involved muscle problems from at least the rib cage to the knees.

<icnmgrjill> Does a pelvic floor exam hurt???

<rhondak> A Pelvic floor exam should never be painful unless you have a problem. The pain that can be experienced is variable. Some patients that are so involved, that the light touch of fingers at the vaginal opening can create excruciating pain. Light finger touch is not a burning pain stimulus. What has occurred is that those tissues have become highly sensitized and the sensory receptors have become confused and interpret all stimuli as pain.

<rhondak> If you are in the exam and a trigger point is found, then yes there will be pain when palpating the trigger point. During the exam, we want to confirm that there are trigger points in that area and if somebody doesn't have that excruciating sensitivity that there are treatment techniques that are done on an external basis that can decrease that external pain.

<rhondak> So, if I get a person with IC who isn't capable of wearing underwear because of burning pain in those tissues, I'm not going to be able to work on them internally until I can turn all of that off.

<icnmgrjill> Is it common for patients to have that level of hypersensitivity where underwear is uncomfortable??

<rhondak> In my patient population... yes.

<icnmgrjill> How long can it take to reduce those symptoms???

<rhondak> Once you have diagnosed a patient with a problem, patients will usually have reduced symptoms after 8 to 10 visits. Now that only means reduced symptoms. If they have had problems for 5,10 or 15 years it may take longer for to reverse what is going on. Most of my long- term patients probably take up to a year or year and a half. During this treatment time they are experiencing steady progressive improvement in their symptoms. Frequency of the physical therapy visits will decrease as they get betteer.

<icnmgrjill> What's the treatment??

<rhondak> #1 eliminate all of the external connective tissue restrictions and muscle trigger points that impact on the pelvic floor and the bladder. This is done with manual "hands-on" connective tissue manipulation, myofascial manipulation, and trigger point release. In my practice this may include trigger point injections and various acupuncture techniques that are provided by the physician group that I work very closely with.

<rhondak> #2 the pelvic floor. The primary focus in treating the pelvic floor is to lengthen it so that it can function normaly. Internal manual therapy helps release connective tissue restrictions, release trigger points as well as release restrictions that may be promoting adverse neural tension on the pudendal nerve or its branches. Ideally patients should be seen initially up to as much as 3 times peer week and then reduced frequency as progress is made. As a result of my very high patient volume sessions are weekly for one hour, with my hands on the patient for the entire hour. When you get off the exam table, you shouldn't hurt, but you will feel like you've had a muscle work out.

<rhondak> If you are seeing a PT and you experience increased pain after your treatment, that is not appropriate most of the time. You should talk with your PT about this. The goal is to have you more functional when you leave the office, not dysfunctional. You to feel better that when you came in.

<icnmgrjill> Rhonda.. what you're saying is that patients with pelvic floor muscle problems can respond to therapy but that it will take time and an experienced practitioner to help you through it.

<rhondak> correct

<icnmgrjill> Rhonda.. what mistakes do IC patients often make with respect to their daily lives that could be traumatizing those muscles?? Are there movements that we should avoid??

<rhondak> Yes, I would probably avoid initially any excessive strengthening that pulls your knees together. That's usually knee presses in the health club and butt strengthening exercises. I don't want to give the impression that strengthening exercises are bad, but when trying to fix the shortened pelvic floor it may not be the appropriate protocol to be doing initially. Changes may need to occur before you progress into a full strengthening program. Lunges may not be appropriate. Resting in a squat position can be therapeutic, because it is a position that through neurophysiological mechanisms can help to turn off and lengthen the pelvic floor. Often dropping into a squat position can take "urge" away, but only if it is an inappropriate urge( you just voided 30 minutes ago and have another urge).

<icnmgrjill> Are there any problems with sitting and the pelvic floor?

<rhondak> There can be. There are some people that have increased pain with sitting. They can only sit for five minutes and then they have to get up. Or they just stay there, which would be one of the worst things to do. We don't want you to endure the pain because part of the problem with PFD is that the longer that you do an activity that causes pain, the more your are feeding into the perpetuating factors that sensitize the system..

<rhondak> Another exercise that may cause problems, is abdominal strengthening. If you happen to have a trigger point in the abdominal muscle that attaches to the pubic bone, that trigger point can cause the bladder to be very painful and irritable. Strengthening exercises to a muscle with a trigger point increases its irritability and referral of pain.

<icnmgrjill> What types of exercise are safe to do??

<rhondak> Any aerobic activity that is comfortable for you and does not increase your symptoms, including:

• walking
  
• running
  
• bike riding - in a recumbent seat, not a regular seat
  
• swimming - just be careful to make sure that your bathing suit isn't too tight in the groin area

Stretching is very important and will usually be the focus of the exercise program initially.

<rhondak> And then, as your symptoms are decreasing, you would have to start strengthening exercises.

<icnmgrjill> What suggestions do you have for someone who experiences pain with penetration/ i.e. sex?? Should they wait or go for it??

<rhondak> I wouldn't "go for it" because that would cause pain and traumatize nerve endings and all that kind of stuff. If you're getting treatment by me, we'll reach a point of time where you could have intercourse and it wouldn't be that painful.

<rhondak> But, if anyone is going to try intercourse and penetration is the most uncomfortable, I would suggest that as he is attempting to penetrate, have him stop (not pull out). If you attempt to push him out with your pelvic floor, hold for count of 3-5. Repeat this several times, then have him continue his penetration. Every time you feel pain have him stop and you repeat the gentle push or dropping of the pelvic floor. You will have gotten the pain under control and will be reversing the protective guarding that develops when pain is felt. The next time you try your anxiety will be reduced, because you have a tool that will help the pain.

<icnmgrjill> How can one differentiate between IC pain and pelvic floor pain??

<rhondak> I don't think they can be differentiated. I believe you can't have one with out the other. You can pelvic floor dysfunction with out having pain. There are some patients diagnosed with IC that do not have pain but I feel that they do have pelvic floor dysfunction. The presentation of pelvic floor dysfunction can vary significantly between people. In some cases I feel the "sick bladder" seen during cystoscopy would not have occurred if the pelvic floor dysfunction had been fixed early on.

<icnmgrjill> Lisa M asks... "Can the trauma of too many urethral dilations be healed by PFD or can you reach a point where there is too much damage??"

<rhondak> Yes, you can reach a point where there is too much damage.

<icnmgrjill> What about those subset of patients who find any type of catheterization excruciating. Are they having a muscle spasm or could something else be going on?

<rhondak> Yes, they could be having a muscle spasm or experiencing something called allodynia. Allodynia is when any stimulus is perceived as pain.

<icnmgrjill> Any advice for patients who have trouble with catheterizations??

<rhondak> Just as in intercourse, as the catheters are attempted to being passed through the urethra, try to push it out (as we discussed during intercourse)

<icnmgrjill> Is it common for patients to have set backs during therapy... flares??

<rhondak> Yes and it's not the patients fault that they are having a flare. An example, if you happen to catch a flu bug and are either going through extreme diarrhea or extreme vomiting, those activities can undo short term the changes that we have made in the pelvic floor. Your frequency and urgency, which had gotten better, can come back.

<rhondak> I had a patient who I was just about ready to discharge and unfortunately we became aware of the fact that she had breast cancer. I had not heard from her for more than one year (through chemo and radiation). She called about 18 months after her last appointment complaining of a flare of her frequency and urgency. When we traced it back, it wasn't a flare as a result of stress from being diagnosed and treated for cancer, it was because she had tripped on a rug and fallen down. The fall had activated an old trigger point on her abdominal wall, which then set off her bladder. It took 3-4 visits to release the trigger point and return her to an asymptomatic state.

<icnmgrjill> Is TMJ related to PFD?

<rhondak> TMJ can be found in many patients with any chronic pain problem but I do find it quite frequently in my pelvic floor patients..

<icnmgrjill> What is used in the trigger point injections??

<rhondak> Marcaine

<icnmgrjill> Lisa asks "Is allodynia curable? I have not been able to wear underwear in a year!"

<rhondak> Yes...

<icnmgrjill> Can you recommend home exercises?? or something for patients who can't afford PT?

<rhondak> You could practice getting into a squatting position and doing what I call dropping the pelvic floor. As long as you don't push to urinate when you initiate urination, you are dropping your pelvic floor. You could also do double voiding. When you do sit down to urinate, urinate normally and don't push. When you're finished, try to urinate again for a count of three. You can repeat this 2- 3 times each time you urinate. In time you might notice that your are going longer between voids.

<icnmgrjill> Some people recommend starting and stopping the urine stream... any thoughts??

<rhondak> Do not ever do this

<icnmgrjil> Where can patients find a pelvic floor specialist??

<rhondak> You could try contacting the APTA association for a referral to a physical therapist in your area. Look at the International Pelvic Pain Society membership list: http://www.pelvic pain.org and also the ICN has a list of PT providers that are in the MD (http://www.ic-network.com/md/) resources section.

<icnmgrjill> Can most patients be helped by PT?

<rhondak> Yes, I believe that all IC patients can be helped by physical therapy.

<icnmgrjill> Have you treated any children with IC? Do they have the same pelvic floor findings?

<rhondak> My youngest patient has been 8. She had pelvic floor problems but was never officially diagnosed with IC. Internal work was not done. Fortunately, her mother was a physical therapist and I was able train her in the external treatment techniques. They were sufficient to help her. There is a physician in Joliet, Illinois that feel he has found IC in children.

<icnmgrjill> What is the best chair type for someone with PFD?

<rhondak> What ever is the most comfortable and does not increase your symptoms.

<icnmgrjill> I was wondering if making your child "try" to go before she says she has to can do something to the pelvic floor muscles? My mom did this to me my whole childhood (before we would go anywhere, even if I didn't need to go I would push some out) I found myself doing that to my daughter as well until recently. So my ? is can you hurt your pelvic floor muscles by trying too hard?

<rhondak> Yes, you end up not utilizing the normal reflex mechanisms to void. Doing this for too long , you then end up inhibiting the reflexes and will only void by what is called Valsalva voiding. Long term Valsalva voiding leads to pelvic organ prolapse.

<icnmgrjill> I am recently diagnosed with IC, and not with PFD. However I have considerable leaking, and urinary retention at times during a flare. Could this be attributable to PFD?

<rhondak> Absolutely.

<icnmgrjill> Is it common to feel muscle twitches/spasms in your torso, buttocks and thighs with PFD?

<rhondak> I won't say it is common but it can occur.

<icnmgrjill> I have ic but did not have a problem with leakage until I had cysto/hydro and the dr stretched my urethra. I do Kegels and seem to have strong muscles there but I can not cough, laugh, jump etc.. without leaking. I can not take Detrol and like meds because even the smallest dose makes me unable to urinate. What can I do to help stop the leaking?

<rhondak> You need to be evaluated to see if your pelvic floor is too short.

<icnmgrjill> I have is feeling like I need to have a bowel movement, like I could go any second, but if I sit on the toilet, the urge leaves me. Then later ALL OF A SUDDEN, look out world, race for home, I HAVE TO GO RIGHT NOW. Again, could this be a Pelvic floor dysfunction symptom?

<rhondak> Yes.

About Ms. Kotarinos:
Foremost a clinician, Mrs. Kotarinos is also an author, lecturer and consultant. Her international speaking engagements have included universities, continuing education courses and medical conferences. She is a member of the Board of Directors of the International Pelvic Pain Society, a member of the American Uro-Gynecologic Society (AUGS) and an educational affiliate of the American College of Obstetricians and Gynecologists (ACOG). She is also a past Chairperson and member of the Board of Directors of the Section on Women's Health of the American Physical Therapy Association (APTA).

Mrs. Kotarinos has been a practicing physical therapist since her 1974 graduation from the University of Illinois Medical School. She was awarded her Master of Science Degree from Northwestern University in 1989 where she specialized in Orthopedics, Obstetrics and Gynecology.

Since 1981, Mrs. Kotarinos has owned and operated several independent private practice physical therapy clinics specializing in pelvic floor dysfunction. Her current clinic is located at Rush Medical Center in Chicago, Illinois with a satellite facility in Oak Brook, Illinois.

Contact Information:
Rhonda Kotarinos Physical Therapy, Ltd.
3945 Lakeview Court
Long Grove, IL 60047
Phone: (312) 733-1117
Fax: (847) 726-0016

Related Links:
If you had a web site, we would link it here
International Society of Pelvic Pain - (http://www.pelvicpain.org)
Books & Resources That You Can Purchase That Discuss PFD:
The Interstitial Cystitis Survival Guide By Dr. Robert Moldwin $13/$11.00 for ICN Subscribers

The necessary disclaimer: Active and informed IC patients understand implicitly that no patient, or website or presentation on a web site should be considered medical advice. We strongly encourage you to discuss your medical care and treatments with a trusted medical care provider. Only your personal provider can and should give you medical advice.

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This transcript may be reproduced for personal use only. If you do so reproduce, we ask only that you give credit to the source, the Interstitial Cystitis Network, and speakers, Rhonda Kotarinos, MS, PT and Jill Osborne, MA. For additional use, please contact the ICN at (707)538-9442.