About

Member has chosen to not make this information public.

Groups (1)

Pages

Member not yet following any Pages.

Posts (8)

Jan 15, 2017 · Right Sided Groin Pain In Female. Muscle Or Nerve Damage? in Brain & Nervous System

@leigho55 I know the whole process can be frustrating. I’m sorry you might feel bereft, or even excluded by some docs.
After more than a year of pain, I spoke with a man in a wheelchair. I explained to him how I just woke up November 8th, 2015, and – for no reason – could no longer walk. The man in the wheelchair explained to me, “That is how it happens for all of us.” For some it’s an accident that changes one’s life. For others, like me, and perhaps like you, it occurs, “For no apparent reason.” It just happens.
The key is what you do on the next day, and the next month, and the year(s) or more that follow. For me, I refuse the wheelchair and throw myself around on a pair of forearm crutches. Sometimes the pain is overwhelming. But then sometimes I can meditate myself into a “numb state” where I feel almost “whole” – But this new “wholeness” is not one that is free of pain. It is just my newly accommodated reality. Yes, it “stucks.” Really badly. But it’s also just my life now. So I just keep plugging.
In the past 15 years I’ve been through both Mayo in Rochester, and this past Autumn through Cleveland Clinic for a related, though different issue around the rectalis portion of the pelvic floor.
The journey always continues until we can’t. It’s a choice really – to go on. But not going forward is its own kind of admission that, “Some type of life” is not worth living.
I refuse to accept that. “Failing” is not a legacy I want to proclaim to others. I choose to fight – to fight hard in my own way. It may be slow, but it is my speed. I’ve readjusted my own perception a lot.
My understanding, and my experience with Mayo Rochester is all you need is CALL to make an appointment. If they require a referral to the Motility / Pelvice Floor Dysfunction Specialist (Dr. Adil Bharucha), then pretty much any type of physician – I usually use my current internist – can get you to Mayo Rochester. All you need to take is (basically) every medical file you can print out. Then you just have to wait for Dr. Adil Bhuracha to have an open “clinic day” in the foreseable future, and get the appointment in Rochester scheduled. I always ask for cancellations, or for “first available.” Then I bend my whole life toward making that date.
There is financial aid available – when you call the number I’ve listed below ask them how to get started on that if you need it.
Although the different “Mayo Outlets” share data to a certain extent, I would take issue with “Needing to start over,” through the Florida Mayo ‘before’ you can go to Rochester.
You can go where YOU want. You’re in charge. You know your body. And you know what you need to do. Okay?
Just get your internist to fill out the form to get in to see Adil Bharucha, M.D., at Mayo Rochester. It will be worth the trip.
And no one can ‘tell you’ that you can’t go somewhere to see another physician.
I cannot urge you strongly enough to seek this path for yourself and go to see Dr. Bharucha.
I’m also tagging past members @sad10514, @heidiren, @mm92599 in case they have any further insights.
You can call or request an appointment online here: http://mayocl.in/1mtmR63, for Mayo Clinic, Rochester, MN.
I got this number straight off the Mayo Rochester Appointments page online: 507-538-3270.
This next text is copied from the Mayo Rochester home page:
“Anyone can request an appointment at Mayo Clinic.
If a physician referral is required, our appointment staff will advise you. Some insurers require referrals, or may have additional requirements for certain medical care. All appointments are prioritized on the basis of medical need. You may make an appointment at Mayo Clinic in several ways: Call [this is the easiest…’hew]. Appointment Information Desk: 507-538-3270; TDD service for the hearing impaired: 507-281-9786; 7 a.m. to 6 p.m. Central time, Monday through Friday.”
@leigho55, Monday, 1/16/2017 might be a holiday (MLK) but if not then, please call them this Tuesday.
Pain is real. I feel strongly for your suffering. I’ve been in 8/10 level pain for 422 days. Trust me, I know how ennervating, maddening, even horrifying it is to live in constant pain. But at least by changing “Mayo’s” (from FL to MN) you can get someone in Dr. Adil Bharucha who understands the pelvice floor and can perhaps start you on a different, more enlightened path. Great luck. Take care, Hew.

Jan 4, 2017 · Right Sided Groin Pain In Female. Muscle Or Nerve Damage? in Brain & Nervous System

I can really feel for your pain, frustration, suffering, and exasperation at the allopathic medicine community.        What prompted me to seek out Dr. Adil Bharucha at Mayo Rochester was my own frustration. I nearly died after suffering for most of my life. Even so-called "Lauded" allopathic physicians really are often clueless – but are too lofty to admit that other physicians may actually "know" something that they are too closed-minded to accept.        Namely, that one physician, or one practice, or a group of physicians, or a large city of practioners, or even a whole State, or Region of health care practictioners doesn't really know any answer to some most basic questions about how the human body works – or what to do to treat conditions.         The art of diagnosing basic conditions of allopathic medicine is lost in the United States.Lost, that is, except to a very few highly knowledgeable practitioners. And just "who" they are often illudes most all physicians of Allopathic medicine.         You see, they all want to "Be" that magical savaant of the human body. But few, so very few can be that "one."        Before 1930, anismus, or at least 15 other issues with the pelvic floor were diagnosed using only common sense, historical knowledge learned from other physicians, and a stethascope with basic ascultation skills.  This is the way medicine is still practiced – and most importantly, still taught, in the first world nations of Europe. Cancers are diagnosed through touch, communication, simple tests, ascultation, listening, looking at variables – and by knowledge passed down through extensive training, and listening. Not just getting a medical degree.        Along came the "Age of Medical Machines" post WWII and the Marvel of so-called Modern Medicine. American Physicians became mere operators of machines, and reading reports about the human body. They have forgotten how to read the human body and know the human condition. Basically diagnoses is becoming a lost art in American medicine. Sad, but true.I found a solution by asking doctors in my city, my region, and in Chicago, Illinois, a simple question. "From whom do you receive your training?" Basically, what do all these doctors study? What conferences do they attend? Whom do they travel to see? From whom do they hear about issues in their chosen Allopathic specialty?That is how I found Dr. Adil Bharucha, Mayo Rochester. And he has made all the difference in my quality of life.Good luck in your journey. But your journey must take you to Rochester, MN, for any issues related to your pelvic floor.Great luck to you. You have my support, and my sympathies. But you have to leave your home area and go to Minnesota.I hope you have even better fortune for you in the coming time.@hew.

Dec 10, 2016 · Right Sided Groin Pain In Female. Muscle Or Nerve Damage? in Brain & Nervous System

@leigho55, Hi, as one of the (really) small 1/2 % percentage of MALES with Pelvic Floor Dysfunction with severe constipation I’d encourage you or your physician(s) to reach out to Adil Bharucha, Motility M.D., FACS, and the world’s leading specialist in PFD, at Rochester Mayo. I recognize it may seem strange to read from a male about PFD. But bodies are all different. Such is life.
There is some link between lower sacral nerve root with some involvement with levator ani tone, weakening, and pain. All of course tied through the Pelvic Floor.
The ties between the sacral S-3/S-5 Foramina, the rectalis portion of the pelvic floor, your levator ani, your ongoing pain, and the total pelvic floor involvement are well-worth a contact to Bharucha’s group.
Often times, surgeries involving the pubo-rectalis / pelvic floor in general are neither encouraged, nor successful.
Hence the need for a specialist in PFD like Dr. Adil Bharucha or his team.
As a life-long sufferer with PFD, and now with a loss of lumbar functioning, with radiculopathy, the PFD — which I had partially resolved after 2009 through Pelvic Floor Retraining at Rochester — has surged back with a vengeance.
An interesting broad view of the issues are at https://www.glowm.com/section_view/heading/Neurophysiologic testing of the pelvic floor/item/57#4111. It may be the same one referenced by @kanaazpereira. Excuse the duplicate, if so.
It’s very difficult, but at some point we all have to learn more about ourselves than even our allopathic physicians — to enable us to move in a direction even we did not suspect — in order to find healing.
You have my compassion, and my thoughts.
@kellym, @trishie, @hew,

Jan 22, 2012 · Pelvic Floor Dysfunction with Constipation in Males in Digestive Health

I’ve had both types of stools (actually I’ve even classified them into about 10 distinct types, but I’m a little detail oriented). The bowel retraining program was about $8000 but I went directly to the therapy area and did not go through finance since I was an established patient. After 5 appeals to my insurance, the last appeal on the ground of patient medical necessity (rather than plan coverage) the insurance paid! So I’m doubly rich.

The techniques I learned from Pat Olsen in Rochester really helped, though I must keep practicing even now, nearly a year later. One’s body tends to be a fickle adapter. It seems to forget what it’s been taught. When I’m on my game, the results are really, really positive. I’ve improved my colonic life by 50% overall.

Truly, the “hands on” one-on-one work I did with Pat Olsen over 3 weeks, 3x each day is the only training that has worked for me. She really knows what she’s doing.
She works with Dr. Adil Bharucha at Rochester. Try getting qualified through your insurance using “medical necessity.” The approach through the standard summary of benefits will fail every time because they use the word “biofeedback.” But the method they use is mostly digitial (fingers of the PT). The meter is for you to practice outside of the daily sessions and to “get a feel” for how to regulate the pubo-rectalis muscles and pelvic floor.

The only topical aid that has worked for anal/rectal fissures for me is niphedepine in the plasticoat base. Mayo Rochester sells a vial for $16 including shipping. It stopped the spasming and helps heal my fissures. I don’t know if it works that well for everyone.

The chemicals don’t work for me either. The latest was Amitizia. There was absolutely zero effect. The only approach that works for me is self control… and not putting anything down the chow lock (mouth) that I know I can’t digest and process. The 60g of fish protein per day keeps me from starving.
Good luck! I hope this helps.

Jan 22, 2012 · Pelvic Floor Dysfunction with Constipation in Males in Digestive Health

Sure, feel free to email. I’m glad to give away any of the things I’ve learned that have helped me in case I can help another person.

Many of the patients I’ve run across over my 9 years of going in and out of Mayo Rochester with Dr. Bharucha were there because of “botched” surgeries. There is no effective surgery for Pelvic Floor Dysfunction.

Unless you have one of the really clearly diagnosable diseases (sprue, crohn’s, colitis, celiac, gastroparesis, hirschsprung’s) the treatments are pretty vague or non-specific. For hirschsprung’s, the soave or pull through works because a part of the colon is actually dead.

Do not be tempted to undergo a “full fix” surgery since there is none.

For dolichocholon, which I also have, intestinal “shortening” surgery was proven ineffective in the 1920s.

After any surgical attempt to fix pelvic floor dysfunction with constipation, the problem then becomes the surgery, rather than the dysfunction.

The blocking or constipation occurs from the body’s tendency to work the opposite way it is designed. Most folks have a natural release of fecal. Those with pelvic floor dysfunction w/ constipation have a paradoxical movement (upward) when an attempt is made to defecate. The body actually shuts itself down.

Mag Cit is like the ‘atomic bomb’ of relief. For me, it causes anal fissures and more problems than it’s worth. I have worked with Pat Olsen, the physical therapist at Rochester who helped teach me exactly “how” to make the muscles relax during the process, rather than work paradoxically. That’s where the yoga Oshina continues to teach me how to “open” or “spread” the pelvic floor.

My body tends to adapt to whatever technique I use to promote BMs. So I vary between using 2c of whole psyllium husk in water (lots of water afterward, like two cups at least), and/or the fleet enemas when I’ve developed a type of hard “plug” of feces that is usually the “start” of my constipation. With PFD w/ constipation, and dolichocolon, the use of fleets, according to the physical therapist at Mayo Rochester, no more often than 1x each week is not harming me.

I do the best I can with the techniques I’ve learned, then after a week of constipation I resort to the fleet if all else fails (limited diet, exercise, yoga, protein).

And of course the cutting back on carbohydrates that I am unable to digest. I tend to live on fish protein, little if any carbs, and canned peas. These are the highest in carbs, and the lowest in sugars.

Also, for me anyway, I’m unable to digest the “oses” which I think I mentioned. (sucrose, lactose, fructose, glucose) So staying away from any of those eliminates much of the world of food with the exception of fish protein since it’s easier to digest than beef, or other hoofed animals. I eat about 60g of fish protein (mostly salmon packages), and some tuna. I had the test years ago and am not one of those who stores heavy metals, so the amount of tuna I eat a year is more than most folks.

Hope this helps some. I’m a medic in my spare time and a medical writer and technical writer for my regular job, so apologies if I get long-winded..
Take care…

Jan 21, 2012 · Pelvic Floor Dysfunction with Constipation in Males in Digestive Health

Hi Heidiren,
I feel your pain, man. I’ve got the same long transit time. Pelvic floor dysfunction with constipation. My body adapts and “holds” stool no matter what I work through for solutions. Different methods work at different times for me. A 1/2 cup of whole psyllium husk for a couple days usually resolves the impaction I experience. I try not to eat any carbohydrates since any of the “oses” (lactose, fructose, sucrose, glucose) cause my system to “shut down” and hold stool. I have dolichocolon which prevents the transit from even occurring through the extremely long, over-extended colon. I take 600 mg of docusate sodium per day to ease the impaction. Once impaction occurs, Valium usually resolves the anal fissures that appear from constipation.

Yoga osina (created and designed by John Freind) is the practice I study. The “bindng” and core hyper-extension really helps keep the center of my core stretched out. Also keeping my cardio-vascular pulmonary efficiency up to par helps a bit. Friend’s practice works to “ground” the pelvic floor to the Earth which is really helpful. It teaches me to open up the pelvic floor and keep spreading and opening it.

The PFD, slow transit, and dolicholon completely preclude surgery. Since the 1920s surgery is found to be completely ineffective. Once you cut, there is no going back, and you become much worse. Dr. Adil Bharucha is the foremost authority on planet Earth. I’d encourage you to meet with him at Mayo Rochester if you haven’t already.

I took the PF Retraining at Mayo with the special physical therapist Patricia Olson. She instructed me in how to Redirect the shape of my PF to enable better “release” of the counter-acting PF muscle structure. The PFD actually causes the muscles to work the opposite of how they’re supposed to which causes spasming and formation of anal fissures. I took what I learned in the two intense weeks of PF Retraining and took it into the Yoga Osina practice. My condition has improved at least 30% overall. A great relief to me.

I use a couple of standard fleet enemas even a couple times a week to prevent the hardening of a “plug” of stool forming above the “inside” sphincter. Pat Olsen says that with all the complications around the PFD and dolicholon that it’s not harming anything. And it beats the pants off of impaction. Hope this helps you. Good luck.

Aug 24, 2011 · Pelvic Floor Dysfunction with Constipation in Males in Digestive Health

I went for the 3 week session in Rochester, MN, under Dr. Adil Bharucha’s direction, led by the physical therapist Pat Olson. Yes, it’s expensive. My insurance and Mayo are still going back and forth for 6 months now. My brother and my mother have helped me some financially, but the total still outstanding for me is still around $6600. After fighting this for 53 years (I’m now 54) my wife said that I had to go and try it. Because of the health issues I dropped 20% of my full time job a year ago which helped me to get ahead of some of the body stresses that worsen my condition. My wife and I live pretty simply in a small house near Louisville, KY. Apparently the PFD with constipation is not as common as the one you describe for yourself. I eat a limited diet to prevent my gut from reacting to foods that my gut can not process.

I too went through years and years of mis-diagnoses and it wasn’t until Rochester that I got the main problem with the PFD plus constipation.

I also had years of anal fissures for which Bharucha prescribed niphedipine (sp?) which is in a plasticote base which I apply sparing and topically. Mayo compounds it for me which is much cheaper, like $16/vial as opposed to a “compounding pharmacy” which wanted to charge me $150 for the same size. It gives near instant pain relief by relaxing the constricture band of muscles at the pubo-rectalis that wrap around the sphincter. It is an anti-spasmodic heart drug. I also use generic valium (5mg, then 5mg more if no relief) which usually works well for me.

One of the additional approaches I have used is through a yoga teacher who practices a yoga-asana discipline and works with me to loosen and open my pelvic floor. The combination of the digital meter from the physical therapy, and the continuing opening of the pelvic floor has helped me get 50% improvement over February when I was in the training in Rochester. Yeah, February in MN. Hey, at 50 below zero F. it’s all the same, right? I went to sessions three times each day with Pat. She’s very good, patient, and helpful.

Aug 7, 2011 · Pelvic Floor Dysfunction with Constipation in Males in Digestive Health

Anybody dealing with this malady? It’s been a life-long zinger for me. I work with the motility team at Rochester. Been through many treatment regimens with them. Anyone having any success with other methods? I’ve taken or tried every medication on the planet to no avail. I’ve been through the 3 week physical therapy at Rochester with all the monitors and techniques. Now THAT process will help you lose your modesty in about the first 2 days.
Guess I’m just searching for anyone with the same…
Thanks, Hew