Pelvic floor Doc's?

[mlb]

I have heard from many that there are just a handful of Dr's who treat IC successfully and know what they are doing. Who are they???????????

[Iris5]

In Illinois, call Drs. Brubaker or Fitzgerald at the Women's Pelvic Medicine Center at Loyola Hospital in Maywood, IL (just outside of Chicago). In California, try Stanford University Hospital. I think that's all I know. You might want to try contacting Dr. David Wise (the psychologist who wrote a headache in the pelvis) - he might have some more names.

[mlb]

Thank you - I live in Arizona. I have heard of one in Chicago and one in Las Vegas that is good. I'm looking for anyone who has been helped in the area of clitoral nerve pain and burning. THanks.

[kelly McC]

I see a pelvic pain specialist in ny he just had me start using a lidocaine mixture I apply 5 times a day its been very helpful for burning..
Kelly

[boppy]

i am tired alot and need a vitamin that wont hurt my bladder

[Allibeth]

Kelly, which MD in NY gives you the lidocaine mixture? Allibeth in NYC

[yorkiemom]

Has anybody been to Dr. Brubaker in Illinois? I heard about her years ago but actually know nothing about her other than she comes highly recommended. She would be about 4 hours away from me; Dr. Wise & his group would be half a continent away. How does anyone know which treatment source to try (all things being equal--money & insurance are not obstacles). Thanks much!

[Allibeth]

Yorkiemom, don't you wish you could email all these MDs to find out if they're worth seeing before taking a long schlepp (and having to stop at an icky gas station every ten minutes to pee?). I only know NY healthcare providers: Dr. Kauffman in Manhattan has a website (www.centralparkurology.com)and responds to email: drkaufman@centralparkurology.com. He's very accessible, has even given me his cellphone number and offered to see me on a day when his office was closed for a holiday. I know infectious causes are controversial on this website, but Dr. Attila Toth is the king of antibiotics, and has greatly helped people with IC and vulvovag pain (tiltoth@aol.com) - -also in Manhattan. He has some books and a website about infertility (infertilitysolution.com), but he also sees many people with IC and vulvodynia that don't want children (like me). He's also very accessible -- when he's not in the office, he often forwards the office phone to his cellphone so you talk to him instead of an answering service, and he even came into the office on the weekend to see me (when his office is usually closed). And if nerves are a problem, I haven't seen Howard Glazer, Ph.D. drglazer@nyc.rr.com, but he does biofeedback for pelvic floor pain, etc and he responds to emails. He also has a website -- I'm sure you could find it with a google search, or try one of the PT's listed on the website that does biofeedback if you want to try that. I've also seen Dr. Klapper and Dr. **** in Manhattan -- they don't give out email addresses. If people want info they can email me.

[yorkiemom]

Totally cool, Allibeth! I can't believe you took the time and effort to write out all this information for me; I feel so fortunate. It's like a gift . . . I will expand my search for the appropriate resource based on the information you posted and I know it will help others, too. I already have a referral to Barnes; think I'll call Dr. Wise and see whether he thinks I should pursue that avenue. I am hoping that he knows the PT and will recommend her highly!!! Thanks again.

[Allibeth]

Yorkiemom, it's my pleasure. I hope you find good healthcare providers.

[Iris5]

Yorkiemom -

I have gone to Dr. Brubaker, a urogynecologist at Loyola. (See my previous reply on this thread.) She is really an amazing doctor. I could not say enough wonderful things about her and her staff. I started seeing her last May, and I have greatly improved since then. (My treatments didn't really start until end of July).

Loyola actually has a clinic entirely devoted to pelvic pain. Dr. Brubaker is pretty famous, and so are her partners. In fact, one of her partners, Dr. Fitzgerald, was just noted in the recent issue of Chicago Magazine, where they had an article about alternative/complementary medicine. You should know that, although they also practice traditional medicice (surgery and meds), this group does a lot of "alternative medicine".

The two most amazing things about this group: I would say that since I have begun their recommended treatments (PT, pain management techniques, and exercise), I am about 60-75% percent better. The second great thing: she doesn't treat you like an idiot patient. She and her staff actually show you respect. For instance, have said directly to me that I am an intelligent woman - when was the last time you heard a doctor say that to you?

I would recommend this doctor and her staff to anyone who is ready to take the next step, and is willing to try a new, pioneering approach to medicine.

[Flarin-up Vicky]

Too bad your'e doctor is in chicago and I'm all the way in california!! But my uro has reffered me to do some pelvic physical therapy for my ic.I hope I improve as much as you have!Keep up the good work and good luck!!!

[Iris5]

In California, you might want to try Stanford. Contact Dr. David Wise and Dr. Rodney Anderson (Wise, the psychologist and Anderson, the urologist, co-wrote A Headache in the Pelvis). I bet they can point you in the right direction. They recommend the same kind of PT work that my PT does.

[IcyAngel22]

I went to Loyola and saw Dr. Brubaker's assoc. Dr Kenton and she sucked big time. I've been to many drs and she was the worst. Intead of treating my Ic and PFD they sent me to a head dr because I was too needy. Needy my butt. I now see a wonderful dr who isn't full of themselves and unwilling sympatize with Ic patients. The staff was horrible and I was never able to ge a hold of the dr. My new Dr. Steven Pierapoli at Little Company of Mary Hosp. and his staff are awesome. I can always get into see him and he will come in to fit my schedule. i'm a college student who goes too school out of state in Iowa. Dr. P is always available and is out there looking for new treatmnets. At loyola I was treated like it was all in my head. I'm current treatment is botox injections and it is wonderful. I wouldn't be alive today if I was still seeing a uro at Loyola. I still see a few drs there but the women health pratice give false hope. I want a dr who is out there getting the cutting edge treatments for Ic and willing to try them. Dr. P goes to conferences and talks to the leading drs in that treatment. I've tried everything and botox works. loyola isn't a bad place because some uros are ok, not the uro/gyn which is horrible. As an IC patient I need constant care and a dr who listens and goes out to find the solution. Not one who throws happy pills my way. I was always told IC isn't in your head but they treated like it was. So patients beware. Sorry for those of you who are helped my Dr. Brubaker just know there is more out there in the Ic world. I'm just expressing my experince and feeling so I'm sorry if it gets anyone upset.

[Iris5]

Interesting - because Dr. Brubaker's suggestion to me was to stay on the meds that I had been taking to keep me stable, and then sent me directly to Rhonda Kotarinos for physical therapy. I had also considered the possibility of injections, but I wanted to try a more natural route first, rather than shooting more drugs into my body. I was not sent to a "head doctor". And I know that the pelvic pain clinic has been reviewing new methods such as botox because I briefly discussed it with one of the doctors there. In addition, this group has been selected by the National Institutes of Health as one of 10 sites across the country to conduct a clinical trial to test several medications as possible treatments for IC. If actually committing yourself to research to help IC/pelvic pain patients isn't cutting edge, I don't know what is.

[Iris5]

P.S. - Dr. Brubaker was also named Uro-Gynecologist of the Year by the National Association for Continence at the American UroGynecologic Society Annual Meeting in Chicago.

[IcyAngel22]

Iris-
Everyone has their own experience and mine was bad. I'm glad to hear you have a dr who is right for you. I hope I did offend you. Good luck to you.

Kristin

[CudaGirl71]

Allibeth, I had gone to Dr. Kaufman yesterday, 2/15. I'm really not to sure about him. He is nice and he told me I have PFD. We didnt discuss much and I felt hurried. What do you think about him? I am interested in the other Docs that you had mentioned, have you gone to see them also?? Any info would be great!
Thanks CudaGirl71

[melanie626]

Madison WI at UW Hospital and Clinics Dr. Wade Bushman is at least recognizing the connection and I really liked him...

[vivig14]

I haven't found Uro in Chicago who offers what I want. However, no one has ever told me it was in my head or that I caused this. The Uro that diagnosed me in '97 John Garnett was nice enough, but not a specialist in IC--well at that time, he was one of the more knowledgeable. I"m at the point, I want the IC or PFD specialist, and that's all they do. As far as nice and will listen, Dr. Janet Tomeszko at Northwestern, a urogyne is good. However, I didn't need surgery, so I think there was nothing she could do for me and my guess she has more "serious" cases (think organ prolapse, etc), so I was referred to my physiatrist, Dr. Colleen Fitzgerald at RIC, Chicago. Her postulation was that my pain and IC symptoms were the result of musculoskeletal problems. However, she seems to have run out of ideas. I also don't think she has adequately triaged with my other specialists. Not enuf time, so that's a problem.

Any suggestions in Chicago? Or the best out there anywhere (in the U.s., for now). Although I'm not 100%debilitated from this stuff, these docs have got to think about the loss to society in what I cannot give back/contribute b/c of being consumed by pain.

[Iris5]

I also saw Dr. Fitzgerald at RIC - Northwestern Hospital,and she made a similar diagnosis for me - that it was musculoskeletal. I did 12 physical therapy visits with her, and made no progress.

The only thing that has worked for me is physical therapy with Rhonda Kotarinos in Oak Brook. I was so improved (90-95%) that I was able to get off all of my meds except one, and pretty much restore my diet to an unlimited diet(except for alcohol). I am also now pregnant (20 weeks -halfway there!) and have had surprisingly little change in my pain/frequency symptoms. So far, the only change because of the pregnancy was that I had to go on a more strict IC diet to keep my IC/painful bladder syndrome under control. I would highly recommend getting in touch with her as she can put you in touch with a doctor she works closely with, and who may be near you. If you like Dr. Fitzgerald at RIC, I know that she knows Rhonda. But Dr. Fitzgerald probably would not subscribe more than 12 visits, and you may need many many months of therapy. There is also information about Rhonda on this site.

Personally, I like the group at Loyola - Brubaker, Kenton, and Fitzgerald. They are excellent, and work very closely with Rhonda.

I cannot say enough good things about Rhonda Kotarinos. Her program absolutely changed my life, and I would not have been able to get better if I did not go to her.

[vivig14]

Thank you so much for responding, Iris5. Have definitely heard of Rhonda, and will travel to the 'burbs if she's worth it. The only reason I hesitated was that I saw relaxation therapist, Helene Morcos, in Chicago who was helpful but told me that if I sought out Rhonda for my PFD, she would only send me back for more "relaxation" exercise. I feel that there is nothing more i can gain from that particular form of therapy.

Have heard of the Loyola Clinic, as they also make many referrals to Judy Florendo, PT, who I saw for many months.

It's no problem that Dr. Colleen Fitzgerald--RIC wouldn't write for more sessions, I bought the PPo for that very reason. I can see anyone I want--basically anywhere w/o referral.

Thanks for your upbeat message. Congrats on your pregnancy, and remission of symptoms.

[Iris5]

That is really funny that you saw Helene because I saw her too. I actually see both Rhonda and Helene. I started with Rhonda and found her very helpful, but Helene's relaxation techniques seem to help when things get bad. When I was having really bad pain, but didn't want to take pain killers, I would use the relaxation techniques, to avoid the drugs. But the relaxation techniques by themselves would never have worked. Have you read "A Headache in the Pelvis" by David Wise? His protocol suggests combining physical therapy with relaxation techniques - that's how I got to Rhonda and Helene - through that book. In fact, he mave referred to both of them in his Acknowledgments.

Rhonda's techniques can be painful and she will push you hard. But after a few weeks, when you leave her office, you feel better than when you came. And after a while, the period of relief lasts longer and longer, and the period of pain gets shorter. If you stick with it long enough, you will see results, but they are definitely not immediate.

Good luck!

[vivig14]

IRIS,

another question about ronda kotarinos. what is so unique about her form of treatment? i have seen many pt's, two internal work, and two external. i am going to see her, but since you have also seen other PTs, what was different? her techniques? her level of experience? when you say she will push you what do you mean by that? of course i will work hard and follow through on any home exercises...and i know that the PT can be painful, and later on there is relief, too. what else do i need to know about seeing her?

i assume she does manual work and trigger point release, what else? she talks about a 10 or 12 session format, what did that entail for you?

[sami4]

For those in the Arizona area the following docs have a good reputation here:
Pelvic & vulvar specialists: Dr. Stewart Fowler, Mayo Clinic Scottsdale (he also works with chronic yeast and infections), Dr. Lavy pelvic and vulvar, yeast, David Novicki also Mayo Scottsdale. Urologists Dr. Elizabeth Kornfield, Ray Hurm both considered pretty good by the local ICers. Also a group of physical therapists that work with Dr. Lavy with pelvic floor problems.
Sammie

[Iris5]

Rhonda did both internal and external treatments on me. She does trigger point and myofascial release - from my knees to rib cage because that's where my pain was. I waited so long before going for treatment that I had pain in all those areas, not just my pelvis. You don't really do any exercises - you just lie on the table and she does all the work - it's "passive" PT. But when I say she pushes you, I mean she does not have a light touch. The sessions can be painful, but are worth it. Also her demeanor is very matter of fact, which is fine by me. I guess what makes her so good is she seems to be one of the pioneers of this treatment. People come to train with her from all over the country, and she has patients from all over come to see her (even as far as Canada and Europe.) I guess that I chose her because she seemed like a sure thing and I was sick of messing around with people who weren't as experienced. Why go to the student when you can go to the master?

[July]

Vivig14,
Were you able to get in to see Rhonda Kotarinos? I spoke to her back in October or November, and she told me she had a 6-8 month waiting list, and put my name on her waiting list. I have never heard from her since then.

[vivig14]

I don't know what her protocol is. You should try again.

[Iris5]

It took me at least 6 months to get an appointment. But you should call every couple of months, just to see where you are on the list.

[icsue]

I've seen a physical therapist for PFD and IC. They're theory is that you start to use your pelvic floor muscles to walk, then the pelvic floor muscles irritates your bladder and bowels. I didn't believe it at first but I'm trying to strength my butt muscles. which should be used to walk with not the pelvic floor muscles. Everything I did just made things worse. The best thing I found to do is swim. I've been swimming 20 laps 2 days a week. It made everything worse in the beginning but now it's starting to improve. It's been at least 6 months and will most likely take another 6 months to get to a point that my bladder doesn't get irrated when I swim. I think the problem with PT is that it takes a long time to get things working right and it's easy to give up. I've given up before but decided to swim for 6 months even if there is no progress. The progress started after 6 months.

[vivig14]

thanks for the helpful post. the whole PF, bladder, bowel connection is mystifying to me.

I think my physiatrist wants me to be doing more "active" exercising such as core strengthening. Not sure about specific exercises for the butt or "gluts" as they call them. Isn't swimming overall strengthening? What other exercises are good for the gluts? I've purchased a Bosu to help with core strengthening and balance. I also theorize that when i strengthen my upper body i won't have to rely on my lower body as much. I do the elliptical for cardio (at a snail's pace but 4x weekly fairly consistently) until I feel pain on my SI joint and lumbar spine. I try to watch my posture, and do some light upper body weights. I've had years of PT and personal training, and some pilates, so I've tried a lot. I'm pretty much lost at this point. I've had a stomach ache and diarhea all week. I have no idea what it is. I haven't deviated from my routine or diet. I have been stressing about all this medical intervention stuff, but have tried to be conscious to relax my PF muscles. What the heck more can I do? You will never eliminate stress from your life, only how you respond. I took the day off to rest, and that helped relax me, but I feel I have a swollen bowling ball in my belly:(

[icsue]

Yes, swimming is core strengthening. The problem is it did make things worse in the beginning. Some how, with me anyway, I had to get beyond the point of it causing pain. She wanted me to do the elliptical but 5 minutes caused too much pain because it seemed to exercise the PF muscle. All I know is after swimming 20 laps twice a week, which I had to work up to for 6 months, seems to be helping.

[ICNDonna]

There are literally thousands of urologists all over the country who are knowlegable about IC and very capable of treating it. There aren't many who treat only IC patients because there aren't enough of us to allow for this specialization. I know of at least four uros in my area who work very well with IC patients.

Donna

[icsue]

Not sure about specific exercises for the butt or "gluts" as they call them. Isn't swimming overall strengthening? What other exercises are good for the gluts? (

The swimming does help your gluts also. You can look on the web for other glut exercises. One is laying on the floor, bending your knees and lifting your hips about 20 times. Then open your knees wide and do it again, then put your knees together and lift them again for 20 counts.

Walking backwards on the treadmill also works. I found lots of fast walking works also. I just find the swimming is quicker and gets my glut muscles without irritating my PF too much.

It's really is working, but it was just making things worse in the beginning. I also have to lay on an ice pack every night, if I don't I'll wake up in pain.

I also have IBS and it's helping that long with the IC, (after 6 months of making it worse) I'm still on elmiron however. I've been getting a bladder installation every month just while I'm going through getting used to these exercises.

[vivig14]

what type of doctor or pt recommended this for you? you say it's helping IC and IBs, what about the pelvic floor pain, and internal pain?

thanks for the specific exercises, much appreciated.

[icsue]

It was the physical therapist that was trainined with Dr. Whitmore who specializes in IC who gave me the exercsises. She actually said I had to do more than the exercsises too, like ride the bike or swim. The bike hurt too much so I decided to do the swimming even it I didn't feel any progress or made it worse for 6 months. If I didn't feel progress after 6 months I was going to quit and it did get worse at first.

I started with just the exercsies on the floor, then later I swam once a week and it just made everything worse. I kept doing it and eventually when I could tolerate an extra day I added 2 days of 20 laps. I'm going to add a 3rd day eventually and see where I am in another 6 months.

Like I said it makes it worse first because you're still using your pelvic floor muscle too much. Eventually if you build your glutes up they will take over and give your pelvic floor muscle a rest.

They used to say it could fix IC but now they're not making any claims. That's why I was skeptical but I decided to try it. So far it's helped both IC, IBS and internal pain, so I'm going to keep swimming and see where I am in another 6 months. It might not cure it but it is improving. The back of my legs hurt and my hips and butt and I do have some internal pain but not as much.

[icsue]

The theory behind this is that you start over using your pelvic floor muscles instead of your gluts. The pelvic floor muscle gets tight and shortened and starts to irritate the bladder and bowels and everything in the area including the pelvic floor muscle itself. That muscle is not supposed to be over used like that.

I stopped all exercises for a while and realized I could not walk without using my pelvic floor muscle. I didn't have any other muscles to use. That's when I decided that they were correct and went full head trying to strengthen all the other muscles even though it hurt in the beginning.

It takes quite a leap of faith because in the beginning all you can think is that this can't possibly be helping anything because all I did was feel pain. I thought that for the first 5 and half months but did it anyway. Then I did eventually see improvements that encouraged me to continue.

This is just MY experience.

[vivig14]

thanks for your straightforward and helpful info. Everyone's path is different with this stuff, but a lot can overlap too! Your account was very useful for me. Thanks again. aka vivig14!

[icsue]

good luck. I've had quite an improvement and you'll see me in the remission section if it works in the long run.

[di52]

I see you are from Arizona...so am I. I am in the phx area...where are you?

[sami4]

I live in the Surprise area.
Sammie

[di52]

Nice to meet you Sammie. Do you know of a good doctor on this side of town? I hate my uro. Just diagosed last month...he knicked my bladder during a cystoscopy biopsy. His office never calls you back and you never get to see him....just the PA and sometimes the PA is too busy to see you.
thanks Dianne