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peaceplease
09-24-2005, 10:08 AM
I have received manual pelvic floor treatments from Jerome Weiss MD in SanFrancisco Ca twice now. I am wondering if there is anybody out there who has seen him and if they found it helpful. He charges $180 for 1/2 hour which is very hard for me financially to say the least. In addition, he has twice recommended I see the physical therapists in their office, but first I was told they are booked thru November and now it is December. I get no answers as to when I might be able to get in with the therapists who treat you for one hour.
Does anybody have experience with this practice and can anybody who lives in the Bay Area give me a recommendation for a good physical therapist who specializes in PFD and IC? Dr. Weiss's office say they are the only people doing the kind of work they do, with the exception of two other doctors in LA and NY.


Also, has anybody been CURED from their IC with pelvic floor work alone?

Melanie
09-24-2005, 04:17 PM
If you are willing/able to travel to San Mateo... There are 2 therapists at ABA Physical Therapy. MaryAnn and Karen. Both are very good and knowledgable about PFD and IC. I don't know how they compare to Dr. Weiss because I've never gone to him. I can't handle the drive to SF.
I am definetly not "cured". But PT does help manage the "referred" pain (pelvic, back, leg).

ICPrincess
09-24-2005, 06:28 PM
Oh man...you guys are making me depressed here. I love our new home but I moved from Foster City and miss the bay area terribly........now living on a totally different coast......did everything in San Mateo and Redwood City. I will give California this, you do have a very wide choice of doctors...they are seemingly everywhere (Try the country on for size...it sucks).

peaceplease
09-25-2005, 04:07 AM
Melanie:
Out of curiousity what other treatments are you doing besides Pelvic Floor Tx. How many times have you gone to see these therapists and what exactly do they do? Also, what do they charge?
Dr. Weiss's office has told me numerous times that there is nobody they recommend in the Bay Area at all for this work and even more, they make it seem that nobody knows how to do this type of treatment except them.
Do these therapist teach you how to self treat/work on the trigger points? Do you have a partner (spouse etc) that they have trained to do the work on you?
I am sorry for all these questions and I appreciate any further information. I was just given the name of somebody in Los Gatos who is supposed to be excellent, but I am in Oakland and that is a far drive for me.

Melanie
09-27-2005, 01:01 PM
Sorry for the delay in responding... I just saw your msg.
I go to PT weekly. I'm not sure what the charge is... My insurance covers it and I pay $10 per visit (billed monthly). The avg session lasts 45min. If you call them, I'm sure they can give you quote on cost and perhaps even tell you if your insurance will cover any portion. Dennis & Lisa answer the phones. Marylin is the Office Mangager. All 3 are very nice and helpful!

I have been through almost every IC treatment that has been available to me, including Interstim trials. Currently, PT is my main treatment. I don't think it can cure my IC, but it does help the "referred pain" and it does make sex possible. My IC began in my bladder and gradually spread to my pelvic floor (and pain in surrounding areas). Some women who know or suspect that PFD is the main cause/source of their problems... Well, I'd imagine that PT could be more of a "cure" for them.
I do occasionally go to Acupuncture, but I'm not sure if it helps the IC. I'm going there primarily for fertility issues.

The therapists work on my entire body... head to toe. Mostly they work on my lower back, abdomen and internal myofascial release. I've also done Pilates and learned exercises and stretches as part of the therapy. They've also supplied me with tools to help. Such as vaginal dialators (to more effectively do kegels) and Mr. Frosty's (to ease pain after sex). At one point, we also used tens unit.
Maryann & Karen are both easy to talk to. Both are willing to work with you to find the right combination of treatments and techniques to help.

I think that they are open to teaching your spouse/partner. However we have chosen not to go this route for personal reasons. We (me & my husband) decided we don't want him to become a "medical provider" for me. Sex is clinical enough for us.

Again, I'm not familiar with Dr. Weiss' technique, so I don't know how similar/different ABA's treatment is. Can you tell me more about his method and why he considers it so unique? Maybe it is indeed different.... But I really get frustrated with Dr's who insist that only they are right. It may be different, but it doesn't make another therapists treatment incorrect. It's about finding the right solution for the individual patient. Keep me posted....

Edited to add: I've been going to ABA for several yrs. Before that I went to a therapist at Stanford, but she left the area. Then I found ABA and have been very happy with their care.

peaceplease
09-27-2005, 02:17 PM
Hi:
I have an HMO so they don't pay, it is very expensive to see Dr. Weiss, thus part of the problem. Most ptherapists seem to be about 95.00. I did find a woman in Mill Valley who I saw yesterday and liked, that is still a trek. She gave me the same of a woman 5 minutes from my house.
I am not sure why some of these ptherapists have little confidence in other ptherapists when it comes to this stuff. I think pelvic floor work is probably one thing, but trigger points etc is more tricky. I personally don't see how hard it can be if your partner can be trained to do it.
I have also been told that pelvic deep massage and massage or legs back etc can be really good for IC. Are you familiar with the Stanford Pelvic FloorProtocol? They have a 5 day clinic up North, but I can not afford it is is very very expensive.
The woman I saw yesterday does biofeedback for pelvic floor, trigger release, sacrum work, tens unit, and massage. She seemed to hit the same trigger points as Dr. Weiss and felt the problem there too so I thought that was good they both found the same problem.
At this point I probably would prefer not to drive to the South Bay since I have two small kids and a very limited schedule to work within.
How long have you had IC and out of all the treatments you had what was the most helpful? Do you go into periods of remission? Do you have bladder pressure still? Do you get relief from laying down or is it better standing up?
Just curious. I appreciate your long reply and I would love to hear more about how it has been for you... Your story, I feel very very alone and hopeless.

Melanie
09-27-2005, 02:47 PM
I think therapist confidence is directly related to training and experience. Well, San Mateo is mid-peninsula so not too far from you (across hayward bridge). But depends on the time of day (traffic).
I've had IC for about 8 yrs. My Uro is Dr. Payne @ Stanford. He's awsome! He's got some studies happening now, so you should consider contacting him.
PT helps my referred symptoms. I've never been in remission and I have yet to find a good treatment for the IC. I've tried almost everything (including Interstim), but I'm hopeful for new treatments coming soon.
Yes, I have bladder & urethra pressure, pain, spasms, burning, etc. Laying down does help. Most imptly changing positions to ensure that I'm not putting pressure too long on a particular area. Trying to keep my body flexible.
You are not alone. This website is extremely helpful. And there are also lots of us in the bay area. There is definetly hope!

What are your primary symptoms? What treatments have helped so far?

peaceplease
09-27-2005, 03:00 PM
Melanie:
I spoke with Dr. Payne's assitant when all this started in early July this year. I had an infection and it cleared but the symptoms never went away. He isn't taking new patients and all they could offer me was to be on the amitriptlyne study, I didn't want to do this so I can't see him. I am not that into my urologist who wants to do an hydrodistention. I have very little confidence in this procedure to diagnose and I feel it would make me worse. Therefore I haven't been diagnosed with IC. My symptoms are not pelvic pain persay, but SERIOUS bladder pressure when I pee I feel I need to pee within minutes again and I know there is no urine in my bladder of course. Recently the pressure has worsened and now I feel it even lower into the urethra and vaginal area a bit. I had a few good days where I could pee and the pressure wouldn't return for a couple of hours, that was a gift, but those days are long gone. I have no health problems and no big history of utis prior to the one in July.
I want to do the least invasive things first, thus, pelvis floor treatment and I might see Dr. Stoller for the SANS treatments at UCSF. I just have to pay for all of this out of pocket due to our being on an HMO.
I have a 3 year old and 7 year old and each day it is just about survival, I am not enjoying life because of this relentless pressure and bladder irritation. It is relieved greatly by laying down. When I stand up the pressure is so much greater. So, I really only wake to pee once or so at night (the only saving grace in all this.)
I am very depressed about living with this chronic problem. It truly is a nightmare for me and just came out of nowhere.
I find this website to helpful and overwhelming. I don't have ANY hope I will ever get better and that this will go away. I know that is terrible.
Do you have periods of remission? Did hydrodistentions work for you? How do you cope with all of this?
Thanks

Melanie
09-27-2005, 06:13 PM
I advise you to keep in contact w/ Dr. Payne's office. He's got more studies coming up in the future. And he will be taking new patients again (he might be already, you should check with them directly).
No, I've never had remission. I have my chronic symptoms and then flares. But there are many, many ICers who go into remission. Don't give up hope. And no, Hydros actually make me worse.

I cope by having a wonderful and supportive husband, coming here for support, talking to a knowledgable therapist, going to PT regularily, keeping in contact w/ Dr. Payne's office, taking an antidepressant, getting alot of rest and having hope that I will find something eventually that will help. Since you are depressed, I urge you to speak to a therapist and possibly consider antidepressant. I know they aren't right for everyone, but my antidepressant has literally saved my life.
I've had IC for 8 yrs, it takes time to learn to cope with this. It's not easy, but you can survive this - if not for yourself, for your children. IC is a really difficult challenge for me. But I have other challenges too and some of those are even worse... so it puts things in perspective.
I advise you to read as much of this website as you can.... particurarily the Handbook. There are also several good books available about IC and about living with chronic illness.

peaceplease
09-28-2005, 05:32 AM
Melanie:
I can't see Dr. Payne right now as I have an HMO and he is out of network. We may switch onto a PPO in the New Year since I am already spending SO much money out of pocket for all these physical therapists etc. At that point they would take my insurance and I could go to him.
You say you have tried everything. Out of curiosity have you tired a very longterm course of antibiotics or been tested for enteroccoci via the broth testing approach? What does Dr. Payne personally think about the whole bacteria as a cause for IC? I know IC is thought to be nonbacterial, but there clearly are some folks out there who feel there may be some hard to detect and hard to treat bacteria lodged into the bladder as the cause of IC. Just curious if you know his opinions on this. I wonder if he has ever done a clinical trial for this, and if not has any medical center done a trial to study this further.

sfskye
02-26-2008, 05:24 PM
You may want to try Lizanne Pastore, PT. She is located in SF, off of 19th Ave. She specializes in PFD. She is very sweet as well as very knowledgeable. I have also gone to Weiss - I am not sure if he is the ONLY doctor who treats CPPS in the Bay Area - I do like him though - I think the advantage of going to him is that he offers "one stop shopping" - he can do the manual therapy (trigger point work) as well as injections, prescribe medication, etc. I am very surprised that he has not been more diligent in setting up appts for you with his PTs. Have you asked when you can see them? Good luck!

tacy99
03-13-2008, 07:22 PM
Here is a link to http://www.pelvicpainrehab.com/ where Elizabeth Rummer, MSPT Stephanie Prendergast, MPT, from San Franciso are. They are highly regarded.

Nancy1980
06-20-2014, 01:57 AM
I have been seeing Rhonda katarinos in Chicago.. I have seen her for 9 times so far.. She is amazing g and knows what she is doing.. But my pain increases a lot a day or two after.. Is that normal... After how long do flares from pt stop... Please help