Washington State-uro's

[bjcov]

I am new to this bladder stuff and completely scared,clueless, I am wondering if anyone has a suggestion for a uro in Washington State. I live the Tri-Cities. 3.5hrs from Seattle, and 2.5 hrs from Spokane. Can anyone help me?

Brandy

[mystereys]

Hi, Brandy.

I'm in Seattle, and I go to the urogynecology clinic at the University of Washington Medical Center. Website (http://depts.washington.edu/uroweb/ptcare/clinics/urogyn_uwmc.html)

I've seen the nurse practioner there, and also Dr. Jane Miller--they're both good. I also participated in a study they had, evaluating how amitryptaline works to treat IC. The folks there are very knowledgeable about IC (they might prefer to call it painful bladder syndrome). I've felt very good about going there and recommend the clinic.

3.5 hours is pretty far to go, especially if you're in pain--maybe they could refer you to a doc who is closer to where you live?

Feel free to PM me with any questions. Good luck!

[babybjl]

Hi!

This is my first post on this site bu I read your note and just had to reply. I have had symptoms of IC for 9 years and have just started bein treated in the last three months.

I went to multiple uros, gynos, and urogynos in WA state. I also went to the **** like th previous poster. However, it took me over one year t get an appointment with a doctor, and six months to see a nurse practitioner and I am not exaggerating.

Overall, I was unsatisified with their treatment options and clinic. But that is only my personal opinion. I now see Dr. Shlomo Raz at UCLA in California. I got in with him in two weeks and had my cysto with hydro four weeks later.

He is on the front edge of IC treatment, has years of experience and has the best bedside manner of any uro I have met to date. He is also covered by my insurance in WA state, which is great.

I hope this helps you, and good luck.

Beth
DX Dec 2007
Px Methanamne Mandelate, 2x daily
Percoset as needed
Vicodin 2x daily
Prelief 2x daily

[bjcov]

Beth
You are not the only one that was able to see Dr. Raz so quickly. this is an option for me to consider, however, I am terrified to fly, so this would be a last resort. I am currently seeing a gyn here in the Tri-Cities we haven't really started anything except for Elavil, which might be working. Thanks for the advice! Is it a pain to have to go to CA? Are you starting to feel better?

[VickiB]

I see a Uro in Coeur d' Alene ID, just east of Spokane. He seems fairly knowlegable on IC and the staff were also well informed & helpful. On the down-side, at my first visit he walked into the room and stated he will not give me pain medication. Seemed a very strange comment to make at that moment, and made me wonder if they have a lot of drug seekers using IC symptoms to score?

Vicki

[SharonA]

You might be able to find a doctor here: http://www.ic-network.com/md/

[bjcov]

thats pretty much what the Doctor in Yakima told me. He was kind of a jerk about it, but when I asked the nurse she said that they do have a problem w/ people seeking drugs. The Gyn that I went to is the opposite. I don't even take meds for pain, but it is nice to have some just in case. I just don't know how much this gyn knows, but I am happy w/ him so far. And the Elavil,IC diet, seems to be working. Knock on wood!

[VickiB]

Yeah, "jerk" is what I thought at the time! Actually, the statement caught me completely off guard because not yet diagnosed and knowing nothing of IC, I went in there expecting a complete & permanent cure for my problem. The idea of no cure, of taking drugs to mask the pain, wasn't even an option I wanted to consider or accept at that point.

After talking with him a while, I came to the conclusion that he was really a decent fellow, perhaps hardened from seeing more than his share of drug abuse. As brash as it was, he was not wanting to waste his time or mine if that's what my visit was about.

Still, I couldn't help wonder,...do I look like a druggie? (I didn't think so!?)

In the end, he promised me that he would help me feel better, and he kept that promise. I'm grateful for that.

Vicki

[ICNDonna]

Vicki: Your question "do I look like a druggie?" made me think of several addicts I have known. One was the mother of my son's friend. She was active in school activities, always was dressed very nicely, hair well styled --- and she was just a very nice person. I found out much later when she passed away from an overdose that she was addicted to narcotics and had been for many years. And my mother had a friend who saw many doctors under different names, but was eventually caught at it --- she survived. Nobody could have guessed from looking at her that she had a problem.

What I'm saying is that an addict can look like a well groomed business man in a suit and tie, a very nice lady you would never suspect, or a bum. There just isn't a "druggie" look.

Hugs,
Donna

[VickiB]

You're right, Donna. That was a bit sterotypical on my part, and I do know better!

I admit, when the doctor said this to me I felt a bit insulted. I can relate to Jack Nicholson in 'As Good as it gets',..."I hate pills, - dangerous thing, taking pills." I'm a terrible patient because I'll go to great lengths to avoid taking a drug if there's any other alternative. Of course, this Uro didn't know me.

It is a shame that this problem exists, as it makes it difficult for those who truly do need pain relief.

Vicki

[alycat]

I need a new uro as well. I live in Vancouver WA, and the uro I see is over in Portland (NOT a fun drive when you're in pain). I won't say his name here, but his bedside manner leaves a lot to be desired. I would love to find someone closer, but because of my insurance they have to be within the Kaiser system...

[bjcov]

Hopefully someone can help you. There are good docs (I've heard) at UW. But, since Portland is so big, theres gotta be someone around there that knows what they are doing. Good luck.

I thought the DMSO's were working? Not doing very well?

[purpleviolet]

Hi to all -

I go to those UW docs/nurse and they are super nice - one problem is that they do not read all the latest stuff however. They are fairly traditional. If you want to try something you need to bring in the articles, supporting evidence, etc. and maybe they will help you do it. I was disappointed they were not willing to contact Dr. Brokoff (sp?) to fully understand how he treats IC with valium. I got some, but not with much real info on how to use it. They are still a nice bunch if you can get in to see them. That's the problem. Appts are hard to come by. PV

[bjcov]

hey, thanks for the info. I have an appt. in a week. Its a 4hr drive. Hoping I can get some answers for this gotta go feeling that won't go away.

[alycat]

So, I fired my Portland Doc. ^.^ I'm now going to see another guy within the same system who's younger and has treated a lot of IC patients. I discovered that my insurance will cover a second opinion within the system, but won't cover anything outside, which I'm kinda mad about cause I wanted to try to see the UW uros. But we'll see if the new guy works out.

bjcov, yeah, the DMSO didn't do as well as I thought. I started to experience a slight worsening of symptoms after I went off of them, and I also figured out I can't do the full 50% strength cause it just kills me. I'm hopefully gonna have another Hydro/Cysto with the new doc to do a biopsy, since the last doc didn't do it (He forgot that I had even had a H/C done, at the last appointment he asked if I wanted to have one done for the first time. ERG.)

[edman4u]

Brandy,

My wife was recently diagnosed with IC by a physician at the Associated Physician for Women at Kadlec. This caught us completely offguard, having never heard of this disease and then whamo. Perhaps we can share information about treatment possibilities here in the Tri-Cities. I do a lot of web research trying to find treatments and therapy that will help my wife deal with this pain. She fought "fibromyalgia" for 4 years and we got that sort of licked before she got her hysterectomy and things went to hec and beyond, so I have, unfortunately, been forced to find as much information as possible by continually reading everything I can.

Best regards,

Dan

[bjcov]

thanks for the info. I also am going to a Dr at APW. he is great w/ pelvic dysfunction and stuff. I was working for another ob/gyn in Richland that had no interest or knowledge about IC. I did lots of studying myself and I get bummed when I hear of doctors around here doing things that are considered "old school" I am currently on Elavil 50mg and do pretty good most of the time. I went to 2 different uro's one in Yakima and in Richland. The Gyn at APW was the one I thought knew the most. Hoping just the Elavil does the trick. Good luck!
Brandy

[bjcov]

I am in the Tri-cities, luckily, I have been doing very well on Elavil 25-50mg. I see a gyn here in Richland. He seems a little old school, so thankfully the elavil is working.

[bjcov]

Alycat, it's been awhile. How's it going?

[edman4u]

Heya folks,

Been some time since I visited this forum. Just wanted to update the results on my wife's treatments for the IC. Back in fall of 2007 she had a complete Oophorectomy and hysterectomy. The obygyn at APW quickly put her on estrogen pills, but that didn't work out so well. Within a couple of weeks she started swelling up like a balloon around her ankles and fingers, breast were hurting like crazy. The scary things is that the doctor didn't seem to know the cause. It was an older nurse who listened to my wife and said it was hormonal. Not long after that she developed the IC and had to undergo two treatments of the bladder instillation treatment, which seemed to calm down the worst of it.

Our fibro doctor is Dr. Merrifield (she is no longer accepting patients unfortunately), who took over my wife's hormone therapy. She got rid of the pills, and gave her sublingual drops of both a bi-est and a progesterone at doses considerably lower than the pills, and both were bio-identical. She also put her on a lose dose of Elavil, about 0.5 mg if I remember correctly. She just stopped taking it a couple of days ago, decided she no longer needed it.

After the bladder instillation and the switch to the hormone drops, my wife hasn't had a flare up in since the initial case in early 2008. My feeling is that the high dose of un-opposed estrogen was what led to the problem, and by getting her back on a proper dose of both estrogen and progesterone, the latter being the important one, she got rid of the swelling in her body, was able to urinate fine, and generally improved her overall mood. She also, at Dr. Merrifield's guidance, changed her diet to a gluten free for several months. However, she doesn't follow it much any more, and eats pretty much anything she wants.

Not sure if this helps any, but thought I would put it out there.

Best wishes and God Bless.

Dan

[alycat]

Oh geez, it has been a long time since I posted, lol!

Still struggling with the uros in the Kaiser system. The one I see now doesn't believe that IC exists!!! He keeps telling me that I just "have chronic urethritis". It took my gyno to get any pain meds whatsoever. And then he prescribed Prozac telling me "Oh that'll help with the pain", but I come to find out Prozac is lowest on the list when it comes to pain management! GAH!

I have been doing well off and on lately. Taking Medical Transcription now to hopefully get a job I can do no matter how I feel (haven't worked since December T_T). Plus some kind of work in the medical field makes me feel like I'm pushing the industry forward in some small way.

[washingtonjen]

Hello Everyone. I'm fairly new to this site but have learned a lot since logging on a couple of weeks ago. For those of you here in Washington State, I have had several people recommend Urology Northwest. There is a particular doctor that has been recommended to me who works out of the Mountlake Terrace office (that's in Snohomish County). I plan to see her for a second opinion after I've finished the tests my current uro has recommended. I have already found some relief following a couple of recommendations from this website, the marshmallow root capsules and switching to bottled water (where we live we have a community well). The bottled water seemed to help almost immediately, so it makes me wonder if there were minerals or something else in the well water that were making it past the Pur filter, or if maybe there is something in the Pur filter itself that was irritating.

I'll post again after I've had a chance to see the doctor at Urology NW.

[purpleviolet]

Yes, keep us updated with your experience there. They are a bit far for me, but I wonder if they have different approaches. They have moved further from me. Went there for a drug trial with Dr. Jacoby long time ago. Unfortunately, drug didn't pan out, but that wasn't their fault.

[caskira]

I would also like to highly recomment Urology Northwest - http://www.urologynorthwest.com/index.html
I see Dr. Susan Walters, but imagine they would all be good. What's so great about this place is they have to many options - a naturopath (fabulous diet advice/help), acupuncture, referrals to PT, etc. along with the MD's and all the usual IC treatments. I appreciate their being open to non-prescription drug remedies.

[bjcov]

how did it go at Urology Northwest? What did they say? I'm currently seeing a doc in The tricities but the only thing I've done is Elavil. It usually helps but I do flare up a few times a year which is when I get on here for advice. Not really sure what started this flair. Could be a few things but I'm thinking it was because I was constipated and when I was struggling with that, my bladder went crazy! Its just so crappy that so many things can affect your bladder! Another thing that gives me flares is my period, which scares me when menopause comes. Intercourse is how all this started and certain foods at certain times will cause a flair. What really stinks is that there is really no meds that help with urgency. At least with pain you can take a pain pill. And my flares are felt in my urethra. I just wish there was something that could just numb it. It feels super sensitive and even sitting bothers it. Usually flares last for 3 days but everytime I flair, I get lots of anxiety and freak out which I'm sure doesn't help. I find myself being envious of my friends and think to myself, why are they able to have sex and eat anything they want and not me? (then I feel bad that I think that) Its just this POOR ME syndrome that I have I guess. Sorry about all the ranting. Just a little venting is what I needed.

[bjcov]

just checking in to see if everyone is doing oK! I've had a great year with IC and yet here I am in a flare! DANG IT! I've been juicing veggies and ok fruits hoping to heal my body quicker. They usually last 3 days so hoping for some releif soon. The anxiety during the flares are ridiculous! I wonder if I should ask for some sort of med to use as needed during flares? 12 years ago, before anyone knew what was wrong with me, I flared for 6 mths so now that every I get a flare, I freak thinking that itll never go away!!!!!

[bjcov]

Dan, hows your wife? I'm in a flare right now that they say is a urinary tract infection and its not getting better. Last you wrote, you said she was doing great! Can you tell me what was in her instillations? If you can remember, Thats my next step if this doesn't get better soon. I feel everything in my urethra so the thought of them scares the heck out of me! Oh, and who was her doc at APW?

[bjcov]

I called and was able to see Urology Northwest within 3 days! Of course I couldn't get there then. It's 4 hrs away but I've heard great things!