View Full Version : Anyone from CO?
07-07-2008, 08:48 AM
I have had bad luck with doctors in general in terms of getting answers about what's going on. Maybe I'm not good at asking questions?? Anyway, if anyone can recommend a good, understanding, compassionate, patient IC doc in CO I would truly appreciate it.
07-14-2008, 07:06 AM
Where are you in CO? I saw a Urogynecologist in Denver. her name is Dr. Terry Dunn and she's the sweetest!
07-14-2008, 08:14 AM
I am in the Boulder/Denver area. She obviously treats IC patients and knows a lot about it?
07-14-2008, 08:22 AM
Just started with her, diagnosed on Friday (cysto). She does not do any of the potassium testing or hydro. Too painful she said, especially is she suspects someone has IC. she diagnosed (and showed me) with the cysto that I had it. We are meeting next week to discuss next steps. I have other meds (zoloft) that I need to get off and so far she's just given me samples and when i've asked about getting off other stuff she hasn't had much time to go over that with me. So hoping she is good. But IC isn't anything new to her and she has a lot of IC patients!
07-14-2008, 08:28 AM
I just called to make an appointment. I have had a cysto and urodynamics with my current urologist. I started Elmiron last week and start instills again this week but my current uro is unwilling to manage the pain in any other way and doesn't seem to know a lot about IC in general. It was actually recommended that I see a urogyn by someone else on this forum, so I REALLY appreciate the info. Let me know how your journey goes and good luck!
07-14-2008, 08:31 AM
you too! If anything she is super sympathetic, which for me was a huge help in and of itself. what are instills? I know of them but specifically what to they do? she gave me elmiron and it is super expensive. That part sucks but I'll take it! :)
Good luck. Think she could just help you w/out all the tests. They are the worst!!!!
07-14-2008, 08:38 AM
I NEED super-sympathetic. :) Instills are where they catheterize you and put solution directly into your bladder. I was on lidocaine/marcaine/heparin instills before and now she's going to do Elmiron instills. Basically it's a bladder bandaid is how it was described to me. It coats your bladder & numbs everything to give relief from the pain...at least temporarily.
The tests are awful. I left my cysto crying and shaking because it was so painful. Not to mention the 30 minutes and two dilators it took to get the scope in because my urethra is so narrow. NEVER AGAIN WITHOUT ANESTHESIA!!
07-14-2008, 09:09 AM
Well I've only been to her three times (one first visit which she schedules an hour) and two test days. Limited time to chat but I look forward to next week. Expect some wait times in her office :) You are probably used to that! :) I hope she helps you!!! She hasn't done any gynecological exams yet but I think I'll have her do my pap/pelvic next time. Hoping she'll not do any more invasive stuff for awhile. I hate the caths even b/c they make me pee razor blades after! I don't think I could do instills. Do they help????
I took a list of quesitons and she went through them w/ me one by one. She definitely was nice about IC and believed me. I had never been diagnosed but I walked in w/ my entire history typed up and many questions and told HER I have it! She just confirmed my diagnosis! ha ha
Can youget your records sent ahead of time? :)
07-14-2008, 10:00 AM
I have had almost all of that testing. I've had TONS of pelvic exams, gyno testing, ultrasounds, xrays, etc. I've pretty much been through it all, what I need is a doc that understands IC and will treat it without telling me "well, we'll see". :) SO annoying.
Anyway, I have all of my uro records. I need to collect all of the records from the tens of UTI's that I have had (just got another one yesterday). They are calling me back tomorrow with an appointment time I guess. Hope I don't have to wait TOO long!
07-14-2008, 10:27 AM
I think they got me in in under two weeks. Seriously, it seemed so fast. The whole staff (minus one nurse) is super nice!
Let me know how it goes ok?
07-14-2008, 10:28 AM
Oh, be sure to tell her she is your 4th (or 100th) opinion! When I told her I'd been to 4 doctors before her, she was even more sympathetic. The motto for her clinic Foothills Urogyn. is to restore the patient to health and comfort or something like that. She said to me "you don't have to suffer anymore." The only concern I have is that she'll just slap me w/ meds that I hate to take!!!!
07-14-2008, 10:31 AM
Okay, I'll be sure to let her know that I've been put through the ringer! :P You have no idea how excited I am, actually. I was starting to feel like hope was lost and I wouldn't be able to find a good doc without going to tons of them. So I'm really hoping that she's the one!
I'll definitely let you know how it goes. I don't know if you have AIM or GTalk or anything, but if you do you should PM me and we can talk off the boards. Kinda cool to find someone local.
07-14-2008, 10:42 AM
I'm lucky she was only my 3rd specialist, but part of that was b/c we moved to CO from AZ. My AZ and first CO UROS did not do jack squat for me! They said I had over active bladder and handed me Enablex and Detrol. HA!
I used to have Yahoo instant messenger. How do I get AIM? I'm on Myspace and facebook etc. I know they have IMs. I don't have G talk b/c I'm not on Gmail....hmmmmm
07-14-2008, 10:44 AM
You can just sign up for a screen name on AIM.com and then use the web messenger or download the messenger. My SN is benutzerhandbuch (long and weird, I know).
You can also email me at email@example.com if you'd prefer.
07-14-2008, 02:37 PM
I got AIM! I'm "Divegirlky" :)
I'll look you up too.
I"d like to chat w/ you about the IC diet. Its soooo overwhelming. I subsist on Yogurt, tomato sauce and everything aspartame.
07-15-2008, 04:05 AM
I added you to my buddy list. I stay logged on to AIM all day when I'm at work, so say hi when you can.
I don't know a whole lot about the diet...I really just started looking into that myself. I actually don't eat a lot of the foods that most people find irritating (from what I've read). What I've had to completely cut out is alcohol & caffeine.
07-15-2008, 04:58 AM
I just realized its DiverKy! :) I am going to have to unload AIM from my work laptop though. I just realized that it is slowing my computer WAYYYYY down and had trouble logging into it today! So, I may have to stop using it and just put it on my computer at home. Shoot!
07-15-2008, 04:59 AM
I usually just do AIM Express or load my buddy list in my gmail. We aren't allowed to put anything on our work computers, so it just runs it through a web application. AOL/AIM kinda sucks.
07-15-2008, 06:59 AM
My appointment is next Friday 7/25! Now the task of collecting medical records from my list of doctors offices...
07-15-2008, 07:04 AM
That was super fast! Well keep me posted. I go in thursday. We just missed eachother. :)
I'm feeling depressed and irritable today. Sucks getting off Zoloft after 10 years! I hope the new stuff helps my anxiety/dep. too!
I am trying to plug in a headset at work and I am about to throw it thru the wall!!!!!
07-15-2008, 07:09 AM
I know, I was surprised. I'm SO excited though, you have no idea. I'm almost giddy about it, stupid, I know. Too bad we're not going on the same day!
I was on Zoloft for like 3 weeks and ended up in the hospital from it. Nasty stuff. I tried a few more anti-depressants too and just ended up losing TOO much weight and not being able to eat. Even the ones like amytriptiline that are supposed to make you gain weight, I lost on. So I take Buspar (well, I'm supposed to) for anxiety and don't do the anti-depressant thing anymore. But I feel for you, I'm sure it's not pleasant AT all.
WOOO SAHHH. :)
07-15-2008, 07:21 AM
I am giddy for you too! I know exactly how you feel, excited, despite what they may do to you. :) I felt that way. I'm excited to talk to her and hope she knows something about the diet. I absoultely survive on all the foods you can't have. I have Zoloft for years ago and hope I can transition, I need to get off of it so we can have kids, so that's the bigger factor.
Anti depressants are crazy!
So, what is your scoop? Live in Boulder? what do you do? Kids?
07-15-2008, 07:34 AM
I have been through so many tests and procedures at this point that I don't care WHAT they have to do to me as long as I can start getting some help and answers!
What is she putting on on in lieu of the Zoloft? I'm actually kind of glad that I couldn't tolerate the antidepressants, I think it's a blessing in disguise. I don't like the thought of being dependent on anything. I'm glad for you that you are getting off and I hope that you are able to find something else that works. Meditation?? :)
Well, I'm 25 and my name is ERIN. hehe. I live in Broomfield right now, but I was born and raised in Boulder. I have a boyfriend, which has been kind of off and on. I think the IC and medical problems in general cause some friction between us. He never gets sick and never goes to the doctor, so he can't understand why I live in doctor's offices. And he always tells me "you don't look sick", which is hard because I DON'T! I definitely do not want kids. Actually, I doubt that I will ever get married or have children. Not really what I want out of life. Other then that I work your typical boring 9-5. I'm kind of a free spirit. I just live life and try to stay happy.
07-15-2008, 07:48 AM
Wow, I hear ya. My hubby is the same, thinks I go to the doctors for kicks! ha ha! :) I hope she is what you want and need! :)
I love boulder. We just moved here from AZ a couple of years ago! we love Colorado!
We are newly married, I'm 32, we want kids and I wish I would have worked on that a long time ago! We're ready now but my body is not! I hope it gets better on that!
I am supposed to go on Tonfranil instead of Zoloft but for different reasons. Zoloft was for depression but the new one is for me to help my bladder spasms slow down. I do have that too, from the urodynmanic results, I'm spastic. :)
We'll see. I just want to sit down and tell her how concerned I am about my meds. I hate meds too and would prefer nothing at all! :)
07-15-2008, 08:10 AM
I hate that. It's like "This is not fun for me". And it gets so expensive even with insurance.
Where are you at in CO? I like it here too, but then I don't have much to compare it to except for a 6 month stint in West Palm Beach, FL. Boulder is um...interesting.
I was reading something about how some women go into remission while they're pregnant. Did you find that thread? I didn't look into it because it doesn't really concern me, but you might want to check it out if you're worried about the IC and pregnancy.
I don't really mind being on meds as long as they're helping. I have just been on and off so much stuff in the last year that it's ridiculous. I can't tell what my body is actually doing most of the time or if it's side effects or what. My PCP put me on birth control, zoloft and xanax all at the same time last year and that's when I ended up in the hospital. The birth control (Yaz) I think caused me to have a lot more UTI's, so I got off of it. I was also having irregular periods and bleeding on it which I have NEVER had in my life. I couldn't tolerate Zoloft, Lexapro or Wellbutrin; they totally killed my appetite. I wouldn't eat for like 9 days at a time. Then I tried a couple of tricyclic anti depressants, amitryptiline and trazadone, which didn't seem to do much for me at all except make me sleepy and hung over. My psychiatrist put me on Buspar, which I was taking regularly for a while and then I just quit one day and have been fine. I can't do the blood pressure meds for anxiety because my blood pressure is already too low, so they don't want me fainting. I kept having REALLY bad UTI's and the pelvic pain started like 7 months ago and hasn't gone away, so I finally went to see a urologist. They did a cysto and the urodynamics and diagnosed me with IC and pelvic pain syndrome, which I guess is a broad term that basically describes most IC patients. I have all kinds of issues w/ my bladder. I can only hold like 135cc's without pain, my voiding patterns are crazy because I have to like TRY to pee. So they put me on Urelle and Urised and of course Pyridium (which I HATE, but unfortunately it works the best for me). I was also doing the instills which I told you about and then stopped because I ended up having emergency surgery in April and couldn't financially afford a $40 copay twice a week for the instills and the PT. So I just went back to my uro last Monday and he started me on the Elmiron, which doesn't seem to be doing much yet...I guess it can take months to start working. I have another round of instillations which start on Thursday. Oh, somewhere in there I also had a colonoscopy. Woo hoo.
I don't know how I got started on all of that. LOL. My point was all the meds. I don't like to be on any type of "mood enhancers" I decided. I'm not much for being on pills either, actually, but if it helps w/ the IC pain and all around ANNOYINGNESS of the whole thing then I'm all for it.
07-15-2008, 09:37 AM
Wow, reading what all you've been through makes me feel like a baby. I get myself soooo worked up for all these things and they aren't that bad! I didn't think the cysto or Cath were that bad. Never done the colonoscopy though I have had a lower GI. You've been through the ringer! I hear ya, I agree on meds, if they help. My doctor said I'd feel better in a couple months on Elmiron and then BOOM in a year, a ton better! I'm worried about the $$ too as she wants me on PT too. What is Urelle, Pyridium, Ursed? I've heard of them but can't keep 'em all straight!
I have read that pregnancy makes things better. The problem for me is sex aggravates the entire situation. I flare during ovulation, which is precisely the time when we need to have sex and that makes it all the worse. My husband is afraid to touch me so you can guess how our sex life goes at this point! :) So we're just trying all the things to make it better. It is tough. I have found a bath or shower after is great but that is tough when its already bed time. OY! :)
She told me I only held 145 CCs before I said "OWW" which to me is not really pain as much as urgency. I flux between periods of urgency and periods of abject pain and sometimes my bladder just aches. I'd say I probably have that Vulvadermia (or whatever) b/c it always burns on the outside and my urethra is probably my most common area of pain. It always burns, more than my bladder. My problem is sitting at work and I have clients all day and I have to get up and go. I have them scheduled with potty time so I can go between each client if I need to (every hour). Sometimes I go ever half hour. I am excited to see the rest of her results and hear what she says! She wants me to do PT for the bladder spasms but I know, with you, this stuff is all super expensive and considering I have sucky insurance well, you know.....:bonk:
So for now, I pee, burn and wait. :)
07-15-2008, 10:01 AM
Lol. Pee, burn & wait. I like that.
The colonoscopy really wasn't bad. They knock you out. I'm actually glad I had it because they found polyps which is really unusual for someone my age and they were pre-cancerous so now I know to have one every 3 years. The weirdest thing about this is that I have NEVER had a medical problem in my life until about 18 months ago when this all started. In fact I didn't have health insurance for a long time and never needed it. Before I got my first UTI, I hadn't been to the doctor in like 6 or 7 years. But yah, it gets extremely expensive and I'm so glad I have insurance. Mine is actually pretty good, but it's a $40 copay for specialists which is all I see obviously, so $80 a week for the instills and the PT definitely puts a damper on my expendable income. :)
Pyridium, Urised and Urelle all basically do the same thing. They are used to alleviate the burning, frequency, urgency by numbing the bladder somehow. Pyridium is really just a numbing agent, but works best for me when I have a UTI...it's the same as like the Azo or Uristat that you get over the counter. Turns everything orange and makes it so that you can pee without having constant burning and helps you not feel like you have to go to the bathroom ALL the time. I was reading something on here that was saying it's not good for everyday use though, some docs think it's unsafe. Not sure why. It also makes a lot of people sick to their stomach, myself included. When I have an infection though I would rather feel like I'm going to hurl then feel the pain, so it's a trade off. Urised and Urelle are blue and turn everything blue or green and from what I gather they are pretty similar. They have the numbing effect as well but also have an agent that helps to stop bladder spasms (hyo something. It's the same as Levsin/Levbid which I have had for colon spasms). They work by relaxing the smooth muscles. I have not had luck with bladder relief from either of them, infection or not. I do know that the Levsin/Levbid is really good for my colon spasms though, so I would imagine that it works well for bladder spams as well.
The cysto was awful for me because my urethra is so narrow that they had to dilate (did I tell you that before?). It was just a horrible experience all around for me. I felt like such a baby, I was crying while they were doing it. It was embarrassing!
I also pee probably every half an hour...an hour if I'm lucky. My job is just your typical desk job, so it's fine for me at work. I hate going out though and always being paranoid about whether or not there's going to be a bathroom and if the people I'm with are going to understand why I HAVE to go so much and all that. I actually had no idea that the frequency/urgency was such a big part of IC. I had a UTI for almost 3 months at the beginning of this year and thought that it was just part of that, until it didn't go away with the infection. Blah.
Luckily for me, the pain from sex is bearable. Sometimes it's worse than others and I have definitely been in HORRIBLE pain afterward, but nothing that discourages me from wanting to have it. I feel fortunate after reading how some of the women here can't have sex at all or don't want to because of the pain. My boyfriend DEFINITELY wouldn't understand that. lol.
What is the vulva-whatever? I have heard a lot of people talking about that on here, but haven't heard anything about it from my doc and don't know what it is.
07-18-2008, 05:59 AM
Hey friend! sorry I haven't written you back. These last few days have been nuts! Anyway, Sounds like Urelle and all those are like my Ultira C I got from the doctor. They turn your pee blue/green so must be the same.
Vulvo whatever is pain in the vulvar area. For me it feels like burning etc. Its kinda painful and seems like everything irritates it, sex, underwear, toilet paper wiping etc. I plan to talk to the doctor about that next week.
I'm so sorry about your colonoscopy results! That is too bad! I'm glad you did it too and are on top of it. Do you ever feel like you are so young and your body is falling apart? I do all the time! I think how am I ever going to keep up with kids when I am already so damn tired! :)
I always try to focus on the fact that somewhere, someone is worse off than me. They ahve a worse condition or something than me, or are in Iraq away from family etc. etc. That always helps me cope. It is tough though sometimes and I get down.
Its funny that all my life I've been known as the one with the "small bladder." I produce a lot of urine b/c I drink a lot of water, but then again, when you are going every 30 minutes there ain't much to pee. I hate when I just went, get back to my desk and there is the tingling urge to go again and I know there is nothing in there! :cussing:
I have heard taking the numbing stuff long term is bad. I take it and then I start getting nauseous and dizzy. I was taking AZO 3x a day for a week and started getting sick. ICK!
So, how are you feeling today? I forgot to mention I live in Colo. Springs. Just down the road from you! :)
07-18-2008, 07:03 AM
No problem. I DO feel as though my body is falling apart most of the time. Lol. Every time I walk into my uro office it's all these OLDDDD men and I feel like I shouldn't be there! Sucks to have bladder problems at the ripe old age of 25.
So I went yesterday for my first instill since the heparin recall. They replaced it w/ the Elmiron. OHMIGOD, I was in worse pain yesterday when I left then before I went in. Not only that, but the cath hurt so bad and then it burned when I peed for 8 hours after that. Being at work all day sucked. I think I will have to tell the nurse next week that that particular instill hurt. I have another one on Thursday and then my appt with Dr. Dunn on Friday. STILL excited, by the way.
Unfortunately the Azo/pyridium/Uristat do make you sick, but they also help the burning SO much when I have an UTI. Oh yah, I got one of those on Sunday too. Fun! $50 and an urgent care visit. I hadn't had one in 3 1/2 months and was ecstatic, but it looks like they're back again. I actually asked the nurse yesterday about the correlation between UTI's and IC and she said "well of course you're going to get UTI's because there are cracks in your bladder and the bacteria can get in them". I don't know how true that is, if at all. I have read a lot of stories on here about people w/ IC that don't get UTI's. Just another reason I need a new doc!
How are YOU feeling today?? Wow, you drive all the way up to Denver for your doctor's appointments...she must be good!
07-18-2008, 07:20 AM
OWWWWIE! THat sounds awful! They aren't supposed to make you feel worse! The caths make me pee razor blades for a bit too. I hate it, its almost worse than the procedure! I grip the bathroom wall and scream! Tell her all that, the instills and everything. I don't get the vibe she does much of that. I don't have a copay b/c I have a "high deductible" with my insurance so wonder what my bill will be like. I just watched that movie "Sicko" that Michael Moore did about the health care system and makes me want to move to france where they get 6 weeks paid "holiday" a year and 6 months paid maternity leave!
I go to an endocrinologist in the same office building. there is only one in the springs and she had a 3 month wait time. There are zero UROGYNs down here so I made sure I told her I drive up there. Went 3 times in a week. Its worth it for me if I can get help. It only takes me an hour to get there, so its no biggie. :) With gas prices its a lot though!
I get a lot of UTIs. But I never get them checked b/c I assume I have a flare. When I went to Dr. Dunn they checked my pee and I had one! No wonder I felt like crap. My pain is more in my urethra than my bladder so I always wonder if its a UTI but then I used to always go in the doc and it wasn't so I quit going. Now I will need to but won't drive to Denver to pee in a cup. I always read that that is one of the things that makes diagnosis hard for IC. Mostly they diagnose you with it if you do NOT have UTIs????
I'm actually feeling ok. I am doing good. Eating all the same stuff (not on IC diet yet, I'll starve!) and not having isssues. I always hae some amount of burning but for now its not bad. I think its b/c I'm on my period. :)
07-26-2008, 03:43 AM
Hello to you, my friend! How was your appointment this week? I couldn't wait to post how mine was yesterday; aside from the getting a bit lost in Denver b/c I missed the South Downing Exit and should've just listened to my iPhone and arriving 15 minutes late, it was WONDERFUL. I absolutely love Dr. Dunn. No poking, no prodding. One of the girls at the front desk threw away my urology records LOL by accident and marked my EKG as my urodynamics test, but we got that all straightened out. I just explained to Dr. Dunn what I had been going through and I did start crying a little bit (I finally felt like someone was HEARING me!!!) and she told me that we have SO many options. She doesn't believe in instillations and told me to stop them immediately...esp if my new mixture is hurting. So I am going to cancel my appt w/ my other uro...permanently. She upped my dose of Elmiron to 400mg/day but I take it twice, once in the morn and once before bed. She also put me on Lyrica 75mg @ bedtime for a week and then bump it up to 150mg. The last thing she put me on is an anti-histimine called Vistaril; 25mg @ before bed for that one as well.
Let me tell you, I am SO excited and I have hope for the first time in the last 2 years. I cannot thank you enough for letting me know that this Dr. Dunn existed! She completely understood how most urologists treats us ICers and was just amazing.
Let me know how your appt went! OH and I got a massage after my appointment, so my day was just amazing. Couldn't ask for a better day.
I'm going to post a thread on Lyrica and see what people think of it. I read a lot about weigt gain. :( I only weigh 90 lbs...but I like it that way.
Talk to you soon!
07-26-2008, 09:26 AM
I am sooooo sooooo soooooo happy 4 you! I was thinking about you yesterday and wondering how it went! I have my cousin here, so its been nuts! I am sooo glad you have hope and I'm so glad Dr. D was great to you. Wow, so some med changes? Let me know how it goes. How tall are you? 90 pounds! You are tiny! I can definitely gain weight so I watch it too. I'm 5'7" about 119. :)
My appointment was ok. I was a little disappointed. I realized that i should expect a rushed visit. 1) she was behind and 2) it was a 15 minute appt. I was disappointed b/c I expected her to go over my test results. She really didn't. Just asked how the new meds were going. I told her I was tapering myself off zoloft myself and couldn't do all the drugs she gave me! She just said "oh, good for you." I had a list of questions, and I kept asking another one and another one and another one and She kept saying "Ok?" like hurry up. I was a little sad. But I know all my meds are good. I take 2 Elmiron morning 2 at night. Its a little hard with having an empty stomach. I eat all the time! Anyway, she was ok, just told me to come back in 3 months. I'm not sure what I think. I had a few more questions (about Lidocane jelly for sex) etc. etc. didn't get ot ask her about Vulvodynia and urethral symptoms. I was just kinda bummed when I left. But I think its just gonna be taking some time to get everything regulated. I also said my breast was stlil leaking greenish fluid (she put me on meds for breast infection, she didn't act concerned.)
Anyway, I am not giving up on her for sure. She believes me. She told me I wasn't crazy and is on meds for me. Turns out the other antidepress. she gave me was elavil. I thought it was all tofranil. I am putting my treatment plan together myself. Taper off zoloft, take elmiron 2 weeks, then start elavil. Get on IC diet, etc. etc. I told her I was journaling. I thought she might have more advice for behavioral stuff.
Anyway, I'm sooo glad you're ok. we'll talk soon. Keep me posted!
07-26-2008, 10:20 PM
Hi to both of you! I was so surprised to hear about someone seeing Dr. Dunn. How did you first hear about her? I'm actually going to her as the surgeon who is going to do a hysterectomy and some pelvic floor repair from long-term prolapse problems probably due to childrbirth years ago. I have my surgery scheduled for Sept. 29th.
The fact is that I have IC so we're not sure if this is what is aggravating the IC, causing it, or if fixing this will really help my IC. I do know, though, that in the meantime it will be very painful and it's taken me years to get to this point and to find a surgeon. I've had 5 opinions and I actually found her myself from the American Urogynecology Assn...but I'd been nervous because my regular doctors weren't familiar with her. But I loved her and was only waiting to find out about her references. I've since talked to the nurse who used to work for her at Denver Health and Hospitals and said she was excellent.
If both of you are really new to IC, though, you may find it disappointing not to get a lot of real direction from her. I've found that there's not a doctor in Denver who deals really effectively with IC and really knows quite what to do. I've used a pretty ecclectic approach taking a little bit from here and a little from there and the main thing I do is Vicodin as needed prescribed by the wonderful pain doctor in Denver who deals with IC pain, Dr. Daniel Brookoff. I didn't find any of the other medicines (vistaril, elavil, elmiron, lyrica, cymbalta, valium) helpful to me and you have to take them continuously. Have either of you seen or heard of Nel Gerig or Kristinell Keil. They're the ones who many IC'ers go to here and some have good luck and others none.
Got to go to bed. It's 3 in the morning. Some of us on this network have talked about a support group in Denver and haven't managed to put one together yet. Any interest? It's hard to get everyone pulled together, but I could do it at my house. I live in a very central location. Keep me posted on how it goes with Dr. Dunn. Nancy
07-28-2008, 06:37 AM
Thanks for your post! I would be very interested in a support group, however, I live in the Springs. Commuting to Denver is difficult for me with gas prices. It already costs me and arm and leg to come up with Dr. Dunn visits! 4 times in 2 weeks! Yikes! Anyway, I'd love to meet once and then just do support online sometimes. I always have a ton of questions and you two have already been thru a lot more than me!
I am hopeful with Dr. Dunn even though her visit last time was a little disappointing. I just started Elavil and Elmiron, so I can't worry too much about it not working yet. I have to give it some time. That said, I only have time to cling to hope. That's all I can do. :)
07-28-2008, 07:01 AM
I really liked Dr. Dunn, however I also was a bit disappointed in the amount of time she spent talking to me about what was going on. She did prescribe Lyrica and hydroxyzine, which I didn't take until Saturday night and I slept ALLLLLL day yesterday. I as a bit upset because I wasted my Sunday. So I called and had her call me (I kinda felt like I was interrupting her dinner or something) and she told me just to take the hydroxyzine and add the Lyrica this weekend and just let my body get used to it since it seems I'm very sensitive to medication.
Anyway, she didn't rush me out or anything and she was very encouraging but I agree with you that I was a little bit disappointed (although happier w/ her tne I was w/ my previous uro). I'm going to try to get on the waiting list for Dr. Brookhoff actually...maybe you should look into that as well.
I'm totally interested in a support group, I'm in Boulder. If we can work something out just let me know. My personal email is firstname.lastname@example.org. If you'd all like to email me and we can exchange phone numbers, etc. that would work for me. You know, we could always do a 3-way telephone support group as well...just a thought.
Hope you both have a wonderful day!
07-28-2008, 07:14 AM
That sucks! What are those two for? That is a waste for sure. I'm like you, hypersensitive to some drugs. I told her that and she agreed and said that she believes me. Like how I can get spazzed out from low does Elavil and the vicodin and ativan combo for the cysto didn't phase me! Weird!
we should definitely do a support group. I'm willing to drive up once every month or two for sure. We could always meet in Castle rock at Starbucks. :)
07-28-2008, 07:21 AM
Lyrica is prescribed generally for fibromyalgia and anti-seizure, but I guess it's supposed to help w/ nerve pain. (When I had my cysto they gave me NOTHING, by the way. :() ANYWAYS, the hydroxyzine (Vistaril) is an antihistamine....I guess they think that IC is related to histamines in some way. So that's my new plan for now. Oh and she upped my Elmiron to 400mg, 200 in the morning and 200 at night instead of trying to take it in the middle of the day.
I can do Castle Rock or anywhere else really, we should definitely try to coordinate something! And I'm not just saying that...you know how sometimes people are like "oh we should totally get together" and you all know it's never going to happen...well I think in this case we really do need to get together. I need to be around some people that understand what I'm going through, so I will drive to wherever I need to to make it happen. Lets get this ball rolling!! :dance:
07-28-2008, 07:25 AM
I get it. I have bad allergies so maybe I need an antihistamine too? :)
So, it takes me about 1:15 to get to Dr. Dunn's. What if we met in S. Denver, at Park Meadows mall or something? that way it is a somewhat of an equal drive for everyone. Or, we could alternate Denver with the Springs? I wonder if there are people down here with this and they are not online yet. I'll post something....
07-28-2008, 07:28 AM
Sounds good. I'm definitely willing to drive to the Springs as well. I actually want to go to Cave of the Winds, so that would be a good excuse to actually get my butt down there! :) When is your next appt? Mine is Aug 22 @ 2:45. I wonder if we could coordinate appts on the same day...
I would def ask about the antihistamine.
Let me know what you post so I can check it out.
07-28-2008, 07:34 AM
Just posted under Rocky Mtn. States. sounds like our new friend knows some folks. I want to go to cave of the winds too! I have wanted to for years and have been when I was little! We could make it an outing! :)
My next appt. is in October. :( she wants me to return in 3 months. My endocrinologist is in the same building so I'm gonna ask him what he thinks of all this. he is GREAT and I have an appt. next week!
07-28-2008, 07:38 AM
Awesome! Well looks like we won't be able to meet in Denver anytime soon then. Should we plan a Cave of the Winds outing? I want to go SOON, so let me know when you're free! Do you have a person email addy and we can exchange info?
07-28-2008, 07:39 AM
Oh, I could always meet you down in Denver next week then. What day/time is your appt? I'm free all week and can usually get off work early if I have to. We could do lunch or coffee (I drink hot chocolate...:)) if you'd like.
07-28-2008, 07:44 AM
I could maybe meet you around my endo. appt. for hot chocolate! :) Let me find out when it is and let you know!
07-30-2008, 04:30 AM
BUMMER! My insurance does not cover Dr. Brookhoff. I hear nothing but good things about him! Do you guys know what an office visit costs out of pocket?
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