Pa?

[GriffsMommy]

Anyone in or near Lancaster PA? I live right outside of downtown Lancaster but am originally from Baltimore MD. Would love to talk to someone close to me.

[Berkshire Road]

Isn't Lancaster where Sesame Place is? We're about an hour from there in New Jersey. We used to have season passes to Sesame Place and go out there all the time, but now that my daughter is nearly twelve... not so much.

No one around here is willing to admit to being from New Jersey, so I'm reaching out to my "neighbors" in NY and PA. So -- hi, neighbor!

[GriffsMommy]

Actually Seasame Place is a couple hours from here. My hubby really wants to take our 2 1/2 year old there. He said no matter what he is finding the money to take him for his 3rd birthday this summer because he thinks he will love it. Well New Jersey isn't too far away, I'm orginally from Baltimore. I was just trying to see if there were any people close to me. The closest support group seems to be in Philly as well as all the list of Dr's for PA listed on the site are in Philly which is just too far to travel.

[Berkshire Road]

He will love Sesame Place. It's got a ton of both water and dry activities that a three year old can do. And if he watches the show, he'll love meeting the characters.

The admission price is insanely high, but for a birthday treat it's definitely worth it!

[Horsewoman1]

Hi this is the first I have done this and just wanted to let you know someone in the area does have IC just like you, you would be the first person I would ever know who also has this. I have had it 5 years and also take Elmeron. I must go now but I will keep in touch. Sincerely Judy

[Patrice]

I'm not too far...Chester County. Some of my coworkers live in Lanco.

[GriffsMommy]

Wow! It's nice to know that there are some people in our area. I really thought that there are no other people that have IC around here because everyone I know has never even heard of it. But when I called the urologist office to make an appointment apparently two of the dr's see a lot of IC patients so I guess there are more out there than we know.
Judy: Do you have a good urologist that you use, I would love to know just in case the dr that I'm going to in two weeks doesn't work out.

[Horsewoman1]

Yes chester county is really close and there are allot of horses in that county. I am still getting the hang of this messaging I need to read how to do it properly . Best to you Judy

[Horsewoman1]

Hi yes that is how I feel too, you would be the first person I would ever know that was diagnosed with it like me in Lancaster county . I must go look who my uriologist is he is young and, that sounds odd but I had Dr. Walker for 5 years and I loved him and now he retired so they but me with a young guy and he was ok, he did not like some of the things I was doing that I learned on the ic web page, like I take prylosect for heart burn and that seems to help with the acid in my body, Dr. Walker would write a script for it but this guy scolded me and said a uriologist should not be writing for antacids.
I did not argue with him, because I will be moving to Montana in June and I will have to find a new Dr. out there. But if you want his name I will look it up. I go to the health campus lower floor. Keep in touch : sincerely Judy

[GriffsMommy]

Judy,
Don't worry about getting me the name of your urologist, if he's not that great then I'll see how it goes at this appointment I have on the 15th. This dr is at the health campus too so he might even be in the same practice. I just feel like it's going to be hard to find a good IC dr. Dr Rapp at May Grant is who diagnoised me but because they are gyn's I felt it would be better to actually see a urologist. Guess we'll see how it goes.

[Berkshire Road]

Well, I see a GYN for my IC and he is amazing, but he has dedicated his entire practice to dealing with female pelvic pain. He's in Bethlehem -- Dr. Echenberg. It's an hour's drive each way for me and I am not comfortable in a car, but he is totally worth it. So if any of you are within reach of the Allentown/Bethlehem area, I highly recommend him. Tell him I sent you ;)

[GriffsMommy]

I'll let you know if I need the name of your gyn, thanks! I would like to see someone closer to home if I can find a good dr in the area before I try someone who is over an hour away. I work full time and my hubby stays at home w/ Griff so I have to always be thinking about missing work when it comes to dr appointments. The uro I'm going to see on the 15th is only a couple of minutes away and the nurse at the practice said that he sees the most IC patients out of all the dr's in the practice so hopefully that means something. Guess we'll have to wait and see.

[chainsaw]

I live over by Gettysburg. I am about an hour out of Lancaster. About an half hour out of Hanover.
Kim

[GriffsMommy]

Hi Kim!
I know that I've at least driven through Gettysburg w/ my hubby before. I know it's not too far. It's just nice to know there are people in the area that are going through the same thing.

[smcclafferty]

Well, I see a GYN for my IC and he is amazing, but he has dedicated his entire practice to dealing with female pelvic pain. He's in Bethlehem -- Dr. Echenberg. It's an hour's drive each way for me and I am not comfortable in a car, but he is totally worth it. So if any of you are within reach of the Allentown/Bethlehem area, I highly recommend him. Tell him I sent you ;)

Hi Caroline...is he experienced in IC...I need someone who really knows a lot about ic...thank you.

[journalibra]

Hi, I'm Samantha. I live in Chester County on the Main Line right near Valley Forge National Park. I'm about an hour and a half from Lancaster (my sister went to school at F&M so I've made the trip many times). It is so good to hear that there are some other people "around here" that have I.C. I feel very alone trying to not allow I.C. take over my life. I am newly diagnosed and very frustrated with this condition and the pain and all that annoying stuff. Just wanted to say hi!

[Patrice]

Hi Samantha

I'm from Chester County too..live in Downingtown, work in West Chester!

[lnseagraves]

Hey,

I am from New Castle County, DE. Thats right over the border from Chester County. I really like my urologist. He's at Brandywine Urology, down 202. I would really recommend that place. They are all very knowlegable and get a lot of IC patients. They are also very sympathetic and not overly dire. Sometimes its nice having an optimistic doctor.

[Patrice]

Hey Inseagraves, that's great to know..my uro is in Philly which as you know can be 35 minutes or 1 1/2 hours depending on traffic. I'll keep Brandywine Urology in mind. My brother lives in Newark. Actually, he just bought another house so he'll be moving. I can't think of the town but it's closer to Kennett; maybe off route 7 near 41.

[Kay1063]

Hi Christine,

I live in eastern Lancaster County, near Gap. I was diagnosed last Sept. with IC. I have been on Elmiron since Oct. and started atarax about 2 months ago. I still am having pain off an on. I was told that Elmiron takes a while to work but I'm getting pretty frustrated. Who is the urologist that you saw? I currently am seeing my gyn who deals with uro problems.
Sandy

[GriffsMommy]

Hi Sandy,
It's great to hear from someone that is close by, at least in the same county. I'm currently seeing Dr. Bartges, he's at Lancaster Urological Group over at the Health Campus. I'm having my first hydro done with him this afternoon. He is really nice and I really trust him. My gyn diagnoised me with the PST but then just gave me Elmiron and didn't really do anything else.

[Horsewoman1]

Hi Kay I have been on elmiron 5 years now and I do think it helps . The group I go to is at the health campus lower floor. My Doctor used to be Dr. Walker and he was such a kind and compassionate man, however he retired and this year I saw a young Doctor I cannot remember his name I am sorry, but I was not to happy with him, but he did run some blood test on me to make sure everything was good since I take the elmiron. If you ever need someone to talk to, my number is 653 2744. I will be moving in June to Montana so I must find a new Doctor out there and that might be difficult. Take care and thanks for saying hello.

[Aya]

Hi!
My name is Aya. I live near Lewisburg, PA. Not to terribly far from Lancaster. I have to go to Philadelphia to get IC care. Its an hour drive to Harrisburg, then about 2 hours on Amtrac to Philly. I used to have to go every month but now go about twice a year to the Graduate Hospital. The trip is totally worth it. I would not be able to work my flex job without their help. Its pretty isolating up here because I don't know anyone personally who has IC. Would love to get together with northeastern IC people.

[Sarilou81]

Wow.. I'm from a little town on the boarder of Chester, Lancaster, and Berks Co's. but now I'm up in State College- a little far away. I wish I would have known about this site when I lived back home! I don't know anyone around here with IC, but my uro assures me I'm not the only one. I come back to visit in-laws every once in a while, I'd love to meet up with some of you guys.

Also - Sesame Place is in Langhorne outside of Philly.

[Aya]

Hi Sarilou, I'm 1 hour away from State College. I go through there several times a month on my way to my mothers in Ebensburg and my daughters in Pittsburgh. I like to go to the Japanese restaurant, Say Sushi. My IC is very food sensitive, but with Amitriptyline and Hydroxyzine I usually get by. I've had my share of flares the last 25 years. Is your IC very food sensitive?

Aya:

[ads]

I noticed Aya mentioned she travels by train. If some of you do end up having to leave you local area for better quality of care, which I have had to do many many times. (I would be stuck between the bed and bathroom 24/7 if not for leaving my state many times for good quality medical care) In the NE there is a pretty good train system going into Philly and NYC and as well as areas of NJ. Amtrak has bathrooms and so does the NJ transit, which is cheaper to ride than Amtrak. The Philadelphia system is called SEPTA and I never rode on a train with a bathroom, but one or two may have them. (All of these systems have websites in which you can plan your trip and some even give you the walking distance to and from you location. Philly SEPTA www.septa.org and Amtrak (http://www.amtrak.com/servlet/ContentServer?pagename=Amtrak/HomePage)

One will get a nice discount with a medicare card or a proof of disability. The medicare card is automatic, but without you may need to fill out a form and get a special card from the train system. One can even stand up on trains sometimes and that is great for those of us who can't stand sitting. The train does rock a little, but it is better than bumps on the road in a car -- at least for me.

I lived in Philly for a short period and gave up driving because riding the train was more comfotable with IC and PFD. I wish you all the best in finding the right doctors. Unfortunately, sometimes it is worth a trip and will cut down on appointments because the doctor actually knows what they are doing! Imagine...

ads


Hi!
My name is Aya. I live near Lewisburg, PA. Not to terribly far from Lancaster. I have to go to Philadelphia to get IC care. Its an hour drive to Harrisburg, then about 2 hours on Amtrac to Philly. I used to have to go every month but now go about twice a year to the Graduate Hospital. The trip is totally worth it. I would not be able to work my flex job without their help. Its pretty isolating up here because I don't know anyone personally who has IC. Would love to get together with northeastern IC people.

[irishnan3]

Hi Griff's mommy
I live about 1 hour away from you in Hellertown PA. It would be nice to have someone close to talk to. I and also 1 hr. from Sesame Place. I am a nanny and take the kids there once a yr. It is a really neat place they will love it. It is in Langhorne PA. I also have family all over Lancaster. I will be heading out that way over the Memorial day weekend. Dreading the ride have to stop to many times Pee breaks.......

[GriffsMommy]

Patty, it is nice to know that there is someone close by. If you ever want to talk PM me I can give you my number or I can take yours as I have free long distance.

I'm sure Griffin will love Sesame Place when we take him there this year for his third birthday.

[pennstate71]

So I know this post is fairly old, but I live right outside of Harrisburg, but actually did my undergrad at Millersville and still visit one of my roomates (and her beautiful little girls!) on occasion in Lancaster. Gotta love the shopping :)

[Sarilou81]

I know this is an old thread and I've replied once before. However, I'm still in State College and would love to meet with anyone who is visiting Penn State. Just send me a message anytime.

[kathryn6443]

hello there! new to the forum and recently diagnosed from Lancaster Pa....anyone close? Is Griffsmommy still on?
-Kat

[irishnan3]

Hi Kat,
I am about 1 hr. 15 mins. from Lancaster, Pa I live in Springtown, Pa.
If you ever want to talk feel free to contact me anytime.
Patty

[Goodnightmoon]

Hi,

I live right across the border in DE, about 1 h 15 min from Lancaster!

So good to see how many of us are out there!!

[icgennifer]

I'm in Newtown.. about an hour and 45 mins from you.

[Kay1063]

Hi Kathryn,
I live about 15 miles east of Lancaster. I was diagnosed in 2006 with IC.

[Lan13]

I live in allentown area, PA. I would like to talk to someone that close to me.
Is anyone out there live close to my area?

[Bronx]

I know I am late but I sure could use the support. Once we move I pray that I could help us start a group here in the city.

[alidee81]

I'm really tardy to the party, but I am also right outside of philly, jenkintown.

[chainsaw]

I am actually no longer in Gettysburg, we now live in Spring Grove, PA which is in York County, but it is about an hour out of Lancaster.
Kim H

[MamaZ]

Bumping.

I'm in Phoenixville.
Flaring. :( All of my issues are currently in my urethra. Itchy and just generally uncomfortable. I was seeing Dr. Birnbaum in Elkins Park and I adore him (helped me get pregnant with both my kids) but he's super far and doesn't take my insurance.
I'd like to see someone new but don't know where to turn. I've seen Dr. Hanno. In fact, he was probably one of the first docs I saw for this in the mid 90s. I can't stand him. I'd be happy to share my horror story with him if anyone's interested. I've also been to the Pelvic Floor and Sexual Health Institute at Graduate in the city. Waste of time. They told me there's not a whole lot to do that can help the urethra. :rolleyes:

Dr. Birnbaum has been advising me a bit via phone and his last suggestion was to try Prelief. Didn't help. I'm not surprised since food doesn't seem to be a particular problem -- it does for my gut but that's a different story. I'm the worst a 24-48 hrs after sex but recently I just feel icky in the urethra most days. Sucks. I wish I had a normal crotch. :cussing:

[Patrice]

I feel you about Dr. Hanno. Penn Urology was the worst nightmare of my life. That was in 2000. I go to Dr. Whitmore now but have been pretty stable. I had to make an appointment with my OB-GYN in West Chester the other day and I went on their website and discovered they now have a Pelvic Pain center, including PFD and IC. I had no idea. I don't know how good it is but it's not too far for you.

http://www.chestercountyobgyn.com/chronic_pelvic_pain_program.asp

http://www.chestercountyobgyn.com/downloads/Chronic_Pelvic_Pain_Book.pdf

[MamaZ]

Thanks so much, Patrice. You're in Downingtown, no? Have you ever been to Chester County Ob/gyn? I had no clue they dealt with chronic pelvic pain!

Great to hear that you're in something of a remission. What are you on?
Ugh, Dr. Hanno. That man should rot in...well, you know where.

Just got off the phone with Dr. Birnbaum. I love that man. He's just so thorough and easy to talk to. Never feel rushed and remember...he doesn't take my insurance so he's giving me his free time and thoughts and suggestions.

He suggested I try Uribel. I think it might be $$$. EEK.

[Meggy1]

Dr. Atkins, who runs the pelvic health program, at Chester County ob/gyn is currently treating my daughter for IC. He is very knowledgeable about it and very patient with my daughter. I have been using this practice myself for the past 11 years for ob/gyn, in fact he even delivered my youngest! I would highly recommend him. Also they have several office locations. We normally see him in the Kennett Square office since it is closer to home but also see him at their West Chester Office.

[MamaZ]

Dr. Atkins, who runs the pelvic health program, at Chester County ob/gyn is currently treating my daughter for IC. He is very knowledgeable about it and very patient with my daughter. I have been using this practice myself for the past 11 years for ob/gyn, in fact he even delivered my youngest! I would highly recommend him. Also they have several office locations. We normally see him in the Kennett Square office since it is closer to home but also see him at their West Chester Office.

This is great info. Thank you!
One of my biggest fears is that my daughter will inherit these health issues. She's a few years away from puberty but I worry. My endometriosis reared it's ugly head when I was 14.
Kudos to you for seeking help for your daughter. I vividly recall my mother taking me to one doctor's office after another...

So what's Atkins like? Is he down to earth? How long has he been treating women with chronic pelvic floor problems? Did he dx your daughter? You mention in our siggy that she had a hydrodistension and cystoscopy late last year. Was that by Atkins? Did he ever mention any other way to diagnose?

Sorry for the 20 questions! :lmao:

[Meggy1]

This is great info. Thank you!
One of my biggest fears is that my daughter will inherit these health issues. She's a few years away from puberty but I worry. My endometriosis reared it's ugly head when I was 14.
Kudos to you for seeking help for your daughter. I vividly recall my mother taking me to one doctor's office after another...

So what's Atkins like? Is he down to earth? How long has he been treating women with chronic pelvic floor problems? Did he dx your daughter? You mention in our siggy that she had a hydrodistension and cystoscopy late last year. Was that by Atkins? Did he ever mention any other way to diagnose?

Sorry for the 20 questions! :lmao:

Hi. Dr. Atkins is very down to earth. He actually diagnosed by records from previous doctors, my daughter's description of what she was feeling and physical exam. He has taken the time to call around to other IC doctors including pediatricians to inquire about treatment options for my daughter. He did not do the Hydrodistension and cystoscopy on my daughter but only because of her age. He called the ped urologist from Children's Hospital of Philadelphia to coordinate this. He did try to suggest the bladder instill a few months ago but my daughter broke down in tears objecting to it so he went with her wishes and we waited. He did an instill last week and spent about 45 minutes with her explaining what he was going to do and going slow enough that she finally was comfortable enough and let him do it. He has also been patient with me and my frantic calls the first few months before it was under control. The one drawback I will mention is that sometimes when we go for appointments we do wait. Sometimes it's because he still delivers babies and gets stuck at the hospital, other times it's because he does take the time with his patients. I usually get try to get the first or second appointment in the afternoon so avoid this.

[MamaZ]

Oh, your poor daughter. I can't imagine how emotionally hard this is for a 12 year old. My symptoms started when I was in my late teens but 12...my goodness. How is she holding up?

I asked if he was the one who used the hydrodistention/cystoscopy only because as far as I know, it's outdated. And the reason it's outdated is because sometimes no findings show up despite how invasive it is and the patient still has IC. How do I know this? For one, that's exactly what happened to me. And for two, Dr. Birnbaum corroborated it.
Generally, you can simply use the PUF (http://www.cityhospital.org/Urology/forms/PUF%20QUESTIONNAIRE%20-%20IC.pdf) and get your dx that way.

And as far as the instill -- yes, I can imagine she'd be scared to death. I'd be too.

I'm so happy to hear there's a doctor close by who has taken an interest in this area. There aren't many. And I called his office to see if they take my insurance. They do. I just don't know...I have serious trust issues with IC doctors. Dr. Hanno scarred me.

[Meggy1]

Now that you mention it they did send me a long questionnaire that we had to complete and send in to him before he saw my daughter. They did the Hydro/Scope after she had the symptoms for over a year and the meds had stopped working, basically to rule anything else out. The pediatric urologist who performed the scope commented that there was no area in her bladder that did not have some sort of glomerulations. I think he was skeptical of the IC diagnosis at first but agreed with Dr. Atkins afterwords. I have to add that for us it also gave us a confirmation to say to the doubters "I told you she wasn't faking". The only other doctors close to us that I found who treat children with IC is Chester County Urology. They have offices by Brandywine Hospital and in West Chester. They are part of the Pelvic Pain Clinic, but from what I understand they refer the more complicated cases to Dr. Atkins. As with any doctor there are those that will praise him and those who don't like him. Couldn't hurt to go in for a consultation with him to see how you like him before switching. I know for us and having to travel to CHOP in Exton or DuPont in Delaware for the kids other specialists a 15 minute drive to Kennett is a godsend.

[MamaZ]

So I made an appt with Dr. Atkins for 3/1. I'm pretty scared, to tell you the truth. I've been researching IC drugs this morning and each one seems to carry an awful lot of potential side effects. My last doctor thought I should try Uribel (a blue-dye capsule...antiseptic/analgesic/antifungal etc) that worked really wel at getting rid of the urethral burning for a day or two but then it caused me retention, horrible stomach pain, and diarrhea. So now here I am with an even worse flare than I've had in weeks. GAHHHH.
I'm debating whether I should try and get a culture done just to make sure it isn't an infection this time.

Anyway, I'm not sure what will come out of the appt with Dr. Atkins but I'm going to try and keep an open mind. At least a little bit. ;) And I think it's important to have a doctor who knows me in case I have an emergency flare or some such.
Someone in another thread mentioned a doc out in Langhorne (also has an office in Jersey) -- a urologist named Steven Orland. Anyone ever hear of him?

[Meggy1]

Good luck with your appointment. Megan went last week for another instill, seems to be helping so we're keeping our fingers crossed.

[MamaZ]

Good luck with your appointment. Megan went last week for another instill, seems to be helping so we're keeping our fingers crossed.

Saw Dr. Atkins today. Thank you SO much for the recommendation. He was wonderful -- great bedside manner and completely without ego. He listened to me endlessly babble on about my long history with this disease and was candid about what he does and does not know. He was funny, warm, and I felt immediately at ease.

We did an installation (even though I was so fearful of that darn catheter) after he examined me and found that not only was my pain localized in my urethra, but my bladder was also painful when touched.
I felt pretty good for about 30 minutes after the installation but then started feeling pressure, which I still have now. So I don't know. I'm supposed to go back next week for another instill but I'm hesitant. Will it work next time if this one wasn't so helpful?

He prescribed Elmiron, Elavil, and Valium suppositories. I went to get them filled and holy mackeral, the Elmiron was $500. My husband's company is SUPPOSED to reimburse for prescriptions (it's a new plan -- a PPO but wow, nice prescription plan, eh?) but I'm not sure if it's 100% or what so I'm waiting to hear back from their rep. Plus, I'm really scared about taking the Elmiron since diarrhea is a side effect and I have IBS-D.

Oh, and he also told me that his 12 year old daughter has IC.
He's trying to coordinate a local support group so maybe you and I will meet one day!

[Meggy1]

I'm glad you liked him and things worked out. Yes the Elmiron is expensive, I know with our insurance we pay $160 for a 3 month supply since it's not a "preferred" drug. Dr. Atkins has really been great with Megan so I'm glad you liked him. It does make a difference when the doctor's ego doesn't get in the way of treatment.

Megan's first instill didn't do much but after the second I do think it's helping. She's scheduled to go back for the next three weeks at least. But like everything else what works for one may not for another. Hope the new meds help, I know they take awhile to start making a difference.

[MamaZ]

The worst part of the Elavil is the dry mouth. I'm hoping it doesn't cause weight gain -- and while I've been trying to watch what I eat, I'm a few days away from my period so cravings have been off the chart.

I've been researching CystoProtek (http://www.cysto-protek.com/) and introduced the idea to Dr. Atkins today as something to try in lieu of the Elmiron. He hasn't heard of it but said he'd look into it. Seemed excited at the prospect of an alternative therapy that potentially has very little side effects.

I'm going to start hydroxyzone and continue with the valium suppositories. Hopefully everything together won't be too sedating.

Had my second instillation today and it went even better than last time. I didn't feel an urge to pee until a few minutes ago -- and that's almost 5 hours! Huge difference from how I've been the last few days. It's ironic...the instillations were the last thing I envisioned to be so helpful.
My IBS has been bad the last few days as well. Hopefully things will even out once my period comes and goes.

How's Megan holding up?
Hope everyone else is doing well!

[Meggy1]

Hi MamaZ,
Glad to hear the instills are working. It will be interesting to see what he finds out about the CystoProtek, I'd love to get Megan off the Elmiron because of all the possible side effects and amount of medicines she is currently taking. Megan saw Dr. Atkins yesterday for her 4th instill. She's still complaining about back, side and pelvic pain but her prequency/urgency has improved! Dr. Atkins also contacted a Physical Therapist (Karen with Pro Physical Therapy) that works with IC adult patients and she agreed to see Megan. She is in Hockessin, DE and is very nice. Megan saw her last Friday and she's going to work with her to strengthen pelvic, leg, back and other muscles and teach her ways to relax and release the tension. First session was a success so we're hoping that with the combination of Dr. Atkins and Karen Megan will be back to "normal" and back in school soon.

[Cris1986]

I live in the Pittsburgh area. Is anyone else here in/near Pittsburgh?

[Engtch29]

It seems like UPMC has a good urology dept...

Anyone on here familiar with Dr. Hanno in Phili?

[ICNDonna]

Dr. Hanno is VERY well known in the IC Community.

:)
Donna

[Noibe]

Whats up. I live in Northeast Philly.

[aliciacaldwell]

i live in state college pa and i traveled to philly to meet doctor hanno last month he is so excellent nicest careing guy ever and really has alot of interest in treating you because he wants not cause he has too i go back to see him in 2 weeks and even though it is a 4 hour drive and trust me its a hard painful drive it is soooo worth it he is great would deffinently recommend

[Otis]

Hi, my first post. I have a 17 year old daughter who suffered with symptoms for a year. We live in Altoona, an the local uro did the scope/hydro and diagnoised her with IC. He says he is unable to treat her and asked where I wanted a referral. So here we sit, with no medication, and know idea of what direction to go. I will travel as far as needed for my girl, only my health care insurance must be accepted (BC/BS) . I have heard great things about Dr. Whitmore in Philly, any thoughts? Are there any good urologists in the Central PA area? Right now her symptoms can be controled alot by diet and stress management, so I would like to get her some meds ASAP before this thing progresses. She has missed 18 days of school so far, and its so difficult to see her quality of life being degraded. Any help is appreciated.
Thanks

[Noibe]

Hi, my first post. I have a 17 year old daughter who suffered with symptoms for a year. We live in Altoona, an the local uro did the scope/hydro and diagnoised her with IC. He says he is unable to treat her and asked where I wanted a referral. So here we sit, with no medication, and know idea of what direction to go. I will travel as far as needed for my girl, only my health care insurance must be accepted (BC/BS) . I have heard great things about Dr. Whitmore in Philly, any thoughts? Are there any good urologists in the Central PA area? Right now her symptoms can be controled alot by diet and stress management, so I would like to get her some meds ASAP before this thing progresses. She has missed 18 days of school so far, and its so difficult to see her quality of life being degraded. Any help is appreciated.
Thanks

Hey Otis, how are you. You shouldn't be discouraged by the doctor not being able to treat her because IC (from what I've gathered by researching it) is a grey area to urologists because there doesnt seem to be a cure and you can research it on your own accord to find that info as well. It's one of those things that just...happens ;/ Main thing that caught my attention in your post is you said her symptoms can be treated with diet and stress management. The diet is self explanatory for obvious reasons and not just this condition, but I'd like to ask about her stress. Has she been under alot of stress, anxiety of suffered a panic attack within the year of her being diagnosed? Ask her to find if things just piled up and see if she just snapped mentaly and see what she says. When she has to pee can she hold it? or does she have to go right away?

I will not knock that IC is not a serious condition but I also know for a fact that wanting to pee is mental, so anything that affects a mental status of a person, generaly in a negative way, can cause IC to behave badly.

Marc Lavine then Heather Gottlieb are the doctors who diagnosed me with IC. They are both Urological Assosiates in Philadelphia here in Northeast Philadelphia and as far as meds Elmiron 100mg seems to be the starting medicine but you do need a prescription from the doctors for it. Own stuff that can you can use to help with kidney cleaning and bladder function is rose canina and make her drink that.

[Meggy1]

Sorry to hear about your daughter. Having a 13 year old daughter suffering with IC for 2 1/2 years I know how hard it is to see them suffer and not being able to really help them. My suggestion would be to search for Pelvic Pain Clinics in your area. While we are only about 1 hour from both Philly and Baltimore and several well known IC specialists (who wouldn't treat my daughter because of her age) I was able to find a doctor knowledgeable about IC, willing to treat her and has an office 15 minutes from us. Hope this helps.

[Adrienne Walker]

Hello my name is Adrienne I am 27. I live in York pretty close to Lancaster. I am in the worst flair of my life and in need of major support. Anyone in the area that wants to meetup I am ready and willing. I NEED to talk to someone in person who understands what I am going through.

[Adrienne Walker]

Hello my name is Adrienne, I am 27 and live in York pretty close to you. I am in the worst flair of my life and would love to have someone to talk to about this in person. I am on many support groups sites but I need real life interaction right now. We should all plan a meetup soon!