North Carolina IC Community

[Thingone]

Just wanted to say hello to all the ICers in North Carolina. Hope life is good. Would love to see some post in this section from you!

[nottoc4]

I am in Jacksonville NC.Nice to see another IC'er here from NC.

[sailawaygrl]

I think there are quite a few of us from NC. I am in Concord, NC. Like many I travel to Winston Salem to see Dr Evans. I am unable to work anymore due to my IC, fibro, chronic fatigue, vuvlodynia.... I am just taking it day by day.

Good to meet you,
Sandra

[blazer 55]

Hello from High Rock Lake (between Winston Salem and Charlotte) in North Carolina. I, too am a Dr. Robert Evans IC patient. There might be enough of us to start a support group once an month. Nice to hear IC friends, Cyndi

[sailawaygrl]

I would be interested in a monthly support group. I know of one other person that would probably be interested as well.
Sandra

[blazer 55]

I don't think we have to have an organized support group to start. You know what they say about misery loves company...well, I say misery loves a good friend. If you want to meet in Concord one day, we can have lunch at one of the resturant's at the mall exit. Maybe someone else will read this post and want to meet us as well. I've been known to plan a few event or two. Let's give it a week or so and see if we hear from anyone else that would like to join us. How does that sound? Cyndi

[sailawaygrl]

Concord is excellent for me but I wonder about some of the other's that are not so close. I can be at the Mills in 10 minutes or less, so of course I like that one!! I can't walk the whole place though, LOL. The food court there is huge and not too loud during the week, on the weekends, you can't hear yourself think!

[Thingone]

I'm in Raleigh. I'll have to check the date of my next appointment with Dr. Evans. It's in August. I could meet on that day. If I knew in advance, I could drive west on the weekend.

[blazer 55]

I live at High Rock Lake halfway between Winston Salem and Charlotte. About an hour each way. My house is always open to guest. We could meet right here or I can set something up closer to where Highway 52 and 85 intersect in Lexington. Or since most of us know where Dr. Evans office is in Winston Salem, maybe we should meet at a resturant near his office. I am comforable with that plan, too. Let's see what kind of response we get from anyone else who would like to meet and go from there.

I'm getting excited. Just knowing I might speak face to face with another person who has IC is invigorating. I believe in all things happen for a reason.

[Sarojini]

I'm in the Winston-Salem area - I work at Wake Forest University Baptist Medical Center, and I also see Dr. Evans for my IC, so I'm both a patient and employee here. ;) Hello from me to all of you! :hi:

[SLP53ICIB]

I go to Dr. Evans but live in Collinsville, Va. I would like to join a support group somewhere:pray: I can drive to Greensboro or Wake Forest-or Rke. in Va.

Thanks,
Susan

[PINKTEAROSE]

Does Any1 Suffer From Constant Lower Left Side Pressure, Radiates To My Ribs??? I Have Since 01 Very Exhausting And Frustrating My Only Symptom. :headbang::bonk:

[nottoc4]

THis is not a good time in my life to join a support group that involves traveling. My husband is a cancer patient and has so many Dr. appointments and treatments and I just found out I have a big problem with a Mitral Valve Prolapse. I see surgery in my immediate future.Shucks

[blazer 55]

I hope everyone keeps those of our fellow North Carolinians in their prayers. We all suffer from many forms of IC and we can be a source of support for each other with or without a meeting. If you need someone to listen to your frustrations, tag me right here. I check this thread everyday.

[Auranc8]

I live in Cary, NC and am interested in meeting up with a fellow ICer or two. Keep me in the loop!

[blazer 55]

It seems like we live in all areas of NC. If meeting is impossible due to the miles between us, I am certainly willing to communicate by Email with anyone who would like to connect. I met my new email friend from Concord here and it is very comforting to have someone who understands the ups and downs of IC life. Just leave me a private post on this site and I'll get back to you. I usually check the website everyday or so.

[DebbieD]

I Live in Winston Salem, NC. I see a Uro at Wake. I am on Dialysis 3 days a week. Waiting on a Kidney Transplant. I have been real sick alot here Lately.

DebbieD

[blazer 55]

Debbie D, I am so sorry you are suffering. What you are going thru cannot be easy for you or your family. Do you see Dr. Robert Evans? He is my uro in Winston Salem. I'll keep you in my thoughts and prayers.

[DebbieD]

No! I see Dr. Smith in the Same office.Smith removed my Last Kidney and he also works with the Transplant team.

Thank you
DebbieD

[blazer 55]

It sounds like you going to the right place to get help. I hope things change for the better very soon. Hang in there. Prayers to you.

[jameson77]

i live in Albemarle, NC....and would be interested in an IC Support group for the NC area! I see Dr. Evans at Wake Forest.

[blazer 55]

Jameson77, To my knowledge there is a support group located in Burlington, NC. However that is not a very reasonable drive for either of us. I live at High Rock Lake. I check the NC posting daily and there does seem to be several of us between Winston Salem and Charlotte that would enjoy a support group. If you would like to chat about our experiences with IC, send me a private message with your email address. I'm always looking for new friends with IC.

[GOINGCRAZYW/IC]

I live in Fayetteville NC, Nice to meet everyone. I wouldn't mind a support group with people who know what I am going through. I have had IC for about 7 years, And sometimes it gets so bad I just want to die and have yet found a good Dr. that I am happy with. Last week I had a flare up the burning drives me crazy so I use a heating pad which helps. I get infection after infection, get dehydrated quiet often. So yes I would love to have someone I can talk to.

Thank God for this site

Callie Marie:hi:

[blazer 55]

Callie, there are many ladies in NC who would like to meet. And actually there are groups in Burlington and Raleigh, I believe. But most of us live too far away from meeting sites, so we support each other here in the forum or have become email friends.

If you do not have anyone you can share your experiences with and would like an IC friend, send me a personal message with your email address. I check this site and I'll get back to you asap. I have had IC and Vulodynia for 3 years now and I didn't know anyone with IC until I found this site. The ICN forum has been a life line to me. I am so thankful others understand what living with IC is all about and thank goodness they share ideas and helpful tips that make my life a little easier to tolerate everyday.

Glad to meet you.

[purpletomorrow]

I'm in Asheville, and also a patient of the lovely Dr. Evans! He's helped me so much.

[blazer 55]

Purpletomorrow, I noticed you highly recommended Emu Oil for Vulvodynia. Why? How? and How often?

Nice to meet you, too. Blazer

[purpletomorrow]

Why, how, and how often?

Why, because it lowers inflammation and pain.

How-- put a large dollop on your finger and apply to the vulva area.

How often? Twice daily, esp. after a shower or bathing.

Apparently Emu Oil has anti inflammatory qualities that soothe and protect. It's been a godsend, especially since menopause, when my skin down there feels thinner and more fragile.

Highly recommended!

it does droozle a bit on your underpants, a small price to pay for some relief from pain, dryness, and irritation.

Hope this helps!

[blazer 55]

Purpletomorrow, Thanks a lot for the advice. I will difinately try it. I am 56 and I understand about the fragile skin in that area. Since my gyn put me on Vagifem twice weekly, however, that issue have improved greatly.

[blazer 55]

Vanilla, Glad to hear you will be joining us here in NC. I do not know if there is a support group near Southern Pines. But you can check it out here on the website. There is one in Burlington, but that would be quite a drive for you.

There are several of us ladies that go to Dr. Robert Evans in Winston Salem. He does not have a support group at this time. However, several of us share our experiences and support by email. If you would like to be my IC friend, just send me a private message with your email address.

[GOINGCRAZYW/IC]

Who is this Dr. Evans and what is his phone number? I live in Fayetteville NC But if he is worth the drive I will gladly and happily go see him. So Please tell me his number and the address.

Thank you
Callie Marie:pray:

[purpletomorrow]

Dr. Robert Evans
Wake Forest University Bap URO
140 Charlois Boulevard
Winston Salem, NC, 27103
Phone Number: (336) 716-4131

[jameson77]

Who is this Dr. Evans and what is his phone number? I live in Fayetteville NC But if he is worth the drive I will gladly and happily go see him. So Please tell me his number and the address.

Thank you
Callie Marie:pray:


..................he is definitely worth the drive! he is the one who diagnosed me and i see him every 3 months! We are lucky to have him in our state!!!!!

[blazer 55]

GoingCrazy, It's definately worth the drive if you are struggling with your IC and can't find a Dr. in Fayetteville. On my first visit he explained what meds I should be taking and prescribe the right dosage of the ones I was already taking. He is a likable kind of guy too. He doesn't waste your time and gets straight to the point. And the best thing about him is that he actually has years of experience treating IC and devotes his time to research. Good Luck!

[Flowerchild]

Hi fellow NC IC folks! I used to see Dr. Evans when he was in Kernersville. Is there another IC Dr. at that facility that would be good. Winston S. is a bit far. Are there any support groups near Mebane/Hillsborough area?

Thanks Ya'll !

[76sunflowers]

Hello all. I am in Wilmington and am in need of a new urologist. I was told about Dr.Evans when I was first diagnosed. It is just so far. But now I may have to reconsider. Anyone live close to Wilmington interested in forming a support group?

[Auranc8]

I would have to agree that Dr. Evans is worth the drive. I am sorry to hear about all of the pain you go through daily. I pray for healing for us all as well.

[76sunflowers]

Thank you to everyone for your support.:grouphug:

[blazer 55]

I believe Dr. Evans is definately worth the drive. And actually, once he gets you started on the proper meds and a program you can follow at home, you can visit a local urologist and update with Dr. Evans about three times a year.

I also noticed you would like to start a support group there in Wilmington. This past year I tried to form a group in my area around the Winston Salem/Concord area. Unfortunately, it was impossible to schedule a place and time for ladies interested. Everyone was just too busy.

If you or anyone reading this post comes to visit Dr. Evans and would like to meet in WS for coffee and chat about IC, send me a message here on this site. I enjoy meeting new friends that relate to dealing with an IC lifestyle.

[Linda May]

Any icers in Huntsville and surrounding areas of Alabama?

[Flowerchild]

Hello NC'ers! I was seeing Dr. Evans off and on before he moved to Winston Salem. I know everyone really likes him. Unfortunately, I didn't care for him all that much. I am one of those patients that poses quite a challenge due to my massive allergies & sensetivities to meds. He tried me on a bunch of stuff but nothing worked or I could not tolerate it. The only thing that gave me temporary relief were the instillations he did in the office. He seemed to get short & slightly irritated with me with each visit so i stopped going. Has anyone tried one of the other doctors in the Kernersville office? Any suggestion? I really need a new doctor.

Thanks!
Flowerchild

[Sarojini]

Flowerchild... I get what you're saying. I used to really like Dr. Evans... but ever since he's moved to Wake I've been disappointed in the care I get. Unfortunately, I don't know any other doctors in the area, so I can't be of much help. :(

[Flowerchild]

I have an appt in 2 weeks with Dr, MacDiarmid in Greensboro where Evans used to be. I noticed several other NC ic gals go to him. Oh I hope he can help me and is patient, understanding and knows enough about ic too! I'm just a tiny, wee bit better today..not enough trust it though.

[sailawaygrl]

Flowerchild,
If the instills helped you, you might want to ask if you can do them at home. I don't know anything about this new Dr you are seeing but it would be worth it to ask.

The new facility at Wake Forrest is different but I still find that I love seeing Dr Evans, sorry you didn't "click" with him. People are all different, hopefullly this new Dr will be a help to you. I hope you are able to find some relief. Let us know how it goes.

[Flowerchild]

I'll be happy to learn instills at home at this point. I'm miserable..worst one yet..going into my 3rd week. I'm looking for the light at the end of this tunnel...I wish it would start shinning through!!!!!

[hworkman]

Hi. I'm newly diagnosed (3 weeks). I live in Concord/Midland area. It's good to see some post from you all:hi:

[rsoakley]

Can we start a support group?? I'll drive to wherever in NC. I would just like to meet other people.

[Auranc8]

I'm up for meeting too. It would be best to find out where most us live and find a middle ground maybe. I'm in Cary, NC.

[blazer 55]

I'm willing to drive somewhere for a support group. Do any of you go to Winston Salem to see Dr. Evans. I'm familiar with the area and could set something up if we could decide on a date and time. I'd even offer my home for a group meeting if any of you would like to come to High Rock Lake in Lexington.

[blazer 55]

Vanilla, If we could schedule a time on the day that you come to see Dr. Evans in Winston Salem, would you like to meet each other somewhere close to his office? I'll be glad to drive in to Winston, it is only about an hour.

[blazer 55]

Vanilla, I sent you a private message so we can set up our meeting. Looking forward to hearing from you.

[giabella]

Hi Folks:

I live in Hillsboruogh, NC and was diagnosed in March. I do not see Dr. Evans until August 16th.

Do any of you do PT for PFD? IF so, where do you go? I had my first appt. at Duke and she cannot see me again until next month. I have no idea how to do the stretches she showed me quickly in her office and do not want to cause more trauma.

Does Dr. Evans' office have PT. Just curious. My issue is mainly frequency and urgency and home he can help with this issue somewhat. I hope to meet up with some of you at some point.

Gina

[Auranc8]

Giabella,
I live in Cary if you want to get together sometime. I don't do PT, so I couldn't help you there, but if you wanna meet or chat on the phone, let me know.

Melody

[blazer 55]

North Carolina Icers, I hope your days are filled with joy and flare free days and an occassional nibble from the "never eat" food list. :smile tee

[Rope_Wrench]

Hi guys,
I'm in Canton (about 20 minutes from Asheville). new to all of this and is would be great to talk to some others that have been there and done that already. Unfourtunetly it seems most are in the middle of the state. Anyone care to penpal a newbe that is trying to get a handle on this new way of life?

[Auranc8]

Hey! I live in Cary, NC but I'm more than happy to answer questions or let you know my experience with IC. My email address is auranc8@nc.rr.com. You will find a lot of information and get many of your questions answered on this site. It is a big support to many of us. We are here with you. ~Melody

[melanie626]

Hi all.
I just relocated from CA to NC last week. I saw one uro who basically laughed me out of his office I am so beyond his level of care. I live in Durham...I have an appt with Dr. Evans on the 19th, is anyone else closer worth persuing? Is there anyone else?

Anyone live in the area and want to meet up or chat?

Thanks----I am so like a fish out of water!

[Auranc8]

I live in Cary. I go to Dr. Evans. He is your best bet. He is wonderful. I wouldn't go to anyone else. Let me know if you have further questions.

[nicholem28]

Hi Rope_Wrench! I noticed that you live in Canton and I live in Clyde. I was very excited to see someone so close to me that would completely understand everything that I have been going through. I would love to pen-pal you and talk about everything we seem to tackle each and every day!

[nicholem28]

Hi guys,
I'm in Canton (about 20 minutes from Asheville). new to all of this and is would be great to talk to some others that have been there and done that already. Unfourtunetly it seems most are in the middle of the state. Anyone care to penpal a newbe that is trying to get a handle on this new way of life?

Hi Rope_Wrench! I live in Clyde and was very excited to see someone on the post that was so close to me. I would love to pen-pal with you and talk about all the things that we tackle everyday.

[melanie626]

Hi,
I would love to write. My email is melaniebragin626@gmail.com

Please write me.

Melanie

[Thingone]

I live in Raleigh, and wouldn't recommend any other doctor than Dr. Evans. I have been laughed out, had pity party's, etc. from Doctors in this area. I'll drive or fly if he ever moves.

[melanie626]

I learned that quickly here once I showed my history to people. I met with one local Uro who laughed me out of the office, a UroGyn who has horrible and told me to suffer with the pain.....I already has seen Evans and went today to have my S/P Tube changed....I am having a Indiana Pouch and am so HAPPY!!!!!!

KInd man! Very excited.

How is your IC? I live in Durham. The drive this am was a drag as it was early and I was SO tired.

Melanie

[luvsterriers]

Anyone in Charlotte?

[Emme 1210]

Hello out there---Just newly self-diagnosed this month and trying to reach out to others who might understand what I'm going through. I'm feeling pretty depressed and anxious about so many things right now. It's quite overwhelming. My main problem is frequency, burning and pressure. I am just beginning the IC diet and some vesicare, but not sure if anything is helping. Most of all I have so much Anxiety. I want to try to live a normal life and be a good mother to my 2 year old son and wife to my wonderful husband. Anyone else out there???
:hi:

[Emme 1210]

I live in Cary, NC and am interested in meeting up with a fellow ICer or two. Keep me in the loop!

Would love to know about other ICers in Triangle! Are there any support groups?

[blazer 55]

Emme, I know right now you are feeling helpless and anxious. In the beginning there is so much information to take in it is overwhelming. Please feel free to send me a post if you need a friend. I've been right where you are now since 2008 and my journey with IC, Volvodynia and IBS has been a daily struggle. But, with the right diet, attitude and medication it certainly makes a difference how I handle the day. Most days now I can go about my business and make small adjustments without IC interfering with whatever I want to do. I am trully blessed to have a family and friends that support me.

FYI: Vesicare can dry your skin out. So stay hydrated.

Dr. Robert Evans, a specialist in bladder diseases is located in Winston Salem with the Baptist Hospital Urology department. He has helped so many women and men, including myself get their IC and related problems under control. I strongly suggest if you need a urologist, call him.

:angel:

[Emme 1210]

Thanks for the reply! It really feels good to connect with someone! I was so happy to see your message. I feel pretty alone, because I haven't told too many people what is going on with me, and I'm trying to still do social stuff, but it'll be pretty obvious because I won't be drinking anymore. We still hang out with a lot of college friends and everyone still drinks a lot. I think it's a weird blessing because I really wanted to cut back my drinking alcohol, but now I'm totally restricted which is sort of a shock!
Anyway, right now, all I want is to get control of my symptoms and know what to expect day to day. I think the vesicare is helping somewhat because in the middle of the day when I'm not drinking much water, about 24 oz at work, I can hold it for 2 hours, but mornings and nights are hard which is sad because that is the time when I'm with my family. I also have weird twinges of pain every now and then, but haven't had terrible pain yet and hope and pray I never do. I have already made an appointment with Dr. Evans, but it's a month away. I have to get on some kind of anti-anxiety medication before then or I'm going to go crazy and drive my husband crazy, because I'm a basket case. Do you mind me asking if you are on anything for anxiety or depression? I am trying to find a psychiatrist who deals with coping with chronic conditions, but they aren't that easy to find.
Sorry to ramble---I have a million questions for someone who is dealing with this too, but I won't overwhelm you. I hope you feel well most of the time and lead a happy life. I want to lead a happy life and maybe it won't be full of all the things I had wanted to do, but as long as I can take care of my son to the best of my ability and be supportive to my husband that's all I care about at this point.
I hope you are having a nice weekend!
--Emme

[blazer 55]

Emme, please don't panic! You have already taken a very positive step in learning how to control your IC by making an appointment with Dr. Evans. Start writing down questions you want to ask him. Distract yourself by doing some IC meal planning. And above all, don't shut your husband out, but don't let IC consume every conversation you have with him either. He loves you and he probably feels helpless.

Right now your emotions are getting the best of you and I understand why. The unkown always is and that is why you need to start educating yourself about IC. Knowledge is power.

I have a prescription for Valium and I use it when I feel anxious. If you are struggling with anxiety or feel hopeless, you need to contact your doctor.

Stay positive. I am here for you.:angel:

[76sunflowers]

Anyone from the Wilmington area yet?

I am tired of suffering alone. I have great doctors, family, and friends but it would really help to have someone who really gets what I'm going through.

Ps-I sometimes am in the Raleigh area but not too often. I'd be happy to post when I am,
to meet up with anyone who'd like to.

[blazer 55]

Sunflowers76, I think there is a support group that meets in Raleigh. Check out the "find a support group" on this site. And always remember that you are not alone in the IC journey and your fellow ICers care about you.

[Emme 1210]

I don't know of a Raleigh support group, but would like to know if there is one!

[Emme 1210]

Emme, please don't panic! You have already taken a very positive step in learning how to control your IC by making an appointment with Dr. Evans. Start writing down questions you want to ask him. Distract yourself by doing some IC meal planning. And above all, don't shut your husband out, but don't let IC consume every conversation you have with him either. He loves you and he probably feels helpless.

Right now your emotions are getting the best of you and I understand why. The unkown always is and that is why you need to start educating yourself about IC. Knowledge is power.

I have a prescription for Valium and I use it when I feel anxious. If you are struggling with anxiety or feel hopeless, you need to contact your doctor.

Stay positive. I am here for you.:angel:



Blazer 55-
Thank you for your kind words. Me and my husband had a nice dinner together last night (and even though I couldn't have any wine!), it was nice and I was happy and felt pretty good.
RE: Dr. Evans...did you start being able to manage better after seeing him? I'm sure he'll try to put me on a whole host of medications. Anything to feel like I have some control and can focus on my life more. Did you like him? I have read some reviews that he's arrogant, but what Doctor isn't, I guess.
What medications have worked best for you?
--Emme

[blazer 55]

Emme, I like Dr. Evans. But he is VERY busy and you can expect to wait no less than 2 hours after your scheduled time to see him. For that reason a lot of people get aggrivated with the office scheduling policy. Once you get in to see him, he will be pretty blunt about how he wants to treat you. BUT, it is your body and you have a voice in how you want to be treated. He will make suggestions that sound reasonable and some that seem impossible to adapt to your lifestyle. All in all he is the best in this area and I believe you will get the best treatment available. The key to a visit with Dr. Evans is to be prepared with questions that address your situation, not what other people have told you about what they have experienced with IC or what drugs and supplements they are taking. Every person is different and their IC journey is individual. You'll do fine and I think you will like him. Matter of fact, it wouldn't hurt if your husband could go and then on the way home to Raleigh you can compare notes. Just a thought.

I take Elmiron, 2mg of Vagifem weekly, Harvest Aloe Vera tablets, Restora, Harvest Aloe Vera Personal Gel and Valium as needed. It took one year to refine this list to help my issues. So don't get discouraged.

FYI: Until you see Dr. Evans, try chewing 2 Tums if your urine smells acidic or you have that urgent feeling that won't go away. Sometimes it really works. The calcium helps to neutralize the acidic levels in your bladder. And just in case you are not emptying your bladder properly, after you finish peeing, count to ten and see if you go again. If you think you have an infection however, call the dr.'s office. Infections can worsen your problems.

I know all these little tricks sound crazy, but this is a fickled diesease. Who knows, it might work for you. Just take care of yourself and keep me posted.

[Emme 1210]

Blazer 55--
Thank you so much for all of your advice and tips. It really means a lot to me and gives me comfort to hear from someone else. I struggled through the weekend and had quite a bit of downs but a few nice ups with my family. I'm working on getting a psych appointment to get on something to stabilize my moods and maybe valium for when I'm really spiraling out of control. One of the toughest things about this condition for me is that I can feel normal one minute, but then as soon as I start feeling my bladder or any symptoms, I start to panic. I just want to know what to expect from day to day.
Thanks for the info about Dr. Evans. I will definitely come armed with questions and I will just tell him my symptoms and try to not let what I've researched on the internet and read about other people influence me. Although, I hope he really does listen to me and take time with me...
Is he a doctor that is open to supplements as treatment or is he going to shut down when I even mention that I'm taking Aloe (that's what the urologist I saw last week did)? Speaking of Aloe---I see that you take it...do you think it has helped you at all? Also, I guess every doctor puts IC folks on Elmiron just to see if it will help...I'm scared to get on it, because of side effects---especially since I'm in my sister-in-law's wedding at the end of May and don't want to have thinning hair for that! I pray, pray, pray that something works for me and all of us. I pray for a cure.
I really appreciate your messages. I hope you have hope and happiness in your life each day. --Emme.

[blazer 55]

Emme, I'm glad you are educating yourself and not letting it devastate you. It trully does take awhile to figure out what works and even then there are still surprises along the way. Who knew TUMS, really?

Dr. Evans is not opposed to supplements, but he does have plenty of procedures and prescriptions in his arsenal to fight the symptoms of IC. It can be overwhelming, but you seem like a very intelligent woman and I think you can figure out with his input what is best for you at this time. And it may change as you move thru this journey. And if you can't get to the psychologist office before you see him, he will make suggestions about anxiety drugs other IC patients use to help them stay focused on the present.

I didn't suffer very much getting use to Elmiron. It did make me feel a little light headed once in awhile. I noticed I needed to keep something on my tummy. However, you can't eat 2 hours before or after you take it. Overall my thin, fine blonde hair tended to break off more than fall out. I alerted my stylist and she kept the ends trimmed and I used good products that kept my hair moisturized. I did not noticed any breakage after a month or so. I think you will be fine it you are diligent about taking care of your hair.

Good Luck, anyway! I keep saying what works for me, might not work for you and that is because it's so true. Without a cure, we are experimenting and learning and sharing in hopes our quality of life is better.

[giabella]

Hi. I live in hillsborough n saw dr. Evans too. I am on 400 mg of elmiron.
My only side effect was stomach upset in the beginning. I started out on a low dose out of the cap. I also take Ativan at bedtime which relaxes me and my bladder. My problem is frequency n urgency with some pelvic pain.
I see Ingrid at Duke who is my lifesaver. Could not deal without her. See her if you can!
Ask about Ativan too.
I only take .5 mg.
I have been doing loads better until this past week. Worst flare in months. Found out it was from high oxalates in spinach n blueberries. I started a new diet n the oxalates apparently are irritating my bladder.

I promise things will get better.

[Emme 1210]

Hi again, Blazer 55--
I have to ask, even though, I know we are all different---did the Elmiron make you feel better? Did it relieve some symptoms?
I'm thinking the aloe is helping me some because I haven't had as much burning in my urethra since I've been on it for almost two weeks. I keep thinking, maybe I'll be one of the lucky ones that is competely relieved of symptoms from being on Aloe---I guess I have to have some hope.
Do you know of any support groups? It would be great to connect with others dealing with this. I feel so alone sometimes and like no one understands. I'm really worried about losing friends over this weird condition. I feel so anti-social and I don't really have any joy in my life now, except for my husband and son. I feel like a shadow is over me and my life now. I'm sorry to sound so dramatic, but I guess I'm just coming to terms with this. I hope I feel better someday and can be happy again.

[Emme 1210]

Hi Gina,
Did you get PFD before or after IC? I am feeling some soreness in my sit muscles and tailbone are--maybe because I'm so tense down there all of the time now? I still exercise---stationary bike and run (I'm not planning on stopping), and I feel good when I do those things. Does Ingrid help with PFD? What is her last name? I don't want to get PFD!!! But I'm worried this pain is the beginning of it! I don't know! Sooo many uncertainties and I don't have any help until seeing Dr. Evans on Apr 2.
Thank you for your advice!
--Emme

[giabella]

HI Emme:

Let me give you my direct email as it is hard to email via this site with log on, etc. It is ginarhoades1@gmail.com.

I will look up Ingrid's last name. It is a hyphenated name and I never spell it right. If you look up the Women's Center Physical Therapy Department at Duke, she will be listed with her picture. But I will get you her info as well.
PFD came on for me about a month or two from my diagnosis. I couldn't get in to see Ingrid for 2 months from that time. I recommend going quickly and have her do an eval on you. She will decide if you have it or not. She is amazing!! That is why she is always booked. I totally trust her and she is there to advocate and help you in any way she can.

Also, take warm baths if you can. I'd take them and have the kids hang in the bathroom with me. It really relaxed my muscles and urgency in the beginning. Working out is good but some exercises are not good for pfd and IC. Just find what is right for you. I do the eliptical or walk in town daily. I can't run yet. Ingrid doesn't want me doing it again and this all started when I was into running and had a trainer helping me develop my core strength. I also had a UTI....

How did yours start?
Where do you live in the triangle? I would consider elmiron or elavil and ativan for bedtime. They have helped me and alot of gals.

Gina

[blazer 55]

IC friends, Isn't it wonderful that we have this outlet to try and help one another.

And Emme, I don't want you to feel so blue. In the beginning when I first found out that I had IC I became so miserable and unhappy. Not only did I feel physical pain, but I began to have a heavy heart and questioned myself about what my life would become. I cried, I stomped, I sulked and I made myself and everyone around me miserable. Then one day on this site a woman posted a comment that I have never forgotten. And I live by this quote everyday no matter whether I'm having a good or bad day....

"Don't let this desease control you, you control it and you will take back your life".

I can honestly say that quote resignated in me right to the core. I decided to discussed it openly with family and friends. Why should I be ashamed. I didn't do anything to cause it and we talked about C-Sections, our periods and cancer, so why not IC. And if I was unable to attend a function because I was sick, everyone send home treats. How bad could that be? Now I can occassionally have a little Voda and 7up with lots of ice if I take Prelief before hand. And I even eat a little baked apple pie once in a while...again with Prelief. I can't have chocolate, but I can have caramel. It's all good.


So Emme, have faith in yourself. You're a strong women. You're already on the path to better days by reaching out to those who understand. And above all, be thankful for the things you have and look forward to the day you can help someone whose right where you are today. :angel:

[QueenMellyBee]

I have reached out to many of you in the North Carolina IC Community, and are now asking for your prayers.

With the advice and information provided buy those of you who see Dr. Evans, I felt secure in obtaining an appointment with him. I go next monday 8/27. My husband and I are driving up from central Florida just for this appointment, and paying 100% out of pocket ($426 co-pay) as my insurance won't cover out of state Drs. If he runs any tests, then the cost will be even worse.

I am so nervous as there is so much riding on this ONE appointment. I pray that Dr. Evans can help me, and that if he thinks I need to live closer to his treatment facility and my family, that my husband's job will take it all into consideration for a possible transfer.

If any of you would like to - please say a prayer for me on Monday afternoon. My stress and fear over what may or may not happen is overwhelming.

Thank you to all those who have PM'd me, and any prayers you bestow :angel:

[purpletomorrow]

Dr. Evans is wonderful, he's been very good for me.

A bit of advice if I may. Take a book; he's popular and he takes time with his patients, so he tends to run late. He's usually 2 or 3 hours late when I go see him. I just take a book and read until he's ready for me.

Looking at the drugs you're taking, he may well put you on antihistamines. He's a big believer in them helping IC.

He may also want to do an instill. He offered one to me the first time I went to see him. You might want to take a Xanax or a Clonazepam or a Lortab before this if it's your first one.

Good luck and keep us posted! Dr. Evans rocks!

Laura

[Emme 1210]

Good Luck with Dr. Evans, QueenMellyBee! He is certainly knowledgeable and I'm sure he'll recommend something that will bring you more relief than you've been having.
I will be praying and thinking about you this afternoon!
Be sure to get in everything you want to ask him or say to him...he tends to be a fast talker and because he's so busy, you may feel rushed, but get everything in! You're your best advocate!

[Blazer]

My fellow Icers are correct. His office is very busy as you can imagine and I take my Kindle to keep myself occupied. You might also want to take a bottle of water and a snack. You never know whether he has had an emergency or not and the wait could be a long one. Hopefully, you'll be in and out fairly quickly. Expect at least 2 hours.

My prayers are with you. Have a safe trip and God bless.

[Rope_Wrench]

Good luck to you. We will be all praying for you and have you in our thoughts.

[melanie626]

Good LUck. Agree with the peeps in that he runs late (always always always) but will also spend time with you. SO yes snacks and a book are a must.

Try to bring or send in any medical records and tell him your financial issues, he is understanding to that. Also it has helped to write our a history of your IC, your history, meds, meds trialed and if they failed so that he can see where you are at. I was just DC'd home on Friday after a revision of my surgery that was a normal complication and I got great care by his team and the facility.

Feel free to PM or email if you need support. .

[Blazer]

Great advise taking the history and records of meds. You'll do just fine, he is very kind. If you can tollerate it, pack some chamomille tea bags and a coffee cup with so you can heat up some to drink. It should help to calm down your bladder from a long ride. I actually drink a cup every night to help me sleep better. You might even consider taking your heating pad so you can use it at night on your tummy. If you have PFD, it will soothe the muscles. Good Luck! I'm here for you, too.

[QueenMellyBee]

THANK YOU ALL ladies for your good wishes, advice and prayers!!:angel: I got very lucky at my appointment w/ Dr. Evans. I saw him in his Greensboro office and only waited 30 minutes!

He spent 2 hours with me in total!! My DH took copius notes on everything that was discussed, so that if there was anything we needed to refer to later, we could. Dr. Evans was wonderful. He broke down what I already knew about IC for both my DH and I, and taught us some new things. He looked over my records and was (thank God) appaled at the care I received.

He was very receptive to my having had bad reactions on certain keystone medications, and didn't force anything on me. He wanted to try a Heparin in instill on me in the office - after the uncomfortable catheter (*ouch!) and waiting about 5 minutes, I couldn't feel my bladder AT ALL........

That's a BIG DEAL to anyone who "feels" their bladder all day every day, whether it's spasming or not. I started to cry I was so relieved!

Anyways - for anyone who I've talked to about why I was seeing Evans, our drive from Central Florida was worth it. He was supportive of us moving to NC - as he feels I need more thorough testing for Hunners ulcers, inflamed kidney, proper hydrodistension, etc.
He said he didn't have confiendece that I would do well with a pregnancy and IC being all alone with no family support or reliable medical care where I live in FL! This is what we needed to hear SOO badly!! He told my husband point blank that I needed long term expert care, and he would write a letter to indicate our need to move
.........enter more happy tears from me!:bonk:

The only issues now are:

A) Keeping up on Dr Evans to write a letter that my DH can present to his job to plead for a Hardship transfer..... not every one moves quickly, and I don't want to annoy his staff - but I don't want him to forget about me either. I am terrified he will get the memo weeks from now and say "What does this woman want? What letter?"

B) Getting insurance approval overturned for the Heparin instills (BCBS denied it, and I can't afford out of pocket) Again... reliance on Dr. Evans staff to fill out ppwk and take care of it.

As my insurance made a "special circumstances" approval just for me to see him. I have no-followup ability... so I have to fight for that issue as well.

Although my initial prayers were answered..... I still have a lot more praying to do. :pray:

[purpletomorrow]

Such good news! He's wonderful! Happy happy!

[Rope_Wrench]

Glad he was able to help. I already live in NC and don't have a real excuse to not to try him out but my uro has been great and my pain symptoms are not as bad as some here. I would feel bad taking his time when he could be helping someone that needs it so much more.
Again, glad he was able to help and I hope your move happens smoothly.

[Blazer]

Oh Queenmellybee I am so excited you had a good experience seeing Dr. Evans. I know you still have hurdles to jump, but it sounds like you are on the right tract. If or when you move to Greensboro, please let me know. I would love to have lunch and share our common issues with IC. I will continue to pray for you and of course, all women and men that suffer from bladder diseases.

[Sheri Ellen]

Anyone have any experience with a Dr Davis in Greensboro, a urologist. I was supposed to see Dr Evans but appt would not be until end of Nov, should I wait for that one or go see Davis in Oct? I have already been seen in Charlotte by a urologist and have been dx with IC.

[Rope_Wrench]

I have not been seen by either but if it were me, seeing Dr. Evans reputation, I would hold out for the best. If you just got a Dx, then they will tell you to get aggressive with the diet and maybe start you on Elmiron. Go ahead and do that and wait for the best. That's just my opinion.
Good luck and I hope you get the help you need. The next few months will be rough but hang in there.

Rope

[Sheri Ellen]

I have not been seen by either but if it were me, seeing Dr. Evans reputation, I would hold out for the best. If you just got a Dx, then they will tell you to get aggressive with the diet and maybe start you on Elmiron. Go ahead and do that and wait for the best. That's just my opinion.
Good luck and I hope you get the help you need. The next few months will be rough but hang in there.

Rope

thanks! that is what I was thinking.

[jameson77]

Sheri,
i have been a pt of Doc Evans for about 4 years now.....i can say with ALL certainty he is the best around!!!! I am sooo glad u have an appt with him! He is sooo valuable to us ICers. I see him once every 6 months --- and if i should get a bladder infection, sometimes i am able to get in to see him. I would absolutely suggest u calling weekly to see if someone has cancelled so u can move your appt up --- i have done this on several occasions and been successful. But, in the meantime, u may want to see your OB - or PCP - to see if they might could help you with medications until u get in to see Dr. Evans. He is a wonderful man, and will spend lots of time with you. But definitely check in with his scheduling dept to see if you might be able to move up your appt....it DOES happen! Just wanted to add that! Hope all is well with you!
~Meredith

[Sheri Ellen]

Sheri,
i have been a pt of Doc Evans for about 4 years now.....i can say with ALL certainty he is the best around!!!! I am sooo glad u have an appt with him! He is sooo valuable to us ICers. I see him once every 6 months --- and if i should get a bladder infection, sometimes i am able to get in to see him. I would absolutely suggest u calling weekly to see if someone has cancelled so u can move your appt up --- i have done this on several occasions and been successful. But, in the meantime, u may want to see your OB - or PCP - to see if they might could help you with medications until u get in to see Dr. Evans. He is a wonderful man, and will spend lots of time with you. But definitely check in with his scheduling dept to see if you might be able to move up your appt....it DOES happen! Just wanted to add that! Hope all is well with you!
~Meredith

Thanks for the reply. I will keep calling, Dec just seems like so long from noW!! I do have access to pain pills. The problem with them is they cause constipation which in turn causes its own problems so I really try not to take them. I did just get a cushion for car rides, we had just done a trip to Charleston and I think I died:dizzy: just now getting a little better and I don't even want to talk about sex:( Glad I found this site. Good to know you are not alone and not crazy and that maybe we can find some relief from this stuff...

[jameson77]

Sheri,
Yes, definitely keep calling --- i have been pleasantly surprise several times, and able to move up my appt! I am glad u have access to some meds. I have to take a stool softener with my pain meds or else constipation can take effect! I also sit on a coccyx cushion at work and in the car for long trips....it really helps. Dr. Evans also referred me to a Pelvic Floor Specialist in Charlotte when i first started seeing him --- she is wonderful.....i can private message u more info if u need it....but please make sure you mention this to Doc. There are certain meds that can help with sex. I will be glad to message u in private about what has worked for me, on his suggestions!
~Meredith

[Sheri Ellen]

Meredith, thanks so much. Raining really bad here!! Good day to be lazy! I got no help from the one doctor I have seen regarding this problem. Maybe my fault for not complaining more but going to be more vocal this time. I want a solution, not another pill....anybody else feel like that???

[jameson77]

Hello to all our NC gals.....just visiting the site --- could use some support --- been fighting a UTI for a couple weeks, along with the help of my local OB-Gyn.....this is the third course of antibiotics i have tried (Bactrim, Cipro & now Macrobid)....finally threw in the towel and called Dr. Evans' office....he requested my urinalysis reports --- had them faxed to him early this morning, but am still waiting to hear back.

Guess the reason for my post is to see if anyone else is having a tough time at the moment with IC flares due to allergies, etc.......sometimes I feel really alone with this IC and i could really use some encouraging words or to just know i am not the only one who's feeling the effects of allergy season!
Thanks ladies....
~Meredith

[giabella]

Hi Meredith:
Sorry you are having a hard time right now. I bet it's due to allergies. I take hydoroxyzine and do not have any respiratory like allergy symptoms. However the antihistamine helps me a ton. And yes, I have had more frequency type flares in the past few weeks than normal. Even thinking about up ing the dosage of the hydroxyzine when I see Evans in 2 weeks. Perhaps you can try that too. Sounds like your uti might have also made your bladder a bit angry too. Hang in there.

Gina

[Blazer]

So sorry to hear you are struggling with a nasty UTI. Back in the spring I was very frustrated with the same issues. Do you take Zrytex or Queritin? I know allergies can really cause flares that are hard to get under controll. I hope you get some relief soon. I am sure Dr. Evans will figure something out to ease your IC. In the meantime, try a heating pad on your tummy and drink some Chamomille tea. It will help you rest. I live at High Rock Lake. You are about an hour from my house. If you ever need someone to talk to, let me know.

[Sarojini]

Fall allergy season is in full swing here in NC... and I'm flaring too. This is compounded by the fact that my Interstim has decided to malfunction. Ugh... and I can't get anyone to call me back from Evans' office, of course. Anyway, I always feel worse right around this time of year and I suspect it is indeed allergies...

[Blazer]

Sarojini, I am so sorry you are having these issues. In our lives struggling with allergies and IC should be enough to keep up with during Spring and Fall. I do not have a interstim, but just the word malfunction sounds serious. I hope Dr. Evan's office calls back soon. I live between Winston Salem and Charlotte; I noticed your are a Support Leader. Where does your support group meet?

[jameson77]

Fall allergy season is in full swing here in NC... and I'm flaring too. This is compounded by the fact that my Interstim has decided to malfunction. Ugh... and I can't get anyone to call me back from Evans' office, of course. Anyway, I always feel worse right around this time of year and I suspect it is indeed allergies...

hey Jen.........hope u are doing better......and i hope u got a call back from his office. i am still waiting to hear from them. i missed a whole week of work last week AND wound up in the ER with a kidney infection. love that man --- but they need to have better communication (or i guess communication, period) with patients who call between appointments.

[Sarojini]

hey Jen.........hope u are doing better......and i hope u got a call back from his office. i am still waiting to hear from them. i missed a whole week of work last week AND wound up in the ER with a kidney infection. love that man --- but they need to have better communication (or i guess communication, period) with patients who call between appointments.

I finally got something to happen after THREE WEEKS of calling - and to get it to happen, I had to get the Patient Relations department at Wake Forest Baptist involved. When Patient Relations heard that an implanted medical device they put in was shocking a patient and the doctor's office ignored her for 3 weeks, they freaked out and went into major damage control mode, because I'm sure they thought I was about to sue. So THEY called his office, and whaddaya know, they called me back the next morning first thing. I haven't seen Dr. Evans himself, but I did see the Medtronic rep this a.m. and she reprogrammed me (there is something wrong with elecrode #1 so she reprogrammed the Stim to use different electrodes). However, I only have about 6 months of battery life left, so I'm going to need to have replacement surgery in the next 6 months.

So apparently, you have to force the issue with that office sometimes, which is really disheartening. A person with a neurostimulator should be seen immediately if she reports "shocking" sensations - not ignored for 3 weeks. Oh, and of course, this fixed only ONE of my problems - but the other still remains unaddressed. He prescribed tramadol for me, and I can't take it because it gives me severe headaches, upset tummy, jitters/irritablility, shakes, racing heart, and, oddly, it makes food taste HORRIBLE. So I am now completely without any pain medication. FUN. ARRGH.

I'm sure it's not Dr. Evans' fault though... he was amazingly responsive when he was in private practice in G'boro, but it started being difficult when he moved to Wake. This is likely because the office staff in all Wake clinics is well known for their disorganization and unfriendly behavior. I used to work at Wake and my husband still does, and because of the office staff at most clinics there, most employees often pay the extra out of pocket expense to be seen outside the Wake system. Just a heads up....

[Sheri Ellen]

I finally got something to happen after THREE WEEKS of calling - and to get it to happen, I had to get the Patient Relations department at Wake Forest Baptist involved. When Patient Relations heard that an implanted medical device they put in was shocking a patient and the doctor's office ignored her for 3 weeks, they freaked out and went into major damage control mode, because I'm sure they thought I was about to sue. So THEY called his office, and whaddaya know, they called me back the next morning first thing. I haven't seen Dr. Evans himself, but I did see the Medtronic rep this a.m. and she reprogrammed me (there is something wrong with elecrode #1 so she reprogrammed the Stim to use different electrodes). However, I only have about 6 months of battery life left, so I'm going to need to have replacement surgery in the next 6 months.

So apparently, you have to force the issue with that office sometimes, which is really disheartening. A person with a neurostimulator should be seen immediately if she reports "shocking" sensations - not ignored for 3 weeks. Oh, and of course, this fixed only ONE of my problems - but the other still remains unaddressed. He prescribed tramadol for me, and I can't take it because it gives me severe headaches, upset tummy, jitters/irritablility, shakes, racing heart, and, oddly, it makes food taste HORRIBLE. So I am now completely without any pain medication. FUN. ARRGH.

I'm sure it's not Dr. Evans' fault though... he was amazingly responsive when he was in private practice in G'boro, but it started being difficult when he moved to Wake. This is likely because the office staff in all Wake clinics is well known for their disorganization and unfriendly behavior. I used to work at Wake and my husband still does, and because of the office staff at most clinics there, most employees often pay the extra out of pocket expense to be seen outside the Wake system. Just a heads up....

This really scares me. I was recommended by a Doc in Charlotte, she says I need to see Evans and I have an appt but like everyone else I have multiple medical issues and my Husband is very aggressive when it comes to my health....had a doc screw me up and can no longer work because of it and he will not be nice if they are not responding...sounds like stress and h/a's to me!!

[Sarojini]

Oh yeah, your husband is going to have a field day with this office, unfortunately. Well - to be honest, I don't know. Maybe they are more responsive to other patients and for some reason just have a problem with me, but I doubt it. Other people have complained. It stinks because Dr. Evans is a great guy in many ways, and is one of the most knowledgeable IC docs in the country... but if there is no patient/doctor communication, none of that really matters. *sigh*

I guess my advice is, go to your appointment, and after that, if no one responds when you call, be aggressive and keep calling. If you still don't get a response, do NOT be afraid to call Patient Relations. Their contact info is: 336-713-2273 or patientrelations@wakehealth.edu . You are NOT being a pain, you are taking an active role in your own care. Plus, the hospital needs to know if a clinic is not treating patients with respect.

[Sheri Ellen]

Oh yeah, your husband is going to have a field day with this office, unfortunately. Well - to be honest, I don't know. Maybe they are more responsive to other patients and for some reason just have a problem with me, but I doubt it. Other people have complained. It stinks because Dr. Evans is a great guy in many ways, and is one of the most knowledgeable IC docs in the country... but if there is no patient/doctor communication, none of that really matters. *sigh*

I guess my advice is, go to your appointment, and after that, if no one responds when you call, be aggressive and keep calling. If you still don't get a response, do NOT be afraid to call Patient Relations. Their contact info is: 336-713-2273 or patientrelations@wakehealth.edu . You are NOT being a pain, you are taking an active role in your own care. Plus, the hospital needs to know if a clinic is not treating patients with respect.

Thanks for the contact info..aggressive it will be, we are paying them to take care of us, right! I have been told he is one of the best so we will see! I just want someone who knows what this is and how to treat it.

[jameson77]

Jen, i am going to PM you.
Meredith

[Sarojini]

:) Got it - and sent a reply :)

[ebonyeyes]

Hi Everyone I'm new to the site and so happy to have found it! I'm from Charlotte NC and I have my first appointment with Dr Robert Evans tomorrow.

[Blazer]

Good luck with your appointment with Dr. Evans. I hope he is able to answer any questions you have and prescribe a plan of action that helps your IC stay under control. Keep us posted.

[Sheri Ellen]

Hi Ebonyeyes! I live in Kings Mountain and I have my first appt with Evans on the 6th of december. Praying you get some help and please report back on how it went.. I get a little more nervous as it gets closer!

[Blazer]

No reason to be nervous seeing Dr. Evans. He is approachable and gets straight to the point. Just remember, you have the final say on any treatment that might he prescribed or any other Dr. for that matter. What works for me not work for you, so listen to your Dr. and pay attention to what your body is experiencing. I think sometimes we get caught up in all the chit chat about what people are trying and we forget the basics....

Take your medicine as prescribed
Figure out what foods you can't eat
Learn how to destress
Take Prelief as needed
Drink plenty of water

It is important that we be proactive about our disease and stay informed about treatments and possible side affects. And we can prevent ourselves a lot of grief if we keep list of drugs we take prescribed by all the drs. and give each dr. a list of those drugs. It is also important to keep a list of drugs that caused problems or flareups on hand so we don't repeat unnessary pain and suffering. IC has a mind of it's own and even in the best circumtances we can still have problems. So why repeat a bad experience. Knowledge is power and power gives us the courage we need to face IC.

[Missy3553]

Hi everyone. I live in Burlington and going through the "process" of being diagnosed with IC. I have been back and forth allll over trying to find out what's wrong. I've been really frustrated, confused and scared. I go for a second appt with an uro here to get a scope but I scheduled an appt with Dr Evans, but not until April. I'm just trying to deal with this issue on my own right now and it's horrible :(.

[Sheri Ellen]

Hi, I see Evans, had to wait months to get an appt but it was worth it! He has already helped me more than the last uro for 2 years!! Good luck, hang in there, I am just beginning to realize how much diet plays into it.... stay strong!

[Missy3553]

Very good to here :). Thank you for your reply. Yeah. Everyday I'm more and more careful in what I eat. Somedays I feel like I can't eat anything!! Thanks for your kind words.

[Emme 1210]

Hi Missy,
I have to say, I think you are going through the hardest part of IC, the not knowing and trying to figure it out part...Just the fact that you are on this board means you have figured a lot out and are doing much better than you probably were a few weeks ago. Also, realizing that you can't have tons of tomato sauce and red wine now is probably helping :) It is hard to modify your diet, but you'll get used to it and you may not even be that diet sensitive. Stress is said to be the number 1 trigger for a flare and hormones #2, so you might want to think about those things. You have probably been in a flare since you started having symptoms because you are so stressed out about figuring out what is going on---that was the case for me. Since you have a while to see Dr. Evans, I'd suggest finding a decent urologist in or around Burlington or even try Duke. They can give you some meds that might help such as pyridium (Uribel is a good brand) to help calm your bladder and flares and they may even discuss Elmiron with you which I'm sure Evans will put you on if he diagnoses you with IC. How did your symptoms start? Well, please let me know if you want to email with me directly and I'll private message you my personal email address. I was going down the same road as you almost a year ago and I know how hard it is and how it helps to have someone who understands what you are going through. I found a wonderful "IC mentor" on this site and she got me through some really hard times, so I would be happy to try to help.
--Emme

[Missy3553]

Yes. Stress is an understatement. Still new to this area then trying to deal with this beast. I have went to my gyno then he referred me to an uro who gave me antibiotics and vesicare and told me that there are soooo many bladder irritations. He said To diagnose IC I would be having to have issues for atleast three months. He scheduled me for a scope next week "just in case." I don't have much faith in him so yes, I scheduled to so a urogynecologist in Duke in a few weeks. I'm finding out more about this disease then any person I am paying is telling me. Total frustration. I had knee surgery over a month ago and three weeks later I started having symptoms of UTI, but kept getting negative cultures but horrible pain and tingling sensations. The antibotic helped a tad but I'm off it now and back to square one. The bladder pressure and frequency isn't as bad due to vesicare. Anyway. I would appreciate to email with you privately. I deff need some support cuz I'm trying to get employment and finding this debilitating :(.

[ebonyeyes]

Hi Sheri Ellen I was wondering how your appointmet was with Dr. Evans. I really like him too. My diet is very very limited as well. But I'm optimistic about the future!

[Blazer]

Merry Christmas to all my NC IC friends. The holidays are suppose to be a happy time for all of us. But if you are in pain and your IC is flaring, it can put quite a damper on your holiday spirit. Remember to have plenty of Prelief on hand and drink water throughout the day to keep your urine diluted.

Don't shy away from parties just because you can't enjoy all the foods. Eat a little something before you go and then you want be so tempted to stray from the bladder friendly foods. And be sure to take a dish to the party you can eat (put it in a beautiful dish and decorate it with some mint or a cherry or two). If it looks pretty, it makes you feel like you're not missing out on the good stuff you can't have.

Take a moment everyday to relax. Even if you can only sneak in five minutes to close your eyes, think positive and deep breath relaxing your body and calm your bladder. If you can, sip a little Chamomile Tea and use a heating pad on your bladder to keep those muscles from contracting.


Have a peaceful Christmas with your family and friends. Thank you for being here to chat with, I need your support. God Bless each one of you. Cyndi

[Sheri Ellen]

Merry Christmas to you too! Thanks for the words of encouragement!

[Flowerchild]

Merry Christmas to my IC neighbors! I pray we all have a year of joy, hope, peace and days filled with no thoughts of our bladders!