I'm new here, but not to IC

[KathrynPInk]

My name is Katheryn and I am the mother of 5 children and have had IC for at least 18 years; I was diagnosed about 11 yrs ago after seeing 6 Urologists. I finally found the one DR. who put me remission for awhile in Greensboro, NC. Now I feel as though the good is gone for my health for awhile and I am scared!. I am in constant flare since January. I have kept a good IC diet, but unknowingly started eating a cereal with soy for several weeks...I am hoping that was what started the bad, bad flare. I am under stress as all of you; My husband of 26 yrs has divorced me and since he is quite a bit older THAN ME and he is near retirement, I did not get a great settlement. I sold our home and am now in an apartment with my youngest child, a son. I am also suffering grief my brother's death a year ago, and i was with him through his cancer treatments until the end. We were so close. I am on atarax, valium, pyridium, norco, and I tried Elmiron which does not seem to help. I also started singulair and without much success. I am starting something called Sanctura, and Lyrica I also have suffered from Roseaca (which was virtually cured from a procedure called Photoderm)...a type of laser treatment. Now my fair skin is only pink and not red. I am very blond and fair. I also have fibromyalgia, and MANY drug allergies.
I am a clinical social worker and work part time at this point. I need full time, but i have a job facilitating clients in the court system and I need frequent bathroom breaks....as you all know! I really do not feel well enough to work at this time, but i have to as i am sure so many of you can relate. So, I sit here with that hard pressure on my bladder and pain, but does anyone have a great drug for frequency that does not cause retention? I am so glad for this network. I am glad to meet ya'll, but so sorry we have to meet with a disease that makes us think about it all the time. I feel as though my family gets so tired of me being sick...but i try so hard to be the good mother, and I really did try to be a great wife.
Sorry to ramble, but I have not had a sister in pain before. I have great anxiety and it seems strange that I also treat women with Postpartum anxiety and they have NO idea what a basket case I am.
I hope we are all healed.
Love, Katheryn

[traceann]

Katheryn, welcome to the gang!! I am so glad you found us too, this is a great place for information (all the latest), support, friendship - I could go on and on But like you said, it's a shame we all have to meet this way - by being sick, ugh!!!

For me personally, Ditropan worked wonders. I took 5mg 3x's a day. There are others that do well with Detrol too. I know there are a few new ones out there as well. For me, it helped with my frequency (in combo with my other meds, alone it only took care of the urethral spasms) and spasms.

I know some others will chime in to say hello and give information on what's worked for them! I am sure you well know, it's trial and error with this crazy affliction, lol. What works for one, might not for another. Ugh.

Hope to see you around the boards!!!!

Hugs,
Tracey - P.S. soy was a monster for me too!!!

[Sarojini]

Hi

I note you saw a doctor in Greensboro; I see Dr. Evans there (I live near Winston-Salem). Like you I have IC and fibromyalgia, as well as myofascial pain syndrome, asthma, chronic migraines.... the list goes on.

As for your flare, it sure sounds like you are going through a lot with it! I am sure it is probably the stress of the divorce, your brother's illness and death, and work, plus possibly the diet boo-boo that may be contributing.

It sounds like you're doing all the right things to help yourself, but maybe another visit to your urologist may help. Perhaps going in and discussing things may help you out -- and maybe the addition of a new treatment. Have you thought about rescue instillations? You can read about them in the Patient Handbook under "Treatments" (http://www.ic-network.com/handbook) and there is a section on these boards to discuss them.

As for the drugs like Detrol, Ditropan, Sanctura, etc -- I personally cannot take them since they ALL cause me to retain, but as you see from traceann's response, they do work for some! How long have you been on the Sanctura? A lot of these things take a trial period of several weeks to determine if they are working...

I'm glad you found us

[SandyRN]

Welcome to the board, fellow Southerner...I figure you must be because you used the word y'all. My favorite word. I have been to see Dr. Evans in Greensboro as well, and I'm assuming that is who you saw since you said he'd put you in remission. He's a great doctor!

I'm sorry to hear about your husband divorcing you. Did he leave because of the IC/illnesses? I know that must have been very hard for you to deal with, especially because you are sick.

I've done the single mom thing myself and know that it's not easy. I became sick several years ago and have 3 kids. I can understand most everything you've gone through. I'm also very sorry to hear about the loss of your brother.

I also have fibromyalgia, and lots and lots of pain. I'm sorry that you have all these health problems, but am very glad that you found us. This is a great place to meet people who can relate to the pain you are experiencing. Please don't ever hesitate to ask questions here....read, read and read some more because, at least for me, knowing that there are so many others out there with the same problems I have is comforting. I have learned so much here!

Again, to the board and I look forward to getting to know you.

Sandy

[Babs RN]

Hi!
Welcome to our bladder neck of the woods! I am enduring a divorce right now as well. I know how stressful it can be at times and make that bladder stand up and whistle Dixie. Please know we are all here for you, and if you need to vent, please don't hesitate to lean on us. I did not have much luck with Sanctura, Enablex and such. I am an RN, and it is ironic you mentioned taking care of others and thinking, hey--I wonder if they have any idea what's going on in my body. I am so sorry for the loss of your brother. We are glad you are here.

Hugs and ,
Barb

[KathrynPInk]

Thanks to all of you wonderful ladies who have welcomed me. It means more than I can truly express. I am starting on Sanctura today and yes I go to Dr. Evans who gave me a life when I thought it was over years ago!!!!! I would travel anywhere to see him...and YES, I am a southerner ya'll, who lives in Raleigh. I feel "old" right now b/c of this condition...and it freaks me out. I am still young in many ways and I know I am taking to you who know the suffering all too well.
Again, thank you and as I sit here crying, getting ready for work.. I am grateful for the goodness i have been sent by your welcomes!
I already feel like I have friends who know what this devilish disorder is.... Excuse my French, but it sucks!

Love, Katheryn

[KathrynPInk]

I forgot a question

What is the aloe vera stuff i keep hearing about? I apoligize if I am posting on wrong page. And...do any of you "experts" in pain and peeing, think the soy could have pushed me over with the stress? I hope it was that.
Love, Katheryn

[traceann]

You are so welcome Katheryn!! We're glad you're here! It's so tough to figure out what the culprits are, for me it was a trial and error of ruling things out (I kept a really detailed voidng/pain/food diary) by going over my notes. I do know that mine seemed to come on full force at the time of my divorce - I had had some troubles like 4-5 years before that - again at a super stressful time in my life, but it went away as mysteriously as it appeard. Well, when it reappeared, I did have it long enough, lol, to figure out what the diagnosis was. So, if I had to hazard a guess, for me it was huge emotional stress - and I am a sort who's really obviously physically affected by stress, always have been...*sigh* And stress and soy were two of my biggest triggers. Ugh.

XOXO

[KathrynPInk]

I just read your story, Jen, and I too went through Grad school; how I did it, I do not know. I have not done self catherizations at this time b/c I am so inflamed at the moment. I saw Dr. Evans yesterday (I met Laura there--a brave beautiful girl) and his office had more ICers than I ever saw before. Some of us are worse than others and at least I know what a remission feels like. Heaven. Pure Heaven. I have a kinda sorta boyfriend who teaches at a local College, who is very understanding of my condition and does not expect me to be the romantic girl I always wanted to be....(if you know what I mean?) God bless him for standing with me. He just took me to get my vitamins at Whole Foods., but in reality, I do not think he can wait forever; he has a life and I pray I can be a good friend for him when needed.
Now I will post on appropriate threads* and thanks again for the understanding.
By the way, I love the personal pictures of kids and pets... Beautiful. What would I do without OUR dog at this very moment. He can "sense" that I am not doing well. He is a Dobie and hangs on to me the way my kids did when they were little...and YES, My ex left me b/c I could not be "lover of the year" during flares. I gave birth 5 times ((9-10 lb babies) and the last two, c sections (which I believe had something to do with my IC..Abdominal surgery, plus each of my brothers have autoimmune disorders. Both had fibro with it. I was a stay at home mom for many years due to so many kids and he was a professor and researcher who was able to care for us financially, but I was kept in stress from him saying he would leave me at times. WOW. I'm done and I have given my new friends a boatload of stuff. Sorry!!! I will quiet down now.
I am thankful ya'll are out here in the world. I need to pee again. AND YOU GUYS get what I mean!
Katheryn

[KathrynPInk]

Tracy, thank you! I feel welcomed and the whole bunch of everyone are so sweet. I feel supported for the first time by other women. Thank you ALL!!!
Katheryn

[Sarojini]

Yes, Katheryn, Dr Evans is great

I did go to grad school and got my Ph.D. in 2001. Normally I'd be at work right now, as I'm a research scientist, but I am home now recovering from Interstim surgery that our friend Dr. Evans performed last Friday. While we don't expect it to treat my pain much, it has already improved my voiding symptoms significantly. I'm very happy I made the decision to do it, but it took me a long time -- I tried everything else before I went ahead with it.

I'm sorry to hear you have had so many troubles regarding your romantic life -- unfortunately, many ICers do. We have a Romance & Sex board, actually, that is filled with all sorts of tips that may help make intercourse more pleasureable. I hope you find something that helps there -- and I'm glad that you have someone supportive in your life right now. I know it helps that I have a supportive husband.

Again, glad you came and found us