Am I crazy? I'm thinking not.

[Zino]

Hello All,

My name is Sue. Although I haven't been formally diagnosed with IC, it has been suggested to me that I have it. I am a Kaiser Permanente patient, and as such, have never really had a family doctor. A lot of times, you just get whomever is working on the day you have a problem. I've had a history of bladder infections and I think part of the problem is that whenever I would have symptoms, I would call Kaiser and they would prescribe over the phone without culture. About 9 years ago, I went through a period of two straight years where I had one episode after another. Sometimes the urine would be positive, sometimes not. Then suddenly, I never got another one. Well, I've been going through some very stressful things in my life and last December, they started again with a vengeance. The time I finally went in and did a lab spec, it was positive, but then a few other times it was not. My symptoms were typical: frequency, burning, feeling like you have to go after you just did, chills and a feeling of panic. Today, I left work in a huge panic after the onset of symptoms this morning and ran straight to Kaiser to give specimin. It came back negative! I know I'm not insane, my symptoms were real and I was in tears because of them. One doc at Kaiser said I probably had IC. I am waiting for a phonecall from someone there to tell me what I'm supposed to do or what the next step is. Now, back to the stress thing. My husband and I are going thru some horrible times right now. It seems like every time we have a huge fight which results in a sleepless night and many tears, I have an episode of this a day or two after. I've begun to notice certain connections, also like my bladder doesn't seem to like Chardonay wine anymore either. Throughout the last year I've also noticed that I have to pee like a gazillion times a night and during the day. Like an idiot, thinking I had UTI, I've been taking cranberry supplements, only to read here somewhere that they are BAD for people with IC. How nice. I don't want to feel crazy, I know my symptoms are real. Sometimes I get so upset, then you get online and tend to diagnose yourself with everything under the sun. (On a side note, I was diagnosed with Meniere's disease over 8 years ago, but haven't had an episode in many years.) Did any of you go through this uncertainty also and have the feeling like you were going nuts??? I'm so sick of my bladder and peeing that I could literally take it right out of my body and throw it in the garbage. I've left out a ton of stuff, but in nutshell, that's where I'm at. I'm sitting here at this computer still feeling like I have to pee and like an elephant is sitting on my bladder while a circus monkey spits fire at my urethra. It's aggravating so I'm trying to joke about it. Please talk to me!!!!!!!!!!!!!!!! (by the way I'm 38 years old and have 3 kids, married-but the marriage is in serious trouble)

[Ginny]

I don't mean to be nosey but is the marriage in trouble because of the bladder symptoms. It tends to do that.
Yes, I feel like I am going nuts a lot of time. Chronic illness does that to you.
I am hoping you don't have IC but you do need to see a Urologist to find out.

Ginny

[VickiB]

Hi Sue,

So sorry you're going through all this!

It does sound very much like my IC story. The UTI's, then tests coming back negative while the awful symptoms remain. I too, ended up at this site before being diagnosed, frantically looking for answers and thinking boy, this IC sounds like just what I have! Sure enough!

It sounds like a visit to a Urologist is in order. While it does sound like IC, there are other things that you will want to rule out on your way to diagnosis.
In the meantime, have you tried Azo Standard or Uristat (OTC for bladder pain, burning, etc)? They've helped me through some rough patches but are not meant for long term use. And yes, stress can cause IC to flare and it sounds like you have more than your share of that going on in your life! I don't know how to tell you to reduce the stress, having never been that successful with that myself! Some say yoga, deep breathing, counseling, etc.
Also, if it is IC, many of us find diet to be a major culprit in causing our symptoms. There's a page in the handbook which lists a variety of food & drink that we typically must avoid. It can be found at:
http://ic-network.com/handbook/diet.html
You might give this diet a try to see if you feel better.

I'm glad you found us and hope you're able to find relief soon!

Vicki

[Zino]

Hi Ginny,

Appreciate the reply. Marriage in trouble due to other reasons. Just got call from Kaiser doctor, she is an idiot. Told me to see my gyno. I just saw a gyno per her advice and had a pap, complete exam and 6 tubes of blood taken. Everything normal. She yells at me and tells me that I did not see a regular gyno she was just some sort of nurse. Whatever, like I knew. How will going back to a gyno help me with my urinary problems???

[Zino]

Hi Vicki,

On the uristat, I have some on hand and was already taking it this morning. My specimin looked like orange koolaid! I guess I will need to go see the specialist. Are all of these tests that everyone talks about really horrible? No I'm freaked out about it all. Also, do any of you notice that sex causes flare ups? Because we did have sex last night too and I've noticed in the past that even when I get up and pee and even wash up, I can still have symptoms the next day.

[kayrol]

Seems most of us feel like we are going crazy sometimes. I am also newish. If you have IC, stress will definetly trigger symptoms. My husband was laid off for 4 months and thankfully found a job, but this has happened to us a few times, one when we had to move out of state. This last lay off put me "over the edge." I not only have IC flairing, but I am BPPV that has not gone away and am worried that I, too, may end up with Menieres.

I do know that you don't want Menieres flares. So, find a good urologist for diagnosis and treatment and perhaps look into marriage therapy or for yourself so that you can keep the stress at bay as not to trigger attacks of either syndrome. Don't misunderstand my suggestion of therapy, you have REAL symptoms. I have had enough doctors hand me a psychiatrist's card thinking my problems were psycological. IC is REAL and NOT psycological. But stress because of personal issues definately sets symptoms in motion.

You are not crazy. I found this forum to be very supportive, healing, place to vent, and some really good advise from many NON-crazy people! Hang in there.

K.

[Sarojini]

You're NOT crazy; it's NOT all in your head. Don't let anyone, not even a doctor, tell you that. I think your next step would be to get a referral (if you need one) to a urologist, who can do some more extensive testing and tell you if you have IC or not.

While you're waiting to get in, if you haven't already, read our Patient Handbook at http://www.ic-network.com/handbook . It's full of wonderful information, including the IC diet, which you may want to put yourself on right away to see if it makes a difference in your symptoms.

In addition, I don't want to pry, but perhaps some counseling with your hubby may help ease some of the tension you are feeling right now and also help with your bladder symptoms. I know that mine flare up badly when I am stressed out!

:grouphug:

[VickiB]

It seems terribly common for a woman to be sent to a gyno first when you complain of these symptoms. My doctor insisted I do that first too, even though I said this is definitely in my bladder and wanted to go straight to the urologist! Personally, I think they like to blame everything that happens to a woman on her reproductive organs!

Well, the tests I had weren't horrible, though far from enjoyable. I was at the point where I didn't care,...I wanted some answers and I wanted them soon. I was so done being a prisoner of my bladder, and couldn't take many more days of the pain & burning I was living with. After being given a name (IC) for what was happening to me, starting the diet, meds and learning lots of self-help tricks from this site, I finally have my symptoms pretty well under control. -If this is IC you're dealing with, I want you to know that most of us do get better!

Sex can cause problems, unfortunately. Lots of lube helps. Finding comfortable positions. Cold packs or heat. -Sometimes I just have to say, "I can't!", and often times wish I'd have said that beforehand while he's snoozing afterwards and I'm toughing it out!

Hang in there!

Vicki

[Tracey5399]

Hi Sue,

I am very new here and have just been recently informed that i have IC as well. My symptoms were pretty much the same as yours, the only advice i can give is to find a Urologist who is IC friendly. It's ok to ask them on the phone as well as getting a list from the ICA network. Had i done that from the start i would have saved myself a ton of money & misery.

Good luck, hope you feel better soon,
Tracey :)

[Zino]

I appreciate the responses from everyone. My hub and I did try counseling after the cayaclysmic event that happened to our marriage last Dec. The counseling was a joke. Instead of addressing the actual problems, he wanted us to make a calendar to sit down and pay bills and schedule our lives. What a joke. 90.00 an hour to tell us how to get organized instead of how to deal with some MAJOR problems that we were having.

I was just standing outside hanging clothes on the line thinking what the hell could possibly be next. I soooo hoped that my urine would have been positive with bacteria just so that I had an explanation. Then I feel like it's all in my head and that I'm causing it myself. Maybe I should be on the venting page!

[vm]

It's not in your head and you aren't causing it. :kissing: There are quite a few people here from Ohio - they may have urologist recommendations for you. :welcome:

[Zino]

Anyone near the Cleveland/Medina area who knows of a good urologist?

[sweetangel2080]

Seeing a gyno may not be so bad, I was diagnosed through a gyno who deals with urinary problems as well.
suezinohio - hope you get answers soon.

[Ginny]

Yes, you are right. It's a Urologist you need to see. Good luck.

Ginny

[Sherry5]

Welcome Sue! :welcome: I myself was diagnosed by my GYno, who happens to work with a lot of IC patients and knows quite a bit about it. It is a good thing he did, or it could have been years before I was diagnosed. Someone told you to make sure your uro is IC friendly, and from what I've read that is excellant advice. Some uros are almost hostile towards IC patients because they don't understand it.

I was diagnosed with the potassium test and it made me flare really bad for about 2 weeks. It seems to be the consensus around here that the only way to get a true diagnosis is with a hydrodistention done under general anesthesia. This procedure can be used to diagnose, and actually seems to help many IC patients. It's always a relief to know for sure.

Until you get into the doc, the IC diet may bring you immediate relief. I know it helped me a lot. ANd prelief if you eat anything you are unsure of which is available over the counter and is harmless.

Sex is a huge trigger for many of us. There is usually a thread or two about it in the relationship section. We ave all learned lots of tricks. The first thing I did that helped me physically and emotionally is just say no if it hurts too much. No matter where we are at. Otherwise I end up resenting him and not wanting him to even touch me for fear it will lead to sex. There are many things you can do to make it more comfortable.

I have found this site to contain a wealth of information, and hopefully it can help you too. Good Luck!

[Tracey5399]

can someone please help me with a new post, i have a question and i can't seem to post it ( yes i am blonde & slow ) need help!

Thanks

[icsonja]

Tracey, it took me awhile too, try this , see at the top of this page the line that says ICN Message Boards and has a little file in front of it? Ok click that and it will take you to the message boards home page w/ all the forums listed...such as just venting or newly diagnosed ...fing which area you want to start your question at then click New THREAD. That is how you get your own thread started,not just adding on to another one. I hope this helps.
By the way I am Blonde too...lo Sonja

[Elle]

Sue - I'm sorry for the things that you're going through. As for going to the gyno, some people find gynos more knowledgeable about IC. Many of us have joked about being the lone woman in a waiting room full of impotent men in the uro's ofice! :bonk: But, you probably need to go to a uro with some knowledge about IC for a dx. There are many Drs listed on the Medical Providers section on the ICN home Page. If you can go outside of Kaiser to one of them, I would highly suggest it. As for the tests to diagnose...once you find out what kinds of thigs will be done to dx (many Drs use different methods), you might want to post so we can give you specific advice for the procedure. The first thing will probably be an in-office cysto and urodynamics study. During a cysto, the Dr inserts a scope and looks around the bladder for abnormalities, but usually can't diagnose from this alone. During a urodynamics study, they will have you empty your bladder and then have you lie on the table. A cath will be inserted and a stream of sterile water will drain into your bladder. When you absolutely can't hold anymore, you tell the Dr/nurse. They can determine what your awake capacity is. Then after you pee it out, they will run a sonogram-type device over the bladder to see if you have any urine left. Instead of an in-office cysto, hopefully, you will have a cysto/hydrodistention w/ biopsy. You would be put under general anesthia. Then the uro fills your bladder and drains it to check for pin-point bleeding (glomerations), which is a sign of IC. If you have a hydro, have a biopsy done also. They can check for chronic inflammation, among other things. During the procedure, they will find out what your bladder capacity is under anesthia and let you know if it is abnormal. There are other procedures, but these are the most common.
I hope you don't have IC, but in case you do, you've found the right place. The best thing I could suggest for you right now is to follow the diet (especially stay away from sodas, coffee, tea, alchol and smoking), and drink lots of water. Also, try to get as much sleep as possible. If you're having trouble sleeping, that can greatly affect your sympotoms, so you might want to ask for a sleep-aid, or try something like TylenolPM. I hope your problems with your hubby resolve. I know what a stressful marriage can do to our bladders. If you need to talk, ask questions, or vent...You've come to the right place! Hang in there! And, BTW, you're not going crazy!!!! :grouphug:

[kayrol]

I had the hydroextension 10 years ago. No ulcers or pinholes. But if you read the handbook, there are new criteria today. I had a wonderful uro WOMAN 10 years ago and she moved to another state. It took 10 years and about 5 MALE uros, a couple of gynecologists, tons of tests, and finallly a WOMAN actually LISTENED to me and diagnosed IC. Read thiis:
http://www.ic-network.com/newsroom/edit101201.html
http://www.ic-network.com/newsroom/edit121502.html

The counselor you had for marriage counseling obviously was an idiot. I think you need to take care of your heath first. Once you get a diagnosis, on your way with some type of treatment, you may be better equiped to handle your situation at home.

I might suggest that you copy the above links and some other information on IC from the handbook and take it with you to your next appointment. And if that doctor poo-poos you or gets offended that you have researched into this, then you will need to find someone else. You are your own advocate, this is what my nurse friend tells me and says that any doctor worth his weight will be glad you are an informed patient.

And....vent away here!!!

K.

[icsonja]

Hi Sue and Welcome :welcome: , I should be able to remember you my moms name is Sue. Anyhow honey, you are not crazy, your are just not getting competent medical care yet. Many of us here, probably most of us went to several Doctors of varing sorts (I thought about a witch doctor,I was in so much pain)before we got the right diagnoses and treatment.
IC is an illness where you have to be very pro-active, you have to do your homework and educate yourself and that will help you in multiple ways, it helps your batterd self-esteem (maybe I am crazy thing). It will help you pick out or weed out the Doctors who are not going to help you, It will give you a sense of control in a time where you are feeling none.
I have been at the edge of thinking I just cant deal with any of this and I will rell you that I am not pain free or cued or any such thing, but I survive and Itry to help others who have felt like I did that day I called teh ICN and spoke to my angel Jill for 2 hours.I will try to be your angel, just email me and I will respond I promise.
You will manage this Sue ,OK? You are among friends here.
Sonja
email icsonja@sbcglobal.net or yahoo! messnger ID namw icsonja (add me on)

[~*~Christine~*~]

Just saying :welcome: and I hope you get an answer for this problem soon; the pre-diagnosed state is the worst

[Zino]

You all ARE wonderful. Well,I called off sick and have an 11:40 appt with the gyn at Kaiser. We'll see how that goes. My regular doc prescriped elavil for me last night. What do you all know about that drug? I hate being a pill popper. Just to make some of you laugh, on one of many of my phone calls to the dr. office yesterday, I had a nurse actually suggest that I get a mirror and look around "down there". I almost told her to F off.

[SandyRN]

First of all, I want to tell you that I used to have Kaiser HMO as well, several years ago, and they are NOT known for their loving, tender care, or competent doc...I was shocked to see that they are still operating!! I thought for sure they'd go under by now as they were being sued in a huge lawsuit several years ago....oh well.

I did manage to see the same gyno with Kaiser, I just had to make my appts when she was in the office..if I had an emergency I had to take whoever I got......so it is possible to have some sort of consistent care with them, it's just not easy.

All that aside, I'm so sorry you're going through so much right now. I think that stress, marriage problems, just LIFE in general can cause my bladder to react--spasms, burning, flares from hell..etc. So you're in good company here-----and definately not crazy!!

I know that nurse sounds crazy for telling you to look around, but you might actually see something there---redness, inflammation, a discharge that's not supposed to be there, etc. I know its odd, and awkward, but its a good thing to get to know your body, whats the norm for you, etc, so you can tell when something isn't right.

Elavil is taken by many on this board. I used to take it too, but it's been years, so I will defer that one to the others here. I hate being a pill popper too, but at this point in my life, I've resigned myself to the fact that I have to take these meds to function, that they give me some sembalance of a life back.

Nice to meet you and vent here any time you want to. ....no question is silly or stupid!

Take care, Sandy

[Elle]

Elavil is supposed to help with nerve issues in the bladder. I read that lots of people say that it can help a lot with spasms if you stay on it. I did not have much luck with it, but it did help me sleep, which is always a welcome thing. I know what you mean about the pill popper thing. I used to be the same way, and sometimes I still get a hang-up about it. But, if the alternative is to be in horrible pain ALL of the time, popping a few pills isn't such a bad thing. Like Sandy said...ask any question and don't be afraid to! We discuss just about everything on this board - sometimes pretty disgusting things! :biglaugh:
As for looking "down there", I have gotten into such a habit doing it now that I often show my husband how bad things look just to prove to him that I do have "issues". Since I started doing that, he seems to understand a bit more. But, I do have to say I'm pretty lucky in that area. I have a wonderful husband who, despite a near celebate existance, is very understanding most of the time. There is a lot of information on Elavil under the "Antidepressants" section. FYI - While Elavil is an antidepressant, it is often given in very low doses to IC patients and not in a doseage high enough to treat depression.

[Zino]

Hi all,

Went to gyno yesterday. After telling HER everything that has been going on, she looked kind of surprised and asked me if anyone had suggested that I had "honeymoon cystitis". I know all about what that is and nobody really suggested it to me before, but I'm confused about a lot of things. How can you go years and years without a problem? Then you think you have another infection and your urine test is positive. Then months later you have more symptoms and the urine test is negative. Then you can go for 6 straight months just fine, you can eat what you want, drink all the wine you want, screw like a bunny every night if you want, take bubble baths, wear silk thongs, wipe back to front, and still be fine. Then a year later, out of the blue, symptoms! I just don't get it. I don't really know what sets it off, but in my case I suspect 3 things: Sex, Stress and wine. So anyhow, this gyno gave me a 3 month supply of bactrim and said to take 1 pill after sex and one again the next morning and we're supposed to see how this approach works for 6 months. If it works, she will assume it's honeymoon cystitis, if not, then I go for the IC testing. Does this sound reasonable to any of you? I still have mild symptoms as of today. So this has been going on since Thursday morning. Arghh. Oh and plus she found miniscule traces of yeast during the exam so now I have to shoot the monistat up for 3 days. She said it was because of the cipro I was taking. Then I try to explain all of this to my husband who looks at me like I'm a whiner and I say, how would you like to be made to lay down on a cot, have someone put a spotlight on your penis, have them take a mini-jack and pry open your pee hole to look inside, then take a giant q-tip and stick it inside swooshing it around all the while you are trying to make small talk and not squirm or piss on the doctors hand? Well, that shut him up. I hate those exams, I feel like someone is going to fly a small airplane right into my vagina. ickkkkkkkkk

[massagedoula]

I think that 6 months is too long to wait to "see" if the treatment works. If it is an infection it should respond in much shorter time than that. I don't think you should be made to be miserable for half a year if the antis don't work!

[green_the_fish]

I agree with Massagedoula.

Interstitial cystitis is commonly misdiagnosed as "honeymoon cystitis". Personally, I would go and see an actual urologist for a second opinion.
Sex, stress and wine are also common IC triggers.

Hope you feel better soon.

[cass2376]

I agree w/ them, still see a uro just in case. :welcome: I'm glad you found us!
I too have kaiser, I'm new to them though. I was dx by my gyno cause when my normal doc said he thought I had IC and sent me to a uro, the uro just listened to my symntoms and said," I think this is all gynocological"(sorry for my spelling, I suck at it :) ) and sent me to a gyno. My gyno then said I think you have IC but I will check everything out "female" wise and we will see. He did a laparotomy (sp ?) and he found some endometrosis, but not enough to cause my severe sym. He scraped it all out and wanted to wait to see if pain got better. It did not so he did a hysterectomy cause my tissue from the lap. tested positive for Microscopic endo and the only way to get rid of that is to take all organs out containing that ( my uterus, tubes and both overies) Six weeks later, pain and symtoms back and worse. He then had a IC specialist come in to do potassium res. test and in May of 2004 I was dx with IC. See how alot of our stories have crazy times dx us. Anyway, I stayed w/ the gyno to do my Elmiron, litocaine, and heprine instillations for a year cause there office was great w/ me. They put me on Elmiron and Vicodin for pain as needed, problem was I needed the Vicodin all the time cause I had pain all the time. So they referred me to a uro who Knew alot about IC and he added Amitiptilin, Aderax, and Methadone for my chronic pain. He discontinued the instills and was just about to do a hydro&cysto under Gen ans. and then my husbands insurance at work got changed to Kaiser. I was so upset. But I found a general doc., had all my medical records sent to her and told her my problems :) and asked to refer me to a uro familiar w/ IC. She found one and I have been with him for 2 months. He agreed w/ my meds but wanted to try DMSO instead of hydro. So I am on my 4th one, still no change. Oh gosh, I'm sorry I have just been rambleing on, I'm so sorry. ALL this said to say, look on the Kaiser web page, find your area and look for all the uros close to you. Then call them all and ask them if they treat IC, then pick the one you want, and GO see him or her. Your symtoms sound a lot like IC. Just to let you know, about 2 years before I was dx, I had a 8 month span that I had UTI's up the yang yang on and off. Then, I would have all the same syn. but w/ all the tests saying I did not have a infection. This went on through the next year, then my doc suggested IC. Anyway, thanks to anyone who actually read all this, :biglaugh: I kind of felt lonely today w/ my IC sym. and needed to get all this out :) Good luck Sue and I would try to see a uro anyway, and if not, try the antibiotics for a while but if no relief is found, see a uro then, not in 6 months. Anyway, take care of yourself and I will be praying for both your sickness and marrige, hang in there, and if you ever need to chat or have any questions feel free to PM me or E-mail me at macias2376@charter.net
God bless, Cassandra :angel: Oh wow look how long this is I'm soo embarresed..... SORRY :biglaugh: ;)

[Zino]

Cass,
Thank you for the support. I am back to work, but still have symptoms. Mostly a burning sensation and feeling of fullness. Obviously the anti's aren't really doing anything and how can they if there is no infection present? I will be making appt. with urologist based on everyone's advice here. Thanks so much, I'm at work, or I'd chat more
Sue

[Tracey5399]

Hi,

For me my primary doc was the 1st one who mentioned IC to me, and from there i went to a Uro.

I am very interested in this honeymoon cystitus, please keep me updated on how the bactrim is working, if at all. I am going to this discuss this w/my uro also.

I hope you find the answers you are looking for, and pray the bactrim works for you.

Tracey :)

[Zino]

Well, I am feeling better physically today. Yippee. Emotionally though, another story. I mentioned earlier that my husband and I have had major problems this past year. Well, I guess I'll go ahead and dump it all here. I lost a lot of friends over it and I don't have a lot of people to talk to. You all seem very supportive so I'll throw it out there and see what everyone thinks.

I have been married 16 1/2 years and we have 3 kids, 16,14,11. Great kids. Most of my marriage I've been pretty unhappy with my husband. He is a very controlling, tempermental person. I knew this when we were going out, but I was stupid and thought he might change. He grew up in a large family with an abusive father and pretty much all of his siblings are on medication. I begged him for years to go see someone for his temper. He never hit me or anything like that, he just had huge mood swings and expected all of us to deal with it. He is also a major name caller and I've been called some pretty horrible names throughout the marraige. To make a long story short, it's been really crummy. Divorce wasn't really an option because of many things: The kids, the bills, the large mortgage, car payments, you name it. Well, this is going to sound terrible, but I wound up having an affair. It went on for 1 1/2 years until my husband found out about it last November 4. My best friend was the only one who knew what was going on. I had to talk to someone about it, it was such a stressful and emotional time for me. Well, my so called "best" friend, decided she couldn't take it anymore and she called my husband at work, and his wife at work and told them everything. My world fell apart, completely. Needless to say my husband flipped. It has been hell for the last 10 months. We tried counseling and it was a joke. I have spent many nights up being berated and yelled at and not allowed to sleep because of his anger. This person that I had the affair with was my sons baseball coach. We had known each other's families for over 8 years. They have 2 kids. Neither one of us was happy and he was in the same boat I was. I already know that it was all wrong and I've dealt with and am still dealing with the moral aspect of it all. My husband tells me I am evil. He has taken away my self esteem and he makes me pay for it on a daily basis. It is awful. I haven't spoken to Mike (the other guy) since last November when this all came out. I am trying to find the strength to divorce my husband because I see no end in sight to all of this. He will NEVER get over it. The doc put him on prozac becuase of his temper and mood swings and he quit taking it. He tells me I'm the one who should be drugged. Needless to say, all of my bladder problems started during all of this ordeal. Whenever we have a fight, I have a flare. My health went to **** this last 10months and emotionally I'm a wreck. My kids are aware there are problems, but not exaclty what they are. My daughter is only 11 and has told me to divorce him becuase of how mean he is to me. He was a jerk to me before the affair, and he is a bigger jerk now. I lost a lot of friends in our community because of this, my ex-best friend told EVERYONE in our small town about what happened. So, not only do I get it at home, I'm known as the town slut as well. It's crazy. My kids would stay with me in a heartbeat if we got divorced, that I know. They've witnessed by husbands temper and treatment of them for too long to want to stay with him. So, in a nutshell, right now I'm between a rock and a hard place. He won't leave me alone anymore and I don't know what to do anymore. Nothing I do pleases him, the "I'm sorrys" are never enough. He picks at everything I do and say. I need to find a way to deal with it all because it is wrecking my health. His own sister says he is crazy and should have been on meds long ago. My sister hates his guts and has since we got together. It's so hard to end 18 years of something. I don't know what to do. Sorry to dump all this, but thought some advice from the outside might help.

[SandyRN]

I'm going to send you a pm. I'm SO sorry you have been through so much. I'm going to go write you right now. Hang in there.

Sandy

[SandyRN]

oops, well, I went to start to pm you or send you an email (it goes through the message board and we cant see your address unless you email us back from the same address. ) but you dont have private messages or email allowed on your account.

At any rate, pease email me, or pm me. I do want to talk to you, and some of the things I want to say I dont want to post publicly (sp?) because they are personal to me.

[Zino]

you can email me at suezinohio@yahoo.com
my husband doesn't have access to that email

[SandyRN]

One thing I want to say to you sweetie is that the longer your kids are exposed to your husband's mouth, and temper, the worse it is. The boys will see this as how women are supposed to be treated, and your daughter will believe women are allowed to be treated this way.

There is no excuse for the way he talks to you or your children, no matter what you've done.

When you said you "are not allowed" to sleep some nights because of his rants, I was appaulled (no, I cant spell).....Something has to be done, in a hurry before you get any sicker, and before your children are exposed to much more of this.

Again, please write me or pm me, whatever you'd like to do.......what I have to say might help you....

[cass2376]

Hi sue,
My goodness, you were not lying, you did have a lot more you were dealing with, I'm so sorry to hear your stressed out, and having to deal w/ sickness to boot!! I read your story today and now can see why your flareing. Your body can't take all the stress you are caring around!! ( oh, ahead of time let me tell you I can't spell worth beans!! :loco: ) Anyway, I just wanted to say hang in there, and you have been given great advice so far. Its true what she said about your kids being effected by what they see. You know I could not help but get upset at what your "best" or should I say X-best friend and others in the town have done and said about you. O.K. well yah, you made a mistake and had an affair, even you acknowlaged that and said you are dealing w/ your feelings about what you did in your own mind w/out having to hear it from others. That goes to show your are remorsefull and are trying to heal from this.
Now what really gets me mad is how people are SO quick to point the finger and judge others!! Lets face it, we ALL make mistakes everday!!, yeah, some are "smaller", or "bigger" in our eyes, but they are still mistakes and we still feel bad when we make them so why don't these people stop and think about their mistakes they have made throughout their lives and realize that who are we to judge, in my mind I think the only one who can judge is The Lord!! Even He forgives and forgets so why can't they see this. It reminds me of a story in the bible, (PLEASE just hear me out ), Its about a woman who has made bad choices and has been "sleeping around." When all these townspeople saw her walking around town they all thought (with holeyer than thou aditudes), we should punish her for being the way she is. They all gathered around her and started to shout"you sinner", and "look what you did, you w****" and called her many hurtfull names. Then they decided among themselves to take the law into there own hands and stone her to death. Jesus was walking past them and saw this all. He approached them and saw what was going on. He then told all the ones who were judging this women "He who is without sin in his life, cast the first stone" They all looked at each other, then looked into there own hearts and lives and realized they all had sinned at some time or another and threw there rocks down and walked away, the lady then repented of her sins, gave her heart to the Lord and changed her life style from that day on. What I'm trying to say is NO one should point his or her fingers at you and judge cause they all do bad things too and would they feel good if they were in your shoes. We all make mistakes, some no one ever finds out about but we know it deep inside. Yours just happened to come out in public unfortunatly. I am so sorry for the way they treat you, its not fair!!!! I'm sure you have enough guilt to deal with without them, cause we are always more hard on ourselves!! If you have apologized already to your husband then he should exept it and move on, whether its with your marriage still together or not. Its not fair to be reminded daily of our mistakes.
I am a christian and belive that when I have sinned I ask The Lord with a sincere heart to forgive me, and He will. When the Lord forgives us for our mistakes, He does and then he forgets about it, it's erased, so to speak. I know that sometimes I look back at past things I did when I was young and feel regreatful but then I have to remind myself that I asked for forgiveness and it was forgiven so I don't have to feel bad anymore, "He forgave me " You know what I mean?
I hope I have made some sense to you, and you don't get offended by my giving the examples I have given. I just feel bad that you are reminded of something you did a while back, and are truley sorry for, everday. I will pray for you and your kids. I will even pray for your husband. You know, so he will see what he has done wrong too, in "rubbing" it in your face everday and being the way he has been. I'm sure you realize he is just hurt and does not obvously know how to deal with his pain so he inflicks it on you, which it is not right. When he deals with it and heals in his heart too he will then take your apology and accept it once and for all. Unfortunatly, he is taking out his anger and hurts on you and thats where he is wrong, to bad someone, like his friends or family could not see this and help him to realize it so he could change and learn to forgive and then the healing process can happen for the whole family.
Well, look at me here, yapping like there is no tommarow. I'm sorry, but I was worried about you and wanted to let you know, I'm thinking about you and praying for you. Don't let those other people get to you (easier said then done right? :) ), really, your going to be O.K. If you need anything, just PM me or e-mail me at macias2376@charter.net
Take care and God Bless, Cassandra :angel:

[Zino]

Thank you all for your words. It has truly helped.

[Lisa1129]

I understand what you are going through. I learned the hard way that Cranberry Juice DOES NOT help. After having 4 kids and never being able to drink because I was either pregnant or nursing. Now I can't have wine because of IC. Stress is my BIG triger. I lived on Uristat for a year. I thought my skin was going to turn orange. Then my urologist said if you take it to long it doesn't work. It was actually my gyn who thought I had IC, I never heard of it before. She knew I had been to 2 urologists and recommended a different DR. So far he is helping and very familiar with IC.
Hope you can find a dr you like.

[icsonja]

Are you hanging in there sue? I havent forgotten to email you back, I am having a little family crisis of my own and it is taking my brain with it.Mine is with a adult son with substance abuse troubles. It is breaking my heart. So don't feel alone, I truely need you as much if not more than you need me for support.
Hug your kids hold them tight and well, set your priorites and boundaries and if you believe pray alot. Hoping for a brighter tommorrow for us all.
Sonja

[IC SARAH-CPP]

I dont agree that you need to see a only a uro. I belong to Kaiser and have seen nothing but worthless uros. I got my diagnosis from my ob/gyn and she handles all my care now. Kaiser tends to push you off to other people alot. I hated it. I went 4 years with no diagnosis and thought I was crazy. I even had surgery and while I was laying in recovery, the doc came in and told my hubby the problem was all " emotional" !! I could have killed him.
The most important thing I can tell you is to stick with it and not give up. You sound like you have IC to me, so please at least get a cysto w/hydro or a postassium test. Good Luck
Sarah

[IC SARAH-CPP]

Okay, sorry I didnt see the rest of the pages before I posted my answer, a blond moment!! |
Okay hun what you need to do it to get snotty and make this your number one "issue" for a little while. What the gyn told you is not okay. You need a referral to a urologist who will do a cysto, and then hopefully a cysto w/hydro, so you can get a diagnosis. They put me through the same thing at Kaiser and things only got better when I called there almost everyday and just made appt after appt with any doc I could. I would go in and be armed with all my info and if they didnt help, I made another appt with another doc. I finally found my ob/gyn doc, who is my god, and she diagnosed me in about 1/2 a second! She said I had "every symptom in the book" and after that my care was much better. she has advocated for me so many times, it is great.
Kaiser has some REALLY bad docs and some really good docs. The good thing is that there are LOTS of them, so just keep trying. Finding out what was wrong with me became my full time job for a couple months. It sucked but I NEEDED to know what was wrong, I was miserable.
Also, STRESS and ALCOHOL are probably the TWO worst things for my bladder. Throw some coffee in there and whoa!!
Hang in there
Love Sarah

[icsonja]

:bow: :bow: Amen to the prvious post, YOU MUST be your own best advocate and yes IC was for afulltime job, finding good care and doing the work it takes to help yourself. Yes it is a job, and it is hard and sometimes disappionting, but it is ever so worth it, to get your life back. :love:
Hang in and hang on!
Sonja
PS check out my post about letters it is under great debates, what causes IC and my thread is writing letter about IC need input. Please help if you can. Thank you all.

[heybrej]

Hi Sue,

I just wanted to add my support to your growing list. Where you are sounds so very familair to so many of us. I too went through the painful process of thinking I had UTIs even when 75% of the time the cultures would come out negative (just to make it extra comfusing...). It sounds like you do have IC, and no you arent crazy, but it's tends to make you feel that way sometimes. And yes, stress can be a HUGE factor in our pain- I know it is for me. The roller coaster of emotions you must be going through wtih your marriage are most certainly causing your bladder to feel worse- good news, stress can go away. I know it must be hard for you right now, but there will be a time in your life where you are calm, relaxed and happy. Have faith in that. IC is a very difficult and irritating disease- mentally and physically, but SO MANY of us here are thriving in our day to day lives. It takes time, but I know that you will get through this. Everyone here is so kind, and honestly, this site and these people kept me going through my most difficult times. When I was in terrible pain and irritation (chills, shaking, sweating, depressed, burning urethra, cramping bladder.....all of it), I found it so very soothing to just get on this site and read. I swear that it helped my mind relax, and it also calmed my physical symptoms. Having support does wonders for the human body. You have support now, because you have us!!

Much love, and please, let us know how things are going!! :grouphug:

-Breanna