Just have to say this

[dwdwdw]

I am sorry i started yet another threat feel free to lock it but i just have to say a few things.
I do not want to cause a ruckus so I am not going to keep posting here if thats all i do.
I just want to say that i feel that in no way have I been rude or acted inappropriate.
Yes I said I have very severe symptoms, to justify why i was hospitalized. I have never said mine are worse then anyone elses, not once.
I havent "belittled your angels" in anyway. I have found many great contacts here, people who have helped me in a great many ways, who i keep in daily contact with. Those are my angels.
If a few people get so upset at my posts i dont see why they cant just refrain from replying.
I still do not see what I have done wrong.
I would like to give traceann a big THANK YOU for her last long very constructive post in the other thread. It made me understand how you feel, and I am sorry you feel confused I guess there are quite a few "loose ends" if you would, and I am sorry for that but its how my story is.
I understand that but not the angry responses I got.

Very kind of you to take your time to point it out though it made it a little more clear for me. I apologize for any misunderstandings.

Also yes i am in Europe and it works a little differently here, not alot.
Theres nothing wrong with the competence levels here, some of the best doctors in the world operate here, BUT however there is probably ALOT more beurocracy and paper work which is why its been such a slow moving process.
I have filed a complaint against the doctor who laughed and shook his head at me saying IC two years ago.
I am also preparing a law suit against him and the hospital, with the help of my mom's cousin who works as a judge in the European supreme court.
Two years of pain and suffering and malepractice.
I dont care about the money I just want to get better. I do think its good if I can get some medial attention on our situation over here too, and that might do just that.

I feel for ALL of you who have this terrible disease.
No one, NO ONE of us would like to be here and post daily.
We wish we didnt even know what IC was like the rest of the world.
But we do know what it is, and it has changed all of our lives.
It has only interupted them though, we have to keep thinking that.
Things will get better.
For all of us, eventually.
We just have to find what works for us.
I am so glad elmiron has given some people their lives back.
As I said, its different here and its not approved yet so its not that simple.

The doctors are the ones who are talking about the cystectomy and I am just going along with it.
I have seen many many urologists and you guys have too.
You all have been where I am, where you are just FED UP and cant take it.

I am currently still on antidepressants and antihistamines + painkillers.

If the doctors do say a cystectomy can benefit me and say i have very good ods of recovery then I amjust saying I am willing to take it.
They have (as i said) a specialist there who constructs a new bladder, so you can void through your urethera as "normal" so i wont even have to cath myself.
I am not "thrilled" about having this done to me but when I look at going on like this fighting and fighting it doesnt seem so bad. The ods are in my favour.
I am not stupid I know its going to be TOUGH and its going to be a very long a painful recovery.
I have read up about it and talked with specialists.
I do not have a time for the operation yet, nor do i have a confirmation.

So its not like its getting done tomorrow.
Now I am like the rest of you, just trying to hang in there counting down the days til i get some relief finally.

Again, I am very sorry people always start arguing in my threads it hurts me and makes me feel like a burden even more then in "real life".
If you feel that way I will not come here anymore, like the moderator said "dont come here asking for advice" and belittle her angels..
If you feel that way about me, then I will refrain from posting anymore threads since I just get slagged down.
I am sorry and I feel for all of you who have to deal with what I am.
I am sorry but things will get better eventually.

Also again thank you for all the pm's, there are so many great people here

Moderators feel free to lock this again if you feel a need to, I just wanted to post this, I will not bother you anymore after this.
Thank you for everything and sorry for any inconvenience i have caused.

[dwdwdw]

Sorry i do have one question for you.
I know we all feel like we have to go ALL the time..but how long can you guys "force" yourself to hold it on average? If you REALLY try.
I am just interested.
Also can the outer genitalia get red and "raw", I have had that on and of on the glands of the penis since day one, coming and going, its basically just red and inflammed. I know I read here about peoples urethera being sore and raw but actual skin redness I mean, I saw people mentioning it as well when i searched around.
Thank you guys

[emilyrose197377]

DWDW , You have not said anything wrong . I see nothing wrong with your thread . I hope you continue to post on here . I am looking forward to your posts . It's your decision on what treatments are best for your situation . No one has the right to ask to stop coming here because they don't agree with your decision . it's your body and your decision not theirs .

[~*~Christine~*~]

Hi, I'm not exactly sure what was going on in that thread, but I just wanted to say that you shouldn't sue the hospital, because that remove money badly needed for supplies, and other needs.
I'm not trying to get on your back, I'm just against suing hospitals and schools.

And to answer your question, I don't have any rawness on my genital area, or in my urethra.
In terms of holding it, it really depends on how bad the flare is, so it varies
I tried holding it in a few times and can't last without going pee longer than 1 hour and 30 minutes

[vm]

I read through the other thread and must have missed something.... I wish you luck, dwdwdw, with figuring out which treatments will be most helpful for you.

[Bianchi]

Hi, I am curious, have you ever tried elmiron? It seems to have helped a lot of people on this board. I myself cannot take it because of stomach problems. Apparently it takes a while to work, but then it is mostly successful.
Bianchi

[~*~Christine~*~]

Okay, I read through several pages of the closed thread and can see why people were getting frustrated with you. The consistent "me me me me me" posts were getting on peoples nerves. I don't think it was necessary to remind everyone of how it is affecting your life, in every single post, whenever someone tries to provide you with suggestions and such ( )
If you want people to support you than you should support others in return, it's not that hard. You don't need to live with this disease for a long time to say "I'm sorry you're in so much pain, I hope you get better soon", or something along those lines. Just telling people that you care, every now and than, is all it takes to make someone feel good about themselves and makes getting through the day a bit easier. How bad you’re feeling does not enable you to have sympathy, since I’m sure many of us are suffering more, and longer, than you and that has not stopped us from supporting others with their struggles.
Just be considerate of other peoples pain, that’s all we ask

[ICNDonna]

First of all, I was hospitalized nine days after my first hydrodistention. That, however, was thirty years ago when people were hospitalized overnight before a surgical procedure even if it was scheduled for the afternoon. I much prefer the way they do it now --- I go to the hospital two hours before my scheduled time and come home the following morning.

When I am in a flare, I can go as often as every ten or twenty minutes --- and waiting just makes the pain worse. I have read that it's not good to try to "hold it" if you are in pain. We call it bladder retraining and it sometimes helps, but shouldn't be tried during painful times.

I usually feel better within a few days after a hydrodistention, but some here find it can take up to six or eight weeks so you basically may still be in the recovery period. Hopefully, you'll get some relief after you are healed from the hydrodistention.

You are welcome to post here as long as you refrain from posting hurtful messages. All of us here have pain, at least part of the time, and most of us have to follow our IC diets closely to function. And some need to take pain medications to be able to get out of bed.

Donna

[traceann]

I am glad I could be of some help, in explaining I think you percieved as the "anger" etc. I also though, do not believe anyone asked you to stop posting, Sarojini just pointed out some Message Boards that might prove more helpful to you with regards to the "ostomy" situation you will be undergoing. Also, people don't like to hear someone is going to opt for a removal or that doctors are condoning such a drastic measure, when there are other things to be tried, we try very hard to keep all of our body parts and feel it is a LAST resort after all else has been tried.

From all I have dug up, nowhere have I found that Elmiron is not approved in Europe, is it just not approved in certain countries, like Sweden? I am currently looking into it, is it possible it has another "name" per say?

I also don't believe Sarojini was flat-out telling you to just "not come here asking for advice" Please take it in the proper context, it was a statement of not to ask for advice when it appears that you dismiss it. We are happy to support, but when asked for the same thing over and over and all are giving the same advice over and over, you have to see how it can look like one is not either paying attention to what was written, or just not willing to try the remedies given from others experiences.

Christine is very right, most can only give for so long until they are tapped out, and it comes to the point of why bother. And I don't think that is result you are looking for. We are all about give and take. It's frustration pure and simple, when trying to help someone and every reply is about them again, going over the same thing that we know and have experienced ourselves. It can feel like we are answering the same question over and over only rephrased each time. It's all about, "hey I understand what you are dealing with, I have been there or am there, this is what I have tried, what do you do for x, y, or z?" That's kind of attitude I think would get you further than anything else.

Again, I am not saying for you to not post or ask questions. Most of us come to a point after a month or so when we become part of the "community", it's again, give and take. We somehow just "integrate" into the swing, ask our questions, help those who are new with what we have dealt with, understand those who are feeling things they are new to dealing with because we have been there or are there currently. From my standpoint, I don't see where you have integrated. Hop around the boards as I have said before, take mini-break from bladder thoughts and go to the off-topic boards. You are more than your bladder! And sometimes reaching out and helping others reminds you are a more than the sum of your parts. I believe that is what everyone also is trying to point out. You need to contribute -- for those that are here for the first time and for your own good. I have told you before you have more to offer than you realize. On the new Hobbies board, I think I can speak for all in saying when we are there, we are just us - the "old" versions, the ones without IC or being defined by our IC, it's great.

It's very hard to explain I am finding. It's like having a friend that all you ever hear is about their problems, how sick/miserable they are (be it health, relationship problems etc.) etc, when you yourself are in need of some hand-holding and shoulder-leaning, but you never get a chance to let them know, as they are too wrapped up in their problems to even notice your pain. You'd get frustrated wouldn't you? Eventually you'd stop hanging around with that person, wouldn't you? It's all you giving, wearing you down even more than you already are -- and you are getting none in return. It's also like the friend who's in an unhealthy relationship, you tell them to get out all the time, but they seem to listen for a minute, and then it's back to the problems they are dealing with. You want to say, why do you keep asking me what to do, when I have given you my opinion a million times and yet you stay in that situation, it gets to the point where you give up....

Take care.

[traceann]

Oh, forgot, I have learned that for me to hold it when I have to go is worse on me than anything else. Even if it means I was just in the bathroom, sometimes going in and just letting the pelvic floor muscles relax can be helpful. On the flip side, I have also learned to not try to go when I don't feel the urge, that can bring on spasms for me, go figure....

[ICNDonna]

Another hint --- never strain to urinate or for a bowel movement --- that single thing can throw a bladder into spasms for hours and hours.

Donna

[~*~Christine~*~]

That was a great post Tracey

[tigger_gal]

I know we all feel like we have to go ALL the time..but how long can you guys "force" yourself to hold it on average? If you REALLY try.

I cannot hold it.. if I am forced to (where there is no where to stop and go) I can make it maybe 10 mins and then I am in massive pain...

[SandyRN]

Christine, your post was teriffic.........guess thats all I'll say.

[massagedoula]

The Two Wolves
One evening an old Cherokee told his grandson about a battle that goes on inside people. He said, "My son, the battle is between two 'wolves' inside us all. One is Negative. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego. The other is Positive. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith."
The grandson thought about it for a minute and then asked his grandfather, "Which wolf wins?"
The old Cherokee simply replied, "The one you feed."