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  • stacyY
    replied
    WOW! YOU sound like me,lol.. no kidding. I hate when you go to a doctor they dont examin you but tell you whats wrong. When i was 27, I was told i have Andomyosis, a differant form of endo-means its there but you cant see it. I was told if i didnt have a hyserectomy, i would just end up being in pain all the time and being on pain pills.this was adifferant doc when i was married and in differant state. I had no kids nor do i now. SO i was freeking out.
    Then i contacted my orignal doc he said no dont have a hysterctomy. Ten they pumped me full of homones, gained 40 pounds sstill cant get them off me. I also have they colonscopy, god didnt the prep suck, was worse then the acculy thing. also for m e nothing found. Then I saw the uro. before he examined me he also said you have IC, I never even heard it. No doctor ever mentioned it. All though my ob/gyn though it was more my bladder then endo.
    Which for me The 2nd laposcraopy, both showed no endo, yet they feel its there and treat me for it. acculy the 2nd one she said no you dont have it. then this past november a goodyear and 3 months after the laop. she says to me well i think you have Endo and i think i just missed it when i did the laop. I really wanted to choke her. I yelled at her. You said no i didnt have it thats why u sent me to the other docs.
    And the uro i have no she say to me last week, well i really dont know what to do for you. Your not responding to the treatments. I am haveing the cycto/hydro done april 2nd hopeing that she will see somthing and be able to do better from there. if not i have to find a new uro. Its such a pain. My insurance is threw the state. so its just like medicaid. It totaly sucks.
    Its really amazing to me. So many of us here have the same story. the same lack of treatment. The same lack of education the doctors seem not to have. Its really annoying. We should be able to have a standered amount of care. And not have to go to the point where we need out bladders removed.
    take care, good luck
    stact

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  • waterflow
    replied
    Mayray, I begged my uro in the first year to take out the bladder too. He said no each time. He said I would be worse off and I thought he was doing that just to be mean but then I had hardly tried anything. Which I didn't know.

    Stacy, the first doc told me I had endometerious too and the only thing for it was a hysto. Of course she told me all of this without any tests being done. I went there thinking I had ovarian cancer. Had to wait two weeks for that test to come back (had to call them in the end) and I cried for those two weeks too thinking no kids. Don't have any and really didn't think I would but I was still young enough for maybe. I had an ultrasound done and when I went back she said (i was having heavy bleeding with my periods and the timing of them was all wrong) I had the early stage of endeometerious but not bad enough for her to do anything about it. Pap test was fine. I kept telling her something was wrong. So I spent almost 1 year argueing with her. Having pee tests after pee tests and I finally told her enough. I wanted to see a gyno. She wanted me to have kidney exray and I wouldn't do it. NO more tests until I see someone else. She hated me after I told her no and I demanded to see a gyno. Well, after waiting 3 months he told me nothing wrong. I just had small cycts on ovary but gave me birth control for my period and told me I do not have any endometerous. Well, he told me he couldn't help with the pee problem and to go back to my GP. Had enough of them so I picked another gyno from the phone book, got in the next day (which I could have done the same thing 3 months ago if they had called him), I told him some of my systems, tests and he stopped me. He hadn't even done anything either and told me it was my bladder and to see the Uro. I have gone to another Uro specialists and he really wasn't much help. Long traveling for nothing really. I have my doubts my Uro will take the bladder out. I will discuss it with him and see what he says. I really think some of it is just being tired of feeling like I'm fighting my bladder for life. Sounds crazy huh? Oh, went to gastro too and had colonoscopy which was torture but nothing found. I don't know which is worse. Having a test done with nothing showing or having the test done with something showing. Nothing can be fixed.
    Thanks everyone for responding. I will give it some more thought before making a decision if uro says yes.

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  • jen74
    replied
    Hi there.
    I feel your frustration. I dont blame you for wanting your bladder out. But I agree with the others and would get a few opinions and make sure you checked out all avenues first. Then if all else fails, I would look into it. I just talked to a friend today and was telling her about my IC. I brought up bladder removal and she told me her mom had her bladder removed due to cancer. She has a urostomy, with a bag. She said her mom is getting along very well and even has a full time job and is doing well.
    I would only do this if all else failed though. Get a few more opinions first. But whatever you decide, I back you up. Only you know what is best for you.
    Jen

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  • tigger_gal
    replied
    I always had the gotta gos right now as a kid, but things really kicked in when I was 23 after the birth of my daughter.

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  • stacyY
    replied
    HI Dear;
    Wow I know how you feel, I have had my pains since i was about 22, and im 33 now. And every year it seem sto get worse. I can compleaatly understand how your feeling.
    I am wondering though if you have seen other urologist? or tried to get into some other doctors to make sure you donthave something else going on besides just the IC?
    For me, I was told for 10 years, I just had Endometriosis. And i staied with the same doctor, I trused whet he was doing was right nad he was very nice. But finnaly i said i am not getting better, I am getting worse.
    I switched doctores, I am so glad I did. Iwas sent to 2 differant trypes of doctors. A gastor, and an uro. The gastro didnt find anything which was good. But then the Uro, found the IC.
    Then again I had to change URos os of the Insirance problems. And after a year with her. And her watching me over many months, now she thinks i have Pelvic Floor Dysfunction. Which i had a few people from here mention it. but, i never thought it was somthing i had till now. Now it makes more since to me. So now i have the IC and the Pelvic Floor Dysfunction. along with a few other issues.
    Im sure since you have had this for along time, you might have looked at other conditins. But if you I strongly recomend going to a few other doctors before decideing to remove your bladder. At least as just a consult. Since it is so perminate, It be better to have a few doctors say to you yes that is your only option left. OR maybe they could have some good hope for you and new treatments. At least think of getting the other opinions.
    Belive me i know how bad the pains are, I cant even walk a mile on my treadmil without being in so much pain for 3 days. I Am so limmited to things i can do. Being single and taking care of my own self, medicaly and emotionaly, its really draining. I am glad to be able to come to this site and get differt view or think of things i never would have thought of before to try for my conditions. I hope some of us can give you some answers and some suport. You deffinatly need it. Its hard when your family isnt beind you 100%.
    I can relate. My family is small i just talk with my mom and my sister. But they dont give me any suport at all unless i need to be taken for a surgery or go to the emergancy room. Other then that i am alone on daily basis. Now boyfriend or husband.no kids. So I deffinatly know how you feel. I call my mom when i have pains and she just say to me now i just dont know what to say or do for you any more. So she pretty much never calls me any more.
    SO haveing this site is the only help for so many for all of us. So when you ned the suport plase come to here.So many of us are here daily. And we all need the suport.
    PLease take good care. and think about seeing other doctors before asking your regular doctor about removel. It might surprise you.GOOD LUCK!!! and take good care of you!!
    stacy

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  • mayray
    replied
    I understand

    I understand how you feel water. I suffered for 8 years. the docs did not even want to discuss bladder removal but I can remember being in such pain and begging them to consider it. I have been in remission for 7 years due to elavil and have found out that bladder is not a slam dunk and it is so final tho I understand why people do it. I pray every day that everyone can on into remission like I did and get your life back.

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  • patricia1
    replied
    I do know how you feel. Mine started exactly 6 weeks after my sons birth in 1996. I was 25 at the time.

    Bladder removal is a hard decision to choose. Feeling that there is nothing left to try. No matter what you do you always have friends here that will stand behind your choice no matter what (((((HUGS))))) to you

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  • petrie86
    replied
    you really want to take your bladder out?? that freeks my mind out! i get chills thinking about it. Although when I'm in pain I say it all the time lol. I feel your pain. Hope you feel better, and the convo with your dr goes well.

    (((hugs)))

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  • waterflow
    started a topic 9 years

    9 years

    Went through a box and found 2 hospital bands with dates on them. March 18, 1998 is when the IC started. I am worse off now then I was then and still having to argue with family about it. Was only 33 yers old too. For some reason I kept thinking I was older. Will ask doc about taking the bladder out. Really tired of doing all the pills and instills.
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