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  • #16
    I've been there..

    So sorry to hear youre having difficult time with IC. I have had DMSO treatments are they are never fun. For me it only really hurts when they insert the catheter, after they about 20 min they remove it my bladder is numb and will stay numb for a couple of hours. My Uro is in Houston medical center and he has been very good to me. Once i was in tears because
    of the pain the gave me Norco pain med which help take some pressure off my bladder and then called me later that evening to check on me and also called me some Prosed-DS which worked wonders. Hope this helps. and your're not alone.!!!!






    Originally posted by GlassGirl View Post
    Well it's a very long story - 3 years in the making.

    3 years ago found a lump on breast, had X-ray and mammogram, family Dr. said it was "relatively uniform in shape so it should be ok (supposedly cancerous cells are non-uniform shape) - but they found that my ribs were really thin. Family Dr. told me to take 1100 mg natural source calcium and 1100 mg vitamin D for Osteopsorosis.

    Fast forward 11 months - in the hospital with kidney stones, passed those ones. Three months later I am in the hospital again and find out I have diverticulosis. Fast forward 3 months to July 2, 2010 another trip to the hospital with more kidney stones. From this time on, I have been in CONSTANT pain and almost daily spasms that feel like I'm being stabbed with a knife. At this time family Dr. is giving me SMALL prescriptions for Percocet while I wait to see the urologist. First Uro Dr. is a TOTAL ASSHAT ... he doesn't like, nor have any respect for women (he's a foreigner with a high disregard for women) he tells me that the catscan shows the kidney stones have passed and the "growths" are on the "outside" of the organs. When I asked what that meant he told me to "go back and see the family Dr." HUH ??? what the heck does that mean?

    Family Dr. says he thinks I have more Endometriosis - wait, what??? but I had a hysterectomy in 2001 and only have 1 ovary ... how could I have that again? Ok, so now I see the OBGYN (she has been an angel)she thinks that I have IC - AND - the Endo is back but "won't do anything until I get the uro thing straightened around 'cause she doesn't want to do surgery to remove the last ovary and get into a problem when she goes in" ... so she refers me to a different Uro ... waited another 4 months to see him. Finally see him and he puts me on Elmiron 3 times a day and 50 mg Amitriptine (sp?) at night so I'm not getting up every hour. This is about all this Uro can do for me 'cause he no longer has his practise here and therefore has no hospital privileges.

    Meanwhile the family Dr. cuts me off pain meds and insinuates that the pain is in my head.

    Back to the OBGYN now she refers me to a specialist in Toronto (1 year waiting list) and a new Uro (fresh out of medical school) who is coming to town and is now my current Uro. He WILL NOT prescribe pain meds whatsoever and schedules a cysto. OMG ... I had no idea ... (thank God I "borrowed" a Tylenol 3 from a friend and took it before I went) cysto with no pain meds and then when he gets in there he finds some "growths" so he decides to do numerous biopsies while he is in there - STILL NO PAIN MEDS - and then apparently I was bleeding profusely and all the nurses started scrambling ... then finally the cauterization for the biopsies - I thought I was going to go thru the roof!

    So the biopsies come back non-cancerous, they are scar tissue and inflamation. Now he schedules the Rimso treatments. The first one in December was horrible burning pain while trying to hold it. Then 3 days in bed in total agony. When I told the head nurse about that before the next treatment she said "she has over 1,500 patients on Rimso and NOT ONE HAS EVER COMPLAINED THAT IT CAUSED PAIN". Last Friday was my second treatment and another 3 days in bed in total agony. Now the Uro wants to do 2 more treatments 2 weeks apart.

    I really don't think I can do it ... between the treatments, the pain, the spasms and no pain meds (Tylenol doesn't even touch it) ... I am about ready to

    OOPS ... almost for the recent added diagnosis of "Macro Petuitary Adenoma" - have not started any treatment for this yet.

    Comment


    • #17
      I've been there..

      So sorry to hear youre having difficult time with IC. I have had DMSO treatments and they are never fun. For me it only really hurts when they insert the catheter, after they about 20 min they remove it my bladder is numb and will stay numb for a couple of hours. My Uro is in Houston medical center and he has been very good to me. Once i was in tears because
      of the pain the gave me Norco pain med which help take some pressure off my bladder and then called me later that evening to check on me and also called me some Prosed-DS which worked wonders. Hope this helps. and your're not alone.!!!!






      Originally posted by GlassGirl View Post
      Well it's a very long story - 3 years in the making.

      3 years ago found a lump on breast, had X-ray and mammogram, family Dr. said it was "relatively uniform in shape so it should be ok (supposedly cancerous cells are non-uniform shape) - but they found that my ribs were really thin. Family Dr. told me to take 1100 mg natural source calcium and 1100 mg vitamin D for Osteopsorosis.

      Fast forward 11 months - in the hospital with kidney stones, passed those ones. Three months later I am in the hospital again and find out I have diverticulosis. Fast forward 3 months to July 2, 2010 another trip to the hospital with more kidney stones. From this time on, I have been in CONSTANT pain and almost daily spasms that feel like I'm being stabbed with a knife. At this time family Dr. is giving me SMALL prescriptions for Percocet while I wait to see the urologist. First Uro Dr. is a TOTAL ASSHAT ... he doesn't like, nor have any respect for women (he's a foreigner with a high disregard for women) he tells me that the catscan shows the kidney stones have passed and the "growths" are on the "outside" of the organs. When I asked what that meant he told me to "go back and see the family Dr." HUH ??? what the heck does that mean?

      Family Dr. says he thinks I have more Endometriosis - wait, what??? but I had a hysterectomy in 2001 and only have 1 ovary ... how could I have that again? Ok, so now I see the OBGYN (she has been an angel)she thinks that I have IC - AND - the Endo is back but "won't do anything until I get the uro thing straightened around 'cause she doesn't want to do surgery to remove the last ovary and get into a problem when she goes in" ... so she refers me to a different Uro ... waited another 4 months to see him. Finally see him and he puts me on Elmiron 3 times a day and 50 mg Amitriptine (sp?) at night so I'm not getting up every hour. This is about all this Uro can do for me 'cause he no longer has his practise here and therefore has no hospital privileges.

      Meanwhile the family Dr. cuts me off pain meds and insinuates that the pain is in my head.

      Back to the OBGYN now she refers me to a specialist in Toronto (1 year waiting list) and a new Uro (fresh out of medical school) who is coming to town and is now my current Uro. He WILL NOT prescribe pain meds whatsoever and schedules a cysto. OMG ... I had no idea ... (thank God I "borrowed" a Tylenol 3 from a friend and took it before I went) cysto with no pain meds and then when he gets in there he finds some "growths" so he decides to do numerous biopsies while he is in there - STILL NO PAIN MEDS - and then apparently I was bleeding profusely and all the nurses started scrambling ... then finally the cauterization for the biopsies - I thought I was going to go thru the roof!

      So the biopsies come back non-cancerous, they are scar tissue and inflamation. Now he schedules the Rimso treatments. The first one in December was horrible burning pain while trying to hold it. Then 3 days in bed in total agony. When I told the head nurse about that before the next treatment she said "she has over 1,500 patients on Rimso and NOT ONE HAS EVER COMPLAINED THAT IT CAUSED PAIN". Last Friday was my second treatment and another 3 days in bed in total agony. Now the Uro wants to do 2 more treatments 2 weeks apart.

      I really don't think I can do it ... between the treatments, the pain, the spasms and no pain meds (Tylenol doesn't even touch it) ... I am about ready to

      OOPS ... almost for the recent added diagnosis of "Macro Petuitary Adenoma" - have not started any treatment for this yet.

      Comment

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