No announcement yet.

Left a tearful message for my urogyn

  • Filter
  • Time
  • Show
Clear All
new posts

  • #31
    I loved the egg throwing story too. It's hard just to get it off of dishes. I can only imagine off of counters and cupboards. Glad you still have your cheap dishes intack.


    • #32
      Annie, I loved your story too!! I used to throw remote controls because they were always handy. I finally stopped doing that when I realized they don't always work too well after being smashed into the wall!! Not to mention the nasty marks I was always repainting on my walls! I have a much better reign on my temper now! Now that I think about it, I really can't remember the last time I threw anything or slung food around my kitchen! LOL

      Thanks for the laugh!
      *IC-- Summer 2004; PFD--October 2005
      *Fibro--Fall 2000; CFS-- Fall 2000
      *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

      Total Abdominal Hysterectomy--adenomyosis--9\08

      04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.


      • #33
        Lori, this disease does terrible things to our minds. I didn't have adequate pain control, and indeed didn't even know what was wrong yet, and I was literally losing my mind. I was actually previously diagnosed as being bipolar because of it.

        Guess who doesn't have bipolar symptoms anymore? Yep. Me. I do have my flying rages still but what I have realized is that it's usually when I'm flaring and I just can't take one more single thing. Unfortunately it usually comes out at my family and I have a real "talent" with words, I can cut through to the heart and I'm not proud of that.

        So yes, absolutely I can understand what you are going through, what you went through, and you WILL be okay. Thank God you were heard and you will be getting help. It's a miracle and I know we are all grateful for it.

        On a side note, one reason I was thinking your doc might not have wanted to prescribe Ultram would be because it has kidney issues. It has a warning in the literature, or it did a couple years ago, about it affecting either the kidneys or the heart. So perhaps that was the reasoning, because it sure it better than hard narcotics. Also, some docs consider it a narcotic because it has addictive features, even though it's not classified that way.

        I think you should relax and let your mind heal from this trauma and pamper yourself. That always helps me. Know how encouraged I am for you and am proud of you for standing up for yourself.



        • #34


          I hear you on all of this. In fact I lost it last night on the phone with my doctor in Boston. I am still MAD at him for the way he treated me! He is not the only doctor I have lost it with but it hurts the most because I have seen him for 8 years and have been nothing but loyal to him. I've done whatever he has asked me to and I have never done anything off track so to speak. He treats me like just another bladder..........he doesn't care about me as a person.

          On the other hand, there is hope Lori! I found a doctor that is so compassionate and professional. He has me call him Mark. And we talk once every few weeks on the phone an through email. He's worth every penny I have not even spent on him yet. Why can't they all be so kind! He tries to fix his mistakes and he never leaves his patients in the dark. I've talked to several of them. I keep calling him Doctor but he feels that it is old fashioned. The doc in Boston is the exact opposite!

          I too have severe pain but mine is 24/7. Narcotics make me MUCH WORSE!

          Not many people believe me, even on here, but it's true. So I really honestly can relate to all of the things you have said here.

          I am sorry I can't type more but it hurts to much. I PM'ed you!

          Lori, you are always in my heart! I want this relief for you and a happy, healthy life ahead.

          Love and HUGS!

          Last edited by Kara29; 01-25-2007, 08:28 AM.
          Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

          "One hour at a time, this was NOT my American Dream but it has to work out somehow."

          I also have some journals of my journeys, past and some present at:

          Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.


          • #35
            Oh, boy, I'm in grateful tears right now. I don't deserve this kind of support! I really love you guys.

            And ICNDonna, thanks for gently reminding me it mght not be a wise idea to send the vent letter - you were absolutely right! My neph called me today and he was so sweet. I just don't know what got into me, I was horrible. I'm glad I didn't send that. I've just been kind of crazy for a week and a half. Then I had my major meltdown and now I'm normal, sort of. Or what passes for normal in me.

            Thank you all so much. I hope that I can help you guys some day when you need me.

            Oh, my neph also talked to my urogyn about giving me some Ultram so I can sleep at night. So he prescribed me some! I can handle the pain I have off and on during the day just fine, but the whole never sleeping part was the worst part of this disease for me. So I am glad for the Ultram, it really helps make my life a little more bearable.

            The bad part of the conversation, though, was that he was worried about my kidneys still. I thought it was good my kidneys were recovering, but he said that he's still worried, because the longer the renal failure goes on, the more likely scar tissue will form, and then it will turn into permanent damage if that happens. Bummer. So now I'm kind of a little worried again, but I'm trying to be hopeful and not think about it too much. I keep telling myself, even if I have to go on dialysis, I'll still have a better quality of life than I did with the IC before I was given pain meds!

            This weekend is going to be kind of crazy, we have a bunch of things we kind of have to go to (most of them not really very fun) but I'll get through it. Sigh. I just won't be on-line until maybe Monday evening or something.



            • #36
              I'm so glad you checked in, Lori, as I have been thinking of you all day. Thank goodness you have ultram now! Sleep deprivation makes everything so much more difficult. Getting some good, uninterrupted sleep and rest goes a long way in helping us to deal with difficulties. Even daytime pain, while certainly not easy to deal with, is more tolerable after a decent night's sleep.

              I shall continue to keep you in my prayers! I certainly hope your kidney recovery continues smoothly and that scar tissue does not form or cause any further complications!

              Please update us when you can. In the meantime, know that you are in our hearts, our thoughts and prayers.

              Ulcerative Colitis and IBS
              Pelvic Floor Dysfunction

              Retirement is great! Work is highly overrated!!!
              ---My dear hubby

              Never go to a doctor whose office plants are dead.


              • #37
                Bernie Siegel MD, the author of many books on surviving cancer, once said that he doesn't want patients to be "patient" with their medical care. In fact, he said that he thought that that delayed their care unnecessarily. He wants them to be FIRM but not rude, LOUD and ASSERTIVE as they communicate their needs. He called that being a "respant"... a responsible participant in their medical care.

                Lori... you just proved his point. You got vocal... you stated your needs firmly... and you got the action you needed. Bravo to you girl!!


                Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality.

                Looking for books, magazines & reports on IC? Please visit the ICN Shop at: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

                Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.


                • #38
                  Yeah...I agree with Jill. Good for you, Lori. *Applause...Applause...Applause* This is a good lesson for all of us.

                  Shopping??? Did someone mention shopping? I'll get my hat... ;-)

                  Where I can be found most days.

                  Link to the ICN Patient Handbook:

                  Link to the IC Diet:

                  IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.


                  • #39
                    i found this thread years later and am in tears from what lori and many others here had to go through. i know what its like to have a dr NOT listen to you when sometimes you may in fact know more about the condition yourself than he does.Maybe he missed that part on IC in med school or he doesn't care at all.When I was recently in the hospital last week I had a very rude dr in the hospital that basically said "why are you here,youre just taking up space nothings wrong with you"...when I told him why I was there (recurrent UTIs) i thought at the time.. this is was at the time they all thought i had a simple bladder infection or uti again. i broke down and started crying and going off on him at the same time telling him i was in so much pain and basically not to mess with me.He came back in the next day,and made some rude snide comment again.I told my urologist,who had suggested this dr come to my room and see me and he said the guy had also been rude to him too.To this day,I think about reporting him for bad bedside manner.He said some of the most hurtful things to me and I've went through that enough in my life and not reported it (before I was sick).I've learned now to stand up to dr's and not be miss perfect patient when their treatments arent working for me.I am my own health advocate.A lot of them do not have empathy and don't put themselves in their patients shoes or act like what if it was a family member of their own.Some are just in it for the money,specificially insurance company money..not for the reason the medical profession originally got started which is HEALING.They can be a genius,but if they dont have that empathy or respect for others..common sense for lack of a better word they will have a hard time with their patients.

                    and dont even get me started on being forced to go to a psych ward cuz the cops believed my abusive boyfriend over me,yes, i was having suicidal thoughts but it was because of the man that called the cops on me had been treating me so bad all those months I completely lost it.Sometimes emotional abuse hurts more than physical.I am a survivor of that... and then all of a sudden I am diagnosed with IC after I get over the trauma of that *sigh*.
                    Last edited by flowerangela; 02-12-2011, 02:59 PM. Reason: added more.
                    Newly IC diagnosed as of February 2011.

                    Medications I'm on that seem to work:
                    Zoloft- one once a day

                    Failed Meds:
                    Elmiron-after 4 months,digestive side effects got to be too much
                    DMSO treatments(5-6)

                    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
                    Village Naturals Aches and Pains Peppermint Bath Salts
                    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

                    Significant pain relief so far.

                    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction

                    Add me on facebook Angela Hasic

                    Lord, make me an instrument of your peace;
                    where there is hatred, let me sow love;
                    when there is injury, pardon;
                    where there is doubt, faith;
                    where there is despair, hope;
                    where there is darkness, light;
                    and where there is sadness, joy.
                    Grant that I may not so much seek
                    to be consoled as to console;
                    to be understood, as to understand,
                    to be loved as to love;
                    for it is in giving that we receive,
                    it is in pardoning that we are pardoned,
                    and it is in dying [to ourselves] that we are born to eternal life.


                    • #40
                      There is usually ALWAYS a patient advocate in any hospital, and you should report poor physician, nursing or any other bad behavior to them. They will go to bat for you and will absolutely pursue complaints.

                      Sorry you guys have been through such bad experiences. Kinda makes you scared to go to a hospital again, huh? Which only adds to your stress, which only adds to anxiety, which leads to panic attacks, which can lead to depression and vice versa. You gotta treat those, whether through some therapy or just having a few pills (like xanax) on hand and not even taking them, but just knowing they are there for emergency attacks can help. It is a horrible feeling to have a meltdown, the world is coming to an end, you are dying, you can't control emotions, you want to curl up in a ball in a dark room. Panic attacks can last for days and keep coming at you over and over if untreated. Check into that sweetie.

                      And what was the kidney "failure" attributed to? Glad you are recovering from that. Take care of your mental state, you do not want to have another meltdown and feel like that again. It is a horrible feeling, and can leave you a little afraid about leaving the house, being in social situations, having the phone ring, or have anyone knocking at your door. Talking with a therapist may help, they are afterall 3rd party impartial, and may make some recommendations for you. Hope you stay well, hang in there, and keep the faith. Jill, wife of Bob


                      • #41
                        This thread is mostly old, but I felt compelled to comment. It is important to take care of your mental health. And, don't be ashamed to admit you need help. I mean, when you think about it wouldn't you think it would be concerning if you sat around in pain for years and didn't go crazy lol? Anyways, I have been to a mental hospital because of my IC. I was not at all suicidal. I went voluntarily. It was just too much stress to be in pain for so long, facing difficult treatments. It really helped me a lot.

                        I learned a lot and still go to therapy there, but I don't have to spend the night anymore . (I only stayed overnight for a week) I would say at least, if not more, than half the people there had a serious medical problem. It's hard to deal with this stuff. Everyone needs a break. If you feel like you need help, it may be a good idea to find out if there is a behavioral health center in your community. I first went to a regular hospital and they pretty much just stared at me lol.

                        Anyways, think of any stereotypes you have about treatment for mental health, and throw it out the window! Especially those visions of nurse ratchett. It is a very nurturing and healing environment and you should be treated with the upmost respect. Many people in mental health recovery are just trying to navigate difficult situations and illnesses.

                        Good luck to everyone! Mental health is important. If you truly believe you need help, please seek it and please be firm and adamant about your desire for treatment. I hate to see that anybody would be turned down. And don't turn away because you're not suicidal. The last thing you want is to keep putting it off until you are suicidal or intend to harm yourself! Stay strong IC friends
                        Have had IC symptoms since childhood, but did not seek serious treatment or become diagnosed until I was in college.

                        24 yo F

                        I've had a cystectomy with an Indiana Pouch. It was a success and has helped my symptoms and pain immensely.


                        • #42
                          IC pain

                          IC pain is unbearable. Doctors can be sued for Refusing to treat your pain. It sounds like you need another doctor. When I read your words it really got to me because I've been there also. Don give up but please know there's lots of people on here that understand completely. Take care and good luck.


                          • #43
                            ICLori I am just like you. I am looking into my options of bladder removal. I'm at the point of, "F this S***" I too am in pain daily. If it weren't for my kids, I would have killed myself by now.