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  • See, flares really DO hurt, not our imagination!

    I found this abstract while I was surfing the internet -

    Interstitial cystitis



    11310812 JA

    Pain and depression experienced by women with interstitial cystitis

    Women with interstitial cystitis experienced significantly increased pain levels and depression during a flare than other populations of chronic pain patients.

    2000 Women Health 31;4:67-81

    Rabin, C., O'Leary, A., Neighbors, C., and Whitmore, K.

  • #2
    Is there a website link to this abstract?

    I want to post it on the door before my husband comes home for lunch. I've given him all the literature about I.C., Fibromyalgia, etc., I can find. I printed it out or forwarded it to him on his work computer. I ask him if he's read it and all he says is "Yes". This is the same husband who doubted my pain for 4 years when I was having surgery after surgery for ovarian cysts, endometriosis, etc... He never stayed at the hospital during my surgery (would go back to work...at least the bills got paid) and the nurses would have to call him to come pick me up. It was embarrassing and upsetting. I thought he had 'come to his senses' after my last endo surgery. He had to stay because the hospital was an hour away from work. Lo, and behold, when, I came to, he said "You won't believe what they found inside you that your last gyn left behind...half of your left ovary with 2 huge cysts on it, a remant of your right ovary, that endo stuff everywhere and your bladder was completely attached to the abdominal wall". He was p##((#(! and said we were going to 'take action' (legally) with my prior gyn. He never said he was sorry for all those times he would get mad because I was laying around on my heating pad. He's not said one word about being sorry he doubted me and the pain I was experiencing. We do love each other, but it's getting to be so hard not to be mad at him all the time because of the IC pain and FM, I am in the 'same ocean, slightly different boat' than last time. He got mad at me this morning because I was crying and couldn't get the boys off to school on time. He left without saying "I hope you feel better". Just those few words would have made a big difference in how I'm feeling emotionally. I'm seeing a new pain mgt. doctor who is also a psychiatrist. I didn't think I needed that side of treatment until now. I hope he will agree to go with me. In the meantime, I'll just keep pushing these articles about IC pain in front of him, as he grumbles and looks the other way. I appreciate him for working to pay bills and the fact that I don't have to work. If I had to...it would be a mess. I'd have been fired by now with so many days missed. I used to work as a professional singer, but took a break until I felt better. It doesn't look like I'll be performing again soon. I think the next time I sing will be in heaven....if God lets me in. He's kept his promises, I've not kept mine. Very depressed today....but it's going to get better.

    Thanks for listening.

    I wish you a great day with NO PAIN.....WE ALL NEED A BREAK FROM THIS AWFUL STUFF!!
    Dani


    -Bladder surgery to correct reflux-'68
    -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
    -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
    -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
    -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
    PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
    -DX'd with IBS in 2000
    -Rhabdomyolysis in 2001 (has not returned)
    -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
    -DX'd with TMJ in 2000-wear splint
    -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
    -DX'd with Epilepsy -2000
    -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
    -DX'd with Fibromyalgia (2006)

    Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

    Comment


    • #3
      Lori, I know for some people they don't realize the pain that we go through. I think this is why this site is so wonderful, because when we talk about pain, these people understand and know exactly what we are talking about. Also they tried to help us to get some comfort. My husband tells me I am good about covering up my pain and that is why they don't understand. I am the type just to hid in my bedroom and trying to tough it out. I guess that is a bad thing for me. But my husband and my daughter hears my cry and my pain,and there is no escape for them, even though I hid in my bedroom.

      Lori, I am so so sorry that you have been in so much pain and I hope soon you will find something to give you some comfort. Even through your pain you still help so many people.

      Just sending many hugs, Trishann

      Comment


      • #4
        I agree, I really don't think anyone knows how much pain we live in. My husband up till recently, didn't, now, when I come home from work, he makes me go to bed as he sees how in bad shape I'm in. He even has started to take me to and from work, as its sometimes more than an hour drive.
        My husband doesn't like hospitals either, so lots of times he just drops me off and depending on how long I'm there, he will come and visit me of course, but if its for an out-patient procedure, he will ask how long I will be in, and then he will go and come back!! Oh, well, can't have it all, can I?

        Comment


        • #5
          Here's the link (it's way down on the bottom of a long page)

          Edited to add better link: http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

          Trishann, thank you for your kind words. I hope for healing for everyone here, and painfree days.

          I'm so sorry so many have had problems with their spouses not really understanding this disease. I think that might be one of the things I'm frustrated most by, is that most of my doctors can't understand what I am going through, and my husband tries to understand, but he can't either really.

          This is a tough disease, no doubt about it.

          Blessings,
          Lori

          Comment


          • #6
            Thanks Lori, I would also like to read the whole thing.

            Comment


            • #7
              P.S. Can someone really smart please tell me what on earth the following means? Does it mean if we have a good attitude, most of our pain goes away? Or that the levels of pain are tied more to our moods than to any physical thing? Or...?

              Furthermore, the pain and depression experienced by IC patients may be predicted by cognitive factors. Severity of pain is associated with self-efficacy for coping with pain. Severity of depression is associated with pain, self-efficacy for coping with pain, and self-stigmatization.

              Comment


              • #8
                All I know is the experience of.....

                ...dealing with pain for most of my life has made me a very compassionate person. Even when I'm at the doctor's office, waiting for my instillation, and see an elderly person stuggling, either confused in trying to find the right floor of their doctor's office, or trying to pull open a heavy door, I totally forget my pain for a moment and make sure this precious person is helped in the best way I can. If I see pain in someone's face who's waiting to see the doctor, but their appt. is scheduled for after mine, I ask the desk person to please let them go ahead of me. I'm not bragging that I'm some sort of superwoman sweeping in to help those in need, but I feel it's my duty and my deepest wish to help those in need. Aren't you just dumbfounded to see a 20'ish young man rudely rush past a person to get into the elevator while the elderly person is struggling with their oxygen machine. I wan't to do the "Vulcan" shoulder grip on that hooligan! Anyway, I'm just saying, pain is the great equalizer. Those who've not experienced much physical pain in their lives don't have the capacity to understand. They could study 1,000 textbooks in med. school about the nervous system and the effects of pain on the body and mind, but never really understand. Wouldn't it be something to have these uncompassionate doctors who say "Just get out of your rut and exercise...that will help you and your pain will 'go away'" Yeah...I believe that, uh, huh..you dolt!. My sister-in-law, who's a nurse, told me I needed to go for walks to get my circulation going, then the pain would go away. She does not understand and neither does my husband (it's his sister I was just referring to...his whole family is like that...as I mentioned in a previous post). I think, before a doctor can start practicing (no matter what specialty they're in), they must be inflicted with all sorts of pain. Men should be cathed and inserted with a bad bladder infection.....and no meds for pain or antibiotics for at least 1 week. Just a suggestion. I think most of the doubters would change their minds within....lets say....20 minutes??? Don't you think??? If only they would do this. Speaking of hubbies, I just told mine that I have to get my yearly B.E. (Barrett's Esophagitis) endoscopy this week. I'm overdue and am having trouble swallowing. The main purpose for the test is to check for suspicious tissue (pre-cancerous), so it's not a test just for the fun of it!! My husband asked me why I thought I needed to have it done. I repeated what I just wrote to you and there was no response. Not....I hope it's clear.....or "If I could change my business travel plans, I would take you". NOTHING!!! I'm so sick of his attitude...Yes, he pays all the bills (I can't work anymore and miss my job terribly) and cooks dinner when I just can't get up the strength. If he would only say once in a while "I hope you feel better"....it would make all the difference in the world!! The emotional part of dealing with this pain is so difficult. It is so lonely, but I am so blessed to be able to talk with all the wonderful ladies on this site. For that, I am truly blessed. Oh, my nurse (who is an angel...really), got me worked in to the pain mgt. doctor next Monday (one week earlier), so once my pain is under control, I'm going to look into a job where I can be a patient advocate at the hospital. From what I've seen and heard from my many ER visits, people are lied to, treated like trash, treated like they're liars, etc.. it's sickening. I want to find out how I can help the helpless who come in there with no one at their side. Boy, have I got some true accounts of my local ER and how awful they are to the patients. You wouldn't believe it. Who ever wants to know, just PM me. OH BOY!

                Have a pain free, God blessed day!


                Dani
                Dani


                -Bladder surgery to correct reflux-'68
                -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                -DX'd with IBS in 2000
                -Rhabdomyolysis in 2001 (has not returned)
                -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                -DX'd with TMJ in 2000-wear splint
                -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                -DX'd with Epilepsy -2000
                -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                -DX'd with Fibromyalgia (2006)

                Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                Comment


                • #9
                  Sorry....

                  I've done it again...I write such long posts. Just imagine what it would be like with me in person!!! I don't get to talk to many people, so you ladies are the only ones!

                  One more thing I thought of that would 'help' those quiet hubbies....a T-Shirt that says "I hope you feel better soon". That way he wouldn't have to take the time or thought to say it....but I could respond and say, "Thanks sweetie, it makes me feel better knowing you care". Then he would get in a habit of it?????? Just a thought.
                  Dani


                  -Bladder surgery to correct reflux-'68
                  -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                  -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                  -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                  -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                  PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                  -DX'd with IBS in 2000
                  -Rhabdomyolysis in 2001 (has not returned)
                  -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                  -DX'd with TMJ in 2000-wear splint
                  -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                  -DX'd with Epilepsy -2000
                  -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                  -DX'd with Fibromyalgia (2006)

                  Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                  Comment


                  • #10
                    I don't understand the article either. I think if they truly want to know about what people are going through with IC, they should take their time and listen to people who has it. I read an article awhile back that said some people will have more pain because of their body. Something about their body is more sensitive to pain, I wonder if they ever thought about that. I wish I kept that article.

                    Just like I'm very sensitive to medicine. It seems like everything I take have some major side effects. Others can take these medicine with no problems. When they do articles do they think about that?

                    Some people hormones completely goes out of wack after having surgery, I am one of them. Do they consider about this issue when doing an article.

                    Sometimes we just can't take these things personal, which is hard to do, but they don't know everything what is going on with each individual.

                    That is why we have to stand up for ourselves and just keep trying to do our best and not expecting everyone to understand. We have to remember just because someone can't understand that does not make us wrong.

                    I have to be thankful for those who do and for those who came into my life and shared their wisdom with me.

                    Sending hugs, Trishann

                    Comment


                    • #11
                      "Self efficacy" is a term they are using to describe the set of mental skills you use for coping with pain. If you have a good set of mental pain coping skills in place, you will report less pain -- you'll still report severe pain, just not as bad as someone who doesn't have these same coping skills.

                      Severity of depression is just that... how severe the depression is. This abstract suggests that how depressed a woman gets during painful flares is related to her pain level, her own internal ability to cope with pain, as well as how much "self-stigmatization" she does -- you know, that thing that can happen when you're in a flare where you say, "I'm so stupid, this is all my fault, I must have eaten something bad or done something bad. I can't believe I have this embarrassing, stupid bladder disease..." (You put a stigma on yourself for having IC, essentially)
                      ****
                      Jen

                      *Diagnosed with severe IC in 2004
                      *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
                      *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
                      *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

                      **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                      Comment


                      • #12
                        Hyperalgesia

                        Go to www.wikepedia.com. Search the word 'Hyperalgesia'. It's a brief description about how some people's nervous systems get extra signals from the brain which cause more pain. There was a story on 20/20 or one of those programs about this. One woman they interviewed had once been a ballet dancer. She pulled a muscle in her thigh one day and 6 months later was in a wheelchair. No one believed (except her husband...that's a new one!) she was really experiencing such excruciating pain, because all the doctors could find was the already mended pulled tendon. No pain medication eased her pain effectively. It turned out she had this "Hyperalgesia". She is on nerve/brain medications now (Neurontin, etc.) and is able to walk finally after years of being curled up in a fetal postion on her bed. How awful is that....talking about doctors not listening to patients about their pain....she had the worst case scenario if I've ever seen one!

                        Dani
                        Dani


                        -Bladder surgery to correct reflux-'68
                        -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
                        -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
                        -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
                        -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
                        PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
                        -DX'd with IBS in 2000
                        -Rhabdomyolysis in 2001 (has not returned)
                        -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
                        -DX'd with TMJ in 2000-wear splint
                        -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
                        -DX'd with Epilepsy -2000
                        -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
                        -DX'd with Fibromyalgia (2006)

                        Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

                        Comment


                        • #13
                          Thanks, you guys! Sarojini, that explanation makes a lot of sense. I just still am wondering how pain levels can be predicted by cognitive factors.

                          What I mean is, they can predict in advance, say, before a woman even has IC, what her pain levels will be, solely based on what her psychology is, and without taking into account at all whether she has a mild case of IC, moderate, or end-stage?

                          That's what it seems to be saying, when they say pain can be predicted by cognitive factors.

                          I really feel as if this is kind of blaming the patient for being sick. You know, if we just had better attitudes/coping skills, none of us would need any meds...that sort of thing. Am I reading it wrong, though, interpreting it wrong? Does anyone else feel that is what they are really saying?

                          Blessings,
                          Lori

                          Comment


                          • #14
                            Hey Lori, hope you are feeling better today. Well I am going to get off the computer and shut it down.

                            Prayers, Trishann

                            Comment


                            • #15
                              Thanks, Trishann, I do feel better today. My bladder is a little better, and I'm starting to feel a bit less shell-shocked, I'm starting to return to normalcy.

                              Have my pre-surigical appointments early tomorrow (hope it won't be snowing or sleeting for the drive in) for the lumpectomy I'm having on Friday.

                              Blessings,
                              Lori

                              Comment

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