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  • Long term use of pain meds? (really anxious)

    I am new here, and having a really bad day. I am just feeling really overwhelmed about this whole diagnosis. I am trying the diet, and have been doing so for about a month. Anyhow, so far it isn't working very well. Today I am in major pain, and feeling totally lost. I take my pain meds, but I am just freaking out wondering what is going to happen to me? I mean, I've been taking pain meds now for a year, except for 2 really short periods of time where the pain was bearable without meds. What if I am on meds for years and years? Is that a possibility? Will my liver be damaged? Am I trading IC for other problems by using meds to treat the pain? I can't not take anything...I would go insane from the pain. I just want this pain to GO AWAY. That doesn't seem to be happening anytime soon, and I am just really scared.

    How long have you all been on pain meds? Do you take something everyday? Currently my doc has me on demerol. It seems to be the only med that doesn't make me nuts. I have bipolar disorder, and oxcontin/oxycodone made me crazy. I was allergic to hydromorphone, and morphine made me nuts. Ultram did nothing to help this pain. I am soooooo scared about what is going to happen to me. I know my body is dependant on these meds now...if I don't take them for 8 or so hours I start to withdrawl. Is this normal? I feel like a junkie or something. I hate being dependant on stupid little pills, but it seems I have no choice. This pain is so bad. Can somebody help calm me down, right now I am in a major panic attack and I am going crazy.
    June 2000 - passed first kidney stone while 4 months pregnant with 1st daughter
    October 2000 - 2nd kidney stone, pre-term labour
    November 2000 - my beautiful baby girl is born! (emergency c-section)
    January 2001 - hospitalized for severe post-partum depression. Started on meds.
    February 2001 - diagnosed with hashimotos thyroiditis.
    March 2001 - diagnosed with medullary sponge kidneys
    2001- 2005 - numerous hospitalizations for kidney stones, depression/anxiety (up to 4 month stay at a time), thyroid troubles....
    2002 - 19 rounds of electro-convulsive therapy.
    2001 -2005 - every test known to mankind for "mystery pain" in pelvic region, hospitalizations
    March 2004- ovarian cyst removal surgery, appendectomy at the same time
    April 2004- hernia repair from previous surgery
    2000-2005 -more meds, tests and procedures than I can count. Over the course of 6 years had 3lithotripsies and passed 33 kidney stones.
    Sept 2005- pregnant with 2nd child
    Sept 2005 -June 2006 -pre-term labour from kidney stones. Held on until 36 weeks, gave birth to beautiful baby girl via emergency c-section
    April 2006 -HORRIBLE pelvic pain starts....24/7
    June 2006 -during c-section, surgical "stuff" found inside abdomen from previous hernia repair in 2004December 2006 -cystoscopy, diagnosed with IC
    May 2007 - 2nd cystoscopy with fulgeration
    June 2007 -diagnosed with SVT
    July 2007- diagnosed with asthma
    August 2007 -diagnosed with fibromyalgia and vulvodynia
    February - April 2008- Instillations of heparin/sodium bicarb/ lidocaine 3 times a week. No improvement. Continuing Elmiron therapy.
    July 2008 - ureteroscopy scheduled to smash "hundreds" of bilateral stones. Surgery failed. Dr. does another hydrodistention to get his first look at my bladder. Findings "catastrophic". Hunners ulcers found "everywhere."
    July 2008 - Awaiting interstim; ablation of AV node in heart (for SVT); appt. with therapist for PFD and appt. with endocrinologist for ongoing thyroid issues.

  • #2
    I don't think you're going crazy. What you are going through is perfectly normal. However, I would look into the possibility that the pain medication itself is causing your bladder pain.

    Do you drink plenty of water? Are you doing something physically that could cause the pain? Like sex? Horseback riding?

    I know I'm grasping, but just trying to drum up conversation to pull your mind away from the pain back to a set of questions...sort of a checklist.
    Sonja

    Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

    Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

    IC Diet: Very diet sensitive, esp. to spices.

    Comment


    • #3
      Could the pain meds really be the cause?! I mean, I had to have had pain to start on them in the first place, but now could the pain just be from the meds? I never thought of that. This weekend I was down to 4 pills in a day because the pain wasn't so bad. Then, on Monday and ever since I am taking the maximum 12 per day because I have to take them around the clock. I can't sleep properly because of the pain. Somehow the pain did get worse from Sunday to Monday. It doesn't seem to be med induced, since I was way down on my meds on Sunday. But, now that you mention it, Sunday night I had sex. OMG, that could be it?! That is so depressing. You mean, every time I have sex with my husband I could be in for this much pain, meaning that I will have to be on pills whenever I have sex?!

      As you can tell, I am really freaking out today. It seems like there is no way off this crazy ride. I thought getting a diagnosis would help me, but now I am not sure. I went 7 years not knowing what was wrong, getting test after test. But, I just went on with life as usual. Now that I have the diagnosis, I thought I'd be happy. However, it seems to have made me worse, since now I just obsess over EVERYTHING I do, and whether it was bad. I drank a pot and half of coffee a day for years. I gave it up cold turkey 6 weeks ago. I thought for SURE, giving it up would help me improve. Now, I just feel like saying "screw it", and making myself a cup to relax, since giving it up isn't helping! The pain is radiating down my left leg, my back, and any movement hurts bad. I have real issues with pills. Long story, but thanks to the stupidity of some doctors, I took $10,000 worth of meds in 7 years for a condition that I NEVER HAD. I swear that is what gave me IC in the first place . Now, whenever I have pain and need to take pain meds (which help me), I have a panic attack because I am sooo afraid of medications. Right now I am really needing to take something, but I am so scared of everything right now, that I can't think clearly. Thanks so much for talking to me about this. Nobody, not even my doctor understands this disease. Or my urologist!! Thankfully, I am currently waiting for a referral to a specialist who actually knows about this disease. My stupid *&%$ urologist told me to "take a hot bath." Yeah, RIGHT!! Everytime I pee? I have two kids to look after, one of them is 9 months old the other 6 years old. Why don't I just spend the rest of my life in the *&%$ bathtub?!! Thanks for letting me vent. I really appreciate your help, I just feel so alone and out of control.
      June 2000 - passed first kidney stone while 4 months pregnant with 1st daughter
      October 2000 - 2nd kidney stone, pre-term labour
      November 2000 - my beautiful baby girl is born! (emergency c-section)
      January 2001 - hospitalized for severe post-partum depression. Started on meds.
      February 2001 - diagnosed with hashimotos thyroiditis.
      March 2001 - diagnosed with medullary sponge kidneys
      2001- 2005 - numerous hospitalizations for kidney stones, depression/anxiety (up to 4 month stay at a time), thyroid troubles....
      2002 - 19 rounds of electro-convulsive therapy.
      2001 -2005 - every test known to mankind for "mystery pain" in pelvic region, hospitalizations
      March 2004- ovarian cyst removal surgery, appendectomy at the same time
      April 2004- hernia repair from previous surgery
      2000-2005 -more meds, tests and procedures than I can count. Over the course of 6 years had 3lithotripsies and passed 33 kidney stones.
      Sept 2005- pregnant with 2nd child
      Sept 2005 -June 2006 -pre-term labour from kidney stones. Held on until 36 weeks, gave birth to beautiful baby girl via emergency c-section
      April 2006 -HORRIBLE pelvic pain starts....24/7
      June 2006 -during c-section, surgical "stuff" found inside abdomen from previous hernia repair in 2004December 2006 -cystoscopy, diagnosed with IC
      May 2007 - 2nd cystoscopy with fulgeration
      June 2007 -diagnosed with SVT
      July 2007- diagnosed with asthma
      August 2007 -diagnosed with fibromyalgia and vulvodynia
      February - April 2008- Instillations of heparin/sodium bicarb/ lidocaine 3 times a week. No improvement. Continuing Elmiron therapy.
      July 2008 - ureteroscopy scheduled to smash "hundreds" of bilateral stones. Surgery failed. Dr. does another hydrodistention to get his first look at my bladder. Findings "catastrophic". Hunners ulcers found "everywhere."
      July 2008 - Awaiting interstim; ablation of AV node in heart (for SVT); appt. with therapist for PFD and appt. with endocrinologist for ongoing thyroid issues.

      Comment


      • #4
        You are not alone, and I'm new here as well, but I've seen others refer to meds making their symptoms worse. It may be worth looking into.

        Also, I'm actually surprised sex doesn't hurt for you. I pretty much can't have it without pain. I've all but given up on intercourse.

        I would definitely try to get some help with your children right now. I think that would be of benefit to you all.

        And taking a bath isn't really practical if you are in constant pain.

        Have you taken any antacids? Have you cut your diet down to the flare diet described in the book Confident Choices? Chicken, rice, potatoes, milk, carrots, green beans. I think that is it. My book is at home. Heating pad?

        Getting upset and worried and stressed is only making it worse. Please, please, try to remain calm. I know that is easier said than done b/c I recently experienced a flare and I was raving mad/depressed/upset.

        Come here and type it all out. It is cathartic.
        Sonja

        Dx: Idiopathic Dilated Cardiomyopathy/Congestive Heart Failure-1997, Vulvar Vestibulitis-2006, IC-Feb 2007, Atrophic Vaginitis 08, Heavy Long and Painful Periods leading to Partial Hysterectomy-2007, Rectal Fissure-2007, Pelvic Floor Dysfuntion-2008, Post-Menopausal-2010

        Meds: Coreg, Elmiron, Elestrin, Est/Test Topical Gel, Valium Suppositories, Lyrica, Dyrenium to counteract edema from Lyrica, Pain Meds.

        IC Diet: Very diet sensitive, esp. to spices.

        Comment


        • #5
          Yeah, sex hurts initially. Probably too much info, but once we "get going", I seem to be okay, KWIM? It takes about 5-10 minutes of pain/discomfort until I forget about it, LOL. But, then after I hurt for the rest of the night /the next morning. However, I had never thought of the possibilty it could make me hurt for DAYS.

          Where do I get this book from that you mention? I have just been staying away from the typical trigger foods that I have heard make it worse. I can't really take antacids like Tums, because I also have reccurrent kidney stones
          (25 or more in the last 7 years), and the Tums seem to make it worse. I have those gel packs that I can heat up...the problem is being able to just sit with that on my bladder, because my little one is crawling everywhere. I agree, I need some help with the kids. I don't really have anyone to take them right now. I wish I did though.

          Thanks for helping me...I am feeling a bit calmer now. I have an appt. with my GP tomorrow, who has kind of been in charge of this whole fiasco. Probably won't help though, since I do the research and tell HIM what I have learned, and her just goes with whatever I say. NOBODY knows anything about this bladder problem!
          June 2000 - passed first kidney stone while 4 months pregnant with 1st daughter
          October 2000 - 2nd kidney stone, pre-term labour
          November 2000 - my beautiful baby girl is born! (emergency c-section)
          January 2001 - hospitalized for severe post-partum depression. Started on meds.
          February 2001 - diagnosed with hashimotos thyroiditis.
          March 2001 - diagnosed with medullary sponge kidneys
          2001- 2005 - numerous hospitalizations for kidney stones, depression/anxiety (up to 4 month stay at a time), thyroid troubles....
          2002 - 19 rounds of electro-convulsive therapy.
          2001 -2005 - every test known to mankind for "mystery pain" in pelvic region, hospitalizations
          March 2004- ovarian cyst removal surgery, appendectomy at the same time
          April 2004- hernia repair from previous surgery
          2000-2005 -more meds, tests and procedures than I can count. Over the course of 6 years had 3lithotripsies and passed 33 kidney stones.
          Sept 2005- pregnant with 2nd child
          Sept 2005 -June 2006 -pre-term labour from kidney stones. Held on until 36 weeks, gave birth to beautiful baby girl via emergency c-section
          April 2006 -HORRIBLE pelvic pain starts....24/7
          June 2006 -during c-section, surgical "stuff" found inside abdomen from previous hernia repair in 2004December 2006 -cystoscopy, diagnosed with IC
          May 2007 - 2nd cystoscopy with fulgeration
          June 2007 -diagnosed with SVT
          July 2007- diagnosed with asthma
          August 2007 -diagnosed with fibromyalgia and vulvodynia
          February - April 2008- Instillations of heparin/sodium bicarb/ lidocaine 3 times a week. No improvement. Continuing Elmiron therapy.
          July 2008 - ureteroscopy scheduled to smash "hundreds" of bilateral stones. Surgery failed. Dr. does another hydrodistention to get his first look at my bladder. Findings "catastrophic". Hunners ulcers found "everywhere."
          July 2008 - Awaiting interstim; ablation of AV node in heart (for SVT); appt. with therapist for PFD and appt. with endocrinologist for ongoing thyroid issues.

          Comment


          • #6
            Just to let you know, opioids are some of the safest and most effective medicines known to man. They are substances that occur naturally in the body, so they do no harm to the liver or kidneys, unlike motrin or tylenol, which do cause harm.

            The only possible risk of these drugs are tolerance and dependence - which you are worried about - and that can easily be managed by tapering off, and by a pain doctor working with you.

            The other possible risk is by an opiate-naive person (someone not used to opiates) taking too high a dose (like someone looking to get high) and experiencing respiratory depression (stopping breathing.) That won't happen if you take the medicine as directed by your pain doctor.

            So, really, the med you are on now is very safe to take long-term, much safer than taking motrin every day or tylenol every day. No worries!

            Hope that helps.

            We are currently in a society that fears and hates these medicines, because of the side effect of the war on drugs, war on addiction. The truth is, these medicines have been a godsend for thousands of years (or longer) to mankind, and there is still nothing as effective for treating pain, and no pain treatment nearly so safe.

            Blessings,
            Lori
            P.S. I am envious of you for being able to obtain pain meds for your pain. I am in the position of being forced to undergo really risky surgery, surgery that has unpredictable results, because my doctor is not "comfortable" prescribing me Ultram. I know you don't want to hear this, but things could be worse...imagine if they refused to let you have any pain meds at all....

            Comment


            • #7
              Thanks for the info on opiods. I really, really appreciate it. I am sooo, sooo sorry that you can't get pain meds. Really, I am. I hope I didn't upset you by sounding ungrateful in my situation. I do realize that it could be worse. Sometimes I feel like it is a double edged sword though. I mean, if the meds are causing my pain, then I will be in pain until I stop them (but will still have pain since I have IC). Then I will be in pain, and then my depression gets really, really bad. Or, I take my meds, and stress about the implications of that, and possibly make the pain worse...and be depressed. UGH, it makes no sense.

              I can only imagine what you are going through. I have been in your situation before, though not long term. For the longest time, the docs didn't believe me. I would get a script for 30 percocets and that is it. Then, I would go back and complain about the pain coming back, and they would basically call me an insane junkie. I would go to emergency, in horrible pain, and they would see that I am bipolar, and then all my credibility went out the window. They figured I was nuts, and drug seeking. For a long time, I actually believed them, because no one could figure out what was wrong with me. I went on a 7 year horrible ride that consisted of long hospital stays as a psych inpatient (thus missing my firstborns babyhood), some stays up to 4 months long. I was forced to go into to "rubber room", I was sexually assaulted by a patient one night because they drugged me up so much, I didn't know that he got into bed with me, NAKED. I was on sooo many psych drugs, that they induced psychosis on me (which I never had before) and I seeing spaceships etc....Then, they decided to fry my brain a little more, by doing 19 rounds of ECT on me . I now have little memory of 1997 to 2003.

              Okay, sorry, I am rambling now. I guess I just really, really needed to get this all out. I am pretty scared that I am being led on a wild goosechase again by these doctors. Everything they do /prescribe scares me.

              I am so sorry you are having to have surgery...may I ask what they are doing? Sounds like we all have a similar scary /sad story. I am so sorry that you are dealing with this. I wouldn't wish it on anyone.
              June 2000 - passed first kidney stone while 4 months pregnant with 1st daughter
              October 2000 - 2nd kidney stone, pre-term labour
              November 2000 - my beautiful baby girl is born! (emergency c-section)
              January 2001 - hospitalized for severe post-partum depression. Started on meds.
              February 2001 - diagnosed with hashimotos thyroiditis.
              March 2001 - diagnosed with medullary sponge kidneys
              2001- 2005 - numerous hospitalizations for kidney stones, depression/anxiety (up to 4 month stay at a time), thyroid troubles....
              2002 - 19 rounds of electro-convulsive therapy.
              2001 -2005 - every test known to mankind for "mystery pain" in pelvic region, hospitalizations
              March 2004- ovarian cyst removal surgery, appendectomy at the same time
              April 2004- hernia repair from previous surgery
              2000-2005 -more meds, tests and procedures than I can count. Over the course of 6 years had 3lithotripsies and passed 33 kidney stones.
              Sept 2005- pregnant with 2nd child
              Sept 2005 -June 2006 -pre-term labour from kidney stones. Held on until 36 weeks, gave birth to beautiful baby girl via emergency c-section
              April 2006 -HORRIBLE pelvic pain starts....24/7
              June 2006 -during c-section, surgical "stuff" found inside abdomen from previous hernia repair in 2004December 2006 -cystoscopy, diagnosed with IC
              May 2007 - 2nd cystoscopy with fulgeration
              June 2007 -diagnosed with SVT
              July 2007- diagnosed with asthma
              August 2007 -diagnosed with fibromyalgia and vulvodynia
              February - April 2008- Instillations of heparin/sodium bicarb/ lidocaine 3 times a week. No improvement. Continuing Elmiron therapy.
              July 2008 - ureteroscopy scheduled to smash "hundreds" of bilateral stones. Surgery failed. Dr. does another hydrodistention to get his first look at my bladder. Findings "catastrophic". Hunners ulcers found "everywhere."
              July 2008 - Awaiting interstim; ablation of AV node in heart (for SVT); appt. with therapist for PFD and appt. with endocrinologist for ongoing thyroid issues.

              Comment


              • #8
                pain meds

                Lori is so right! I happen to be in some sort (not going to question, right?) of spontaneous remission and I have no idea why! I have slowly gone down from around 80 to 100mgs of oxycontin 3X a day to 20 mgs. 3X a day and I feel fantastic! (also I am still cutting back!) As I am so anxious to get off of everything my wonderful PM Doc siad slow down! These meds have been around for centuries and are truly safe--yes they can be abused but that is not your case! I was wondering if you have tried anything else beside the IC diet? Maybe elmiron or the million other things we all just try that can be found all over the boards. Dr. Hanno once suggested something called Brioski which can neutralize the system and if I feel anything coming on I immediately take some. There are great ideas all around these boards so good luck. But as to the pain meds, if they help as we have all said before, all we want is our life back! Hugs-Malone

                Comment


                • #9
                  Just remember when you take your medicine read the direction. If it say to drink a glass of water, you should do just that. That would keep your esophagus from getting damage from getting stuck in it.

                  Some of the medicine seems to give me heartburn especially the pain pills, but when I take it with Nexium, it does not give me hearburn.

                  I truly understand about being scare and not knowing the long term effects. I think we all feel this way. But I know for me, I can't bear to live the rest of my life in so much pain and misery.

                  If the medicine is making things worse, I agree with the others, you might have to try something else. I think most of else went through these trial and error things.

                  Sending hugs, Trishann

                  Comment


                  • #10
                    I don't know if I've said it yet but welcome to the board! I'm so sorry that you're having so many difficulties right now, but I can assure you that many of us have been where you are.

                    I have trouble, even after all these years, accepting the fact that I may live out my life on pain meds. It's hard for me to imagine my life without them anymore. I've tried to cut back, and I've had to go for a day or two without them and the side effects of NOT taking them are by far worse than taking them as prescribed.

                    I know it's a hard thing to deal with a chronic pain illness, the upheaval of your entire life, and now the fact that you need pain meds just to get through the day. It's a grieving process actually, and everyone adjusts to it differently.

                    Lori gave you great advice on opiods and I hope that sets your mind at ease somewhat.

                    If you ever have any questions or problems please don't hesitate to ask. If you're having problems with sex, there is a new board www.whensexhurts.com that is run by Jill, the owner of this board. It's a great place to go to ask just about any question you want.

                    The patient handbook link is at the top of this web page and you may find some more helpful hints there as well.

                    I hope things get better for you soon!

                    Hugs, Sandy
                    *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.

                    Comment


                    • #11
                      When taking pain meds because you NEED them, try thinking of it this way:

                      If you had diabetes, would you hesitate to take the insulin you would need to live a normal life?

                      What if you had a heart problem --- would you hesitate to take the medications you need to live your life?

                      What if you had high blood pressure --- it also requires medications.

                      YOU DO HAVE PAIN --- and that may mean that you need pain medications to live any kind of normal life. Yes, your body may become dependent on those medications, but when the time comes when the reason for the pain is gone, your physician will help you to wean away from them.

                      And your physician will also check you periodically to be certain you are doing well.

                      Warm healing thoughts are headed your way.

                      Donna
                      Stay safe


                      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                      Have you checked the ICN Shop?
                      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                      Patient Help: http://www.ic-network.com/patientlinks.html

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                      I am not a medical authority nor do I offer medical advice. In all cases, 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.
                      [3MG]

                      Anyone who says something is foolproof hasn't met a determined fool

                      Comment


                      • #12
                        Thankyou all so much. I feel like you all will be my lifeline for a while until I get used to all of this. I feel like everything I am doing is in vain. I can't go out anywhere because simply carting my 9 month old around on the bus (I don't drive) makes me hurt. I sit around my house all day looking at the disaster that my house has become. Then, I get depressed. So, I end up going out to get a change of scenery. Then, going out puts me in pain. It's a vicious cycle. I am so happy to have found this place, you all understand. Although, I wish you didn't have to be here either.

                        When you all have pain, does it affect your bowels as well? I have this feeling of pressure in my rectum (sorry really gross) like I have to "go", but I don't have to. Then I get shooting pains up my rectum to my tailbone. I do have IBS though. Also, my bladder pain burns over my pubic bone. For the longest time I thought it was from my cesarean section 9 months ago. I literally have to walk around without pants or underwear, I can't stand the clothes touching me. The pain is also radiating down my left leg. I feel like I have a full bladder, but I can't go! I sit on the toilet, and I pee little dribbles. Then, 10 minutes later I have to go again. Or at least I think I do.

                        I am drinking tons. I am eating all organic, from the list of "okay" foods from this site. I think I may have to eat more bland for a while though. Back to the basics. I am taking organic vitamins. I have had a cystoscopy with distention, but I only got moderate relief for 3 days. Then, I passed a kidney stone and I think it messed things up for me. My ureters are scarred and damaged from the passage of 25 or so kidney stones in the last 7 years. I have had 3 lithotripsies to smash some stones that were too big to pass.

                        Other medical problems I have include (some already mentioned) are:
                        Bipolar disorder (not currently medicated as I believe that I may not be bipolar. I think my moods are very related to my IC)
                        Endometriosis (diagnosed in 2004 after a hernia repair revealed endo in my abdomen)
                        Hashimotos thyroiditis (I do not have a functioning thyroid. Diagnosed in 2001.
                        Currently on 1.50 mg of synthroid)
                        IC (diagnosed last December, after 7 years of pure HELL, in which doctors DID NOT BELIEVE ME.)
                        Medullary sponge kidney (diagnosed in 2001 after numerous u/s scans to look at my kidney stones)
                        IBS (had bowel problems as long as I can remember. IBS acts up whenever my other health problems act up)

                        I also currently have a systemic yeast infection in which the medical community does not seem to believe in. I can't get rid of this. I think it started with undiagnosed thrush from breastfeeding (not breastfeeding anymore due to meds), and has gone through my body. I am trying not to eat sugars, starches as much to rid the candida. However, I can't cut out carbs completely, as the serotonin in my brain gets too low as a result. Then, I get so depressed I am suicidal. I tried the atkins in 2004 and just about landed in the hospital I was so depressed.

                        So, that's my story in a nutshell. I will post an intro and my whole story at a later time, when I am not so overwhelmed. Right now I am just trying to stay sane until my husband gets home from work. Of course, it has to be his birthday today and I feel so guilty that he is coming home to a giant mess, and no dinner. UGH.
                        June 2000 - passed first kidney stone while 4 months pregnant with 1st daughter
                        October 2000 - 2nd kidney stone, pre-term labour
                        November 2000 - my beautiful baby girl is born! (emergency c-section)
                        January 2001 - hospitalized for severe post-partum depression. Started on meds.
                        February 2001 - diagnosed with hashimotos thyroiditis.
                        March 2001 - diagnosed with medullary sponge kidneys
                        2001- 2005 - numerous hospitalizations for kidney stones, depression/anxiety (up to 4 month stay at a time), thyroid troubles....
                        2002 - 19 rounds of electro-convulsive therapy.
                        2001 -2005 - every test known to mankind for "mystery pain" in pelvic region, hospitalizations
                        March 2004- ovarian cyst removal surgery, appendectomy at the same time
                        April 2004- hernia repair from previous surgery
                        2000-2005 -more meds, tests and procedures than I can count. Over the course of 6 years had 3lithotripsies and passed 33 kidney stones.
                        Sept 2005- pregnant with 2nd child
                        Sept 2005 -June 2006 -pre-term labour from kidney stones. Held on until 36 weeks, gave birth to beautiful baby girl via emergency c-section
                        April 2006 -HORRIBLE pelvic pain starts....24/7
                        June 2006 -during c-section, surgical "stuff" found inside abdomen from previous hernia repair in 2004December 2006 -cystoscopy, diagnosed with IC
                        May 2007 - 2nd cystoscopy with fulgeration
                        June 2007 -diagnosed with SVT
                        July 2007- diagnosed with asthma
                        August 2007 -diagnosed with fibromyalgia and vulvodynia
                        February - April 2008- Instillations of heparin/sodium bicarb/ lidocaine 3 times a week. No improvement. Continuing Elmiron therapy.
                        July 2008 - ureteroscopy scheduled to smash "hundreds" of bilateral stones. Surgery failed. Dr. does another hydrodistention to get his first look at my bladder. Findings "catastrophic". Hunners ulcers found "everywhere."
                        July 2008 - Awaiting interstim; ablation of AV node in heart (for SVT); appt. with therapist for PFD and appt. with endocrinologist for ongoing thyroid issues.

                        Comment


                        • #13
                          I take pain medication regularly and am totally unapologetic about it So what if I have to take it? Pain medication is what got me out of the fetal position, out of bed, and back to work full time, so if anything I am thankful for it.

                          Lori is right; proper pain management on opioids by a qualified doctor can be much, much safer than overdosing yourself with Tylenol and Advil, which will wreck your liver and your kidneys respectively. When you take your medication to LIVE, you're not a junkie. If you take it to AVOID LIVING, you may be heading down the junkie path and it's time to get help. However, it sounds like you, like me, are almost non-functional without meds, so I highly doubt you're taking them to get high... you have real pain and there is nothing, absolutely nothing, wrong with treating it.
                          ****
                          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


                          • #14
                            ICNDonna - I read your post after I posted mine. Thanks for putting it to me that way. You are right. It is the damn stigma of these meds. I am so scared because I can't seem to get past the stigma myself. Especially since I have been made to feel bad about taking these meds in the past by my family as well as the medical community. I am also afraid that my doctor is just going to cut me off one day, and I will not have pain meds at all. He already seems to be reluctantly prescribing to me. He is my GP, and I want to be referred to a pain doctor, but my GP won't because he believes that my pain is going to be "short term". I can't seem to convince him that this is a lifelong problem for me, and that I need a competent medical team. My urologist knows nothing about this disease. My psych doc wants to drug me up on meds and tells me that "I just have to accept my pain and ignore it."

                            I just feel so out of control. However I went to my kidney specialist on Friday and he said one of his colleagues "is interested in IC." So, I am waiting for a referral to him. At this point I feel like it is my only hope, so I am holding on until then. For now, I am just getting by with prayer it seems.

                            SandyRN - thanks for the warm welcome, and your understanding. Your validation really helps me. I will definately be checking out the sex board. I've been suffering through it. Not for my DH, because he is afraid to hurt me and really is reluctant to do it. But, I've been so stubborn about not giving up that part of my life that I go through with it anyways.

                            Anyhow, thanks to all of you. I feel so much better mentally already just knowing that I am NOT alone.

                            I also will mention that I am 27 years old, and at this point I cannot fathom going the rest of my life like this.
                            June 2000 - passed first kidney stone while 4 months pregnant with 1st daughter
                            October 2000 - 2nd kidney stone, pre-term labour
                            November 2000 - my beautiful baby girl is born! (emergency c-section)
                            January 2001 - hospitalized for severe post-partum depression. Started on meds.
                            February 2001 - diagnosed with hashimotos thyroiditis.
                            March 2001 - diagnosed with medullary sponge kidneys
                            2001- 2005 - numerous hospitalizations for kidney stones, depression/anxiety (up to 4 month stay at a time), thyroid troubles....
                            2002 - 19 rounds of electro-convulsive therapy.
                            2001 -2005 - every test known to mankind for "mystery pain" in pelvic region, hospitalizations
                            March 2004- ovarian cyst removal surgery, appendectomy at the same time
                            April 2004- hernia repair from previous surgery
                            2000-2005 -more meds, tests and procedures than I can count. Over the course of 6 years had 3lithotripsies and passed 33 kidney stones.
                            Sept 2005- pregnant with 2nd child
                            Sept 2005 -June 2006 -pre-term labour from kidney stones. Held on until 36 weeks, gave birth to beautiful baby girl via emergency c-section
                            April 2006 -HORRIBLE pelvic pain starts....24/7
                            June 2006 -during c-section, surgical "stuff" found inside abdomen from previous hernia repair in 2004December 2006 -cystoscopy, diagnosed with IC
                            May 2007 - 2nd cystoscopy with fulgeration
                            June 2007 -diagnosed with SVT
                            July 2007- diagnosed with asthma
                            August 2007 -diagnosed with fibromyalgia and vulvodynia
                            February - April 2008- Instillations of heparin/sodium bicarb/ lidocaine 3 times a week. No improvement. Continuing Elmiron therapy.
                            July 2008 - ureteroscopy scheduled to smash "hundreds" of bilateral stones. Surgery failed. Dr. does another hydrodistention to get his first look at my bladder. Findings "catastrophic". Hunners ulcers found "everywhere."
                            July 2008 - Awaiting interstim; ablation of AV node in heart (for SVT); appt. with therapist for PFD and appt. with endocrinologist for ongoing thyroid issues.

                            Comment


                            • #15
                              Sarojini - thankyou so much for your response. You're right, I shouldn't feel guilty. Without my meds I can't get off the couch. However, I really don't know how much this med /dose is helping, since I can get off the couch, but not do much else. Then, I feel like I am taking them for nothing, because I still don't feel like I am functioning "well." I am off the couch, but not functioning, KWIM?
                              June 2000 - passed first kidney stone while 4 months pregnant with 1st daughter
                              October 2000 - 2nd kidney stone, pre-term labour
                              November 2000 - my beautiful baby girl is born! (emergency c-section)
                              January 2001 - hospitalized for severe post-partum depression. Started on meds.
                              February 2001 - diagnosed with hashimotos thyroiditis.
                              March 2001 - diagnosed with medullary sponge kidneys
                              2001- 2005 - numerous hospitalizations for kidney stones, depression/anxiety (up to 4 month stay at a time), thyroid troubles....
                              2002 - 19 rounds of electro-convulsive therapy.
                              2001 -2005 - every test known to mankind for "mystery pain" in pelvic region, hospitalizations
                              March 2004- ovarian cyst removal surgery, appendectomy at the same time
                              April 2004- hernia repair from previous surgery
                              2000-2005 -more meds, tests and procedures than I can count. Over the course of 6 years had 3lithotripsies and passed 33 kidney stones.
                              Sept 2005- pregnant with 2nd child
                              Sept 2005 -June 2006 -pre-term labour from kidney stones. Held on until 36 weeks, gave birth to beautiful baby girl via emergency c-section
                              April 2006 -HORRIBLE pelvic pain starts....24/7
                              June 2006 -during c-section, surgical "stuff" found inside abdomen from previous hernia repair in 2004December 2006 -cystoscopy, diagnosed with IC
                              May 2007 - 2nd cystoscopy with fulgeration
                              June 2007 -diagnosed with SVT
                              July 2007- diagnosed with asthma
                              August 2007 -diagnosed with fibromyalgia and vulvodynia
                              February - April 2008- Instillations of heparin/sodium bicarb/ lidocaine 3 times a week. No improvement. Continuing Elmiron therapy.
                              July 2008 - ureteroscopy scheduled to smash "hundreds" of bilateral stones. Surgery failed. Dr. does another hydrodistention to get his first look at my bladder. Findings "catastrophic". Hunners ulcers found "everywhere."
                              July 2008 - Awaiting interstim; ablation of AV node in heart (for SVT); appt. with therapist for PFD and appt. with endocrinologist for ongoing thyroid issues.

                              Comment

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