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  • Hi there

    Hi there. My name's Sam, and my wife is Michelle. We'll both be posting from this account, but Michelle wanted me to take a few minutes and give you our background and explain our story.

    Michelle's been having abdominal pain for several years - from minor in the beginning that progressed to pretty severe. There was also intermittent general pain that got even worse as the IC journey progressed.

    We started heavily pursuing this in June 2007. We first thought it was gynecological - she has a family history of endo. Her original gyno did a pelvic and a ultrasound and told her nothing was wrong. We were then referred to a gastroenterologist who did an upper and lower endoscopy, and a small bowel series. Everything came back clear. We then saw a new gynecologist who did a full series of tests, and a laparoscopy to rule out endo. No endo. He mentioned IC, and we were referred to a urologist by our family dr. In January 2008, she started following the IC diet, taking quercetin, and lots of hot baths - and that helped some but not really.

    Our visit with the first urologist last week was less than fun. She poked around for a while, and then did an ultrasound on Michelle to make sure she was voiding completely. The doctor then said that there's a good possibility that she has IC, and that she wanted to try DMSO. I indicated that I wasn't too keen on that without having tried some other options. She agreed to do a rescue instillation, and then schedule Michelle for a cysto. I swear they must have used the largest catheter available, with just a little dab of lydocaine jelly on the tip, and proceeded. Needless to say Michelle was in excruciating pain (she described it as a 10+ on the pain scale) - and they didn't really care. I will say that the rescue instillation helped immensely with the abdominal pain for a few weeks.

    The first uro wanted to do the cysto, in office, with the same amount of pain control (i.e. - a dabble of jelly). At this point, we started looking for a more compassionate urologist. We found one and she tried the normal treatment, Elmiron and Amitryptiline, with no improvement at all. We then showed her a little research we found on this forum and convinced her to let us try Dextroamphetamine Sulfate, and asked us to have her Gyno prescribe Misoprostol.

    6 months after we started this course of treatment (January 2009) IC was mostly under control, but the other general pain had increased to the point of a daily pain level at 8 or 9. We sought out different doctors to try to find another diagnosis with little progress. Then one day I asked Michelle what has changed? What has this IC treatment changed that triggered this pain (the pain increased as we followed the IC treatment of diet and the Dex/ Miso combo). A couple weeks later Michelle came back to me with an answer. Salt... Because of the IC diet she had cut back her Salt intake (before it was insane the amount she ate). She started taking Kelp and found a good bit of relief, this was an indicator to us that it had to be the thyroid.

    We went to see our internist and he ran the tests and found again all her thyroid levels were mostly normal or borderline. He had her get an ultra sound of her thyroid and found a couple cysts and a nodule (fairly a good size), but he wanted to wait 6 months and then recheck it. We were not going to wait 6 months when we KNEW it was thyroid related. We sought out a doctor who felt differently and we found him. He is an internist who has an interest in the thyroid. He listened to her symptoms and said that she needed thyroid hormone and prescribed Levoxyl. The first day of the medicine was a drastic and immediate change.

    We now can say Michelle has functional hypothyroidism and her IC is in remission (and should stay that way as long as her thyroid levels stay balanced). We are thrilled that a "bad" day is when the pain is a 3 or 4 and there are now many a day when the pain is a 1 or a 0. :woohoo:

    So hello everybody - we hope we can provide some help and hope. I know there's a lot of "we's" in this post, but we're kind of attached at the hip. Sorry if it seems weird, but we both decided that since it affects us together, that we'd work through it together. I have spontaneous Von Willebrands disease (a blood clotting disorder), so we keep a constant alert about our health issues. High-school sweethearts, we've been together since 2002, and were married May 2007 (on our 5th anniversary). As a psychologist once told Michelle life sucks but then you learn to cope and have fun with the bumpy ride.


    -Sam and Michelle

    PS - There is light at the end of the long dark tunnel.
    Last edited by samandmichelle; 03-15-2009, 09:34 PM. Reason: Forgot some stuff
    Our Story

  • #2
    Hi Sam and Michelle
    I just wanted to say hello and to the IC network!!
    Current diagnosis
    Severe IC, Severe Endometriosis(keeps growing back all over despite surgeries and treatment), Chronic ovarian cysts, Chronic Pelvic Pain Syndrome,Fibromyalgia,Inguinal hernia, bursititis of the hip, Migraines, IBS, Celiac disease, CROHN'S Disease, Chronic Constipation, Chronic anal fissures, Vulvodynia, Pelvic Floor Dysfunction, Pirisformis muscle spasms,vulvar vestibulitis, chronic insomnia, Burning Mouth Syndrome, Brain TUMOR, Chronic Lyme Disease,Temporomandibular Joint Disorder,Degenerative disc disease,Arthritis.
    Allergies: Elmiron, Levaquin, Sulfa-Anaphylactic shock,Morphine, Doxyclycline,Cipro

    Treatments I have tried:Bladder instillations, Oral meds-Elmiron, Elavil (amitryptyline), Hydroxyzine (Vistaril & Atarax), Ditropan, Levsin, Urispas, Urised, Pyridium, Cystoprotek, Desert HarvestAloe,antibiotics,Ultram,Neurontin,Valium,Tramadol,Lunesta,Ketor olac,Cipro,Meloxicam,Dilaudid,Morphine,Vicoden,Darvocet,oxycontin,Lyri ca,Cymbalta,Nortriptyline,Enblex,Baclofen,Clonidine,oxybutynin,Detrol, Nitroglycerine ,Vesicare,Sanctura(there are more but this is enough)
    Physcial Therapy, Cystoscopy with Hydrodistentions, Numerous Nerve Blocks, Neuromodulation-including Sacral neuromodulation(Interstim) and post-tibial nerve stimulation (Urgent PC-12week), Botox, bladder instills, physical therapy, natural(herbs)Current meds: Long list..just email if you are interested
    Interstim implants--8 plus surgeries for them.
    I am selling IC awareness bracelets, keychains, pens and pins..if interested please email me! ThanksFeel free to email me at [email protected].
    One day at a time

    Comment


    • #3
      Welcome you all
      Miss Bessie

      Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

      Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

      Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

      Comment


      • #4
        hi both of you and welcome
        Dx with Carprul Tunnel 2000,endo in 2001, IBS in 2006IC in 2007,BiPolar 2008, and Panic attacks (anxiety) 2008, agoraphobia 2008.
        Meds: elmiron,Clonazepam 1mg 3x a day for anxiety

        Comment


        • #5
          And To the ICN..

          Just to let you know the office Cysto is not very accurate in Dx IC.. It is great for rulling out things but most of the time it will miss cases of IC.

          There is another test, The potassium test where they insert this solution in you and see how you react to it. I have never had this done, but those who have say it is painful, because it burns if it is possitive. But the Dr should give you something like a rescue instill right after to soothe the burning. But again this test is not always accurate.

          The Cysto/Hydro is an very accurate test, But it looks like you have done your research because there could be complications that come along with this proceeedure.
          Some have no problems and then again some do. I for one did. But I am still glad that I know for a fact what I have without a doubt!

          Well I wanted to welcome both of you and I hope you get some answers soon. Please keep us updated on how things are going..And if you have any questions please ask. The people here will try to answer you to the best of thier knowledge. But the most important thing is to know you both are not going through this alone.. We are here for you..
          Hugs
          Ronda

          ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


          Link to Patient Handbook:
          http://www.ic-network.com/handbook/

          Diet Reference Sheet:
          http://www.ic-network.com/diet/icndi...tsheet0909.pdf

          Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

          Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

          Meds I have Tried:
          Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
          Lexapro< Bad reaction to this med!
          Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

          Dx With IC in Nov 2006 with Hydro/Cysto
          Hydro/Cysto Caused Bladder to Rupture.

          Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



          ICN 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.

          Comment


          • #6
            Welcome to the board! What a thoughtful introduction your post was and so compassionate to how your wife is feeling-very nice! Yes you are in this together.

            First let me tell you what I did for my rescue instills. I told them upfront they were not touching me with any cath larger than a pediatric cath!! I think it is the 6fr cath that works very well. They walked in the room holding a 14fr cath and were going to do my 1st instill with that. I asked them to show me the size and I said NO WAY!! Most of us can't even stand the 10fr cath without pain so ask for a smaller cath size.

            I was a lucky one because the in office cystoscopy did clearly show IC. My GYN did it in his office and gave me 2 valiums to take an hour beforehand. This helped enormously and I didn't feel any pain. You have to catch the IC at just the right time to see it with the cystoscopy however.

            I thought they stopped doing potassium testing because of the pain...?

            Lastly, if you go to the home page and scroll down, you'll see a list of IC doctors in your area. That is how I found my URO/GYN and he is the best in the Dallas Ft Worth area. I am so lucky to have him so please see if you can find a URO/GYN on the home page. Good luck and welcome!!
            Gina
            Texas




            Pituitary Sella Mass, Left Thyroidectomy, PFD, Periodontal Disease, Fibromyalgia, Chronic Fatigue Syndrome, IC, bone loss in jaw during molar extraction, atrophic vaginitis, Chronic dry eyes and vision loss, osteoarthritis, squamous cell carcinoma, parital hysterectomy, Chronic Insomnia, Endometriosis, fibroid tumors.

            BEST Med: Elmiron, Vistaril, and Topamax

            Comment


            • #7
              I'd like to add another to the IC Network.

              At least a part of making an IC diagnosis is ruling out other possibilities. The office cysto was a part of that process for me. It's definitely not a "fun" procedure, but I have found that if I concentrate on relaxing it makes it easier. You might want to ask for something for her take beforehand to help her relax.

              You can also ask the doctor about a potassium sensitivity test. If she does have IC, when the potassium solution is instilled, it can cause pain. But it is immediately drained out and an analgesic instilled. Again, not a fun test, but easier than hydrodistention if it makes the diagnosis.

              Even though DMSO did help me, I tried other instillation solutions first --- and many people who post are helped without going the DMSO route. I wouldn't even consider DMSO without a diagnosis.

              If you're not feeling comfortable with what you are being told, my suggestion has to be to see another doctor (in a different office practice) for a second opinion.

              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

              Sub-types https://www.ic-network.com/five-pote...markably-well/

              Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

              AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

              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


              • #8
                The fact that you are attacking this as a team is awesome. Unfortunately I don't know about the docs in Atlanta that well but welcome to the board and know we are always here!!!

                Hugs,
                Barb
                (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                :angel: IC Angel Volunteer Coordinator :angel:
                :) Contact me via PM or e-mail if you would like to help
                I have learned all about life in 3 words: It goes on! :D--Robert Frost
                PCOS 7/85
                RSD 7/94 :headbang:
                Endometriosis 9/98 :toilet:
                Antiphospholipid antibody syndrome 9/99
                Kidney stones--too many to count
                Factor V Leiden mutation 10/02
                IC 6/03 :evilsmile
                Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                "Spirit is an invisible force made visible in all of life"--Maya Angelou
                "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

                Comment


                • #9
                  Not a whole lot I can add to what the others have told you so I will just say... Hello to both of you and to the ICN...
                  Sharon

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

                  Where I can be found most days.



                  Link to the ICN Patient Handbook:
                  http://www.ic-network.com/handbook/

                  Link to the IC Diet:
                  http://www.ic-network.com/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.

                  Comment


                  • #10
                    I am glad that you are both supporting each other. Having a supportive husband has gotten me through this rollercoaster for many years now. I truly believe that is one of the most important things to have to get through this or any disease.

                    I also think it is important to find a compassionate doctor. I haven't checked this site for your area, but I would hope there would be doctors in your area. This site wasn't around when I was diagnosed, but my doctor that originally took the best care of me was. I haven't checked on my currrent doctor, but he is awesome as well!

                    T83

                    Comment


                    • #11
                      Welcome! I haven't posted here in a while, but you have brought me out of the woodwork as I live in Atlanta too. I have a great uro that I have seen for 6 years and a great gyno that understands IC too. Like others have said my in-office cysto did not show IC but the cysto/hydro under anesthesia did. I never had a potassium test. I received your PM and will send you more details about my uro. Feel free to PM me with more questions.
                      Last edited by Nicole in ATL; 02-18-2008, 02:01 PM. Reason: thought I would add some more

                      Comment


                      • #12
                        I just wanted to say howdy!

                        I find it very sweet that you are attacking this as a team. It is very important! My hubby is a former chef. When I was first diagnosed, the diet was nearly impossible for me to follow since Im not much of a cook. If he wouldnt have been there for me going over my list and cooking for me, I wouldve been lost.

                        Hang in there! You will find your answers!
                        Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

                        I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

                        Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

                        I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

                        Comment


                        • #13
                          We've decided on a new uro and have an appointment next Friday! We're pretty excited, because I had a not-so-good chat with a nurse at the old uro's office, today. Needless to say, we won't be going back.

                          The rescue instillation is still helping - but sex is off-limits again (pain is starting to come back, and it started there), and I'm trying to read as much as I can on treatment options (already two trips to the Emory University medical library - it pays to keep your old Georgia university system ID).

                          We're pretty excited about seeing the new uro, because I've had several people from here tell me she's good - and read a lot of good reviews online. I don't know if it's appropriate to say whom - but we shall see! Thanks, again, everyone. It really means a lot for us to hear from others who are so supportive. Michelle's been called a liar, a fake, a drug seeker (despite the fact that she doesn't want narcotics - all of them make her to sleepy to function), over-reacting, etc. We've been dealing with this on and off for five years, and seriously for almost a year, and to finally be getting somewhere is a relief.

                          Thanks, again.

                          -Sam and Michelle
                          Our Story

                          Comment


                          • #14
                            I hope you her the best of luck. I know it is so important to have a Dr validate your pain and what you are feeling. I have one Dr that will listen to me and that is my GYN. But even some times I feel that she thinks I am exaggerating.
                            Hugs
                            Ronda

                            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                            Link to Patient Handbook:
                            http://www.ic-network.com/handbook/

                            Diet Reference Sheet:
                            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                            Meds I have Tried:
                            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                            Lexapro< Bad reaction to this med!
                            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                            Dx With IC in Nov 2006 with Hydro/Cysto
                            Hydro/Cysto Caused Bladder to Rupture.

                            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                            ICN 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.

                            Comment


                            • #15
                              I am sorry you are going through this. When I first had an in office cystoscopy, it was tremendous pain! It was actually worse than when I had my exploded ectopic pregnancy 9 years ago! After that, I never would have one again awake. The next one I had I asked the Dr to sedate me, and he had no problem with it. I guess you have to find a more reasonable doctor.Some can be so cold. Good luck at your appointment.
                              Jen

                              Comment

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