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  • Hiya everyone.

    Hi... my name is Jennifer, or Jenn, or whatever variation you like

    My story begins in 01/07 on my 22nd birthday when I was diagnosed with chlamydia. I never had anything wrong with me medically before and had always used condoms during sex and had only had two sexual partners. I was devastated. I was given azithromycin (sp?) and was told I was cured. My symptoms returned, including that of a painful bladder and frequent urination, and I was in and out of the gynecologist's office until May 2007 with recurrent chlamydia. She kept treating me over and over with azithromycin. A week before my college graduation, I was hospitalized for a week when my digestive system shut down. I was diagnosed with gastritis, because they couldn't figure out what was wrong with me. In September 2007 all my vaginal symptoms returned and my stomach was queezy. Desperate for help, I went to see my mom's surgeon and asked him what was wrong with me. He did two cultures in his office, one vaginally and one anally. I had never had anal sex. Well... the cultures came back positive for chlamydia! As it turns out, the STD had ravaged my digestive system. I was given two weeks of doxycycline which ultimately cured me. This means I had the STD recurrent for 8 months taking azithromycin over and over again when the drug was not treating it. This whole time I was having painful bladder and urinary frequency.

    October-December 2007 I was fine. In January 2008 I presented with bladder pain and frequent urination again. I was worried it was the STD reappearing and I saw a gynecologist. She said I had a little yeast and gave me Terazol, which I had a severe allergic reaction to. Symptoms persisted. I tried Monistat on my own and it seemed to work. Late February rolled around and I was in pain again. More tests, more yeast, or so they said. More drugs. This went on until July 2008. I was perfectly fine the month of August. September rolls around and my bladder pain and urinary frequency return. Again, I'm freaked cause I think its the STD. My primary care tests and treats me for gonnorea and chlamydia. The tests end up coming back negative. She orders a transvaginal ultrasound. TU shows fluid in my cul-de-sac and cysts on my ovaries. I go see the gyneolcogist. She does a DNA probe and vaginally I appear fine. My bladder pain and urinary frequency persist. She decides to give me Levaquin and do her own transvaginal ultrasound. This ultrasound reveals cysts covering my left ovary and fluid in the fallopian tube and fluid again in the cul-de-sac. She wants to do a laproscopy the next day and remove my left ovary and tube. I let her do the surgery. She did not end up removiing the ovary or tube, when she got in there they were fine. She did suck out the fluid in the cul-de-sac and when she was sucking behind my bladder a huge cyst came out of nowhere and popped in her machine. This fluid was tested and was sterile. Gallbladder was inflamed. Intestines were full. I went home and threw up for the next four days and we could not get my intestines working again. Countless different methods were tried. Finally, Dunkin Donuts Iced Coffee, when I kept it down, worked and I went. Crazy.

    I was then fine again until Thanksgiving 2008... and that's when I knew I had a bladder problem and it couldn't possibly be anything else. See, when I was doing the laproscopy in October, I was given doxycycline, Levaquin, and another antibiotic I can't remember along with Flagyl and the Penicillin (my DNA probe came up overgrowth of Strep B in my vaginal flora). I hadn't had sex and had changed my whole lifestyle. Mild perfume and dye free soap, cotton panties, high fiber, etc. I was just extremely careful about everything. At this point I called my gyno and asked to be referred to a urologist, because the bladder pain and urgency was horrible and I knew there was nothing else it could be. She had me come to her office. Two weeks and five urine cultures later, my urine is normal. She says I have yeast again, I say I'm fine. She gives me 5 Diflucan in a month. Meanwhile, I'm on omepraole (sp?). When my eyes turn yellow from this treatment, I knew I was in liver trouble. I went online and did some research. Yep, the omeprazole was a proton pump inhibitor which means Diflucan wasn't ever working because it was not available due to the proton pump inhibitor. Terrific. Then, she tries to give me macrobid. Marcobid cannot be taken with omeprazole either. At this point, I decide she's not worth my time and I find another gyno.

    The new gyno repeats vaginal DNA probe and urinalysis. DNA probe, just like October 2008, shows overgrowth of strep b. I take penicillin vk. He changes me from Yaz to Yasmin (the bc I was previously on before Jan 07). At this point I stop taking all pills and supplements I had been given for IBS including fiber. I only took Yasmin and occasional miralax for the IBS-C. With diet management and regular bowel movements I noticed my bladder symptoms decreased and the frequency went almost completely away. Then another wave of pain. I call the new gyno back and say my bladder and frequency returned. He referred me to a urologist who did a cystoscope and said I had IC without doing the test for it. All she said she saw was increased vascularity and moderate bowel pressure on the bladder. This diagnosis devastated me, as I had previously researched possible reasons why I was having bladder pain and urgency and the last thing I wanted was a chronic, permanent disease. I tried the IC diet and didn't notice any change in my pain or anything. Then, to test my "I don't have IC theory" I decided to eat and drink all the trigger foods and beverages in one day. No flare. Same mild pain during the day and severe pain at night. No increase or change.

    For the last week and a half I felt pretty good out of nowhere. I already only drank milk and water. (I haven't had booze in four months, and really want a glass of wine. Damn.) So I just stayed eating mild foods and away from the big triggers on the diet. I had normal poos and everything. I felt the best I'd felt in two years. And then Tuesday happened. Bah! Terrible bladder pain. Even with some spare oxycodone I had, I got up 8 times to pee at night. I hadn't had anything bad to eat or drink. I did notice I was constipated. I finally made a poo and felt lightyears better. My mom knew of a good urologist in my area and she was able to get me an appointment with him today because I'm the granddaugther of one of his old doctor friends. He did the cystoscope again and did the actual test for IC. When the first liquid was inserted, my pain was a 3 or 4. When I got the second, it was a 5 or 6. He then inserted the scope and looked around. He inflated my bladder till I thought it would explode. I watched as all the veins on my bladder expanded and I felt my heart sink. He then looked at the top of it and noted that I didn't have cracks in my bladder wall. Also, he said something about the tube that connects my urethra to my bladder being too short and underdeveloped, possibly as a child. He then asked me out of nowhere if I had ever had a recurrent infection. BINGO! Chlaymida 9 months. He then said that the infection combined with the amount of azithromycin I took over 9 months and then all the antibiotics I took after that during the laproscopy probably caused the IC he saw as well as two wee "half circles" on the top of the bladder that he said should be full circles. Whatever that means and whatever that is. I've googled but can't figure it out. He says I have mild IC (I'd hate to experience severe) but will not write it down as his official diagnosis so I can go try and get health insurance since I have none. (I've tried before and was told they won't cover me gynecologically or gastrointestinally for at least 5 years, so I didn't bother getting it.) I was also given a DMSO. God that was awful. Bladder didn't hurt, but the taste in my mouth was making me want to puke. Then after holding that in for two hours I thought my urethra had a fire in it (and it still feels that way five hours later). I was given an rx for Elmiron 3x a day and Ambien to help me sleep at night. He refused to give me narcotics. Even though I'm not an addictive personality and I only take one 7.5/750 vicodin a night to sleep and tough out my pain during the day. And I only take the vicodin when I ABSOLUTELY need it, in the last two weeks for example I only took 5 pills. I really feel like I need vicodin or oxycodone, just to have in case I flare really bad or at night when I just can't sleep. I'm scared to take Ambien because of all the scary stories you hear, and weird stuff always ends up happening to me. I'm also scared to take the Elmiron after hearing about the liver damage and hair loss. Hair loss I can deal with, I have tons of it. The liver damage... I've already had yellowing of the eyes from Diflucan and I just don't know.

    I've been reading a lot on this site about Cystoprotek and Cystaq. I went ahead and ordered a bottle of the Cystoprotek to try and I may do that and just skip the Elmiron and see if I can manage the IC with the Cystoprotek alone since my case is supposed to be mild.

    Anyway, anyone's thoughts or suggestions are welcome. I'm going to continue reading on this forum and site after I give my eyes a computer screen break.

    I do have a few questions if anyone wants to give their opinon...

    1. Do you think that the Cystoprotek alone may help?
    2. Is Elmiron really as scary as it sounds? I'm 24. Should I just go for it in hopes it might cure me completely in 3 months (this is what the doctor inferred)?
    3. Do you find that doctors give you hyrdocodone or oxycodone for pain? As I've browsed the site I noticed a lot of you have them listed as meds, but neither urologist I saw was willing to give me any.
    4. What other pain relief methods do you find work well? I have a TENS unit from a car accident I was in and I've tried that and I get a little relief with that and a heating pad at night.
    5. I'm from Tampa Bay, Florida. Anyone ever want to meet up? I feel really alone and I'll buy lunch :-)
    6. My skype name is jennifer.jericho if anyone wants to chat. I'm on a lot as a recent college graduate with no job and pain. :-(


    Thanks for reading my long, boring story. I wish all of you good health and pain free days ahead!

    xoxo,
    Jennifer
    -Jennifer
    jenjen05

    __________________

    25 years young. Diagnosed with IBS-C May 16, 2007. Diagnosed with moderate IC February 26, 2009. Severe anxiety and moderate depression since middle school.

    Current Meds: 60mg Oxycontin 3x daily (every 8 hours), 30mg Oxycodone 4x daily as needed, 350mg Soma as needed (twice a day), 10mg Valium Vaginal Suppositories as needed (after sex usually, what I call "the nuke" is two of these, and two oxycodone by mouth and one soma by mouth and I can usually prevent a flare if this is done RIGHT AFTER sex along with a cold pack right over my bladder), and Prelief as needed. Heparin 10,000 units installs as needed for rescue needs, usually makes it worse after about 8 hours for the next day or so but then the pain goes away for a few days at least. By following the IC diet I have lost 35lbs and I love the IC diet because it has made me a much healthier person!

    Past meds: 60mg Opana ER 9am and 80mg Opana ER at 9pm, 15mg Oxycodone as needed for breakthrough pain or flares, 350mg Soma as needed (twice a day usually). Hydrocodone 5/500 (two at night with 350mg Soma would get me 6 hours of sleep). Tramadol 50 mg (didn't touch my pain). Elavil 25mg (did nothing). Various installations made me worse every time. Cytotec (don't remember dosage, didn't work).

    Photo below is of myself and my Golden Retriever/German Shepherd/Chow, Daisy May.

    Message me if you'd like to be added to my Facebook!
    Skype- jennifer.jericho

    PLEASE read about antibiotic resistance. It is a growing problem, especially in the United States. We are running out of antibiotics that work effectively before scientists can develop new ones! http://www.fda.gov/oc/opacom/hottopics/anti_resist.html


  • #2
    Hello and !
    To answer your questions:

    1. Do you think that the Cystoprotek alone may help? It is worth a shot it may.
    2. Is Elmiron really as scary as it sounds? I'm 24. Should I just go for it in hopes it might cure me completely in 3 months (this is what the doctor inferred)?--I would give it a try BUT it takes 6 months to a year to work for many!!
    3. Do you find that doctors give you hyrdocodone or oxycodone for pain? As I've browsed the site I noticed a lot of you have them listed as meds, but neither urologist I saw was willing to give me any.--Many doctors
    do NOT give any pains meds. The ones that get meds go to pain clinics. Now this is not everyone but a lot of people.
    4. What other pain relief methods do you find work well? I have a TENS unit from a car accident I was in and I've tried that and I get a little relief with that and a heating pad at night. The heating pad is a great tool for many, how about a hot bath or ice packs, physical therapy, nerve blocks.

    I wish you the best!
    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
      Wow! You've been through a lot for someone your age! I'm sorry you've had to deal with all of this.

      1. Do you think that the Cystoprotek alone may help? I think the only way you will know that answer is in hindsight. I have begun taking it myself, about three weeks now, so I am hoping it helps me!

      2. Is Elmiron really as scary as it sounds? I'm 24. Should I just go for it in hopes it might cure me completely in 3 months (this is what the doctor inferred)? I don't know the answer to this. Lots of people take it with no ill effects. I do think the cure completely in about three months is a bit overly optimistic though! I took it for a couple of years with no hair loss or liver problems that I know of. Being as how you had yellowing of the eyes from Diflucan I can understand why you'd be wary. What does your doctor say about this?

      3. Do you find that doctors give you hyrdocodone or oxycodone for pain? As I've browsed the site I noticed a lot of you have them listed as meds, but neither urologist I saw was willing to give me any. The first thing my doctor said to me was that he will not give me anything for pain. I think the abuse out there of pain meds has ruined this for people who are really in pain and need help to function.

      4. What other pain relief methods do you find work well? I have a TENS unit from a car accident I was in and I've tried that and I get a little relief with that and a heating pad at night. When I can't take it anymore I use OTC products like AZO or Uristat to take the edge off. Increasing my water consumption seems to help. Also sitting in a warm bath.

      I do hope you find some relief soon! And, to the ICN!

      Vicki
      Last edited by VickiB; 02-26-2009, 12:49 PM. Reason: addition
      "The happiest people don't necessarily have the best of everything; they just make the best of everything they have."

      Comment


      • #4
        Thanks for the replies! My doctor didn't seem too worried about the Elmiron and my liver. I have several doctors and nurses in my family that want me to have a liver and kidney function test before I decided whether or not to take it. I think ultimately I won't.

        I tried AZO and Uristat before, and with both I had a delayed, strange reaction. Basically, instead of my urine turning orange or blue within the hour like most people... mine took 6 hours... and I got no pain relief. Another reason I think my liver and kidneys are screwed up. Ugh.

        I need to go get a plug for the bottom of my tub. I was talking to a MA friend of mine who said the doctor's office she works in suggests epsom salt warm bath. Anyone tried that and had luck?

        I've done some more reading around here and I'm going to Walgreens tomorrow to pick up some Prelief and epsom salt and a bath tub drain plug!
        -Jennifer
        jenjen05

        __________________

        25 years young. Diagnosed with IBS-C May 16, 2007. Diagnosed with moderate IC February 26, 2009. Severe anxiety and moderate depression since middle school.

        Current Meds: 60mg Oxycontin 3x daily (every 8 hours), 30mg Oxycodone 4x daily as needed, 350mg Soma as needed (twice a day), 10mg Valium Vaginal Suppositories as needed (after sex usually, what I call "the nuke" is two of these, and two oxycodone by mouth and one soma by mouth and I can usually prevent a flare if this is done RIGHT AFTER sex along with a cold pack right over my bladder), and Prelief as needed. Heparin 10,000 units installs as needed for rescue needs, usually makes it worse after about 8 hours for the next day or so but then the pain goes away for a few days at least. By following the IC diet I have lost 35lbs and I love the IC diet because it has made me a much healthier person!

        Past meds: 60mg Opana ER 9am and 80mg Opana ER at 9pm, 15mg Oxycodone as needed for breakthrough pain or flares, 350mg Soma as needed (twice a day usually). Hydrocodone 5/500 (two at night with 350mg Soma would get me 6 hours of sleep). Tramadol 50 mg (didn't touch my pain). Elavil 25mg (did nothing). Various installations made me worse every time. Cytotec (don't remember dosage, didn't work).

        Photo below is of myself and my Golden Retriever/German Shepherd/Chow, Daisy May.

        Message me if you'd like to be added to my Facebook!
        Skype- jennifer.jericho

        PLEASE read about antibiotic resistance. It is a growing problem, especially in the United States. We are running out of antibiotics that work effectively before scientists can develop new ones! http://www.fda.gov/oc/opacom/hottopics/anti_resist.html

        Comment


        • #5
          Hello Jen and To the ICN..

          As far as Elmiron there are a lot of people that have had success with it. BUT it does take time!!
          As for the pain meds, there are other things out there that CAN help your pain and UROS are more likely to prescribe them.

          Elavil, Tofranil, Atarax, Topamax, Lyrica, Neurontin, Cymbalta, Librax,

          There is also rescue instills that many say work well!

          Then you have alternative meds:
          Cystoprotek, Cysto Q, Glucosamine, MSM, Aloe, Prelief

          AND Do NOT forget about the IC DIET!!! I find this to be the MOST helpful!!!
          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
            Thank you for your reply, leelee88!

            I'm going to try Cystoprotek, Prelief, and Benadryl to start with as well as Epsom salt warm baths.

            Drugs I already take are:
            Yasmin
            Miralax (every other day)
            Beano (occasionally)
            Vicodin 7.5/750 (one during the day or at night if extreme pain, but I'm running out!)
            -Jennifer
            jenjen05

            __________________

            25 years young. Diagnosed with IBS-C May 16, 2007. Diagnosed with moderate IC February 26, 2009. Severe anxiety and moderate depression since middle school.

            Current Meds: 60mg Oxycontin 3x daily (every 8 hours), 30mg Oxycodone 4x daily as needed, 350mg Soma as needed (twice a day), 10mg Valium Vaginal Suppositories as needed (after sex usually, what I call "the nuke" is two of these, and two oxycodone by mouth and one soma by mouth and I can usually prevent a flare if this is done RIGHT AFTER sex along with a cold pack right over my bladder), and Prelief as needed. Heparin 10,000 units installs as needed for rescue needs, usually makes it worse after about 8 hours for the next day or so but then the pain goes away for a few days at least. By following the IC diet I have lost 35lbs and I love the IC diet because it has made me a much healthier person!

            Past meds: 60mg Opana ER 9am and 80mg Opana ER at 9pm, 15mg Oxycodone as needed for breakthrough pain or flares, 350mg Soma as needed (twice a day usually). Hydrocodone 5/500 (two at night with 350mg Soma would get me 6 hours of sleep). Tramadol 50 mg (didn't touch my pain). Elavil 25mg (did nothing). Various installations made me worse every time. Cytotec (don't remember dosage, didn't work).

            Photo below is of myself and my Golden Retriever/German Shepherd/Chow, Daisy May.

            Message me if you'd like to be added to my Facebook!
            Skype- jennifer.jericho

            PLEASE read about antibiotic resistance. It is a growing problem, especially in the United States. We are running out of antibiotics that work effectively before scientists can develop new ones! http://www.fda.gov/oc/opacom/hottopics/anti_resist.html

            Comment


            • #7
              Hey Jenn,

              I am so sorry to hear of all of your problems! And, I am so sorry to hear that you have IC at such a young age...here's a (((BIG HUG)))

              As far as your 10 questions, I will chime in on the ones I know about:

              2. Is Elmiron really as scary as it sounds? I took Elmiron for over four months, and other than the first dose or two, when it made me feel really weird, I had no problems at all. But--I did not have any liver problems at the time, so I certainly understand your hesitancy. However, it would not hurt to give it a try since your urologist doesn't think it will adversely affect your liver. You are obviously in touch with your body so you will know if it causes you any problems. If so, then you can decide whether to stop taking it. And--you might want to follow your family and friends advice and get a liver workup done. That may go a long way in relieving your angst over trying the Elmiron.

              3. Do you find that doctors give you hyrdocodone or oxycodone for pain? As I've browsed the site I noticed a lot of you have them listed as meds, but neither urologist I saw was willing to give me any. While I have read that a lot of urologist's do not give narcotics for IC pain, it may well be the case that it is because you have been diagnosed with 'mild' IC. I take narcotics everyday, but I also have severe IC and without them I cannot function at all. But, Jenn, being dependent upon narcotics 24/7 comes with its own set of problems that I wouldn't wish on anyone!! So please know that I truly hope your IC doesn't progressively get worse! Unless your IC progresses and the pain does get worse--and it can get much, much worse with severe cases--then like many other sufferers of mild cases you will just have to experiment with OTC products to see if you can find some relief. And you may well find some really good relief! Remember: There is no cure for IC, but relief can be found!

              4. What other pain relief methods do you find work well? I have a TENS unit from a car accident I was in and I've tried that and I get a little relief with that and a heating pad at night. I LOVE MY HEATING PAD!! And I am just as dependent upon it at times as I am my pain meds. But be sure to keep it set on LOW as often as possible because I just had to go without using mine for almost two weeks because I got a blister the size of a quarter from falling asleep with it set too high!! The blister didn't hurt really, but having to live without my heating pad certainly did!! So, remember that continuous low/gentle heat is better than no heat at all! Also, even though it doesn't work for me, ice packs help some sufferers better than heat.

              Since you are newly diagnosed, I have a suggestion that I hope you will follow:
              In the world of IC, where there is no cure, there is a certain treatment protocol that needs to be followed in order to determine what will work for you and what won't. As you read these threads you will see for yourself that some things work for some people, but don't seem to help others at all! This is a very unpredictable disease! So, I suggest that you at least try to take whatever is offered to you--regardless of what you read that may scare you--and just see if it gives you any relief or not. Who knows? On the one hand, yes, some of the treatments may not work at all, or have terrible side-effects. But, on the other hand, Elmiron or one of the other drugs in the protocol may really help you a lot! You will never know until you try, and when you get desperate enough for relief, you will try most anything!

              If, however, you have tried all the things offered to you, without significant relief, it is a matter of official medical record that you have fully cooperated with the protocol. Then, knowing what treatments have already been tried successfully--or failed--medical professionals can know better where to go from there.

              The IC journey can be long and frustrating, but many sufferers eventually find some serious relief, if not total remission. So just hang in there--and know you have come to the right place for support! There are many people who are in the same place and can help you navigate the troublesome road of having to live with this incurable disease.

              Take care and
              ~Beth
              Last edited by BT2008; 02-27-2009, 09:39 AM. Reason: clarity
              I am not a physician, so please do not mistake any of my comments as medical advice. I am just a fellow sufferer sharing my experience with IC.

              Scheduled for Radical Cystectomy & Indiana Pouch, July 16, 2009

              Hit with severe pelvic pain on 6/14/08 (7:05pm): GYN, MRI, CT, laparoscopy, colonoscopy: All Clear
              DX'ed with Severe IC: Findings during cystoscopy and hydro-distention on 9/11/08 showed: scattered areas of hemorrhage and glomerulizations, w/bloody efflux. Update: Had second cysto/hydro on 5/21/09: My uro said "there were thousands of lesions" all over my bladder.
              Current Meds: Bladder Instills (self-adm 3 x per week or PRN); MS Contin; Lortab (PRN); Zanaflex; Maxide; Estradiol Patch
              Other helpful remedies: IC Diet (very important!) especially no chemical additives or preservatives; Drink 1.5+ gal. of pH neutral water per day (I test my water frequently! This is very, very important!!); Prelief; Heating pad; and lots of hugs from my wonderful hubby!
              Meds I have tried, but could not take: Amitriptyline & Imipramine (both made me mentally nutzoid, gave me nightmares, and neither one touched the pain); Lyrica (didn't touch the pain either, plus it made me very nauseous after eating and then it triggered my IBS); Cymbalta (didn't touch the pain either and it made me horribly depressed--all I did was sleep and cry!); Percocet (did very little for the pain and gave me headaches); Discontinued using Sodium Bicarb & Kenalog in my instills (it burned really bad!).
              Discontinued Meds: Elmiron (replaced by Heparin in instills); Bentyl (antispasmodic and anticholinergic; Zanaflex works much better for me!); Valium Suppositories
              History: IBS (spastic colon) since 1982; Partial hysterectomy 1985--completed in 2002 with extensive adhesion removal (I think this surgery was my IC trigger!); Non-painful urinary frequency since 2002; No history of frequent UTI's; HPV and abnormal paps 1/07; Sporadic PFD

              Comment


              • #8
                tramadol

                If your doctor won't give you any pain meds, maybe you can ask about tramadol or ultracet. These are non-narcotic pain meds that you still have to get with a prescription. I take tramadol, and while it doesn't totally relieve the pain, it makes life much more bearable. I can at least function on it and it doesn't make me feel loopy. If you IC doctor won't give it, many family doctors will help with it. I'm sorry for your pain and I hope this helps. Good luck to you. They just came out with Tramadol ER (extended release) that you can ask about, so you take less of it. I actually prefer the regular kind. I can tell after about one hour that it has kicked in.

                Comment


                • #9
                  Thank you to everyone who has responded to my post. I appreciate your journeys and your wealth of knowledge and suggestions.

                  I'm still looking in to all my options.

                  As far as Tramadol goes... my friend has chronic back pain and gets huge bottles of it every month. She gave me 10 of her pills to try in January. (Yes, I realize it is dangerous to take other peoples drugs. I come from a family of doctors and nurses and consulted with two MD's and three RN's before taking this drug.) I found that it aggravated my IBS-C and made my constipation 1000x worse. I also felt loopy and anxious on it as well. I consulted with my MD family members and was told that this drug can cause those side effects and that it is best if I don't take it. :-( So I'm having trouble figuring out what else is out there. I bought some Benadryl and I'm going to see if that can't get me to sleep at night.

                  Thanks again for your responses!

                  Jennifer
                  jenjen05
                  -Jennifer
                  jenjen05

                  __________________

                  25 years young. Diagnosed with IBS-C May 16, 2007. Diagnosed with moderate IC February 26, 2009. Severe anxiety and moderate depression since middle school.

                  Current Meds: 60mg Oxycontin 3x daily (every 8 hours), 30mg Oxycodone 4x daily as needed, 350mg Soma as needed (twice a day), 10mg Valium Vaginal Suppositories as needed (after sex usually, what I call "the nuke" is two of these, and two oxycodone by mouth and one soma by mouth and I can usually prevent a flare if this is done RIGHT AFTER sex along with a cold pack right over my bladder), and Prelief as needed. Heparin 10,000 units installs as needed for rescue needs, usually makes it worse after about 8 hours for the next day or so but then the pain goes away for a few days at least. By following the IC diet I have lost 35lbs and I love the IC diet because it has made me a much healthier person!

                  Past meds: 60mg Opana ER 9am and 80mg Opana ER at 9pm, 15mg Oxycodone as needed for breakthrough pain or flares, 350mg Soma as needed (twice a day usually). Hydrocodone 5/500 (two at night with 350mg Soma would get me 6 hours of sleep). Tramadol 50 mg (didn't touch my pain). Elavil 25mg (did nothing). Various installations made me worse every time. Cytotec (don't remember dosage, didn't work).

                  Photo below is of myself and my Golden Retriever/German Shepherd/Chow, Daisy May.

                  Message me if you'd like to be added to my Facebook!
                  Skype- jennifer.jericho

                  PLEASE read about antibiotic resistance. It is a growing problem, especially in the United States. We are running out of antibiotics that work effectively before scientists can develop new ones! http://www.fda.gov/oc/opacom/hottopics/anti_resist.html

                  Comment


                  • #10
                    I posted this in the "Causes" of IC area as well, but since it's a part of my ongoing story, I thought I'd post it here too.

                    "I've been talking to my gyno and uro, and that got them talking to each other... and then all three of us together....

                    My uro says that over 90% of his female patients with IC all have tested positive for an overgrowth of strep b vaginally before starting to experience IC symptoms. And he sees LOTS of IC patients.

                    This would be me. Pain started end of September 08, tested positive for strep b in October 08 a week before I had a laproscopy, treated with penicillin post-laproscopy as well as Levaquin for 14 days and Doxycycline for 14 days (laproscopy revealed mild PID). Symptoms went away until the beginning of December. Had not been diagnosed with IC or any other problem during this time frame. Symptoms increased through January. Saw gyn, tested positive for overgrowth of step b again, penicillin vk this time. Symptoms declined, but did not go away. Later, symptoms increase right before I go see a urologist January 19. She says she "thinks" I have IC during in office cysto. Prescribes Cytotec and tells me to buy Cystaq online. I go home, look up Cytotec, come across this site.... I decide not to take Cytotec. I had bad periods already and it just sounded too scary for me. I also decide she's wrong about my diagnosis and is a quack. lol

                    I go into nearly a complete remission January 28-February 26 with very few symptoms, mostly only enough pain to keep me from sleeping a couple nights a week. I see a second, well respected and family known urologist February 26. He does potassium test - cysto w/hydro - and a DMSO instill in office. I'm fine that afternoon. Then pain (and anger) for exactly a week after. During this time, I finally except I have IC and begin the IC diet. He prescribes Elmiron and Ambien. I decide I don't want to take Elmiron, for now, after visiting this forum and reading. I decide to try Cystoprotek by itself first. I also decide not to take Ambien, because I had a friend die sleepwalking on it a year before.

                    I call him back after more reading on this forum and tell him I want to try Elavil. He gives me some. I then realize they cause sun sensitivity. Bah. I live in Florida. This isn't going to work. I'm a beach bunny. Ugh. So I stop taking that after three pills (it really wasn't helping anyway). I tell him to just give me 10-20 vicodins. I'm not in a ton of pain, diet alone seems to be working. Just give me a few pain pills for in case I flare really bad and need to sleep. So far.... I've only taken two vicodins at night after being able to recognize problem foods. No pain, or barely any, in a week now. I also started Cystoprotek this same week, but I've read it takes a while for it to work, so I don't think that's it, yet. But I have noticed, as I'm keeping notes on my "House, MD" calendar, that I flare the week before my period, much like ya'll.

                    So, being a junior "House," I call my gyno and have him consult with my uro about my theory I've developed. (I come from a family of doctors and nurses, even though my bachelor's degree is in communications and creative writing, the bug has now bit me!)

                    Without further ado, here is my theory as to what caused my IC. Keep in mind, many of you have never had strep b, so it alone is not the only cause of IC, clearly. But for me, I believe it caused mine. And many others IC....

                    I believe (as does now my uro and gyno) that an overgrowth of strep b was what caused IC in me. So we all believe (lol) that what is happening is cyclical in that I am relatively fine with little to no pain until the week before my period when I go off my birth control pill. When this occurs, all my IC symptoms flare... we believe that during this time is also when the overgrowth of strep b occurs and that the strep b may indeed be controlled somewhat hormonally by the birth control pill, and when I go off of it, it keeps overgrowing and then going latent again. Make sense?

                    Anyway, were going to test my theory. I was treated with pencillin vk last January, in theory, this should have fixed me or at least killed off the overgrowth. Sooo... we've made an appointment for three days after I go off the active birth control pills which will be in 14 days. We're going to do a DNA probe and see if I come back strep b positive. If so, we will send the sample on to get a culture and sensitivity and find out what drug, if any, could kill this off. My theory is that the strain of strep b I have, and many of you have had prior to being diagnosed with IC, is a rogue strain that has mutated and is seriously screwing with us, and causing our IC. If we could figure out exactly what drug treats it, perhaps we could get rid of it from our bodies, and while the damage to our bladders has been done, perhaps killing off the strep b once and for all might prevent further damage. That's the idea anyway. If it comes back normal run of the mill strep b in the culture and sensitivity that responds to penicillin (which I don't think it will), were going to hospitalize me for a week and put me on IV penicillin, which is way better than oral.

                    If it comes back penicillin resistant or completely untreatable... well, we'll have to go from there.

                    Thoughts? Questions about my "House" like theory?

                    And once again, just to clarify, I realize that not all of you have been diagnosed with strep b before, during, or while in remission from IC. But MANY have, including me. I believe this is worth looking into, and I might as well be the guinea pig that finds out. Cause I'm just investigative like that. lol"
                    Last edited by jenjen05; 03-10-2009, 04:55 PM. Reason: got some dates wrong
                    -Jennifer
                    jenjen05

                    __________________

                    25 years young. Diagnosed with IBS-C May 16, 2007. Diagnosed with moderate IC February 26, 2009. Severe anxiety and moderate depression since middle school.

                    Current Meds: 60mg Oxycontin 3x daily (every 8 hours), 30mg Oxycodone 4x daily as needed, 350mg Soma as needed (twice a day), 10mg Valium Vaginal Suppositories as needed (after sex usually, what I call "the nuke" is two of these, and two oxycodone by mouth and one soma by mouth and I can usually prevent a flare if this is done RIGHT AFTER sex along with a cold pack right over my bladder), and Prelief as needed. Heparin 10,000 units installs as needed for rescue needs, usually makes it worse after about 8 hours for the next day or so but then the pain goes away for a few days at least. By following the IC diet I have lost 35lbs and I love the IC diet because it has made me a much healthier person!

                    Past meds: 60mg Opana ER 9am and 80mg Opana ER at 9pm, 15mg Oxycodone as needed for breakthrough pain or flares, 350mg Soma as needed (twice a day usually). Hydrocodone 5/500 (two at night with 350mg Soma would get me 6 hours of sleep). Tramadol 50 mg (didn't touch my pain). Elavil 25mg (did nothing). Various installations made me worse every time. Cytotec (don't remember dosage, didn't work).

                    Photo below is of myself and my Golden Retriever/German Shepherd/Chow, Daisy May.

                    Message me if you'd like to be added to my Facebook!
                    Skype- jennifer.jericho

                    PLEASE read about antibiotic resistance. It is a growing problem, especially in the United States. We are running out of antibiotics that work effectively before scientists can develop new ones! http://www.fda.gov/oc/opacom/hottopics/anti_resist.html

                    Comment

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