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  • New & Desperate!!!!

    Hi, I have visited this site many times before, but i have only just plucked up the courage to join in. I am currenty having another flare (this one has lasted a month so far.) Today is a bad day! I was only diagnosed with IC by my doctor this February. But my pains have been with me all my life, I started with UTI's when i was just 13 months old (I am now 38), i have seen numerous urologists and had numerous operations (non successful), like many others i was also told it was all in my head and to just go away and get on with my life. Until recently i was only ever prescribed antibiotics, these would sometimes work, but more often than not they would never help as they would never find any infections in my urine. I am currently waiting to see a gynocologist. I am taking Vesicare and mefenamic acid, along with ibuprofen for the pain. Non of these seem to be doing anything. i am from the UK and have to import The Azo tablets, i find that these are the only thing that can sometimes help ease the pain, we do not seem to recognise IC in the UK as much as you do in the USA. My family are supportive but i dont think they fully understand what i go through. The pain is so different from day to day that i find it difficult to understand myself. All i know is that it is debilitating, on days like today i cant walk!!! I feel down and depressed and hate the fact that i find myself feeling useless. I found i was having a flare up once every three weeks, just before my periods, and they would only last for one maybe two weeks, but i am now finding that i can have a flare up lasting upto 3 months, then i will go back to once every three weeks. Has anyone else discovered a link with their hormones??? I am sorry i went on so much, it is just nice to finally find people who can understand.

  • #2
    It is all so overwhelming when you're first diagnosed and trying to find out what works for you. It doesn't sound like your doctors protocol is the same as here but that doesn't mean he's wrong. Try to find someone who has worked with IC patients. Have you tried the diet? For some it's very helpful for me not so much. I have been in remission for 8 years so there is definitely hope. I think in my case it was first the Hydro then the meds Elmiron and Elavil that put me in remission but we are all so different. I think there is definitely a hormonal link but my IC started when I stopped taking hormone replacement therapy. I'm now back on those meds but have to have frequent mammograms and pap smears. I hope you feel better soon. We know the anguish you're feeling.

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    • #3
      to the IC Network.

      I know you will find helpful information and support here. Are you following an IC diet? If not, I suggest you begin today. You'll find the link to the latest food list in my signature below.

      Another thought --- many ICers, including me, have a problem with ibuprofen.

      Warm hugs,
      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

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      • #4
        I hope you can find a knowledgeable IC specialist soon & can start to feel better. It sounds like you have been through so much. Read all about treatment plans here & take the info to your urologist.

        Comment


        • #5
          Thank you for your kind words and advice. I have looked at the IC diet and i have certainly discovered that coffee is a no no for me. Some alcohol also irritates me. I can't say that i have noticed any foods that affect me yet, but i think maybe i need to keep a better diet diary to see if i can see any links. I have been in terrible constant pain for the past month, some days worse than others. Monday was a particularly bad day, my husband took me hospital because i was in so much pain he didn't know what to do to help me. The doctor there was very nice, they gave me some dihydracodeine which did help, so i am now taking that to help ease the pain. I have got to go and see a urologist again. I have lost faith in the urologists here, i have seen numerous over the past 38 years and not one of them has ever mentioned IC to me, let alone any possible treatments. One told me that they dont know what it is and that i will have to learn to live with it, another told me it was all in my mind. I will certainly take all the details from this web page next time though, and hopefully i will get the same sort of help some of you get in the USA. Thank you again, i cant begin to explain how comforting it is to know that there are people out there who understand.
          Last edited by sharon73; 08-24-2011, 09:13 AM.

          Comment


          • #6
            I pray that you find compassionate care. I believe as you continue this journey, Light will be provided for the next step. So many of us lead productive lives with IC. The trick is finding the treatment that is right for you. We are all different yet the same.


            On this site, you will find wisdom, strength, and hope. I have learned so much since I joined.


            Have the best day you can. Continue to your meds as prescribed and rest as much as possible. Stress is one of our greatest offenders.

            Welcome

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            • #7
              1.Get on Elmiron 100mg three times per day as soon as possible. It coats the bladder -like a lotion.
              2. Get on Elavil ( amytriptilline) 25mg at night. This can be increased with time. This blocks the pain message in the nerve from the bladder to the brain
              3. Follow the IC diet strictly
              4. Get some narcotic pain medication such as Hydrocodone-acetominophen for when you feel terrible.
              5. Try stretching, yoga, baths and heat
              6. Be patient- it may take time for this to work but YOU WILL GET BETTER!
              Good luck!

              Comment


              • #8
                Today is a better day, i can't understand how I can be in agonising pain one day and just have niggling pains the next, It's like the difference between a roaring flame and a smouldering fire....but hey, I am not going to complain, i will make hay while the sun shines and just enjoy the day.

                Thank you for the advice with medication, I think we have a problem in the UK with Elmiron, I have never been offered it, and from what i can gather from my research it is a bit of a post code lottery. Basically we have to import it from the USA and it all depends which hospital you go to and whether they are willing to pay for it. I think I could get it privately but that would cost me a fortune, I have no insurance as we dont really need it in the UK because we have the NHS. Also Hydrocodone is not available in the UK, i believe it is registered as a Class A drug, I can however get the weaker dihydrocodein, which i am taking, so at least i am on the right track for pain relief. I will certainly ask about the amitriptilline, i think that is available here. I am taking Vesicare, although that only seems to help ease the bruised feeling i sometimes get in my bladder, it does not help keep all the other symptons at bay. I am still very curious to see if my hormones are playing a huge part in the flare ups I get, as i was noticing a pattern between time of flare up and my periods, and i wonder if some sort of birth control medication would help. Is there anybody out there using birth control to help? Also, can anyone recommend a good IC Cookbook, i am wanting to really work on the IC diet and i think i need a little help & inspiration.

                Thank you x

                Comment


                • #9
                  Elmiron, etc.

                  You can purchase Elmiron from Canadian pharmacies for about $150 dollars for 100 pills. You would need a prescription from your doctor. It is worth its weight in gold!A good cookbook is "A taste of the Good life" by Bev Laumann. A great physcial therapy book is "Ending Female Pain" by Isa Herrera. Good luck!

                  Comment


                  • #10
                    Originally posted by sharon73 View Post
                    Today is a better day, i can't understand how I can be in agonising pain one day and just have niggling pains the next, It's like the difference between a roaring flame and a smouldering fire....but hey, I am not going to complain, i will make hay while the sun shines and just enjoy the day.

                    Thank you for the advice with medication, I think we have a problem in the UK with Elmiron, I have never been offered it, and from what i can gather from my research it is a bit of a post code lottery. Basically we have to import it from the USA and it all depends which hospital you go to and whether they are willing to pay for it. I think I could get it privately but that would cost me a fortune, I have no insurance as we dont really need it in the UK because we have the NHS. Also Hydrocodone is not available in the UK, i believe it is registered as a Class A drug, I can however get the weaker dihydrocodein, which i am taking, so at least i am on the right track for pain relief. I will certainly ask about the amitriptilline, i think that is available here. I am taking Vesicare, although that only seems to help ease the bruised feeling i sometimes get in my bladder, it does not help keep all the other symptons at bay. I am still very curious to see if my hormones are playing a huge part in the flare ups I get, as i was noticing a pattern between time of flare up and my periods, and i wonder if some sort of birth control medication would help. Is there anybody out there using birth control to help? Also, can anyone recommend a good IC Cookbook, i am wanting to really work on the IC diet and i think i need a little help & inspiration.

                    Thank you x
                    Hello! and to the ICN! After reading your posts, I keep hearing you mention terrible periods and horrible flare-ups during these times. It is also possible that you could be flaring while you are ovulating. To me it sounds like you may have Endometriosis. It is very often a co-existing condition to IC. Also, Drs often find pelvic adhesions when they find Endo. Endo is something your Gyno can look into for you. Also, many Gynos are now very knowledgable about IC and treat it. (My Gyno is the one who has been treating my IC for the last 8 years.) Many IC patients actually prefer to see a Gyno for this instead of a Uro, simply b/c Gynos deal exclusively with women all day long and generally seem to have a much better bedside manner than Uros. (JMHO!)

                    Anyway, Endo is something that usually needs to be ruled out anyway before an IC d/x is usually made, particularly if the woman seems to have a hormonal component to her symptoms and pain (as you appear to have.) (By the way, horomones feed Endo. That's why after Endo is removed, (and often after a women has a total hysterectomy if the Endo is severe enough), then many Drs dont want her to take hormones (like the Dr. would r/x after a hyster in usual circumstances.) That's because the Estrogen feeds the Endo, and endo can still grow back even after a hysterectomy, in places like your bladder.

                    So please make an appt with your Gyno to have Endo ruled out. By the way, the ONLY way to check for it is to do laproscopic surgery. If they find it while looking, they can remove it while they are in there looking. (And if I were a betting person, I would bet big money that you have Endo.)

                    But, like I said, Endo and IC are often co-existing conditions. So, until you get the d/x of IC, my suggestion would be the following:

                    1) Go ahead and start the IC Diet. If you DO have IC, it will help alot, and if you dont have it, it wont hurt you one bit.

                    2) Start keeping a journal to include a voiding diary. (Write down how many times a day you are voiding and if you get up at night to go. Explain the feeling when you do go, (whether it is an urgency or not, if the urine feels hot, if you have a burning feeling, if you feel like you arent getting it all out, etc.)

                    3) Also include a section devoted to a pain diary in your journal. Write down how you feel throughout the day, (Upon waking, before and after meals, if the pain is constant or comes and goes, if activites make it worse such as walking, sitting, bending, sex, repetitive movements, if the pain is one sided or all over, if it is pulling pain, stinging, burning, tingling, etc.) Then, write down what makes it better (sitting, laying down, resting, ice, heat, baths, meds, bowel movements, your period, ovulating, urinating, etc.) Write these things down at different times during the day.

                    4) Then, keep a section of the journal for a food diary. Write down every single thing that goes into your mouth, and how you feel afterwards. If taking acid reducers like Tums or other things make you feel better, (Lots of ICers take Prelief to take most or all of the acid out of the foods they eat b/c IC bladders HATE acid.) So write those things down too.

                    I know it seems like you will be writing all day long if you do this, but I promise you that if you take the time to do this, (even if only for a few weeks to a month), then 2 things will happen. First, you will start to notice patterns of things that help you feel better and things that make you feel worse. Second, when you take this with you to show your Dr, it will help him or her immensely and it will save you several months (maybe even YEARS of Drs appts because it will help them help you!

                    Meanwhile other than the IC Diet and Journaling, you can ask your Dr. to r/x either Pyridium or Utira C. These will help you with some of your bladder pain, frequency, and urgency and with the burning sensation when you go. You can also try taking OTC antihistimines, since these help a lot of IC patients too. When you are on your period, a heating pad will be your best friend. (I bought 2 of them, one for my pelvic pain, and one for my back pain during my period.) Not to be too personal or anything, but I am just curious...do you also get bad diarrhea during your periods? I was just wondering, because I always did with mine. (I dont know if this was from the Endo or what, but between the cramping from my period, and the cramping from the IC, the cramping from the Endo, and the cramping from the diarrhea, let me just tell you, I was in ALOT of pain! It was INSANE!!!!) Anyway, I was just curious!

                    Well, I hope that you get d/xed with whatever is causing you all this pain very soon so you will be on the road to feeling better. I am so glad you at least have access to something decent that is OTC for pain. (The one you are taking is by r/x only here. ) The only legal OTC things here for pain are pretty much Tylenol and Ibuprofen, and most ICers cant take the latter.)

                    I hope you feel better soon!

                    Sending hugs,
                    Amaranthe
                    I am not a medical professional. I do not give medical advice. In all cases, I urge you to talk to your Dr. about your treatment options.

                    D/Xed 2003 with IC. Also have the co-existing condtions of VV, Vulvadynia, Lupus, Fibro, GERD, CPP, Endo, & Adhesions, and Depression

                    Meds: Estrogel (due to total Hyster)
                    The meds r/xed by my Pain Dr. from the Pain Clinic are as follows: Morphine ER and IR, Baclofen, and Lyrica and Seroquel (used off-label as a sleeping pill, but it also helps with depression)


                    (I listed my meds in case someone reading this has been told like so many ICers that Drs dont r/x pain meds for IC.) I want you to know that there ARE tons of us who are also dealing w/this disease and the pain and many of us ARE on pain meds.)


                    John 3:16 For God so loved the world that he gave his only begotten son, that whoever believes in him shall not perish but have everlasting life.

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                    • #11
                      Thank you for your advice, the diary thing is a really good idea, i did start something similar back in December because i was in a lot of constant pain for 3 months or more, i just found that once i began feeling well again i forgot to do it so much, i know i need to be more commited to doing it on a daily basis. I never included the food part though, i only recorded my level of pain. My doctor was also concerned about the possiblity of endo - i did have some tests including an ultra sound and he said nothing showed up so he ruled it out. I also had various other tests, including blood tests (checking my hormone levels), urine samples cultured, and swabs to check for any other possible infections etc.. Every test i had came back normal, no infections, no possible cause for the pain i am having. I have not had laproscopic surgery though so i will mention this to my gyno when i go next month. As i said in my previous thread i have suffered with these pains all my life, i have had numerous cystocopies and stretching of the uretha, but this never worked, i would be ok for a couple of months but the pain would come back again. The last one i had was 7 years ago, i would not go back as the urologist i was under told me he could find nothing wrong in my bladder and told me it was all in my mind. Over the past couple of years i have found the flare ups are getting more and more often and on some occasions are lasting for longer periods of time (it would only normally last for a week or 2 at the most now can last for months!) I have also noticed the link with my periods and i am wondering if there is something else going on in there now. In answer to your question, no i do not get diarhea during my periods. I do find that when i am in a flare up though i just dont go at all, i would not say it is constipation as i dont get the pain that goes with that, i just dont have the urge to go (sorry if thats too much information everyone). I too use heat pads and would not be without them. The pain killers i am on now are prescribed, not over the counter, I am lucky though because i only have to pay £7.50 for each prescription, so my doctor can prescribe me as many as he wants and it will only cost the same. (one good thing about the UKs NHS). I have made a note of all the medication you have recommended and i am going to take this list with me. Thank you so much for all your advice, i do think the diary will help as i already know certain activities and drinks don't help, like i find i cant run around all day doing chores etc or i will end up in pain, i find i need to take time out to sit down and rest. I cant cycle for long periods of time, i cant run or go to the gym to do strenuous excercise, i cant drink lager or coffee, i think doing the diary you have suggested will highlight other things too, possibly some may surprise me. I am feeling a lot more positive about seeking help through the gyno, and even a new urologist now as i can go armed with all my new found information and advice from my fellow sufferers - Thank you all so much x

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