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  • eilostnyc
    replied
    Scared to take Elmiron

    I am new to IC and have not been diagnosed but have the symptoms for the past 6 weeks. Have had frequency for a few years but suddenly got worse and pain in pelvis one early Sunday morning in August and had awful pain in bladder area. Went to urologist said I did not have infection, gave me Sanctura SR which landed me in the hospital with heart palpitations. I was given vicodin and sent home. Went back to urologist (heartless urologist) who scheduled me for Urodynamics end of September, so I am supposed to sit here with no pain meds until when? I decided to go to urologist #2 who did urodynamics and cystoscopy same day (that was fun) and said nothing is wrong must be neurological. Went to neurologist did mri's and nerve test, no nothing wrong there. Went to gyn dr and she said sounds like IC and here is a RX for Elmiron but I am so scared to take it because it is a blood thinner and I am prone to nose bleeds especially this time of year when the weather gets cold and dry ( I have very sensitive nasal membrane) due to over use of nasal sprays in the past, so just don't know what to do. I have tried Elavil but it gave me heart pounding and skipped heartbeat but it DID take away the pain, cannot win. Xanax takes the edge off but how much of that can I take? I am waiting to see a pelvic pain specialist ( she is a urogyn) but that is Nov 10th. I will take any suggestions please. I am ultra strict on the diet and take prelief if I think anything may be acidic . I am also taking Cystoprek but its so expensive, God! Thank you everyone for all your posts it is so comforting!

    Originally posted by Barbm View Post
    Note from ICNDonna: The following are only suggestions --- what works for another IC patient may not work at all for you.



    1. try Elmiron. this is like lotion for your bladder
    2. Add amitryptilline.25 to 50 mg. This will block the pain signal that goes from bladder to brain
    3. Add ranitidine 300mg daily. This is an H2 blocker and stops the degranulation of mast cells that causes the pain.It is commonly used for heartburn and can be obtained over the counter.
    4. Follow the ic diet carefully
    5. Do vaginal stretching and pelvic physical therapy.. You can find some great books for this on this web site.
    6. Get some narcotic pain medication for severe pain
    7. Do all the above and then be patient.. YOU WILL GET BETTER BUT IT WILL TAKE TIME!

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  • Omaklackey
    replied
    Woke up to wet rainy miserable fall day and boy am I having a hard time without the coffee. Last winter I made the switch to decaff because the caffeine was really hard on my body. Trying to not have any coffee... well that is a lot harder on a day like today!

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  • Omaklackey
    replied
    I got the catheter supplies ordered up but I don't know how I'm going to get the syringes, needles, meds, etc... I asked at Walmart today and they didn't have any of the things I need on my list.

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  • ICNDonna
    replied
    It will get easier --- congratulations --- you DID it.

    Warm hugs,
    Donna

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  • Leslieann0605
    replied
    You should be so proud! You did it!

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  • Omaklackey
    replied
    OMG!! I went to my sister in laws (she just got her RN) and had her help me get my meds/cocktail all drawn up. I was shaking and sweating and I was hoping she knew how to do the cath, but she has only done math caths. She offered me her bathroom when I explained how embarrassed I was about doing it at my moms. The Dr's. office forgot the viscous lidocaine jelly for the cath so then I had to call about that and get a script. Then I am shaky and crying and freaking about about having to cath myself. We got everything ready and I sat on the toilet. My hubby bought a mirror that I was able to set between the seat and lid and it swiveled so I could see what I was doing. So here I am in my sister in laws bathroom, she stayed outside the door in case I needed help. I got the cath in the "hole" but it wouldn't go in. I wanted to bawl, the sweat was pouring down my face and I was shaking. I finally asked my SIL to get my hubby. :-[He came in and kneeled in front of the toilet and tried to help. I finally realized what was wrong and I had to lean back and it worked! I got the cath in! Of course then I was holding it and trying to figure out how to get the installation in and the end doesn't fit on the 20cc syringe correctly and we got most of it in and pulled out the cath. By the time I got done I felt like I had run a marathon. I'm totally taking a shower tonight because the sweat was literally dripping into my eyes because I was freaking out so bad about all of this. It didn't hurt at all! I was given the smallest Ped caths. and its so tiny and once I figure it out I should be able to do it pretty quick. I'm supposed to do it 3x a day just at the beginning until things get healed inside. But anyways... that was my horror story for the day. I'm calmed down now but it was very stressful, very, very stressful! I know my SIL would have helped but I just couldn't get over the embarrassment and she at least helped me get my meds mixed since I have never done that before. All in all, quite an interesting experience. My body sucks by the way!!! :P

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  • Barbm
    replied
    It sounds like you have found a very supportive doctor! That is wonderful! You will get better !!!!!

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  • Julie B
    replied
    I am glad that your first instill went better than you expected. Did the instillation itself help?

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  • curlycue
    replied
    prayer req.

    and God is in control, thanks

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  • Omaklackey
    replied
    Thanks for the suggestion BarbM, I will definitely order that one! I had a good appointment today. I did get my first instill and I was shaking like a leaf by the time she did it because I was so terrified of the pain. It wasn't super bad, but doing it myself should be... interesting! The used a ped cath, and ordered an even smaller one for me. My Urethra is major sensitive and It hurt like fire when I finally peed out the instill an hour and a half later. We are staying at my mom's for the next few days. I'm not sure I'm brave enough to try the instills here. I may wait until I'm home. Kind of an awkward thing to do 1st time, NOT in my own home. Dr. Mosbrucker is so awesome. She asked me how I was doing, and how my pain was and how many dilatid I had left and gave some suggestions about the bowel issues I've had and then she left and came back in and says: "you should have more Dilatatid, you don't realize how much work we did, you need it" and handed me a script. How cool is she!

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  • Barbm
    replied
    Omaklackey, Buy the book "Ending female pain" by Isa Herrera. You can do the therapy at home.You can buy from here.

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  • Julie B
    replied
    I am so sorry you have been having problems with endo and IC. I don't do well with catheters myself, so I would be just as nervous as you. Hopefully, they can use lidocaine on the catheter...

    The good news is, as people have already said, you CAN and WILL get better eventually.........Sending you understanding hugs.....

    Leave a comment:


  • Toto
    replied
    Maybe someone here's knows of a thread.

    That stinks that PT is 2 hours away. There's no other option??? You might consider it twice a month if you can afford it. You could at least get the exercises and tips from the PT.

    Hope you get other answers.

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  • Omaklackey
    replied
    Dr. Mosbrucker does want me to get PPT but I would have to pay for it myself and the nearest one is 2 hours away. I haven't decided how to do that...
    And She also suggested coming here for help. I have been making a list about things to ask. I also have a notebook I bring with me every where with all of my issues/charts/notes etc. I was wondering if there was a thread with things to ask though?

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  • Toto
    replied
    Originally posted by Omaklackey View Post
    I'm on ranitidine and pantoprazole already for stomach issues, and zyrtec, hydroxizine and flonase and my night stand looks like an old lady lives in my house. I have two drawers of medicine that I take. Its kind of frustrating, but If I could find one that worked it would be awesome! My doctor did give me tramadol for pain and flexeral for the pelvic spasms. I can't take amytriptiline. I was on it for six months after my hysterectomy and it was awful. I'm really scared of the bladder installations though which is what she wants to do. Anything down there is unbelievably painful!!
    Oh my gosh. I cracked up laughing when I read the first sentence of this post. Not that there's a defining "old" age...but as for me...I have so much medicine in my closet it looks like I'm on death's door. LOL... Sorry...have to chuckle about these things once in a while.

    Omacklacky...I agree with the suggestions Barbm gave. Perhaps writing some of those things down that she suggested would be useful. If you are not emptying your bladder you might need some PT to help with the muscles surrounding the bladder areas. When they are tight/constricted (from stress, etc...) they can cause issues with emptying the bladder. I have that issue and am in PT. (of course you may have different issues but it wouldn't hurt to ask)

    I hope things get better for you.

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