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  1. #1
    ICN Member
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    May 2015
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    I Feel Like Such A Failure...

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    I call my IC "The Beast" because I've been grappling with it since last Halloween, when I had to go to the ER. The ER doctor said it was a simple UTI, but it didn't go away; it got worse. One doctor said it was a kidney stone, but the 2 X-rays never showed kidney stones or anything else.

    I went through just about every medicine to stop the urgency and frequency, but no luck. I always had some bad reaction to everything, from headaches to nausea to fainting. The only thing I could tolerate was pyridium, but of course, I wasn't allowed to take it for more than two days at a time.

    Finally, I went to a well know uro-gyn, who diagnosed me with IC and pelvic floor disorder. He told me to do six weeks of bladder instillations, go on Elmiron for three months, and do physical therapy for six weeks. I went to physical therapy for seven weeks, and the PT thought I was ready to graduate. The doctor says "No, you're not ready to graduate yet; your muscles are still too tight."

    I've been dealing with depression and anxiety all my life; I took Elmiron for six weeks, and it deepened my depression into suicidal thoughts, so I've quit it, with the doctor's permission. I feel so tired and weak all the time, I'm up to my ears in medical bills, and the Beast is as bad as ever. I stick to the diet and I do the exercises and none of it does any good. I cry almost every day at the thought of having this horrible disease for the next thirty or forty years of my life.

  2. #2
    ICN Member
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    Sep 2013
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    1,863

    Re: I Feel Like Such A Failure...

    Please consider measuring your estrogen levels, if you are woman. Actually vaginal estrogen cream can help you, but you can start already before speaking with doctor to use organic coconut oil vaginally and also vaginal probiotics and oral probiotics, also vitamin D is suggested. All of those can not hurt. But please find out about estrogen,estradiol cream has made really miracles with me last 2 months (next to Uracyst instills, but those alone did not do the trick.)

  3. #3
    ICN Member
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    Re: I Feel Like Such A Failure...

    You are not alone. My heart goes out to you. I am in the same boat except I have been dealing with IC for the last 10 years, and I agree it is awful. I like you am very sensitive to most medications and get side effects as well. It really sucks. I just wanted you to know you are definitely not alone. what other treatments have you tried so far?

  4. #4
    ICN Founder icnmgrjill's Avatar
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    Re: I Feel Like Such A Failure...

    I wish I could give you a hug right now, look you in the eyes and say "You ARE NOT a failure. You've done absolutely nothing wrong. IC says nothing about you, your heart and your soul. You're hurt.. your bladder and/or your pelvic has been injured and your job now is to create an environment that will help your body heal."

    The challenge here is that you're really not sure what degree your bladder wall is involved vs. your pelvic floor. It could be both...kind of like the old question.. which comes first the chicken or the egg. In our case, it's which comes first.. the bladder or the pelvic floor. Usually they are both involved.

    #1 - So.... first of all... it's very important that you get some help coping with that depression and anxiety. Ask for a referral for a counselor who can guide you through these emotions. It's important that you not fall into a pattern of thinking that you are less than you were. IC doesn't change your heart, your soul, your intelligence and your spirit. You are still a lovely, precious woman... Keep reminding yourself of that. I, too, went through some very difficult times as I learned about IC and struggled to find a treatment but I made it through and am symptom free most of the time now. If I can do it, you can too... but you have to ask for help. I took a fantastic anxiety class at my local hospital which totally changed my life and I haven't had a major panic attack since I took it. My only regret is that I didn't take it ten years earlier. I sure could have used that in my 20's!

    #2 - For the bladder wall, think about how you can protect it... i.e. by following diet AND by perhaps trying some things that can coat it. Most patients try the supplements before they try Elmiron because they have far fewer side effects. So did you ever consider CystoProtek, CystoRenew or Desert Harvest Aloe?? That's an option thats listed in the AUA guidelines and can provide that coating effect.

    #3 - If your doctor says that your muscles are still tight, then they are still tight. Having pelvic floor dysfunction basically means that your muscles forget to learn how to relax... that they get stuck in a muscle tension pattern. Many patients mistakenly assume that the visit to the therapist is the most important part of treatment but it's not. It's what you do at home that really counts. If the exercises and stretches they gave you aren't helping as much, you should consider looking too at the exercises suggested in two books: Heal Pelvic Pain by Amy Stein and Ending Female Pain by Isa Herrera. We also have two very good guided relaxation CD's specifically created for pelvic floor dysfunction that can walk you through relaxing those muscles. Listening to it atleast once a day is vital. And, lastly, we also have a DVD called Ending Abdominal and Pelvic Pain that could have some ideas for you. You can find all of those in our shop at: http://www.icnsales.com

    Don't give up! You CAN do this. We believe in you!!! Now it's time to get to work, kick some PFD ass and let's see if those symptoms resolve with some consistent work! (six weeks isn't very long... you may need to work on them for several months to really get those muscles functioning normally again).

    Hugs!

    Jill O.
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  5. #5
    ICN Staff ICNDonna's Avatar
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    Re: I Feel Like Such A Failure...

    I totally agree with Jill. It can take some time for you to be able to gain control, but you can do it! It took time for me to learn how to deal with my IC, but (like Jill) my bladder feels good most of the time.

    Sending welcoming hugs,
    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

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

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

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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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    Anyone who says something is foolproof hasn't met a determined fool

  6. #6
    ICN Member
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    Re: I Feel Like Such A Failure...

    Hang in there! You have been given some great advice by some very experienced ladies! I know how you feel. I was diagnosed only a few short months ago as well and my depression and anxiety is full blown now. I am seeking help. Which in hind sight I should have done a long time ago as now I can recognize I have been in denial that I need help for my anxiety and depression. So I am looking at IC as giving me that needed nudge to finally admit I am not Super Woman and it is OK to say I need help sometimes. Patience is not a virtue of mine and I am now learning to be patient. I have had many days already of feeling like giving up and some days I do just have to let it go and realize not everything is in my control. Someone once said getting a diagnosis of a chronic pain condition, the individual goes through the stages of grief. For me that has been true. Nothing is left now except acceptance. I am close to accepting but that also does not mean I'm giving up. I have researched and researched almost to the point of insanity trying to figure out why why why do I have this???!! Well I have theories of course, we all do but I am not God and don't know why so at this time I will do my best to just keep trying new things to see what my body is telling me it does or doesn't need. One thing that definitely don't help me is STRESS. Stress is bad for the mind, body and soul. I sometimes think me not getting help sooner for my mismanagement of my stress and anxiety is a big part of why I have this. But saying don't stress is easier said than done. So since I am still such a newbie to this dieseas all I can tell you is I understand, I'm sorry, and don't give up. Thank God for this board and all the kind hearted people on here. What I am taking currently is Elmiron, Vesicare, DH Aloe, Amitriptyline, and Activated Quercetin (which honestly has helped me a lot). I start PT next week. I have been doing The Amy Stein's Heal Pelvic Pain stretches for a month. Seems to help a little. Sticking religiously to the IC diet with a focus on nutrient dense and aklalyzing foods and avoiding excessive sugar and inflammatory foods. I think a big part of our healing is keeping our bodies healthy to help keep our immune system strong. Sorry for the long ramble. Hope today has been a better day for you

  7. #7
    ICN Member
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    Re: I Feel Like Such A Failure...

    Thank you, everybody!

    krist656: Yes, I am a 47 year old woman (going through perimenopause, btw). I just call my bladder "The Beast" because I'm afraid of when it will attack me next. ;-) I hadn't heard about estrogen or coconut oil; I will ask the doc about those when I go see him this week. He said I was a good candidate for Interstim, but after all the awful things I've read about it, I'd rather not go down that road. I will have to try your ideas!

    jen74: So far, I have had ten weekly instillations of the Appel cocktail, with extra lidocaine. I was only supposed to have six. The first one lasted for five days, but each one gave me shorter and shorter relief, until the last one which helped for two days. Thanks to you all, I will search out some of your ways, and get a second opinion if the Doc still wants Interstim.

    icnmgrjill: Thank you! I was puzzled why the therapist said I could graduate but the doctor said I couldn't. I am still doing the exercises, and I will look into the remedies you've suggested. Just knowing that there is hope that I could lead something of a normal life again is wonderful!

    ICNDonna: Sending hugs back! It is great to know that people do get through this and my "Beast" can be caged at some point. You all are an inspiration to me.

    rshell84; No need to apologize; I ramble a lot too. I, too, am going through the stages of grief for the life I used to have; when I look at healthy people who don't have IC, then I feel angry and envious, and then ashamed of my anger, so I still have a way to go on the grief scale. Today is a better day, thanks to you all!

  8. #8
    ICN Member
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    Re: I Feel Like Such A Failure...

    Hey Beast,

    Just wondering how you are doing?

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