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  1. #1
    ICN Member
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    Feel like my life may be over

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    Sunday Jan 3rd I developed frequent urination and a constant feeling that I had to pee.. Called my gp, left a urine sample, got a script for Bactrim and thought I was all set... My symptoms began to clear up and I thought I was fine..
    Until Wednesday evening... My frequency/urgency/pressure were all of a sudden unbearable. Thinking that Bactrim was just the wrong ab for me I called my go to get a different one. I was told my urine culture wasn't run due to contamination and my UA was clear. "Maybe it's a vaginal infection... Call your gyn".. So I did.
    On Thursday I was at the gyn at 7am. She ran some tests.. Also said sometimes tests come back clear and put me on cipro. Symptoms got better... But I had some mild tingling in my hand as a side effect of the cipro on Saturday and was told that I had had enough for a therapeutic effect and to stop it. I was terrified the symptoms would return.
    On Sunday I was scheduled to fly to Florida for a vacation in Key West with my children to visit a relative that lives there. My symptoms were not good at the airport. I did however get on the plane. We taxied out to the runway and were called back due to a technical issue. The flight needs up being cancelled. When we got off I called the gyn to see if I could get a longer course of abx... She checked my culture, it was negative. She wouldn't send anything out. I was devastated.
    We left the airport and I went to the ER.. Hoping for meds to make my trip enjoyable. I had a cr scan there that showed a possible kidney stone. Yay, an answer! But the doc thought that it was unlikely to be the answer and said I likely had IC.. He strongly recommended I cancel my trip and see a urologist ASAP. I ended up sending my children to Florida without me.
    Got into the urologist the next day. They seemed convinced that the kidney stone was the issue.. I was not. I had read about IC and had many of the symptoms off and on even before this horrible week. So the plan was made to have a repeat CT the next morning and then to figure out what surgical procedure, if any to do. If there was a kidney stone they would remove it.
    The CT was negative. The doctor decided to go in anyway. He used due to more closely visualize my ureters but no stone was seen. He did a hudrodistention and cystoscopy. He told my husband that it was "all clear" that my bladder had not been contracting and relaxing properly and that this should fix it. I would feel better in a week or so... My husband asked how sure he was of that.. He said 99%. I didn't quite believe that either.
    I researched and found that hudrodistention is primarily used for IC.. I could find nothing on its use for a contracted bladder. I called the office.
    Through phone calls to the nurse and her talking to the doc.. I guess he is just too busy to talk to me when telling me I have a chronic disease. I found that he did see some cystitis. No lesions as those would have been biopsied. Through the nurse again, he said that if I wanted to start elmiron now I could to get a jump start on it.. I'm nervous to take it before I see if this hydrodistension worked as he said.. I also heard yesterday that he instilled some meds at the same time.
    To be honest most of the time I am aware of my bladder, the intensity of the symptoms seem to come and go. I'm terrified of a life like this and so depressed I feel like if it is going to be crappy and I can't be normal
    Then why bother. If not for my kids I might have done something terrible.. If this hydrodistension doesn't work then I'm scared of what I might do. I have An amazing husband and a very active sex life.. Or I did.. I have 2 children and I'm very active. I love coffee.. I adore chocolate and spicy foods.. And tomato sauce..

    I've never felt so hopeless in my life.
    Last edited by Amyshell; 01-14-2016 at 02:42 AM. Reason: Corrected information

  2. #2
    ICN Member my2boys99's Avatar
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    Re: Feel like my life may be over

    Hi Amy,

    I'm glad you came here because it sounds like you need some support!

    I'm unclear as to how long ago your hydro was, but from my experience, I didn't notice any improvement until almost 4 weeks. I felt pretty bad the first two weeks, then a little better by the third and marked improvement by the fourth. So, please wait and see if it might help you. It does help about 50% I believe.

    If the hydro doesn't help, there are many different treatment options available to you. I felt very similar to you when I was first diagnosed. I actually went into a pretty bad depression for a few months. I lost about 15 pounds and was afraid to eat anything. I mourned my old, carefree life. It's sort of a process you have to go through when you're first diagnosed with IC. What you read online is completely overwhelming and predominantly negative. In actuality, many people with IC find relief from their symptoms. Many go into remissions, sometimes lasting years. I have just come out of a 2 year remission.

    My uro really wouldn't let me try anything much for my IC until I waited a full month following the hydro. He was right for me to wait because I did start to feel much better. Elmiron is FDA approved to treat IC and helps about 50% of the people who try it. If that doesn't work, there are many more meds and supplements to try, as well as physical therapy, acupuncture, and diet. The diet was really the hardest in the beginning when I had to give up coffee and alcohol. Over the years, I have learned what I can eat and what I cannot, and honestly, I don't mind the diet. It's fairly healthy and keeps me from eating things I probably shouldn't anyway. By the way, over my 2 year remission, I was able to drink certain kinds of alcohol and eat more foods with no problem. Sex never bothered me with IC.

    Everyone is different and their symptoms are different. It's kind of frustrating because it's not a "one size fits all" thing. You have to find what works for you. But trust me, your life is NOT over. Give the hydro some more time to see if it will help, and if not, try some of the meds. I would start the diet though. It can make a big difference for some people.

    Come here any time you need support...we all understand!!

    Hugs,
    Jane
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

  3. #3
    ICN Member
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    Re: Feel like my life may be over

    Quote Originally Posted by my2boys99 View Post
    Hi Amy,

    I'm glad you came here because it sounds like you need some support!

    I'm unclear as to how long ago your hydro was, but from my experience, I didn't notice any improvement until almost 4 weeks. I felt pretty bad the first two weeks, then a little better by the third and marked improvement by the fourth. So, please wait and see if it might help you. It does help about 50% I believe.

    If the hydro doesn't help, there are many different treatment options available to you. I felt very similar to you when I was first diagnosed. I actually went into a pretty bad depression for a few months. I lost about 15 pounds and was afraid to eat anything. I mourned my old, carefree life. It's sort of a process you have to go through when you're first diagnosed with IC. What you read online is completely overwhelming and predominantly negative. In actuality, many people with IC find relief from their symptoms. Many go into remissions, sometimes lasting years. I have just come out of a 2 year remission.

    My uro really wouldn't let me try anything much for my IC until I waited a full month following the hydro. He was right for me to wait because I did start to feel much better. Elmiron is FDA approved to treat IC and helps about 50% of the people who try it. If that doesn't work, there are many more meds and supplements to try, as well as physical therapy, acupuncture, and diet. The diet was really the hardest in the beginning when I had to give up coffee and alcohol. Over the years, I have learned what I can eat and what I cannot, and honestly, I don't mind the diet. It's fairly healthy and keeps me from eating things I probably shouldn't anyway. By the way, over my 2 year remission, I was able to drink certain kinds of alcohol and eat more foods with no problem. Sex never bothered me with IC.

    Everyone is different and their symptoms are different. It's kind of frustrating because it's not a "one size fits all" thing. You have to find what works for you. But trust me, your life is NOT over. Give the hydro some more time to see if it will help, and if not, try some of the meds. I would start the diet though. It can make a big difference for some people.

    Come here any time you need support...we all understand!!

    Hugs,
    Jane
    I guess it makes sense that my follow up appointment is in 4 weeks. My hydro was 2 days ago.. On Tuesday.

    My mom was also diagnosed with IC but was never as bad as I am.. Was? I don't know. She controls it with minor diet modifications. And had zero symptoms for 5 years. I know there is hope but all my online reading is making me crazy. I am terrified and anxious. And depressed. . So crappy.

  4. #4
    ICN Member my2boys99's Avatar
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    Re: Feel like my life may be over

    Yes, I took oxycodone for at least a week following my hydro, then switched to hydrocodone for another week so I could work. I remember calling my uro's office and complaining to the nurse about how I felt, and she said it was all perfectly normal and to give it time. It's hard to be patient when you don't feel well!

    A lot of people go into remission and we usually don't see them on this board. Sometimes they come back if the IC returns, like me, lol. Are you sleeping at night? To me, that was critical to feeling better. I took ambien every night for about two months around my diagnosis. It was a life saver to me. I always felt some better after a good night's sleep.

    I know it's hard. IC stinks, but don't let it control your life. Try to get out and get some fresh air, even while you're recovering from your hydro. It will help your mood as well.
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

  5. #5
    ICN Staff ICNDonna's Avatar
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    Re: Feel like my life may be over

    Jane is right on --- when someone is feeling good, there's no need for support so you will very rarely see posts by someone who has diagnosed IC, but feels okay. My IC was diagnosed back in 1975 (that's 41 years ago!) and if there is only one thing I can share it has to be that while it can take time to identify which foods and drinks are a problem for us --- and which treatment options are most effective, most of us do get there --- and most of us feel good most of the time.

    It's entirely possible to have a satisfying sex relationship in spite of the IC; it takes open communication and experimenting, but there again --- most will get there --- and because of the communication, etc., it can actually bring a couple to a closer relationship.

    At the time I was diagnosed, I had never heard of IC or the internet --- and I felt very alone. When Jill started this site, I made a decision that if I could help anyone avoid that lonely feeling, I wanted to continue to do it. That's why I hang out here a lot.

    Sending warm 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/

    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.
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  6. #6
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    Re: Feel like my life may be over

    @Amyshell...hang in there!! Praying for your healing!! Listen to these ladies they are very encouraging and absolutely right.

    @Jane did you schedule your next hydro yet? I've been thinking about you!

    @Donna....I know I am very grateful that you hang out here 😊

  7. #7
    ICN Member my2boys99's Avatar
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    Re: Feel like my life may be over

    Hi Luvmy2boys, no I haven't scheduled my hydro. I decided to try PT first just to see what they say. I do feel like my pelvic floor is tight and maybe there is something that can be done to help before I go the hydro route. If it doesn't work, I will get another hydro and hope it helps like the last one. How are you doing???
    Jane
    Diagnosed 1/7/14 via cysto/hydro

    Current Treatment:
    10 mg amitriptyline, DH Aloe Vera

    Used During Flares:
    Uribel, extra DH Aloe Vera, Klonopin and Tramadol (as needed)

    Practicing bladder training and stress control (hot baths, pelvic stretching)
    Recently tried PT, do not appear to have PFD

    Things that have not helped in the past:
    Oxybutynin, Vesicare, Pyridium, Myrbetriq, Vagifem

    Also have migraines and IBS

  8. #8
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    Re: Feel like my life may be over

    Hi Jane! Glad you are trying PT. I hope it helps! I go to PT and have been for a few months. I have a love/hate relationship with it. More love...but it's hard to relax when they do the internal work 😳 Lol!

    Yesterday I had my follow up with my LS Doctor. He said I'm doing well and backed my steroid down to 2x a week. But because I still have burning (not disabling like in the beginning but still enough to ruin a day) he prescribed me Estrace cream. It seems to be a standard protocol with LS. I'm hoping with the steroid and the Estrace cream my tissues will calm down even more. The bladder has been good today and yesterday because I got my period. Anyone else experience that?

    I also am changing my diet very sloooowly. Trying to eat more whole foods to help boost the immune system. It's all very overwhelming so I'm starting slow. What else can I do when I have 2, possibly 3, autoimmune diseases going on. Lots of veggies. I even bought Kale 😝 Going to buy the Vitamix so I can start the green smoothies. 😝😝😝

    Oh and my PT also wants me walking again for exercise to increase blood flow and start meditation or yoga. On top of all the stretching. I'm fortunate that I am a stay at home mom and both my boys are in school. They are 9 and 6. Very Lucky that way.

    Thank you all as always!

  9. #9
    ICN Member
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    Re: Feel like my life may be over

    What is LS??

  10. #10
    ICN Member
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    Re: Feel like my life may be over

    Sorry...Lichen Sclerosis. It's a skin condition that I was recently diagnosed with.

  11. #11
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    Re: Feel like my life may be over

    Amyshell how are you doing?

  12. #12
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    Re: Feel like my life may be over

    Aww thanks for asking.. Honestly..I'm peeing pretty much how I normally do.. Have always been an avid toilet user.. And I'm down to a tender bladder and once in a while this icky tingling in and around my urethra. As for the diagnosis.. I'm still devastated to not me "whole". But I'm trying to stop crying about it every day.. And be thankful for how I do feel. I am however, still mourning my life a bit. I decided to start the Elmiron... If it can help, why not. So far no side effects at all. Also started on oxybutynin. I see the urologist on Tuesday and boy do I have a lot to talk to him about! But I'm ok.. I just have to keep reminding myself of that.

  13. #13
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    Re: Feel like my life may be over

    Glad to hear you're staying positive. It's very hard during the original diagnosis. I did end up having to see a therapist. She has made a huge difference in how I see things now. Good luck with your appointment tomorrow. I hope you get all your questions answered. I'm also praying the Elmiron helps you. Xoxo

  14. #14
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    Re: Feel like my life may be over

    i'm trying so hard to be positive but i'm not sure i can.. i'm thinking that i'm not strong enough for this.. i'm just not.. to have it NEVER go away... i just can't handle it.. omg and it can get WORSE.. i just want to go to sleep forever.. when i sleep there is little to no pain/discomfort.. i'm driving my poor family crazy with my crying fits but i just don't think i can do this.. I can't.

  15. #15
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    Re: Feel like my life may be over

    I was the same way. I went on Klonopin. I hardly ever cry anymore. It is worth talking to your doctor about and if they aren't willing then try and find a therapist. It was the best thing I did for myself and my family.

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