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How do you know it's your bladder?

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  • helen newcastle
    replied
    pudendal nerve

    HI I am currently living in Australia, but lived in Texas Houston for six years.I have had IC for eleven years. I had a good urologist in Houston I have had DMSO, Bladder instillations, Everything under the sun, I go into remission at least every few weeks for about eight weeks, I am much better on the IC diet and if I do not include gluten in my diet. I was very sad when DR Brookoff passed as he has been a constant source of help to me since I moved from the US. JUst by chance I met a lady who told me about a gyno who believed in Pudendal nerve entrapment.She gave me an internal and said she thought that my Pudendal nerve may be the cause of my problems, I really hurt where she pressed. IM going to visit a surgeon in Sydney to see what he says. IM so nervous incase I have IC and Pudendal nerve entrapment I had constant urinary tract infections in the beginning, then none,My frequency was at least 60 a day. And My back was so bad I was in bed the first two years.I had a bladder distention in Spain after five years. It took my back pain away it was great. I changed to the IC diet and my frequency is about ten times a day now, I drink a lot. I am constantly tired of fighting pain, and get other things like ulcers on my tongue and red blotches on my body, low iron , low blood pressure. I constantly feel pelvic , bladder pain. But it moves constantly, one relieving the other. But none any less painful then the other. I get very confused with writing in these sites,as my meds make me feel not present. I take Ativan, Stilnox. Lyrica and Tramadol.Thease numb but do not take away the pain. I hate sitting for long periods. I was hoping someone could read this and tell me if they have the same confusion. I also want to thank Jill for all her work on this site, I think she should be given a medal.I cant think How much this must take out of her, as writing this piece alone is wearing me out.I want to say to anyone who is living in The Houston area please let me know of any support groups. MY email is [email protected],com.I know there will be an answer to this one day.I thank God for all the wonderful people out there trying to help us, as I have met so many.

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  • nineteenwinters
    replied
    It does seem to only really work for a few percentage BUT I think it's worth it to try and see if you fit in there. Because when it works it WORKS usually. If you can afford it and do not experience life-changing side effects from it I think it's worth a shot.

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  • So Frustrated
    replied
    Yeah I guess it can't hurt to give it a try since I didn't feel any side effects. I hope the increased depression was just coincidental. The nurse practitioner at my urologist office wrote for it at my request and was very enthusiastic sounding about how life changing it can be for those it works for even though the percentage is on the low side. However when the uro came in and it was brought up that I am trying it, he seemed very unenthused and said he wasn't a big Elmiron proponent. I asked him why and he said "because I've never seen it work". That really kind of ruined my day. Maybe he hasn't written for it much. Not really sure.

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  • Pammylynn8
    replied
    good luck *so frustrated*! I hope you find relief from Elmiron! It is always good to try for a while right?

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  • So Frustrated
    replied
    Well that's a relief to hear that it may be possible for it to heal the bladder and then not need it anymore possibly. I just thought it's a lifetime med if it works. I guess if it does work, I can stop for a while to see if symptoms return in order to be sure it actually is the answer. Thanks again!!

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  • nineteenwinters
    replied
    As it was explained to me the body is a much better healer than the Elmiron can be. So in answer to how you tell I think you can't totally. I am just using it addition to the diet to help speed up the process or really, really make sure I get my bladder lining back to normal. The plan for me (set by my doctor) is that he thinks we're going to heal my lining with the diet and Elmiron and then once that happens I won't have to take Elmiron any longer and I will just maintain the lining with no caffine/alcohol and limited ammounts of fast food and acidic foods. Also taking Prelief before any acidic food will greatly help.

    I hear you about not wanting it to work because it's so expensive. Apparently there's a generic (look on the topic Elmiron Shortage) that is made in India and only sold there as well. I am still too chicken to try it as of yet but if I had to be on Elmiron for life I would certainly check it out. Hopefully that generic means others will start to show up soon and it won't cost us a buttload. I get mine from Canada for $120ish but that's still really expensive.

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  • So Frustrated
    replied
    Thanks. I only tried Elmiron for a couple weeks. I felt like I was getting even more depressed, but maybe just a coincidence. I think I may try again. I'm just kind of afraid it may work and I won't be able to afford it at $500/month if my insurance situation were to change. Right now it is covered for a small copay. I wanted to find a more affordable long term solution if possible, but I may have no choice and will have to wait as you said 6 months to a year to find out.

    With the effects of Elmiron taking so long, how do people know if time wasn't the healer? This is another concern of mine. People may get better and think it's a med they are taking for life that isn't doing anything but causing side effects.

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  • nineteenwinters
    replied
    If you stopped Elmiron because it 'wasn't working' it takes a while to start working (6 months to a year+). I am sorry other treatments aren't working for you. Have you tried Pyridium and/or drinking water with baking soda?

    Leave a comment:


  • So Frustrated
    replied
    I really really need to figure this out too...PLEASE!!!

    I've posted several times recently on the forum and am very thankful for the feedback I am able to get on here. I'm a male and this condition makes me feel much more isolated after seeing the majority of posts coming from women. I'm still appreciative of any feedback I can get since I only get a few minutes with the doctors and don't seem to get much relief.

    All I really want to know is the source of my problem so I can focus on the right treatment. It would seem logical that my bladder would be the source since every time I have a couple ounces of fluid in my bladder I have pain and pressure/urgency in the penile urethra area. This subsides for a little while after I void. However no dietary changes make a difference. I think I could drink water for 3 straight days and nothing else and I would feel the same.

    I have difficulty voiding though also (stop and start, weak stream, takes minutes to start and minutes to finish). I was told I have PFD. I'm wondering if my bladder is fine and that the minimal volume urgency could be caused by tight pelvic muscles that just won't let up or something else aside from the bladder itself.

    I've tried numerous meds...Rapaflo, antibiotics, elmiron for a short period, enablex, antidepressants, valium, xanax, otc pain meds, stool softeners. Numerous therapies...pelvic floor pt, hot baths for weeks, heating pad, acupuncture, massage, chiropractic.

    Had a cystoscopy with no findings. I have no retention.

    I woke up with this one day out of the blue about 6 months ago and have been trying to find the source and treatment ever since. If I could just pee with a good strong flow and a large volume again and lengthy relief afterwards, I think my depression would lift immediately. Not knowing if I ever will again is what is really taking a toll on me.

    Any feedback would be greatly appreciated.

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  • Toto
    replied
    My bladder spasms remind me of early pregnancy when the baby is moving. (it actually freaks me out because it's so frighteningly similar) To describe it another way, it's like a fluttering feeling and suddenly I'll have to urinate every five minutes (sometimes lasting up to hour or more). If I don't urinate immediately when I have to, then I am doubled over in pain. Also when I urinate it burns like crazy and makes me crazy.

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  • ICNDonna
    replied
    I have described my bladder pain as being like an extremely severe, slightly misplaced menstrual cramp. There is the intense need to urinate as well.

    Donna

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  • amy09
    replied
    Bladder spasms for me feel like a wave of a sudden strong urge to pee. Also, it feels like a very painful cramp at the end of urination. It sounds to me like you are definitely experiencing bladder pain because your bladder is located right under and a little above (when it's getting full) your pubic bone. I also get pains that radiate out from there to other parts of my abdomen. That's pretty common since there are tons of nerves in the pelvis and they tend to "cross-talk" with each other.

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  • nineteenwinters
    replied
    My bladder spasms feel like someone's inside my body and shakes my bladder back and forth for like a second. This immediatly causes me to feel the need to urinate. You know myoclonic jerks? The ones where your body like twitches sometimes when you're falling asleep? It's totally like that only focused on my bladder.

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  • rosechild12
    replied
    Sorry about all of the typos I'm posting from my phone instead of my computer.

    Jessica

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  • rosechild12
    replied
    Normally my bladder pain is usually on my right side right by my right ovary. I have also had pain right above my pubic bone but usually that is from cramps. I will say everybody's pain is different and were your bladder is located depends on your weight and height but normally it's on your right side. However I would say right above your pelvis has more to do with your uterus. Which your uterus can have spasms and the like at different times in your cycle. I will say my woman issues have gotten worse because of the IC. When one part of your body is traumatized if you will then it can affect other areas around there. Also my bladder spasms feel like fetal movement to me except on my right side. I have been pregnant twice which is why I compare it to that but it can also be described as a feeling of your bladder flip flopping. It can cause more urgency and frequency but for me it's a strange sensation that then causes pelvic pain afterwards. Everyone is different and if your having pain you can't explain then I would either talk to my doctor or try to apply heat to the area and relax. Normally when I have pain there then it's a cramp and the heating pad always helps. It may not take away the pain but it helps. Also when I have bladder spasms it's my bodies way of saying I need to slow down and rest, but you need to listen to your body to figure out what different things mean for you. I have learned with IC that I really need to listen to my body and take cues from it.

    Hope that helps,
    Jessica

    Meds I take
    Elmiron 2 a day twice a day
    Cymbalta 60mg
    Lydocaine as needed
    Orthro Evra Patch continuously because my period makes me flare
    Tramadol as needed
    Oxycodone as needed
    Prosed DS as needed

    I have had IC my whole life bit it got much worse when I was 16 but no one would diagnose me and I saw gynecologists, urologists, and pediatricians. They all said it was either in my head or a UTI. I finally found a wonderful doctor who diagnosed me with IC in April of 2011. I thank God everyday for this forum and my doctor.

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