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male, don't know what to do anymore

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  • flowerangela
    replied
    glad youre feeling better i am too

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  • ICNDonna
    replied
    That's great! Thank you for sharing your good news. It gives those who are having tough times some hope that they will feel better.

    Warm hugs,
    Donna

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  • crazyivan45
    replied
    Its been a while since I have posted, and in that time things got a little worse before improving significantly. I am now about 80-100% symptom free, every day. I still have flareups every few weeks, lasting from a few hours to a few days, but on my 'bad days' (unfortunately having one today) I feel like as well as I did on my 'good days' back in April. Pain is virtually nonexistant, just some urgency/frequency but nowhere near as bad as it was. Currently taking 10mg amitriptyline at night and 500mg twice a day of cholorazoxazon, as well as cystoprotek twice a day. I was 100% symptom free before a minor flareup last friday night, most of which disappeared over the weekend but still having some lingering urgency/frequency today. I'm pretty sure that is stress related, as I have been avoiding all of my trigger foods lately. Ive tried adding atarax into my regime but it really knocks me out, so I havent had a chance to tell if this may be the one final piece to get me back to 'normal.' I'm optimistic, but I know my symptoms are likely to return, as even remissions don't last forever. I'm just finally glad to be feeling mostly normal again. I've been on the cystoprotek for only a month but I can tell its already making a huge difference. I am hoping the lingering symptoms disappear over the coming months as it starts to repair the bladder lining. If anyone is feeling like there is no hope and its never going to get better just hang in there and keep fighting. You WILL find something that works for you

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  • ICNDonna
    replied
    If you go to http://www.ic-network.com/glossary/glossaryfda.html you'll find what elmiron is called in different countries.

    Donn

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  • greeneyes
    replied
    Originally posted by crazyivan45 View Post
    I am currently on elavil (amitryptyline) and while it worked great for about a week, its not having much of an effect anymore. On 10mg, tried upping to 20 but it made me a zombie and suicidal. Don't really have a lot of support from family and friends. Friends don't understand, family (parents) are going through bankruptcy and forclosure, so they have too many of their own problems. I have tried klonazepam (was prescribed it years ago for anxiety, kept it around in case of emergencies) and it has helped. So have regular muscle relaxers. Can PFD symptoms get worse with certain foods or drinks? have not tried hydroxyzine, but the first uro gave me sudafed to try and stop the urine leak and i ended up being unable to urinate after a few days and had to cath until my prostate shrunk down a bit. Also, my pain actually improves when my bladder fills up and usually starts or gets worse when my bladder is empty. Spasms are also less intense when my bladder is full then when it is empty

    Currently live in Memphis, TN
    Hello, first let me say I'm sorry your suffering with pain, I too live in memphis and I see DR. THomas Shelton he treats IC and he diagnosed me and I've been getting instill for 5 weeks now, my symptoms were those of a UTI, constant bladder pain and back pain, going to the bathroom over 30 times a day, my sytoms have almost disappeared with the instills and taking vesicare 10mg's daily. I have two more instills and then take a two week break to see what happens. Is he one of the uro's you've tired I hope not because I've had very good luck with them.
    Last edited by greeneyes; 04-13-2011, 01:39 PM.

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  • earthlady
    replied
    Have you tried Valium to use as a muscle relaxer? Many people here use it as a vaginal suppository but my pt who does pelvic floor therapy said she has male patients who use it as a rectal suppository. It's pretty inexpensive as a generic.

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  • earthlady
    replied
    The Gelnique that I use works very well on my bladder spasms. It's the gel transdermal form of Oxybutynin. I did have some nausea from it but no constipation or severe dry mouth. I found I could get away with using it about every three days. I don't know the cost though of the gel form as I'm still using samples from the dr.

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  • vanilla
    replied
    Have you looked into buying medicines online from different countries? I know there is someone on this site who buys their Elmiron from Italy and supposedly pays much less. I believe the Italian Elmiron begins with an F. Just a thought. A friend told me the other day that we pay so much more for our medicines here in the US because pharmaceutical companies pass the cost of research onto the US consumer.

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  • crazyivan45
    replied
    Went and met with my GP. When I explained everything and mentioned pelvic floor dysfunction he said 'that makes complete sense to me. That may be the problem but I can't diagnose it.' He did agree to try me on a regular muscle relaxer to see if it made any difference. He prescribed 500mg of chlorzoxazon twice daily. It worked great!....for the first few days. Now, I am again having horrible bladder spasms but at least the pain has been significantly reduced. So far, every medication I have tried to calm my bladder down has worked wonderfully in the beginning, but after a short time it has simply stopped working. I have some cystoprotec on order to see if that does anything, but at this point I am not hopeful.

    This has been my main issue all along, and the one that no treatment has had any effect on. Are there any other OAB meds besides oxybutynin that are available generic? I tried Toviaz and Vesicare and both worked great for about two weeks, then they stopped having any effect. But even if they continued to work I would not be able to afford them for long. I had read somewhere that the non extended release version of sanctura was now generic, but none of the pharmacies around here have it in generic form. Is this in fact available generic? For those o you who have tried oxybutynin, did it work for you? If so, how bad were the side effects? Ive kind of found myself in a pretty bad position here, as I know there are many treatments available but I simply cannot afford any of the more advanced treatments. I know this is wrong and probably incredibly stupid but I am silently hoping that another urologist will tell me the solution is to remove my prostate and/or bladder and that will make this all go away. I know thats not true, but I'm running out of options. At least I could count on my insurance to cover part of if not most of a surgery. Its this no prescription thing that is (almost literally) killing me

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  • VickiB
    replied
    This has to be confusing and frustrating for you. So many possibilities to consider, prostrate, PFD, IC, etc, and all of that takes time & money! I hope your appointment with your GP tomorrow results in some sort of forward progress.

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  • crazyivan45
    replied
    Thanks everyone for your replies and support. I have an appointment with my GP tomorrow to discuss trying a muscle relaxer. The more I read about PFd, the more it sounds like thats my issue. Bladder doesnt hurt when full, the leaking, enlarged prostate, no nocturia but bad daytime frequency/urgency...From what ive read these are all indicative of PFD. It could be I have both, but I just don't know. Its weird that Pyridium used to work wonders, but now, while I can actually feel my bladder go numb, I still have pain. Maybe the pain isnt coming from my bladder, but from somewhere else? I associate the pain with my bladder but I never have both pain and frequency at the same time, its always one or the other, but never both at the same time. Everything down there just feels really tense all the time. When i focus on relaxing my pelvic muscles everything seems to subside. Unfortunately I cannot get them to untense for very long. As soon as my concentration shifts a little the pain or frequency comes right back. For a long time i thought this was chronic prostatitis, but then the pain started and thats what got me looking in to IC

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  • flowerangela
    replied
    ivan
    im 24 in tn with ic also...please pm me or im me if you need someone to talk to.

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  • VickiB
    replied
    Originally posted by MamaZ View Post
    I certainly know what it's like to be given the run around and thrown medication at because they simply didn't know what to do with you. It's awful.
    Yes, me too. I lost count of how many doctors I saw, and paid, for nothing. I'd have to say that was by far the darkest time for me. I'm sorry you're having to go through this!

    I hear you on the costs, especially that of Elmiron! Sheesh! I took it for a while but finally had to give it up due to the expense. I replaced it with CystoProtek which turned out to work equally as well for me. You might want to consider giving that a try.

    I hope you can get some kind of diagnosis soon and then find something that works to quiet your symptoms!

    Vicki

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  • earthlady
    replied
    This is just a thought but since I didn't see this listed in your post I thought I would mention it. Have you had your pelvic floor muscles assessed by a therapist or pelvic pain specialist? My therapist works with both men and women for this, so pelvic floor problems are not just related to females. Your description of having a feeling of a golf ball rolling around in there made me think of this and sometimes this is what it feels like when there is pelvic floor dysfunction.

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  • MamaZ
    replied
    Originally posted by crazyivan45 View Post
    I am going to try and see my GP again on Friday. Never really considered PFD, but maybe he can diagnose or at least recommend someone who can treat/diagnose it. I've read that low doses of a muscle relaxer such as Valium (2mg, 3 times a day) have helped people with PFD, without causing drowsyness or dependency. Is that something I could talk to him about? I don't want to come off as a pill seeking junkie, but at this point I'd like to at least give it a try, just to see if it has any effect at all.
    I'm not all that enthusiastic about going the GP route for referrals for this -- if only because I don't think they know the difference between a regular urologist and a doctor who specializes in CHRONIC PELVIC PAIN. They are not mutually exclusive, you know what I mean?
    My GP knew a little bit about IC -- he knew enough to tell me that Elavil and Elmiron are the main drugs and help a lot of people...and that he could just prescribe me some and send me on my way. What he didn't mention is that this is much more complex than that and that while those drugs DO help a lot of people, there are a lot of people that get zero relief with them.

    And I'll also say that I spent many, many years seeking a doctor to confirm that I do in fact have IC. Only recently have pelvic pain specialists begun to admit that just because you have a normal cystoscopy and a normal looking bladder on hydrodistension does NOT mean you don't have IC. They go entirely by symptoms now. So if you can use me as an example, save yourself a lot of frustration and seek out a professional who gets this and can help you NOW. And I'm no expert but your symptoms sure as heck sound like IC to me, especially since you've ruled out everything else.

    Yes, valium at low doses can help and don't run the risk of dependency -- but suppositories get RIGHT at the source of the pain. It acts locally. Just my opinion.

    I just found this the other day and found it interesting. Thought you might, too...
    Peeling back the Onion: The Urethral Burning Layer

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