View Full Version : A Man With IC
05-17-2004, 09:06 PM
Hello everyone -
My name is Brian, I have IC and yes, I'm a man. lol. (Haven't seen many of us around the site). I have been a long time viewer of the site but I have never posted before. I thought I would share my story with you. And before I continue I want to tell you all how helpful you all have been to me. This site and this forum truly is a godsend.
Anyway, I am 24yo. and was diagnosed with IC after a cysto/hydro under general anestia (wow, the spelling on that is def. wrong) - March of 2003. (Probably had it for many years before that though) My symptoms for the remainder of 2003 were not that bad. A little discomfort, occassional pain (especially during urination or ejaculation) and some bladder spasms. All off and on. Then around the start of the new year, the symptoms became more frequent and more painful so I decided that it was def. time to get on top of a treatment option. I started on Elmiron and Detrol LA around March 2004. So I have been on the Elmiron for about 3 months now with no help yet but God am I praying.
Well, last Sunday I thought my life was over. After ejaculating on Sunday I experienced this intense burning at the tip of my penis and it continued all day. Now since then, I continue to have a burning feeling (although it's not nearly as bad as it was the day it happened but much worse than it was a month ago). Now I'm scared to ejac., I'm scared to urinate, I'm scared to move!!! For fear it will get worse.
Like I said, I am on Elmiron for 3 months but while I'm waiting for that to kick in - I have heard many of you talk about the following meds: Elavil, CystaQ, Hydroxzyne (spelling?), and several others. Can any of you give me any feedback on these or other meds aside from Elmiron?? I have not had the Installation treatments yet as I am scared to death, they will make me worse. (I have heard many horror stories) I really would like to exhaust all medicinal avenues before proceeding through "Pain Land"
The thing that's really weird about my "IC" is I have no frequency at all. I go about 3-5 times a day. I never wake up in the middle of the night having to go to the bathroom. I know everybody is different but if there's one common denominator that seems to exist between everybody on this site, it's the frequency.
Well, I'm sorry this post is so long, thank you to all who take took the time to read it. I appreciate any and all feedback. I don't know if this burning that started last Sunday (8 days ago) is a flare-up or my IC getting worse. But since it happened it has really put me life into perspective and I've found myself more depressed this week then ever before.
Trying desperately to hold onto hope....
05-18-2004, 01:13 AM
Brian, :welcome: sorry you have IC, and for the pain you are experiencing. I can't be much help concerning the meds. I am on Elmiron also. I've tried the hydroxizine, but due to side effects I can't take it continually. I've not tried the others you mentioned. My frequency which is 9-11 times a day and 2-3 times at night ( I don't think this is alot compared to most here) is caused by the pain I get that makes me feel like I need to go. I actually have a normal bladder capacity. Everyone is different. I am doing the bladder instills. of heparin, marcaine and lidocaine. They don't hurt like the dmso's that alot of people here are doing. They certainly aren't fun though :) I'm sure others here can help you more than I can. I'll send a prayer up for you! Grace
05-18-2004, 01:13 AM
So sorry to hear you've got IC, but you have definitely come to a great place!!
Let's see. I've been taking Elmiron now for almost three months, and I've also had eight DMSO instillations. The instills put me in pain for about 24-36 hours afterwards, but after that, my symptoms seem to be better. I am about to start monthly maintenance instills to keep the relief up. As for the Elmiron, not sure if it is working yet, but I do notice my frequency is down, although I still urinate about 15 times a day (but I consider that an improvement since I used to go 25-35 times) and there is a BIG improvement in the urgency to urinate... I now take Ditropan as needed, rather than all the time...which is good because it makes me retain urine.
I am also taking Atarax (hydroxyzine) at night, and it's really helped me get a good night's sleep. Reduces my nightime bathroom trips to 0-2 (sometimes I was getting up 9 or 10 times before). And it makes me sleepy, so it's easier to fall asleep at night.
All in all, I'm feeling better than when I was diagnosed, but I still have flareups of pain and frequency sometimes...
So, just wanted to let you know I've had success with both instillations and Atarax, and like you, I'm still waiting to see the full effect of Elmiron.
Welcome to the ICN. I have been taking Hydroxyzine for almost 2 years now and for me it has been a big help.
It might be beneficial for you to read through the guest lecture series about the different topics. Here is a link.
Also here is a link to the Handbook.
In there you will find many topics and one thing that might help is the diet if you aren't doing it. For myself and many others it is a major part of our treatment. Also Prelief which helps take the acid out of the food you eat. There should be a link on the top of the page.
I hope this will help a little. There are some guys on here. Maybe some will be around to say hi. Until then, all us women on here will do our best to help in any way we can. We can't give medical advise but will answer what we can.
Hang in there, I have had IC for 29 years now and at the good ole age of 46 now, I have a good life.:)
05-18-2004, 02:33 AM
I'm glad we can be of help to you.
I'm sorry you are in a flare right now --- have you been checked for infection? That can be the culprit sometimes.
Also --- you mentioned that after your hydrodistention you experienced months feeling good. Since my diagnosis 29 years ago I have had hydros at intervals as a treatment. When my symptoms return and won't go away, we schedule a hydro. So far, they have helped without fail and I have now had 35.
I hope you feel better very soon.
Warm welcoming hugs,
05-18-2004, 04:18 AM
Welcome to the boards and sorry you're experiencing so much discomfort. :(
Well, I'm not a guy, but I have experienced similar urethral burning like you describe and it ain't pleasant. I would ocassionally have burning after orgasming. Not a fun way to finish up! ;) I've been on Elmiron, Detrol LA and Elavil for about a year now and most of my symptoms have been in remission but the burning still makes an appearance from time to time.
First, definitely check to make sure you don't have a urinary tract infection. Even a mild one can cause burning. Also, make sure you are drinking enough water to keep your urine dilute. You may also want to take Prelief to help reduce the acidity of your urine. My urologist had put me on Urocit-K for a while, which basically does the same thing. That can definitely help reduce irritation and burning of the urethral tissues. A tricyclic antidepressant like Elavil can help block the nerve impulses that are causing that pain as well. That was what was happening with me, and now I almost never am in any pain. And if I do have burning, it's usually mild, lasts only a few minutes and is often relieved by rinsing with cool water after urinating. (You might want to try that too.)
Hope this helps!
05-18-2004, 04:47 AM
I can't really offer any more suggestions or help than you've already received, but I do want to extend a warm :welcome:
to you. As you've already discovered this is a very supportive and caring site. Hope you find some answers soon.
Hugs & blessings to you--:cat:
Hi Brian, and welcome, the gals have given you some good advise in their posts. Sorry that you are going through so much, we can certainly empathize with you regarding IC. I have been on Elavil for about a year and a half and Effexor XR, and Ambien for sleep, and Ultram for pain, so far it has helped me a lot. I was offered DMSO treatments, but personally I wanted to try the meds first, so cannot help you in regards to that treatment. Very glad you found the IC network, a wealth of information and very supportive people. Keep us posted how you are doing, take care Iris.:hi: :welcome: :flower:
05-18-2004, 11:16 AM
Hi, Welcome to the group.I have been on elmiron since Jan. 2004,I was finally diagnosed after several months of pain and a full hysterectomy that could have probably been done at a much later time,as I had no relief after the hysterectomy!!!I am starting to get some relief,and a couple good days here and there!! I take 30mg of elavil at night and 1 flexeril,so I do sleep good at night.I also take vicodin for the pain sometimes only a half dose.We're all differnt but we all know the pain and depresssion that can come with this!!You will have some good days.It took me from Dec. Until the end of Mar. to see some results.When I do have a good day I try to make the best of it.This disease has really given me the opportunity to know what's important and what's not!!!! I hope you are feeling better soon. A big Hug to You,Coleen:hi:
05-18-2004, 11:38 AM
hello and welcome to the icn.
it does sound like a nasty flare your having i agree with the others you do need to check to see if you have an infection.
sending you hugs and prayers
05-18-2004, 02:48 PM
Welcome to the boards, Brian!
Sorry to hear about the IC, but you will find a ton of info here on the site. I found this site 2 years ago, before I was diagnosed, and it helped me a great deal.
I didn't have the frequency or urgency usually associated with IC either...I just had really intense burning pain after urination. Sometimes, the pain would be centered in my bladder..other times, it felt like it was down in my urethra. It's strange how one disease can affect so many people in so many different ways.
As far as the meds go, my uro has me on Elmiron 2x a day (been on it for almost 7 months now), Elavil (25 mgs) at night, and Zyrtec, which is for allergies, but also helps with IC (at least for me, anyways). I tried the hydroxzine for awhile instead of the Zyrtec, but it didn't seem to help me as well as the Zyrtec does. However, the hydroxzine seems to help many people a great deal, according to what I read on the boards here.
I hope this is of some help...keep posting and let us know how you are doing!
05-18-2004, 03:02 PM
Just wanted to say hi:hi: and welcome you to the ICN . Glad you found us. Hope your feeling better. Best wishes and take care,
05-18-2004, 05:10 PM
Thank you all very much for replying with info and warm prayers. I appreciate it.
I forgot to put in my original post that I did have my urine screened for infections and it came nack negative. (For the first time in my life I think I was hoping for one so that this, what seemed like a flare up, could just be taken care of with some antibiotic)
I really think I would rather exhaust all medicinal routes before getting the instillations. For fear of getting worse due to it. I know some people have had success with it, but a lot of people appearently haven't. :( I wanted to talk to my doctor about maybe staying on the Elmiron, but in the meantime trying out Elavil and Hydroxzyne to see if it would help with the immediate pain.
Well, again, I'm very thankful for all of your time and positive thoughts.
Keeping the Faith -
05-18-2004, 05:33 PM
Sorry that you have IC, I hope you will have better days. I remember I use to go to the urinate every 5 mins, But It stop I'm going every 3 or 4 hours now and I have no more flares and I only get up once at night and sometimes not. I'm glad the frequency isn't so bad like it use to be, I stop being depressed about it. I think stress play a role in this disease, I stop stressing over it and I'm doing so much better now - thank god. I'm going now. Take care god bless!
05-18-2004, 07:53 PM
Hi There Brian, and Welcome :) I am New here too, only been here about a three or four weeks and what a help these women have been to me. So sorry to here that you are having a bad time with it. IC sure knocks ya for a loop!!:rolleyes: I have had 5 instills of the DMSO and I'm not sure if it worked for me or not I am doing pretty ok at the moment:thumbsup: the thing is, I was one of those that it was real hard to handle the treatments, tuff stuff for me. Couldn't handle it. Had to stop after the 5th one. And the Elmiron did not agree with me either stopped it after a month and 1/2 so I am trying the Homeopathic route with something Called Bladder Q have been on it for 3 weeks now, not sure yet what is happening with it to soon to tell. It is very similar to the Cysta Q almost all the same ingredients just a few different ones. Very Mild on the Body, and I think that is What I need is something not so Harsh for me. So I am really hoping that these do the trick for me. I think What the other Ladies have been saying to you is good advice but if you don't have an infection, than you have a really bad Flare it soundes like, The Prelief is VERY Good to have before your Meals they say to take two before each meal you can get them for a really good price on line at Costco.com under the Health area under anti acids Check them out So many of Us use them. I wont be with out them. And this also really Helps me I have a heating pack that I use When I'm hurting. Lay down and put that on your Bladder area and rest, it is very Helpful to me, infact I'm using one right now;) Hope These tips help you if you have any ? just PM me Feel better soon
P.S. I don't seem to have the urge to go as much as some of the other ladies either I may only go about maybe 6 to 8 times a day, somedays less, but when I had this last instill done I counted 17 times from the time I released the DMSO at 2:30 PM to 9:30 PM that is a lot, but I here that is not uncommon after them, quit annoying I assure you
05-19-2004, 03:53 AM
I will tell you from the perspective of a man that the symptoms you describe are classic. I have burning all the time, pain in my testicles, penis and abdomen that radiates to my back and upper thighs, as well as constant gross hematuria (blood in urine). I have just had my first hydro about 10 days ago. It has seemed to help with the frequency, down from about 20 times a day and 3-5 times at night to about 8-10 during the day and 1-2 at night, but the pain seems to have gotten worse. I have a very good uro and am seeing a pain management doctor as well. If not for the meds, I would be useless. I am trying to work as long as I can, but I feel the end is near. As of now, I have to decide between pain relief and working. Some days are pure hell. Maybe you are fortunate to have a “mild” case if there is such a thing. I took Elmiron for 10 months with no relief. Good luck
05-19-2004, 05:46 AM
Sure Hope you find some pain relief soon, sounds like your really hurting here. So sorry
05-19-2004, 09:01 AM
I myself am also male, 19 and I've been suffering 8 years but it got worse thanks to medications like DetrolLA, DitropanXL and now I have to wear a catheter 24/7 until I get a Bladder Augmentation sometime this year..
Never heard of an IC case where frequency wasn't involved, you are truly lucky if you only urinate 5 times a day max. Before my catheter, I was about 50 times a day or more average.
If you only urinated five times a day, what were your symptoms that made you decide to have a Cysto/Hydro performed?..
About the ejaculating and burning sensation, I've never had that problem thankfully, maybe you have a urethral infection? That'd cause burning with urination and ejaculation, or perhaps you may have picked up an STD if you weren't safe.
Take care and let us know how you progress.
05-19-2004, 12:37 PM
Coy saw this post before me, lol.
Hi Brian Welcome to the family...glad you decided to post. I hope you can find relief.
Come to us whenever you have a question or need support and we will do everything we can to help. Thanks for titling this from a man...it will help other men know they are not allone.
Can't tell my friend to post here since he did.
I hope you find the relief you need.
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