New to the forum-my story

[jrn1]

Hi I finally decided to join this forum. I was diagnosed with IC 10 years ago. But I had it for at least 4 years before that. I am a male(so many of the urologists never even thought that I could have IC). I had searing pain and I was freaking out. The first urologist said I had a blockage and that I needed to have a terp. Which is to cut away part of the prostate. This is for guys who have enlarged prostates. I was in so much pain I agreed. But I was barely 40 years old. My wife stopped me. Thank God. I was 1 day from having the operation. Thwas a close call. I went to several more urologists and they all said I had non-bacterial prostatitis. They even questioned that the pain was all in my head. I finally found a urologist who suspected IC. I had the procedure where they infalte your badder with water and then look inside with a scope to see what was happening. I was then diagnosed with IC.
I did the DMSO Cocktail bladder installations and was much better. But I became allergic to Heprin and thus could no longer do it.(that was a truely terrible experience) Life has been up and down since. I found alpha stim helped a bit with the pain. My acupuncturist helped to some degree. He also suggested taking Naticor and serralone enzymes on a empty stomach. This has helped over the last few years. It seems to reduce the inflammation. But I still get flare ups and I have had two major flare ups in the last 4 weeks. Which really concerns me. I was in so much discomfort I was beside myself. I am better today though it still is bothering me. I take 25mg of atrax twice a day. Also 5 mg of Hytrin before bed. Plus 6 caps of Bladder Q. And the Naticor and serralone 3 times a day.
It took me awhile to join this board. I figured few men would be on here.
My wife is very understanding. But still I needed to talk with someone else who has this problem. It can be tough to cope with. There are days I pray to just be normal. It's a bit better today but I don't feel totally comfortable.
I have increased my intake of the enzymes and also I take urised to numb some of the pain. Though I have side effects from this stuff and can only take it for about 4 days or so then i have to quit.
What do you fellow sufferers do when you have major flare ups? Any advice?
Any other men on here?
Thanks
Jrn

[petrie86]

Jrn,
to the ICN!!!! I know there are some other males on this site. I dont really kno much about males with Ic. I'm only 20. However I know how Ic can ruin your life, and make you depressed. Well at least it did for me. Dr's still dont know what starts IC.... we just have to keep our heads up and hope that someday there will be a cure.
It's tough for our partners, the dont totally understand the pain we go through on a normal day to day basis. My bf still doesnt fully understand. But they do care about us and wish the best for us. Plus now you have us!!! We're not dr's but some women and men here are very knowledgable with medicines and things that work for them. I know alot of women say that taking hott baths and heating pads work. I dont hava bath, but I do have a seat in the shower so I can have the hott water on my bladder. It helps for a little while. When I'm flaring I usually sit on top of my foot for pressure. Although I dont know if that would work for men. lol Umm.... Also I try to tkae my mind fof the pain as much as possible. I like to watch a favorite movie or tv show... Some women read or if you like video games try that! When I'm flaring I try to drink as much water as possible and pee it out. That deffinitly works. Also try baking soda in water. (yucky... gag) I cant handle that.
If you ever have ANY questions, dont ever be embarressed to ask. Someone will always answer!
I wish you the best of luck. If you ever need support or to vent feel free to pm me!!! I'm a good listener.

Huggs

Rachel

[lnseagraves]

Welcome.

I am also a girl, but I know there ARE a few men on here that post occasionally. Flares are intolerable, and I wish there was a quick fix for them... I always sit in a hot tub or with a heat pack on my pelvis when I flare. Also, I get my husband to go out and buy me a vanilla shake. Vanilla shakes do a LOT for me, although I think its just psychological... somehow the idea of eating something cold is soothing to me when I'm in a searing hot pain from IC. I also take over the counter uristat (a brand of pyridium) it calms my bladder down marginally. Also, my doctor has prescribed detrol to be used when flaring because it stops your bladder from spasming. If your flares are quite common, you might want to talk to you doctor about pain medicine. Some people on this board have a standing prescriptions for pain meds. for their IC. Good luck, and welcome!

[jrn1]

Thank you for your kind reply petrie86. I have not tried the baking soda and water trick yet. It sounds awful tasting. But I may still try it. If it works I guess it should not matter if it tastes good. What do you do when you get invited out to eat and are having a flare up? I declined an invitation to go out to eat with friends because I felt lousy and I was bummed I could not join my friends. But I knew the place they were going to eat had very little I could eat. I have traveled during a flare up and that was flat out awful. Always looking for a bathroom and in discomfort. Ugh! Anyway thanks for replying. I have a few more questions but I'll save them for later.

[jrn1]

Welcome.

I am also a girl, but I know there ARE a few men on here that post occasionally. Flares are intolerable, and I wish there was a quick fix for them... I always sit in a hot tub or with a heat pack on my pelvis when I flare. Also, I get my husband to go out and buy me a vanilla shake. Vanilla shakes do a LOT for me, although I think its just psychological... somehow the idea of eating something cold is soothing to me when I'm in a searing hot pain from IC. I also take over the counter uristat (a brand of pyridium) it calms my bladder down marginally. Also, my doctor has prescribed detrol to be used when flaring because it stops your bladder from spasming. If your flares are quite common, you might want to talk to you doctor about pain medicine. Some people on this board have a standing prescriptions for pain meds. for their IC. Good luck, and welcome!

Some good suggestions Insegraves. I just got off of Urised which is a little more strong than Uristat. But It give me very loose stools(not sure why) so I can only take it for about 3 or 4 days. Your vanilla Shake idea I really love. Yum! I think I probably need to try the hot bathtubs. For awhile when I took extra Naticor and Serralone it helped within 48 hours. This time it did not.
I am worried I am getting worse. My last flare up was partially triggered by having Fresh strawberries. That ended up being a BIG mistake. darn it.

[jrn1]

Oh yeah, I did take Elmiron for about a year right after I was diagnosed. But it never did help me. I soooo wanted that to work.

[mary124]

Well I'm another female-(sorry!!) but we're all in the same boat. Just came out of an awful flare last week, had to go to work as I work for the state and the Legistation(?) is in session so I had to be here!! I just pretty much sat at my desk and did computer stuff and put some filing together- now that I'm better, I've been filing all day long!!
Heating pads work wonders! have one at work and home. Too bad Elmiron didn't work for you, I've been on it since 1997 or 1998 (can't remember. I was dx back in 1992 when I was 32 (now 47) My husband has been wonderful with this. Besides, this I had open heart surgery a few years ago, and a few other things going on. I really don't know what I do without him.
Anyway, welcome to the site. glad you can join us, but not glad that you have IC.

[Berkshire Road]

There are definitely guys around here! If you scroll down further, you'll see there's even a special forum for men with IC. Try PM'ing Tip and IBS; he's a guy. Sorry, that sounded weird even to me after I wrote it. Oh well, English is my second language (and also Tip's). Sorry, I'm flaring badly today and I'm kind of heavily medicated, I'm not usually so incoherent. I just wanted to give you the username of another guy. 'Tip and IBS' is his username.

[jrn1]

Thank you Carolyn and Mary for replying. I am fine with talking with either sex about the problems of having IC. So I hope I did not mislead you into thinking I only wanted to talk to men about having IC. We are all in the same boat. One question I wanted to ask is how often do you all of you travel. I had a major flare up during a vacation trip and it was awful. I no longer like to travel much at all. I know my wife would like to but I get very nervous before we go and this in itself can cause you to flare. So do most of you still travel out of state or do you limit your trips?

[mary124]

I don't travel - (only going back and forth to work which is about an hour each way of course depending on traffic & weather so sometimes it could be more. This weekend; I will be going to Houston (about 3 hours from home) for my Nieces graduation from College. We usually go down there about every 3 to 4 months to see family (we are the only ones that live up here so its easier for us to go visit then for them to come and see us- or thats what everyone tells us!!) But I have found out it does put me in a small flare. Usually I'm more tired and even though we will be home early on Sunday afternoon, I will probably stay home from work on Monday because i will be exhausted.

[jrn1]

Well I am sorry you have restrictions on traveling too but I do feel better that I am not the only person who has trouble with travel. Thank you so much for responding Mary. For many years I felt like the only person who has this problem.

[pj77]

First of all let me say, I'm really sympathetic to your pain as I have been there. And I would say everyone on this board has been there and knows what you are going through. So know that you are not alone, that it is estimated that there are about 1 million of us, and that's just the diagnosed ones. Women, men, children, teenagers.

I'm another women, but I do believe there are so many men out there, they are just not as likely to come to the boards and also I believe so many are misdiagnosed with prostate issues, like yourself.

Since you've been living with this for 14 years you've probably tried it all, but I'll suggest a few things anway, just in case.

-The heating pad really helps, I have to get a good one that gets really hot. I have also used those homemade pads, they are filled with rice and you heat them in the microwave, they are nice when you don't want a cord attached to you. You can find them on ebay or the internet they are usually called rice bags. And sometimes heat does not feel good and I use ice with some water in a zip lock bag.

-Have you modified your diet? There is a great guide on here for suggestions of things to maybe avoid. I know personally the big acidic things I try to avoid or limit or take with Prelief which helps knock out the acid, coffee, tea, alcohol, pop, acidic juices, and tomato and spicy things are the major ones.
and Prelief taken with food can help neutralize it, you can order it online or usually they have it at certain drugstores.

_ Have you tried pyridium , (there is a bunch of generic names too) the stuff that turns your urine orange. It is a painkiller specifically for the bladder. They have prescription pyridium plus which is is a little stronger and has an extra painkiller in it. Which you will have to get from your doctor. And you can buy the less stronger version over the counter too. Usually it's in the womens' section at the drugstore, next to all the other women's stuff. Some brand names are AZO, Uristat and Cystex. The are advertised as pain relief for UTI's (urinary tract infections) but they really help some IC people including me. You can buy it on drugstore.com. they have it all. Just type in uti. Of course the prescription stuff is stronger and may help more if the over the counter stuff does not help you-you can ask your doctor for some for flares. Some presription pain killers can help too, for a bad flare sometimes just a tylenol 3 or something like that- that maybe your doctor will let you try for flares/pain.

I have found the pyridium works wonders if you have to sit for a long time, in a car ride or plane trip.

_ also I have found this works wonders, I sit most of the day at work, they sell a chair pad cushion on here, in the store section. It works wonders because it has the center cut out, and therfore takes the pressure off of your center area. This works well again if you are sitting for a long time and especially well if you are flaring. I found the cover was a little too tight on the pad though, and didn't get maximum benefit from it, so I just took the cover off and put the cushion in my own extra pillow case cover. I leave mine at work on my chair.
LOL don't be embarrased by it-I take it with me if I'm flaring and if anyone asks you about it- and well you can always just say it's for my back LOL.

Ok once again , you may have already heard and tried all these things, so sorry if I went on and on. I just know that how it feels-- mine feels like a burning hot coal in my bladder, and the pain can be unbearable-- and these things have really helped me.

Good luck to you!

[jrn1]

First of all let me say, I'm really sympathetic to your pain as I have been there. And I would say everyone on this board has been there and knows what you are going through. So know that you are not alone, that it is estimated that there are about 1 million of us, and that's just the diagnosed ones. Women, men, children, teenagers.

I'm another women, but I do believe there are so many men out there, they are just not as likely to come to the boards and also I believe so many are misdiagnosed with prostate issues, like yourself.

Since you've been living with this for 14 years you've probably tried it all, but I'll suggest a few things anway, just in case.

-The heating pad really helps, I have to get a good one that gets really hot. I have also used those homemade pads, they are filled with rice and you heat them in the microwave, they are nice when you don't want a cord attached to you. You can find them on ebay or the internet they are usually called rice bags. And sometimes heat does not feel good and I use ice with some water in a zip lock bag.

-Have you modified your diet? There is a great guide on here for suggestions of things to maybe avoid. I know personally the big acidic things I try to avoid or limit or take with Prelief which helps knock out the acid, coffee, tea, alcohol, pop, acidic juices, and tomato and spicy things are the major ones.
and Prelief taken with food can help neutralize it, you can order it online or usually they have it at certain drugstores.

_ Have you tried pyridium , (there is a bunch of generic names too) the stuff that turns your urine orange. It is a painkiller specifically for the bladder. They have prescription pyridium plus which is is a little stronger and has an extra painkiller in it. Which you will have to get from your doctor. And you can buy the less stronger version over the counter too. Usually it's in the womens' section at the drugstore, next to all the other women's stuff. Some brand names are AZO, Uristat and Cystex. The are advertised as pain relief for UTI's (urinary tract infections) but they really help some IC people including me. You can buy it on drugstore.com. they have it all. Just type in uti. Of course the prescription stuff is stronger and may help more if the over the counter stuff does not help you-you can ask your doctor for some for flares. Some presription pain killers can help too, for a bad flare sometimes just a tylenol 3 or something like that- that maybe your doctor will let you try for flares/pain.

I have found the pyridium works wonders if you have to sit for a long time, in a car ride or plane trip.

_ also I have found this works wonders, I sit most of the day at work, they sell a chair pad cushion on here, in the store section. It works wonders because it has the center cut out, and therfore takes the pressure off of your center area. This works well again if you are sitting for a long time and especially well if you are flaring. I found the cover was a little too tight on the pad though, and didn't get maximum benefit from it, so I just took the cover off and put the cushion in my own extra pillow case cover. I leave mine at work on my chair.
LOL don't be embarrased by it-I take it with me if I'm flaring and if anyone asks you about it- and well you can always just say it's for my back LOL.

Ok once again , you may have already heard and tried all these things, so sorry if I went on and on. I just know that how it feels-- mine feels like a burning hot coal in my bladder, and the pain can be unbearable-- and these things have really helped me.

Good luck to you!

pj77, thank you so much for your informative post. I have tried just about everything you mentioned other than the heating pad placed on top of the badder area. Next flare up I will have to try this. I do my best to modify my diet(though I slip up time to time), I take Prelief with meals,I take urised when I have flareups ect. I am also taking Systamatic Enzymes(Naticor and serralone+ Bladder Q)on a empty stomach 3 times a day and that seems to help a lot. Though if I have a severe flare up it can take up to a week or more to work.
I appreciate you taking the time to reply. I've known I have IC for about 10 years now. Though I had it much longer. I was hoping someone would figure out the root cause for IC so we could get a cure. But it looks like that may take a long long time if ever. I have to pay closer attention too ALL my triggers to flare ups.

I would like to ask a question of people on here. I want to phrase this right. Have any of you found having sex can be a trigger to a flare up of IC? Cause from time to time it has for me and it freaks me out.(not every single time but often enough) It's not like I want to give that up for life.
But the results can also be unpleasant. What does eveyone do? I have NOT asked my Urologist what to do yet? Cause I figure they wouldn't have an answer to this uncomfortable question. Thanks.

[born2swim]

Hello and welcome! I just joined this site and it has been a tremendous help (with information, support, or just a place to vent when we have a bad day).

I'm sorry you have IC, but I'm glad, after all these years of suffering you finally got a diagnosis and are on the correct treatment!

[GriffsMommy]

yes Yes YES sex can cause a flare. Sex usually puts me into a flare and I think most of the people on the boards. I'm not sure what you would do as a man to avoid a flare. Women usually try to relax before hand, take pain meds and something like pyrdium right before or after. I usually use a heating pad afterwards. Honestly though no matter what I seem to I usually flare aftewards. Maybe some of the other men that are on the boards will have suggestions for you.
Glad you found our site, sorry you have IC.