is there any other man out there?

[MARK]

IM A NEWLY DIAGNOSED MAN,ARE YOU HAVING THE SAME SIMPTOMS as me.IS THERE ANYONE OUT THERE?

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[This message has been edited by MARK (edited 02-23-2001).]

[D_Belvo]

Hello Mark,
Yes there are other men out
here with IC. Hope you are doing OK.
------- Daniel ------------------

[MARK]

HI DANIEL,HOW LONG HAVE YOU HAD IC,I WAS JUST DIAGNOSED A COUPLE MONTHS AGO.THIS THING HAS CHANGE MY LIFE.HOW ARE YOU DOING WITH IT,I HOPE OK!HAVE YOU FOUND ANY RELIEF WITH ANY MEDS.I TAKE ELIVAL IT HELPS SOME.DO YOU HAVE ANY ALLERGIES?BECAUSE I THINK THATS WHATS CAUSING MY CONDITION,WHO KNOWS.WELL ANYWAY HOPE TO HEAR FROM YOU.MARK

[D_Belvo]

Mark,
I hope this is o.k., here is my e-mail
address: [email protected] .
I have had it for over ten years. I take
nortriptylene which is very similar to
el****. It has helped more than a little.
The urologist did systoscopic exam and said
it was IC. Nothing helped. I ended up self cathing before bed and before going out from the house. That was helpful.I also have fibromyalgia and when I started taking the medicine for the fibro the IC got much better. I can sleep with out pain and only get up once a night now. If I stop the nortriptylene it all starts coming back.
Depression, IC, and fibro, not good. What ever you do, don't hold your bladder when you have to go, find a rest room, but I guess
you already know that. good luck
------- Daniel Belvo

[cmn]

Hi mark
i've had IC about 15yrs now.I could write a book about my experience with this nightmare keep posting educate yourself about this keep your head up,talk soon hope u feel well

[pizzadriver712]

hi Mark ,my name is Larry,I'm 44.I found out about a month ago I have IC ,after having 5 back operations, now this.I go every week for massage theropy for my back ,and my massuse thinks accupressue might help the pain .If you or anybody else who might read this wants to email me, my email address is [email protected] well good luck and hope to hear form anyone with their ideas soon, Larry

[Teri]

WELCOME to the new guys so glad that you are here with us. We have a discussion going on the sex board and could use some male opinions, anyone????????
tons of hugs teri

[Ruthie]

Hi Mark,

Welcome to the IC network, I am sorry that you have IC, you will find much support here, even though there are many more women than men with this disease, believe me, we know how painful it can be.

From what my understanding is, IC can be worse for men than women. Hopefully you find the right treatment.

Take care,

Ruth

[James]

Hi Mark- My name is James and I have had IC
now for 2 years. I also have Fibro, TMJ, Asthma and a few other odds and ends. I have not been able to work at my job for 2 years and I am now on full time disability. I live in Canada so I guess we can say that IC knows no boundries. Mark you are not alone. God Bless you and I will be keeping you in my prayers. Try checking out the Christian sight.

James

[MARK]

HEY GUYS,ITS ME MARK ,THANKS FOR THE REPLEYS,THAT HELPS QUITE A BIT.IM GOING TO A RUE DOCTOR TO HOPEFULLY DIANOSE ME FINALLY EITHER WITH FIBRO OR CFS.HAVE YOU GUYS EVER HEARD OF ANYONE HAVING MS WITH IC. I WAS READING STUFF ON MS AND IT SAID SOME OF THE SIMPTOMS IS BLADDER AND STOOL PROBLEMS.THE ONLY REASOM IM MENTIONING THIS IS BECAUSE MY MUSCLES HAVE BEEN TWICTHING ALL OVER MY BODY AND THAT IS A SIMPTOM FOR MS BUT ALSO IS A SIMPTOM FOR CFS.I GUESS I FIND OUT SOON,IM KIND OF SCARED,I HOPE ITS NOT MS.WELL THANKS FOR THE REPLEYS AND I'LL TALK SOON. MARK

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[Murph]

There are alot more of us out there than you think. I was misdiagnosed for over 3 years as having prostatodynia. Finally, I chose a female urologist and on the first visit after hearing my symptoms she deduced that I most likely had IC which was confirmed by a cystoscopy with a hydrodistention. At that time she found that I had "classical IC" with many "hunner's ulcers". Finally, someone believed that I had real pain and I am enrolled in a pain clinic and getting good results with oxycontin and roxicodone. Hang in there, things can get better.

[Sandy]

Hi d Belvo I just read your post and I am female also on Nortryptlinr(sp) I used to be on Elavil for depression and then it was changed to Nortrip because it has less anticholonogeric side effects. Dossn't cause as much retention. I am the same as you if I miss a dose of this it all comes back especially depression. I have been on Elavil so long before for depression I don't really Know when the IC hit. Just happened one night I could not pee. Would like to hear more from you if you would like to correspond
Sandy [email protected]

[Sandy]

Hi James
I to have not been able to work because of IC and was refused Dissa. How did you manage. They told me I had not worked 4consecutive years out of the last six and that is why I was refused.
[email protected]
Regards Sandy I live just north of Toronto

[Larry]

Hi folks. I'm a guy who has been fighting ic for two years. IC has changed my life. I guess that is an understatement. Used to be one of those 12 hour a day types. Those days are gone. I've been thru 2 pain clinics and 4 different doctors. I take the standard meds, including pain meds, elmiron, atarx and am even trying cystaq. I can barely work 4 hours a day, and am trying so hard to hang on to my job. The pain is 7-8 range every day. Any of you guys feel the same way? I work for a fast growing company and have an excellent position, but as I said, I can barely hang on any more. I'm trying to get used to this new life. I think about disability and not working, but this is so foreign to me. I know my life will never be the same. How do you guys deal with this?

Lar

[D_Belvo]

Larry,
I am sorry you are having such a bad time of it, I can relate. I used to have to sleep sitting up on the couch, to keep the pain down and the pressure off my kidneys. I went to an urologist and they did the cystospopic exam and found the IC. It felt like I had to pee all the time, and I made several trips a night to the bathroom. I had so much retention I ended up using a cath. I would say that was the turning point to getting better. Is your pain in your lower back? That is probably kidney pain if it is.
There may be hope; I have been trying to get people to read the book,
“ What Your Doctor May Not Tell You About Fibromyalgia.” In the book it says that the cause of fibro and IC may be the same thing and he gives the chemistry and theory. He has had a 90% success rate with fibro and IC. Here is a quote
From the book:
“Guaifenesen eventually clears IC complaints. Bladder symptoms initially intensify and cycle in the same way as the other symptoms of fibromyalgia. Reversal
attacks are progressively less and less severe with each cycle until they disappear completely.”
If you want to write my email is [email protected]
Wishing for all Love and Health ---- Daniel