5 year male sufferer wants to tell all

[kenneth d. pettingill]

i have been through the ringer. for 4 years doctors tried to tell me i was causing this myself. suggested i get professional help. i di and the symptoms continued. what i know is this: i have something with my bladder. if i eat chocoalte or drink beer or have spicey foods i pay dearly for the next several days. usually burning in the pelvic region is the first step, followed closely by joint pain (getting worse all the time) and fatigue. i have been on elavil and tagament for almost two years. they worked at first but it never eliminated all the symptoms. i guess i could continue to up the dosage but that makes me very nervous. i started elmiron this morning. the reason i came on this web page is because i don't like taking new prescriptions and i was worried about the possible side affects. anyway its been since 1996 when one day i woke a different man. i went for a jog and when i got back i was shaking from the exercsion. i had been running three miles a day for years. when i went to the doctor they gave me antibiotics which almost worked. they almost took it away, but than it came back and it does not matter what antibioitic i take it does not work. even makes my symptoms worse! 5 years later finally brought the diagnoses. "I.C". what i know for me is diet is huge. my problem is i seem to have difficulty staying with foods that are safe. call it a lack of self discipline, but i stillstruggle today. prelief has helped but i have to take so many i get sick from them. what concerns me the most about this disease is the joint pain and fatigue. they go hand and hand. i can handle the bladder pelvic pain, but the joint pain and fatigue scare me. they usually accompany a flare up and can last a week if not longer. i still run though not nearly as often. i hope the elmiron works. for male suffers don't let the doctors try to convince you that it is all in your head. i was not in my case. i am going to fight. i want my life back. i have been living life at 50% to 75%. i have never been 90% or 100% and maybe that will never happen. i know if i give up i lose, that is not an option. if you are a fellow male sufferer e-mail me at [email protected] i would be intrested in your story. thanks all for letting mr ramble. it always seems darkest just before tehe dawn!

[Teri]

Welcome Ken [img]biggrin.gif[/img]
I was just reading a pamphlet from the ICA in the uro's office about men with IC. Women are finally being dx'd but unless you have a uro who KNOWS about IC and you are a male, it looks like you are having a harder time getting dx'd than we are.
I am sure that I've had IC for all of my life because I have always lived in pain but I had a mother who told me to shut up it was all in my head for all of my live so by the time I was an adult I just accepted it. There were nights when I was young that my father would have to carry me to bed because the pain in my legs was so intense I couldn't walk.....growning pains she would say, right mom! And, I thought that peeing a zillion times a day was completely normal. Infact, I didn't know that a 'normal' person peed about 7 times a day until I was 45 [img]eek.gif[/img]
I WAS able to live and lead a pretty normal life until I had a bladder suspension and then the bottom of my life fell out. With the IC and then the dx of fibro to follow. Quitting my job of 17 years, spending the time away from home in dr's offices etc etc etc. The same picture that so many of us have.
For me, for 10 years having hydrodilations every 6-9 months helped tons. Then the dreaded bladder suspension and that's when I started with all the treatments that might work.
I now have the interstim implant. I was having wonderful results with it for 1 1/2 years. Then a problem. Had to have surgery again and so far (since Oct) I'm not having much luck but I'm trying to hold on to at lead a shread of hope. That 1 1/2 years of peeing about 7 times a day is something that I KNOW is possible and I want it back. The pain, I have finally gotten lucky and found a uro who isn't afraid of medication and the authorities. He is definately an IC advocate and has recently been asked to speak in Rome regarding IC....with him in my corner I have FINALLY, after all of these years, got a handle on my pain. So, I know there is hope out there! We just can NEVER give up.
Sounds like you have a great attitude and I sure do hope that you decide to become a regular. It's so great to hear how the opposite sex lives with and deals with IC.

tons of hugs...
and again, WELCOME [img]biggrin.gif[/img]

[ICNDonna]

Welcome to the IC Network. You'll find a lot of information and support here.

It's not unusual for physicians to consider IC as a women's disease --- and the largest percentage actually are women --- but we are seeing more men being diagnosed recently then we did even a year or two ago.

I know the diet can be difficult --- and I slip sometimes too --- but by and large I follow it pretty closely. I know that if I don't, I will pay for my indiscretion!

Sending a welcoming hug,
Donna

[kenneth d. pettingill]

thanks for your replies. i appreciate the support and the stories. i started the elmiron yesterday. very upset stomach and a headache, other than that would not know i was taking it. is elmiron worth trying? does it usually work? i came off the elavil and tagament because i did not want to take that many pills. ciming off those two drugs i realized that they both brought relief. i just could not see uping the dose evey 6 months to a year. long term it is not the answer. anyway thanks again will keep all of you updated as to how well the elmiron works.

[Murph]

Ken:
Welcome to the ICN. I am a 38 year old married male w/ a 5 year history also of IC (Classic w/ Hunner's ulcers). I can identify with your complaints/problems. I have pain in the bladder, pain as if an elephant is stomping on the bladder or my pants/underwear are way too tight, bloating, joint pain in the hips and back, and extreme pain episodes w/ simultaneous peeing and dumping w/ horrible cramping like pain. Elmiron helps with frequency and abates some of the pain, not all. I wasn't sure it worked until recently when I ran out for a week waiting for mail service rx to come. I've had to give up my beloved Coca Cola, caffeine-free as it is now just too painful. Same for coffee, pizza, alcohol, spaghetti, beer, or anything remotely spicy. I take the following meds:
Elmiron 100mg 3 x day
Ativan .5mg 4 x day
Paxil 40mg 1 x day
Prelief & Tummy Tamer before every meal/drink
MS Contin 30mg 2 x a day
Oxycodone 5mg 4 x a day
All I can say is hang in there. I wish I could say it gets better, but it's just basically same crap, different day with me. I have heard other ICers talk about flares and remissions. I have yet to see anything resembling a remission and my pain is a continuous cycle w/ some monstrous flares thrown in. I am rather unfortunate in that my wife doesn't really understand IC and thinks it's a mind over matter issue and/or something brought on myself. She doesn't see why it's hard for me to get out of bed in the morning, why I am fatigued after work, and why I come home from work frequently to use my pain meds and ice packs. It's almost better to have cancer. That way you either get cured or you die. With IC the suffering is relentless and constant. I wish I could be the man I once was, but he's long gone and I am left with a shell of what I used to be and that's a shame because I have a 3 year old daughter that I'd like to be able to devote my full energy and uncompromised devotion. This sucks!