do i really have ic?

[rmag]

i apologize in advance...this is my first posting, so it will be a bit long.

i was diagnosed in spring/summer of 2005 w/ ic. i got the typical prostatitis diagnosis first and was on flomax for a while and an antibiotic for a week. the symptoms that sent me to the doctor in the first place were what seemed like a uti or possible std (clamydia). both were negative. anyhow, i had urgency, frequency and burning and pain in my pubic area after urinating and a feeling that i had to urinate again soon after finishing. i had a cysto with the hydrodistention done and was given a "mild ic" diagnosis.

today the only real symptom i have, is that i feel like i have to go again even though i don't realy have to. occasionally i experience a slight burning with urination that occurs immediately after ejaculation, but that wears off after 20-30 minutes. it's not the worst thing in the world, especially compared to what others are sufferring with. i was and have generally been down about having anything at all, but over the course of the last 12 months i feel a lot better than i did initially. i rarely, if ever, have pain these days. i take hydorxizine (50 mg at night), take warm baths occassionally and generally try to be conscious of my pelvic muscles. i tend to get stressed out and i now now that i am older that it does effect me in adverse ways (i'm 31). i think it causes me to be constipated at times and is probably one of the biggest causes of my bladder symptoms.

i generally eat what i want, drink alcohol, etc. i have cut out caffenine and i do use prelief with decaf coffee and certain foods, but i can't help feeling that ic is not my problem. there are so many diseases and problems with overlapping symptoms. based on my stress level and occasional constipation (and the straining that comes with it) i wonder if my problem is truly just PFD. how do you know? i can't seem to find a male PT. i don't have an issue seeing a woman, but the ones i have found on the website in the boston (mass) area seem to treat women only and my urologist, while a nice guy, seemed clueless about pfd or how to find a PT.

can someone tell me if i am way off. it just seems based on what most people on this site are dealing with, my symptoms are so minor. plus everything i read seems to suggest that a cysto is no longer the most conclusive way to determine a diagnosis of ic. what is the true meaning of ic? what symptoms do you have to have to be truly diagnosed? if i do have a mild form of ic, does it get worse? since my bladder did show some evidence of petechial hemorrhages, should i take something like cytoprotek or alganot?

is there anyway of knowing if my symptoms are caused more by pfd than ic? i do sometimes feel like i have to push to urinate by tightening by abdominal muscles. my stream is weaker, but by now means weak. sometimes my bladder feels full enough to cause me to go to the bathroom and the amount of urine i let out is not earth shattering; but again it's not just dribble.

so much more to talk about, but would love to get some feedback on the above for now.

[Janie Miranda]

Hi there. I'm not a guy but I wanted to welcome you to the ICN and say that I am very sorry for all of the discomfort you are having. I hope some of the men on the boards will come along soon and can maybe answer some of your questions.

[Sleeper Service]

Hi.

I have similar symptoms although I have not as yet been diagnosed. In any event I'm going to go out on a limb here and suggest that it is definitely worth your while seeing a PT who knows what they're doing to see if they can resolve your problems. CPPS/IC seems to take many forms and, frankly, it seems to me to be kind of a 'catch all' diagnosis for a variety of differing symptoms.

The website www.chronicprostatitis.com has a list of recommended PTs although you may have to register to see them. I've just started working with a PT and we have found numerous external and internal triggerpoints (small, painful knots of muscle and tissue) and contracted muscles that could be causing some of my symptoms - in particular the constant urge to urinate can be caused by muscles pulling on the uretha and bladder which can in turn irriate the nerves. The trouble is that if you don't treat the muscles then the nerves never get a chance to relax and heal and all you're doing then is treating symptoms with pallatives.

The hydro with distension is useful for diagnosing IC but at the same time it's far from infallible. As my doctor says, the trouble is that because CPPS and IC aren't generally fatal diseases (at least not in the conventional sense!) they've simply not had the research needed to develop firm diagnostic tools and treatments. Of course, with the advent of the internet and the realisation that there are millions of people with CPPS/IC symptoms this is changing.

I guess my main point is that you owe it to yourslef to explore every avenue you can. I firmly believe that IC - or CPPS as I prefer to call it - isn't one disease but a whole host of ailments bundled together. You just have to look at the post on this site to see the lack of homogeneity - differing symptoms, differing responses to drugs, differing remissions/relapses. I firmly believe that CPPS can be cured or at least controlled but you need to find out what works for you.

[Hangin' Tough]

RMAG
Sorry that I haven't made the rounds of the board much lately. I am a 40 y/o male dx'd over 3 years ago with IC. Frequency and urgency are not my main symptoms but are included in my list. Severe pain is my most prominent symptom. They are all tied together. I urinate up to 40 times per day. I ALWAYS feel like I need to pee. It is a real pain, literally and figuratively. If I don't empty my bladder, I hurt. If I really hold it for a long time, the pain can be incapacitating and I end up "locked-up" and have to self cath to empty my bladder. I still work, somehow, but make many, many, many trips to the bathroom, sometimes for nothing. I have tried the ditropan for the frequency/urgency, but find that it usually causes retention which causes the horrific pain, so I have just learned to deal with the multiple trips to the john. If you have other questions, please post, I will check the "Man Page" more frequently.

Tough

[kingofpain]

Rmag
I'm a male with symptoms as well. You didn't mention if you got any relief of your symptoms after the cysto/hydro. Many IC pts get relief from that, and thet could be a clue. I've sufferred with symptoms(burning pain in my urethra,especially post-urination and post ejaculation, with a constant feeling of having to pee) for more than 2 years now. I had an in office cysto(no hydro, no anesthseia) which revealed nothing, but miraculously, my symptoms vanished for 6 months! Of course, when thay returned, we tried another cysto, but no improvement this time. I've been on every med(flomax, proscar, elavil, valium, alleve, feldene,saw palmetto, pygeum, quercitin, antibiotics, cerniton, urised, pyridium, prelief, oxbutinin) but nothing seems to help. Dr. Moldwin, an IC guru, diagnosed me with chronic prostatitis/CPPS
with PFD, prescribed valium and warm baths and PT. The valium and warm baths do nothing, nor am I constipated, or have a weak stream of urine, so I don't think it is PFD, so I haven't gone for the PT. I've been to 4 urologists and all are clueless at this point as how to help me. The last uro I went to says when all other things have been eliminated, you are left with IC as the diagnosis. He offered the cysto/hydro option to try to definitively diagnose me, or just start on elmiron, to see if it helps. I elected to try the elmiron option, but it caused blood in my stool. So before I can continue with it, I have to have a colonoscopy to rule out any colon tumors. That's where I am now. I do have some unusual symptoms also: most meds make the urethral burning worse although foods don't, sometimes it feels like there is a shard of glass in my urethra, and just before I have BM the burning mysteriously subsides, only to get twice as bad after the BM. So here I sit, sorry for no answers, hope this helped, just know you are not alone!

Kingofpain.

[ICNDonna]

I'm not a male either, but I do have one suggestion and that is to talk with your doctor about your constipation problem. I may be that something as simple as taking a stool softener will erase that problem. It's never a good idea to strain; it can really raise havoc with your pelvic muscles.

Donna

[Sleeper Service]

King of Pain - I would strongly recommend that you explore PT as an option for your symptoms although you need to make sure the PT you use is familiar with myofascial release and understands internal PT.

PT is not just about relaxing muscles that valium and warm baths may do, it's about stretching out chronically contracted muscles in the pelvis and abdomen. I know of people with similar symptoms to yours who have benefited from this form of treatment.

[ICB]

. . . i had a cysto with the hydrodistention done and was given a "mild ic" diagnosis. . . i wonder if my problem is truly just PFD. how do you know? i can't seem to find a male PT. i don't have an issue seeing a woman, but the ones i have found on the website in the boston (mass) area seem to treat women only and my urologist, while a nice guy, seemed clueless about pfd or how to find a PT. . .

Hello:

A great website to check out for Pelvic Floor Dysfunction and Physical Therapy is www.roadtoslainte.blogspot.com. There are many articles that you may find helpful. Some include:

1. To Kegel, or Not to Kegel . . .
2. Pelvic Floor Therapy
3. Let's Go! Really Go!
4. Language Barrier

The website is written by a physical therapist that specializes in pelvic floor disorders; she treats many IC, Chronic Pelvic Pain, and Vulvodynia patients. Moreover, I have a PFD Fact Sheet and several informational handouts that are specifically for men that you may want to share with your healthcare provider; if you would like to receive them, please send your request for "Male PFD Info" to icrelief@verizon.net.

Furthermore, I just found out from a male patient that Stanford (in California) offers a 6-day Comprehensive Pelvic Pain Intensive Clinics for the Stanford Treatment Protocol; you can find more information at www.pelvicpainhelp.com.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB

[wci30]

My suggestion is that you RUN and not WALK to a physical therapist specializing in pelvic floor dysfunction!! I'm finally getting some relief after many years of frustrating appointments, treatments, medications, and surgery initiated by several urologists. Take care.
Bill Rmag
I'm a male with symptoms as well. You didn't mention if you got any relief of your symptoms after the cysto/hydro. Many IC pts get relief from that, and thet could be a clue. I've sufferred with symptoms(burning pain in my urethra,especially post-urination and post ejaculation, with a constant feeling of having to pee) for more than 2 years now. I had an in office cysto(no hydro, no anesthseia) which revealed nothing, but miraculously, my symptoms vanished for 6 months! Of course, when thay returned, we tried another cysto, but no improvement this time. I've been on every med(flomax, proscar, elavil, valium, alleve, feldene,saw palmetto, pygeum, quercitin, antibiotics, cerniton, urised, pyridium, prelief, oxbutinin) but nothing seems to help. Dr. Moldwin, an IC guru, diagnosed me with chronic prostatitis/CPPS
with PFD, prescribed valium and warm baths and PT. The valium and warm baths do nothing, nor am I constipated, or have a weak stream of urine, so I don't think it is PFD, so I haven't gone for the PT. I've been to 4 urologists and all are clueless at this point as how to help me. The last uro I went to says when all other things have been eliminated, you are left with IC as the diagnosis. He offered the cysto/hydro option to try to definitively diagnose me, or just start on elmiron, to see if it helps. I elected to try the elmiron option, but it caused blood in my stool. So before I can continue with it, I have to have a colonoscopy to rule out any colon tumors. That's where I am now. I do have some unusual symptoms also: most meds make the urethral burning worse although foods don't, sometimes it feels like there is a shard of glass in my urethra, and just before I have BM the burning mysteriously subsides, only to get twice as bad after the BM. So here I sit, sorry for no answers, hope this helped, just know you are not alone!

Kingofpain.

[sami4]

Hey Guys:
Just have to tell you all that a book I recently bought turned out to be more relevant for males with pelvic pain, and pelvic floor disorder. It was called, A Headache in the Pelvis, Third edition. It had exercises in it as well as tons of tips for various pelvic, prostate, and pain problems men face. The physican who wrote the book originally developed his protocol with males. Check it out, its not expensive and its by Dr. Rodney Anderson, MD and David Wise, PH.D..
Sammie

[plaedes]

Kingof Pain have you been tested to see if what you have is prostate stones? i have been doing a lot of reading the last couple of days for my father. he is at the Uro today. I'm hoping we will have some answers soon, but i had never even heard of prostate stones until yesterday. it was just a thought and if not i wish you much success in your treatment....all of you.

[ICguy]

for rmag and kingofpain I'm not sure if you had this done yet but you need to get another bacteria test done but you have to get it done with prostate mashing. With pain after sex and urination, lasting for a more then 10 min could be that the bacteria comes out sometimes but stays in the prostate, Why the mashing? because some bacteria will be in your prostate and won't be seen in a regular bacteria test, it stays in their as is released by force, especially if your symptoms come and go this could be a problem and if you have pain for 20 min after ejaculation and urination

[lonedog]

rmag, I am a male and have had diagnosed IC for about 6 years. I had it for several years before that but was mis-diagnosed by the medical community. In the early stages of my diseae I could still drink alchol and cokes etc. with little or no affect. I started out having pain when I walked a long way or rode on a 4 wheeler. I would occasionally get burning pain from ejaculation. Since I was not properly diagnosed I contimued doing all the things an IC patient shouldn't do and got worse. Finally a uro did a hydro on me and I went into remission for a year. The hydros have continued to put me into remission until this year. Even though I was in remission acidic food, excessive walking etc. would cause a flare up of symptoms. I am currently trying to get my disease back into remission. My point is be sure that you do or don't have IC because if you do and continue to do things that hurt the bladder the disease may get worse as mine has.

Lonedog