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vm · 07-21-2003, 07:21 AM

One thing you can be pretty sure of here - I doubt anyone would tell you it is in your head. Too many people here have been told that, so the phrase is kinda taboo here. wink LOL

I don't know the answers to your question, but you can browse past topics. If you click open the topic "Newly Diagnosed Man" and then look towards the top right hand side of the page, you will see a heading "Show Topics from last 20 Days". You can click on that to show topics from further back and I know I have seen this mentioned before.

The other thing, which you might think I am just saying to make you feel better - but I am NOT - is that if I dated and fell in love with a man who was impotent - I would still love him. It absolutely would NOT prevent me from getting into a relationship. I can honestly say that. So much is more important about a man and I am sure there are other women who feel this way, too. I know it must feel scary to start dating and then wonder when and how to bring it up, but please know that some women would be quite understanding and patient.

Good luck - I hope some men wander over and provide some feedback for you.

**ICNJess** · 07-21-2003, 07:37 AM

Kim is exactly right!! I was told IC was in my head...one doc called me a hypochondriac and told me it was in my head...I know it's not in yours! And I agree with Kim on another point...if my husband were impotent (sp?) I wouldn't love him one bit less. As it is, with IC, I am somewhat unable to perform also, because it is too painful. Many women are...and our men love us just the same. I'm a newlywed and have a very patient husband. I'm only 20 years old...so it's a bit much for me that I can't be there for him that way as much as I'd like to. Also I'm going to pelvic floor dysfunction therapy...I am not sure if they can do that for men, you might want to look into it. Good luck, and remember...THIS IS NOT IN YOUR HEAD!!!!

Hugs,
Jess

**auntiedeb** · 07-21-2003, 07:52 AM

I agree with Kim and Jess, I am single and 42 years old and still a virgin. It is not in your head. I would love the guy no matter what. Its inside your heart that counts not inyour pants. there are others ways to be inmate with someone. You can hug, cuddle, hold hands, kiss and be there for one another. It is not all about sex. I hope that the men will wander off here too and offer you some suggestions as well. You are not alone. I have ic too. Keep us posted and let us know how you are doing. grouphug

**gwyn** · 07-21-2003, 07:57 AM

i agreee with kim and jess and aunt...
it is not in your head!!!!!!!!!!!!!!! and we love a guy the way he is!!!!!so don't worry! kissing

**Tim** · 07-23-2003, 03:02 AM

Martin,

I'm a newly diagnosed with IC guy in his mid twenties. Although I don't have the impotence problem, I can imagine how you feel. Us guys have a tendency to couple manliness with our tools. Don't let that get you down though. Most women are a lot more compassionate than us men, and will love you anyway. Don't let it get you depressed and don't let it affect your self confidence.

And although you're probably reluctant to even consider this, have you thought about talking to a doctor about Viagra? It could really help.

Wish you luck.

**Misery** · 07-23-2003, 11:18 AM

Tim is right !!!!!!!

Please hang in there,I know how you feel...and it
is very scarry in the beginning, to say the least.
You've come to the right place to vent..so use it !!
Please consider going on antidepressants.....I know, just hear me out..please !
I myself was a healthy young female, when I was D/X with IC !!! I too, wanted to DIE !!!
Zoloft has been a real lifesaver 4 me and I am in remission....!!!!!!!!
Please get help for you mental state of mind...I know it is scarry...but help is out there, and you need all the help you can get right now to fight this demon !!!!!!!
You can do it...and were here to help !! kissing grouphug
Christine

**KathleenS** · 07-26-2003, 11:48 AM

Martin,

I just have to add my two cents and agree with the other women who have posted a reply to you here - for the right man, a woman will understand, it will not matter to her like you think! My IC symptoms have worsened greatly in the past 2 years, but (after a period of not wanting to go on like this) I have come to believe that this is just a temporary lull in my life. I will eventually find the right treatment and have a full life again - and so will you! Just keep reminding yourself of this! It's going to get better!!

Kathleen

**Derrick** · 08-01-2003, 01:08 PM

Hi Martin,

I can totally relate to your problem of having IC and erectile dysfunction.

The onset of my IC symptoms began Feb 1995. At first it was just a frequent need to urinate. Each time I went to the doctor, I was told that it sounded like I had diabetes, but nothing ever turned up. (At this point, I knew nothing about IC.)

In 1997, my IC symptoms went away. At the time, I attributed it to having finally cleaned up my act in terms of eating a more healthly diet and getting on an exercise program of running. Thoughout the rest of 1997 and into the better part of 1998, I was running like crazy and looking and feeling great about myself.

In October of 1998, I ran the Marine Corps Marathon and the week after I finished, I began urinating again upwards of 20 times a day and for the first time needing to get up at night while sleeping to go to the bathroom.

In January of 1999, I sought out a urologist in Kirkland, Washington and was told after NO diagnostic tests, that I had non-bacterial prostatitis. (At the time, I had no idea what this was.) He basically told me that there was nothing that could be done and sent me out the door.

Then in November 1999, I turned 30 years old and developed erectile dysfunction for the first time in my life. I can tell you that it was terrifying since up to that point, I had never ever ever had a problem in that department. (I can remember times in college being completely plastered and being able to perform flawlessly.)

So when the ED set in, that scared the hell out of me. I immediately went back to the doctor. I was told that it was all in my head and that I needed to see a sex therapist.

Anyway, to make a long story short, I found a doctor at the University of Washington who performed a cysto/hydro in Aug 2000. Based on the cysto pictures, he told me that I have IC. As far as the ED was concerned, he wasn't exactly sure why I was having that since most guys with IC don't have ED.

I was then referred to a couple other doctors within the urology department at the UW in Seattle. I underwent a whole battery of tests that included sperm analysis, prostate fluid analysis, prostate biopsy, uro-nerological (they hook electrodes up to your penis - this test isn't for the faint of heart I can assure you), CAV-VAS (ultrasound test that looks for leaks in veins/arteries to and from penis - a very painful test I might add with a ton of bruising when finished. You go home with an Ace bandage wrapped around your penis.), and MRIs from the top of my head to my crotch. I then went and saw a endocrinologist and had a complete LH-RH test.

I even underwent some a special test where they took a number of bladder biopsies and performed PCR-DNA test on the tissue samples looking for evidence of bacterial DNA.

To my absolute amazement, everything turned up negative and the doctors had absolutely NO explaination on what could be going on with my erections. What I found even more shocking was the realtive lack of regard or concern on their part. They sort of treated me like I was "weird" for wanting to get my erections back. They're attitude was like, "Let me just write you a prescription for Viagra."

Last year, I particpated in the BCG trial at Stanford University. While I'll never know if I had the real thing, I know that I did. I underwent the six installations, and didn't get any better. (I didn't get any worse either, so I guess there's something to be said for that.)

Prior to the BCG test, I tried all the common treatments for IC, including: Elmiron, straight DMSO, DMSO cocktails, Flomax, Atarax, etc. You name it, I've pretty much swallowed it or had it poured into my bladder.

I investigated DMSO2 with a doctor in Portland, OR. To my shock, I could not find a single doctor in Seattle (and I went to a lot of doctors - naturalpath as well as my family doctor) that would follow the DMSO2 protcol laid out by the doctor in Portland.

I have since taken all my medical records and complied them in a giant three ring binder. I've tabulated everything, and written summary information at the front listing every drug, test, and procedure I've undergone for both IC and the ED.

I've taken the binder to a few doctors to get their opinion on what could be going on with my erections. Their reaction upon seeing the binder is, "Holy Smoke! You've had one hell of a work up done on you!" No one has seen anything like it and they have no clue as to why I'm having ED problems.

I've tried Viagra with mixed results. Sometimes it works, sometimes it doesn't but regardless, I ALWAYS get the side effects of blue vision, stuffed up nose, and one mean *** headache afterwords. It almost makes engaging in sex not worth the pain I have to endure later.

So in summary, I guess you can say that "I've walked a mile in your shoes." Having IC is one thing, having IC with ED is a whole other ballgame. It makes socializing and dating that much more complicated. Everytime I meet someone new, I absolutely dread having to explain these problems. While I have cut back considerably on dating since this whole nightmare began, I can say that with the exception of one woman, they have all been pretty understanding when I explain what's wrong with me.

On the social side of things, it's painful to see your friends moving on with their lives and doing fun things. A group of my friends climbed Mt. Rainier last year. I really wanted to go, but knew there was no way for me to do it. Another friend of mine ran the Marine Corps Marathon and wanted me to go as well, but there is just no way. I toyed with the idea of doing it wearing a catheder, but it would be too painful having that balloon bouncing around in my bladder as I moved down the road.

Earlier this year, I relocated to Jacksonville, Florida from Seattle, Washington. In about four weeks, I'm going to undergo the Interstim test to see if that has any effect on my IC symptoms.

Well, that's about all I can share with you on IC and ED. Hopefully the medical community will come up with an explanation soon on what causes this horrible disease within our lifetimes.

Derrick

**ICWarriorHubby-iH8iC** · 08-25-2003, 05:47 AM

I feel for you and I understand that this is shocking to you. I understand that this loss of function may seem like the "worst" thing that could happen to a young man like yourself.

Please don't take this the wrong way, I'm not here to criticize you. I just think you need to look at the "Big Picture". IC can be a horribly painful disease. I can't begin to count the nights I have held my wife as she cried all night, writhing in pain. Even with some of the most powerful pain medications on-board, she still suffers extreme pain. Frequency and urgency are bad as well, (but more easily treatable) and together can cause you to go nuts. But to "not want to live this way" because you can't function sexually just doesn't make sense.

I hope to God that your disease does not progress to the point that other's have. I know many who would take frequency and urgency and lack of sexual drive and/or function over pain ANY day. The chronic pain that this disease can inflict is unbearable. When your meds say "to be used for end-stage cancer patients in severe chronic pain only" the last thing you think of is sexual function. I've gone without sex for years, and couldn't even think of it knowing how much pain it could cause to my spouse.

I don't mean to tear into you, I don't mean to belittle your experience, I'm just trying to help you get a little perspective. This disease can be MUCH, MUCH WORSE. It can rob you of all sleep, put you in constant torturous pain, strip your dignity, spiral you deep into depression, keep you from working/playing/enjoying life and make you want to commit suicide rather than live one more minute hurting.

I'm really sorry, maybe this should be in the "just venting" section... maybe I'll get banned... but it makes me mad when I see real suffering on a daily basis, and then someone wants to end their life because they can't get their wang up. I believe that men with cases of IC(in general) do not experience nearly as much raw pain as women do. Ask around this board, if you're not begging for narcotics just to have 5 minutes pain-free, you're no where near where some of these women are on a daily basis.
When you've tried every therapy, implated every gizmo, shocked your bladder with an electrode, instilled liquids that you've had to sneak in the country under the FDA's radar... When Vicodin doesn't even look like an appetizer, and Oxycontin is a 3X daily dose, and Fentanil patches and suckers wont work, and a dilaudid click-dripper is around the bend... then tell me that you care at all about sex. It's a non-issue when you're really suffering heavily from what this monster disease can bring.

Once again guy, I sympathize, I wouldn't wish this on anyone...but you're a lot more fortunate than most with this disease. Count your blessings. There are ways of making love without having sex, your understanding partner will work with you to get the most out of your love life. Don't hate me for this post, I just have to get it out, there's more to life than sexual function.

ps, that's why God gave man a tongue.

To tell a partner of his love, to taste, to kiss and to give pleasure.

iH8ic = I hate IC

**ICWarriorHubby-iH8iC** · 08-25-2003, 05:58 AM

Martin, I apologize for my coarse tone. I'm having one of those days where I'm just so tired of watching my loved one hurt. I was raging a bit, and I didn't mean to take it out on you. This beast called IC can make a man rage.

Your loss IS real. And it HAS TO be tough for a young guy like you. But take it from an experienced IC Hubby, love isn't always about sex. Hang in there Martin. I hope you can find a way to lead as normal and dignified of a life as possible. Rage on. Fight.

iH8iC

**Teri** · 08-25-2003, 06:00 AM

WOW IC-man!
How perfect to have a post like this coming from a man. When you look at the WHOLE picture, you were able to put it all into words. You have given me, and I'm sure alot of other IC women who's husbands are angry living with no sex for very long periods of time hope. You truly love your wife. In sickness and in health.....she is one lucky person and you are one amazing man.

I'm going to copy your post and show it to my not-so-understanding he-man

tons and tons of huge hugs~

**ICNJess** · 08-25-2003, 06:04 AM

Hi there, IC-Warrior Husband--

I just wanted to tell you that your wife is very lucky to have you. You sound understanding and compassionate, and you truly understand that she is suffering. Does your wife post on the boards? Anyways, I really wanted to commend you on your apppreciation for your relationship with your wife, as well as your patience and understanding to her. Personally, I have an advanced case of IC, and just knowing that my husband is content with just holding me, or knowing that a sweet little kiss on the forehead will make my emotional side feel slightly better, makes me fall in love with him all over again. So, basically, I think it's truly wonderful that you see your wife suffering and understand that she is truly in pain.

**ICWarriorHubby-iH8iC** · 08-25-2003, 09:11 AM

Thanks Teri and Jesser, I hope Martin can forgive me, I didn't mean to do anything at his "expense" or humiliate him for posting his feelings.

My wife hasn't posted here. This is my first time, although I've been a guest for about 4 years, reading, researching. She doesn't want her whole life to be about the disease, so she doesn't come here online. The last woman she tried to talk with in a support group had ended her life within 2 weeks.

When we were first dating she flared once every other month, then monthly, then weekly, then she only had a few days a quarter without a flare, and since then it has been constant for years. She fell in love with me when I bought her some canadian meds at $150 per trial dose (6 doses)and snuck them in for her. Until then no man had ever done anything like that for her, not even her father. Some day you'll have to hear about how we met... it'll stir your heart.

Someone (ex girlfriend I think) once said "You CHOSE a sick wife."

I responded with, "No, I chose to marry the woman I love, she just happens to be sick."

Her IC got worse and worse. Mostly the pain increased. When it came time for our vows, the words "in sickness and in health" came out very slowly and deliberately. In fact I think I said, "...through ANY sickness, and in health... for the rest of MY days."

I hate that I have this beautiful woman in front of me but I can't touch her because to do so would bring her more iritation and pain. I hate that I am gagged and my hands are tied and I cannot express to her how much I love her. I get as frustrated as the next guy, but I signed on for the long haul, I love her.

We only move as fast as our slowest (wo)man.
We Marines (former Recon Marine) never leave a (wo)man behind. Besides, she is MY personal hero... but more on that later.

I've done it all... cursed God and dared him to take me instead --because hey, I'm the 'bad' one, fallen apart crying in the car between business meetings, tried every "cure" invented, and even some that are not "approved", dangled unbelieving doctors by the necktie, and been there for her every step of the way. I think this board needs a RAGING HUSBAND Column, so we too can "rage against the disease".

Thanks for your support gals. It's been one of those days. Your comments helped a lot. -iH8iC

**ICNJess** · 08-25-2003, 09:33 AM

We are glad that you are here!

You are pretty much a veteran of IC! What all has your wife been on for symptom control? If your wife ever decides to post, we will always be here to listen. blink I was pretty hesitant to log on to here and talk, but after being a guest, and my husband's insistance that I find some people that could relate to me (he tries so hard and takes wonderful care of me, but sometimes it is just easier and more beneficial to my sanity that I know there are people that are experiencing my insanity!!!). We have no support groups in my area, so this serves as such. Anyways, welcome, and it sounds like you are doing everything you can possibly do to help your wife, and then some!

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