A Man's Story

[Murph]

Hi there. I am posting this at the suggestion of Teri to give a man's point of view. I am 37 with a wife and 2 1/2 year old daughter. I had suffered for 3 years with what I had been told by 3 male urologists was nonbacterial prostatitis. Each did a cystoscopy and did not tell me about pyridium for the pain of pissing razor blades afterwards. Each said I had the prostatitis. Each basically ignored my pleas for some pain relief and only prescribed an alpha-blocker like hytrin, cardura, or flomax. I was told by the last uro that the "little pain" I was feeling was magnified in my head and that he would not prescribe any pain medication for a pyschosomatic disorder. Then, I went looking for another urologist and selected a female urologist, Dr. Kinard, figuring she wouldn't take her knowledge of the male anatomy for granted. Sure enough on my first visit with her she listened to my symptoms and said "I believe you have this" and she handed me the ICA pamphlet on IC and men. It described what I was feeling to a T. At last someone understood. There was a catch, though, and that was to have hydro. I said no thanks to the hydro at the time and she gave me some Bactrim. I was back two months later when the pain got bad and had the hydro. Man, what pain after the hydro, but what relief the percocet gave me! The hydro showed classic IC with numerous Hunner's ulcers, severe urethritis, & prostatitis. My family was quick to educate themselves about it and offered every support except for my sister who is a family practice MD. My wife still doesn't quite get it. She is now more tolerant of my frequent half-days at work caused by awakening in pain and having to take breakthru meds. My sister the MD never lets me hear the end of it about being on opioids. I showed her Dr. Brookoff's article and she brushed it off saying he was an irresponsible physician prescribing pain meds for "benign" pain. Thing is, my sister should know something about pain since she is a volunteer director of a hospice and she prescribes massive amounts of opiates for the cancer patients. I tried telling her my case was no different as it was also visceral pain. She wouldn't budge on that point. She believes IC is entirely manageable through diet. Diet doesn't do a whole lot for me. Now I am trying to hang onto my job at the Dept of Veterans Affairs but even they are getting less tolerant reminding me I am subject to layoff first in the event of a Reduction in Force due to my absenteeism. They do acknowledge my expertise and the good job I do, but maintain I am an administrative burden that needs to be jettisoned. I'd hate to be on disability and sit at home as that's just not me. The pain I experience is a vise-grip around the prostate area, pain in my butt like I have been sitting on hard stadium bleachers all day, burning after urination, gnawing pain at the beltline below the navel, feeling as though an elephant is standing on and squeezing my bladder, and IBS cramping triggered by the hypogastric nerve whenever my IC pain gets out of hand. I thought I was finally relieved after the cysto/hydro to at least know what I had, but then I had fleeting thoughts of suicide which disturbed me as I have beautiful baby and wife. So, I am on Paxil for that. IC makes me tired all the time, stiff, and I walk like an old man now. Just mowing the yard, doing yardwork, or banging my wife puts me in alot of pain. I never thought I'd be the one telling my wife that sex doesn't have to be about intercourse only. My wife has been conditioned by my previous attitudes on sex to feel that it is intercourse primarily. Now, I want the foreplay I used to dismiss before. My wife sleeps in the other room so doesn't bother me when she gets horny. She feels she's controlling herself and sparing me pain. She's trading the physical pain for the psychic pain of withdrawal. My pain meds currently are Oxycontin 10 mg 2 x a day and roxicodone 5mg 3 times a day. Ugh, this disease IC. I feel I am IC, not myself like I used to be. Damn it all to hell!

[Teri]

geez Murph....brought me to tears :( For some really odd reason hearing a man talk about it hit me HARD. Probably because most of the guys who visit us don't feel free enough to put it into words and share it with us gals.

I've having one of those days where I'm having a real hard time finding something to be grateful for and you just gave me something....I am grateful for YOU (((((MURPH))))) Thank you soooooooooo much for your story.

tons of hugs :)

p.s. do you think your sister could possibly be related to my sister :rolleyes:

[Throffer]

Oh my goodness. I am still kinda new to IC and have been pretty much wrapped up in my own pain. (pretty selfish) But it sounds like being a man with IC is a heck of alot more painful.

I am so sorry you have to deal with this. And what is worse is that you have had it for so long. How long ago were you actually diagnoised with IC? Have you and your doctor discussed the different treatment options now that you know what you are really dealing with?

Hope you find some kind of relief soon.

[kels34]

Thank you, Murph, for sharing your story with us. I understand your struggle - man alive it's hard not to be understood, isn't it? I have come to think that anyone who voices an opinion about chronic pain w/o living w/chronic pain is just wasting air. I had absolutely no idea what chronic pain could do to me, physically, emotionally and mentally. The body is not designed to be in pain chronicly, especially viseral pain. It's like a constant "red alert" signal going off in the body - it's exhausting! I have been blessed with some wonderful friends, who not only take my pain seriously, but who also offer tons of support, compassion and and endless, patient strength that I often rest in. I am hoping that you will find a guy friend, if you don't have one already, who will be understanding and compassionate, and who will help you find "you" under the burden of IC. It's great that you are so open about what is going on with you. I want to encourage you to keep sharing this stuff w/your wife. My husband got a UTI shortly after I got sick w/IC, and while he got better w/antibiotics (thank God!), his experience helped him to understand a bit of what I am going through. Sometimes, in their worry, they try to give us what they think we need, and I know my husband appreciates my telling him what I need specificly. I know it's not easy, but the relationships are worth it, and it's good to have my home as a safe haven from a world that just doesn't understand. I wonder why family is so tough - a lot of people have parents, siblings, aunts, uncles, etc, who choose not to be compassionate and understnading about the horror of IC - what's up with that?
Take care, Murph, and I hope that we get to hear from you again.
Blessings,
Kelly

[darlene]

Murph, I sure have learned a lot from you. I always thought that male uros didn't believe our pain because they didn't take women's complaints as seriously as men's. I , like many others on this board have been told that it is all in our heads. It was interesting that a female uro finally listened and correctly diagnosed your IC. Your sister's reaction really disturbs me. I am sure glad that she isn't my doctor!. Her advice comes from textbooks, not out of concern for your quality of life. The cause of IC is unknown, so how can she think that diet can always control a severe case like you have? I am also sorry that your wife chooses to sleep in another room because of your situation. I know I would be sooo hurt if my husband did that. I always thought that women would understand about the pain and suffering of their spouses better than the other way around. I guess I was wrong about that too. Remember that we are all here for you, and when we say we feel your pain, we really, really mean it!.

[Teri]

Hey Gals! My hubby has a female uro and not only is she physically beautiful, she is beautiful on the inside too :D He absoluately loves her....she started out being mine but didn't prescribe pain meds so I had to go elsewhere. He has found her to be 100% more helpful than his 2 previous uros.

And, as for sleeping in seperate beds....we do the same thing. My husband works very very long hours and with me getting up and down a million times a night I did it so that at least one person in the house could get a good nights sleep.

Again Murph :D thankxx~t.

[ICNDonna]

Thank you for sharing your story.

I understand what you are experiencing in dealing with your sister. Family can be very difficult at times. The way I finally handled it is I no longer share information with extended family about medications and treatments. Fortunately my husband, children and step-children all understand and don't criticize.

Sending healing thoughts,
Donna

[Sherry from GA]

MURPHY,

First, all of us women stricken with this illness truly appreciate a male's perspective. We know what this crap does to us a women (painful sex, frequency, PAIN). Looks like men are affected in much the same way. I hope you will not take this the wrong way, but I've always said that once the pharmaecutical industry realizes men have this crap -- SOMETHING WILL GET DONE! In no way do I mean this rude but women that can't have sex or are in pain -- NO BIG DEAL. The reality is, however, men that are striken with sexual dysfunction and pain -- WELL the drug industry gets in high gear!!! Please, don't think that I'm minimizing your pain and frustration. Quite frankly, I can't wait for the day when those dumb doctors figure out that nonbacterial prostatitis is really IC. Guaranteed, if a lot of men are affected something will be done. It is a damn shame in this country that we are all suffering. I've always believed that having IC as a man has got to be even more difficult than having it as a woman. Either way, I understand your pain, frustration, and exhaustion. Hang in their Mr. because I feel sure that the doctors are close to fully understanding the dynamic components of this illness.

Sherry

[oneillii]

Hi Murph,

Thanks so much for sharing your story...sorry to hear about your dx but it sure was nice of you to weigh in with a guy's perspective. It can be tough to talk about...

I also agree with Sherry. Perhaps instead of struggling to get more public mention of IC (i.e. getting Oprah to do a segment on it)we should be helping mobilize the guys so that these cases of "nonbacterial prostatitis" get the correct dx. Sherry I think you are correct in stating (to paraphrase) that guys unable to have sex=massive response in the medical community=lots of dollars in research/therapy. Sadly, when women are in that position it seems to be a case of "it's all in her head..."

I;m not sure I believe that so few men get IC...I'm wondering if instead they are 1)not getting a proper dx and/or 2)not talking about it when they do...

[Murph]

Ladies: Thanks for the replies and support. I'd have to agree with those of ya that said that IC would get more attention if more men would step forward and/or be diagnosed. Unfortunately, urology and the pharmaceutical industry are still a man's world, but that will change soon with so many women coming out of pharmacy schools with PharmD degrees and in medicine. Women need to be encouraged to become urologists. Women make better doctors in my experience. It's amazing what a difference a day makes. Today I am alot better than yesterday when I penned that story. Feels like I can hang on to the job, get promoted, make love to my wife more, etc. But, as we all know, tomorrow may be different and drive that optimism out the window again. Too much of a roller coaster this disease. Neglected to mention yesterday that I am also taking Elmiron, Ativan, Pamine, and prelief. Don't know if the Elmiron is really working that well or not, but I am afraid to stop it for fear the IC will get worse.

[Larry]

Murph:

You really did a number on this post. As always, excellent writing. As you know, you can be sure I understand. Oh the suffering. It is so awful. Ladies, he couldn't have said it in a more direct manner. I for one feel the exact same things Murph does. Great job Murph.

[jaime15]

Wow Murph!!
I don't think I can add anything else. I hope your days get better soon!!
Tons of support,
Jaime

[Molly]

Everyone did such a great job posting messages on this subject. As was well written by everyone, woman, including myself, experience the same kind of pain. Anyone with severe IC can certainly relate to this. As far as Murph's sister is concerned, there is probably one or more of her in every family. She may have many qualities but she has blinders on. As the Ol' Indian once said; "Don't judge me till you've walked in my moccasins."

I always had this thought that men and woman should get married that have IC!There would definately be understanding and support!

I don't know where you all live but I am in the planning stages of a large support group meeting with a Doctor speaking on IC, and much more. I will be including spouse and family because there will be a speaker on coping with IC in relationships. I will officially post this soon!
Sending healing wishes to you all!!!
Molly

[TammyM]

My husband and I also sleep in separate rooms as not to disturb each other. He snores, I don't sleep well and get up many times. I'm glad to know that we're not the only ones. It has always bothered me.

[TammyM]

Murph, I also have a federal government job. I work for the Air Force (DoD). I'm hoping that my IC lets me hang in there for 10 more years until retirement.

[Sarojini]

:grouphug:

Again, another thanks for sharing -- it is good to have another man with us (well, not good that another man has IC, but that another man has joined the boards!!)

I know people that have a similar attitude towards opiates too; it really stinks that you have run into one as well. These days I just try to shrug it off and do what Donna does -- I've stopped sharing information about my health with certain people and just discuss other topics. Ugh...

[SandyRN]

Tammy, this post is originally from July of 2001...you may not get a response from Murph as it has been quite a while since he wrote this...but, perhaps this will reopen the discussion for the other men out there and I'm sure they'll be very thankful to you for restarting the thread.

Sandy

[ihurttoo]

I realize that this is an old post, but I just wanted to add that my husband and I also sleep in separate bedrooms. We are not old. We are 34. We will be married 7 years on Monday. We have done this for the past 5 years. I dont share that with many people, because most would assume we must have marital problems. (We do not.) We sleep in separate bedrooms because I snore because of all the meds, plus my noctural restroom visits wake him up. Also, I am in pain most of the time, and I toss, turn, and moan from it even in my sleep, (and that's when I actually CAN sleep). He also snores, so it I am even able to sleep, his snoring would disturb me. So we are both able to rest much better this way. We still crawl in bed to snuggle and cuddle and to have that closeness. But when one of us gets sleepy, we convene to our own bedrooms. I am not recommeding this for everyone, but it does work for us. I just wanted to let everyone know that this is much more common than most people realize, and that it doesn't always indicate marital problems like some people would be inclined to think. I just wanted to tell you all that in case there is anyone else out there who does this but feels guilty about it or thinks they are weird for doing it. You are definately not weird and you are definately not the only ones. (Just my 2 cents!) Hugs to all, Amy

[Baba Yaga]

Tammy, this thread is nearly five years old. I pray that Murph is doing alright. I wanted to respond to him because I have some similar things in common -- the obnoxious MD sister and the job issues. Then I saw that this was from 2001.

Did you find it while doing a search for something?


The one really hopeful thing for newbies: most likely everyone here improved so much that they slowly stopped visiting. :pray:

[Baba Yaga]

Amy, that sounds ideal for a lot of couples, actually. Especially, probably for the guys who aren't too cuddly. And this arrangement wuld make both parties appreciate their moments together snuggling all the more.

Most men snore, and women snore more as they get older, especially if they are on heavy meds that do things like sedate, or deepen sleep, as an ssri should. Plus I think it is healthy for married people to make sure they are getting enough space.

Of course, sleeping together all night is good too if it works and you prefer it.