how do you explain your condition to people you know?
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otherwiseread
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how do you explain your condition to people you know?
i mean close friends, coworkers, friends of friends, dates, your boss, etc.. This has always been the biggest problem for me. Sometimes I dont feel well at all and just want to stay home on the couch, but have to spend 2 hours on the subway just to meet somebody for drinks, just because I dont want to explain my problems to them. Or when you constantly give somebody the "i'm not feeling well" excuse over 6 months, they will probably get offended.
OK, too lazy to change my signature, but my sympoms have improved significantly, some went away competely. Old sig below.
Age: 27 | Onset Age: 23 | Symptoms: differ from year to year, anal/buttocks pain(especially when moving around/walking), burning when pee every once in a while, muscle tightness after peeing, sometimes but rarely burning after,, but no urgency , i pee about 4-5 times a day. Stomach bloating, hard to pass gas, occasional sharp pain in right side lower abs.
Helped By: alcohol(maybe i am wrong about this one,, helps some symtoms, possibly makes other symptoms worse), water, Beer always cures urethra pains/burning.
| Worsened By: showers, defecation, massage?, stress, winter, early spring, Snapple diet iced tea?.
Makes no difference: sitting(try putting something under back legs of your chair to tilt it slightly), masturbation(2-3 times a day usually),(update, now down to 1-2 times a day), used to ride bike without a seat on for 4 hours some days 3-4 days a week- no problem, spicy foods - no problem, 3-4 cups of black tea a day- no problem
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scoobysnacks
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Lets see....
My soccer buddies sometimes I give them other excuses, but other times I just tell them, remember that muscle tension thing I have in my stomach/pelvic floor, well its acting up, I can't play tonight/today.
My wife was more of a slow progression. I told her some things about 2 mos into the relationship. Enough to let her know I was in pain, but enough not to scare her about it. I didn't complain or anything like that. More and more that I saw she was there for the long haul I explained more and more what I had been through.
My parents and I are close so I told them all my symptoms from day one. Why not?
As for making excuses, my friends all know I'm a straight shooter, so I would simply say I dont want to go out tonight. They didn't take offense, thats just me. Some of them know the extent of it all, some dont.
I usually tend to stress the muscular nature of it, so it doesnt sound awful, etc. I dont need anyones sympathy.
But, unlike many of you, I never have had the frequency urge issues more of irritation in prostate/urethra, tension, pain, and a muscle contraction upon trying to piss. So I didn't have to explain anything about going to the bathroom every 20 mins or something like that.
Regards,
Ss
My soccer buddies sometimes I give them other excuses, but other times I just tell them, remember that muscle tension thing I have in my stomach/pelvic floor, well its acting up, I can't play tonight/today.
My wife was more of a slow progression. I told her some things about 2 mos into the relationship. Enough to let her know I was in pain, but enough not to scare her about it. I didn't complain or anything like that. More and more that I saw she was there for the long haul I explained more and more what I had been through.
My parents and I are close so I told them all my symptoms from day one. Why not?
As for making excuses, my friends all know I'm a straight shooter, so I would simply say I dont want to go out tonight. They didn't take offense, thats just me. Some of them know the extent of it all, some dont.
I usually tend to stress the muscular nature of it, so it doesnt sound awful, etc. I dont need anyones sympathy.
But, unlike many of you, I never have had the frequency urge issues more of irritation in prostate/urethra, tension, pain, and a muscle contraction upon trying to piss. So I didn't have to explain anything about going to the bathroom every 20 mins or something like that.
Regards,
Ss
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex
As far as co-workers, In my early stages when I was dealing with having to go to my Urologist and had never heard of prostatitis /inflammation issues, I told them what I had. I explained to most of them by using the example of people who get stressed get tension headaches or back aches, I get this condition in my pelvis which does this to me (LUTS). Without going into major detail of what I do to manage it. It in it's own right has been helpful to me to explain this so it's done. When I don't feel comfortable, I just push through and know I will get better and try to pace my self and do moment to moment relaxation with out really anyone knowing. Of course I don't have this awful pain that most of us have here, but the irritative and frequent sensation of having to pee can be it's own hell, believe me. Work is the hardest part of the whole thing because that's when it comes out the most.
For Family, right off the bat, I'm close with my entire family so they all know, no one is with out health problems, everyone has something that isn't perfect. So communication with your family members about what you are going through is key for management of this condition. Otherwise (no pun intended) what's the point of having a family if you can't explain to them how you are doing and so forth.
As for friends, all my friends know because again, depending on how close you are, your friends will have health issues too. It may open up some dialect to learn more about each other and to form a support system which again is key to recovery.
So the bottom line for me is I have found it liberating to talk about this condition with family, friends and certain co-workers and my boss. The key here is not to talk about it all the time, just put the feeler out there and be done with it. Remember also to push through and live. Over time you get better if you do the whole protocol, not pieces parts of it and a support system is a great thing to have. Just don't hammer them with it day in and day out, explain and walk away and practice the protocol daily.
For Family, right off the bat, I'm close with my entire family so they all know, no one is with out health problems, everyone has something that isn't perfect. So communication with your family members about what you are going through is key for management of this condition. Otherwise (no pun intended) what's the point of having a family if you can't explain to them how you are doing and so forth.
As for friends, all my friends know because again, depending on how close you are, your friends will have health issues too. It may open up some dialect to learn more about each other and to form a support system which again is key to recovery.
So the bottom line for me is I have found it liberating to talk about this condition with family, friends and certain co-workers and my boss. The key here is not to talk about it all the time, just put the feeler out there and be done with it. Remember also to push through and live. Over time you get better if you do the whole protocol, not pieces parts of it and a support system is a great thing to have. Just don't hammer them with it day in and day out, explain and walk away and practice the protocol daily.
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
Started: Spring 2003; high urinary frequency and pain associated with bladder filling; urinary hesitancy; pubic/prostate/perineal discomfort; Helped by: trigger point therapy, Afrin nasal spray, Cymbalta, hydrocodone (small doses), distraction. Makes worse: sex.
Not medical advice. Consult your doctor.
Not medical advice. Consult your doctor.
That was an interesting thread. Prior to finding this site I remember telling my Wife that I never wished I had been so open about this condition. Now that I look back for me, it was the right thing to do and in some sort of way, I think people that know me, don't ever ask me any more how I'm doing because I don't talk about it. I guess I leave all the talking about it in this forum.
I am not a medical doctor. Please fill out your signature (click here) ☼ ☼ My Starter List for new members
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
Nobody has ever heard of this crap in my circle.
When I try telling em about it, needless to say, it never goes over well.
When I try telling em about it, needless to say, it never goes over well.
Age:37 | Onset Age: 35 | Symptoms: pain in testicles that comes and goes that also switches sides-trying to find a pattern as to "why" this happens/Rectal Burn at the 6 O'clock position at my anus which tends to flare around the periphery of my anus typically after defication but no perineum pain-no "golf ball" pain. Pain in testicles worsens as I sit but not always...Pain is not always present but depresses me. Pain used to be at a very high level but has subsided in time to a low level but has not gone away. Pain used to flare after sex but not as much as before although it still like playing russian roulette./
/Lack of SleepHelped By: I haven't found anything that has helped to my knowledge. Tried many many sessions of PT, accupuncture and chiropractic care but still have not found steady relief that takes me back to a pre CPPS state.
/Lack of SleepHelped By: I haven't found anything that has helped to my knowledge. Tried many many sessions of PT, accupuncture and chiropractic care but still have not found steady relief that takes me back to a pre CPPS state.
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otherwiseread
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interesting to read your replies. thanks. I mostly have trouble discussing it with people who are not my close friends or relatives, but who I interact with on a regular basis. "Muscle problem" sounds like a good thing to say , next time somebody asks I'll probably say: doctors dont really see anything wrong with me, most likely a very annoying abs/back muscle problem, and I'm looking for a good physical therapists and trying alternative medicine/ yoga kind of stuff to help me with it , and that something like that may take years to clear up..
I really dont want people, especially women friends, saying to each other behind my back that I have some bad desease or something.. most of my friends are young and immature, I'm sure it would be a lot easier explaining this to somebody who is a little bit older.
I really dont want people, especially women friends, saying to each other behind my back that I have some bad desease or something.. most of my friends are young and immature, I'm sure it would be a lot easier explaining this to somebody who is a little bit older.
OK, too lazy to change my signature, but my sympoms have improved significantly, some went away competely. Old sig below.
Age: 27 | Onset Age: 23 | Symptoms: differ from year to year, anal/buttocks pain(especially when moving around/walking), burning when pee every once in a while, muscle tightness after peeing, sometimes but rarely burning after,, but no urgency , i pee about 4-5 times a day. Stomach bloating, hard to pass gas, occasional sharp pain in right side lower abs.
Helped By: alcohol(maybe i am wrong about this one,, helps some symtoms, possibly makes other symptoms worse), water, Beer always cures urethra pains/burning.
| Worsened By: showers, defecation, massage?, stress, winter, early spring, Snapple diet iced tea?.
Makes no difference: sitting(try putting something under back legs of your chair to tilt it slightly), masturbation(2-3 times a day usually),(update, now down to 1-2 times a day), used to ride bike without a seat on for 4 hours some days 3-4 days a week- no problem, spicy foods - no problem, 3-4 cups of black tea a day- no problem
It's definitely a lot easier as you get older. All my friends have issues that are just about as bad, and modesty gets lost somewhere around 55.
One thing that has worked with me with some people is calling it coccydynia. During the period that I really couldn't sit down that was something that isn't actually inaccurate. For some reason my primary care doctor - who still doesn't understand - settled on that as something he could diagnose me with and justify the pain meds.
One thing that has worked with me with some people is calling it coccydynia. During the period that I really couldn't sit down that was something that isn't actually inaccurate. For some reason my primary care doctor - who still doesn't understand - settled on that as something he could diagnose me with and justify the pain meds.
I am not a doctor too!
Age 64, sudden onset 5/06 during bout of flu, colitis, lung and liver problems. Pain in penis, then moved to rectum. No urinary symptoms. Use Lyrica, Elavil, paxil, Xanax, morphine, vicodin, relaxation, pads for sitting, 100+ PT sessions. Sensitive to gluten, milk protein, soy. I have CFS, anxiety, GERD, Barrett's, colitis, kidney stones, one of which referred pain to penis.
Age 64, sudden onset 5/06 during bout of flu, colitis, lung and liver problems. Pain in penis, then moved to rectum. No urinary symptoms. Use Lyrica, Elavil, paxil, Xanax, morphine, vicodin, relaxation, pads for sitting, 100+ PT sessions. Sensitive to gluten, milk protein, soy. I have CFS, anxiety, GERD, Barrett's, colitis, kidney stones, one of which referred pain to penis.
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Sleeper Service
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bellowbellow
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I've also told my family and friends and my friends and colleagues at work... the news is usually well recieved, whether out of curiosity or empathy... My wife is another story; I've learned that she doesn't need to know my every pain or discomfort but does need to know what I'm doing to help myself.... I was discussing my condition with a cousin once and discovered he was going through the same thing; needless to say, we've become closer since then and share ideas, successful treatments, frustrations etc...
44 years old. Chronic Prostatitis (onset age 38) for 6 years. In the midst of worst flare-up of my life. Tried all conventional methods without success. | Symptoms: Severe burning on tip of penis, burning between rectum and scrotum. Meds: Hytrin, Atavan, percocet (all at night). Natural Meds: Quercitin, Vitamin C and E and B Complex, Niacinimide, Salmon Oil, Garlic supplement, cranberry extract, concentrated liquid chlorophyll. | Helped By: warm baths, stretching, running. | Worsened By: not sure but suspect unhealthy eating, stress, negative thoughts.
anal fissures
Otherwise, have you ever been diagnosed for anal fissures?
Age:37 | Onset Age: 35 | Symptoms: pain in testicles that comes and goes that also switches sides-trying to find a pattern as to "why" this happens/Rectal Burn at the 6 O'clock position at my anus which tends to flare around the periphery of my anus typically after defication but no perineum pain-no "golf ball" pain. Pain in testicles worsens as I sit but not always...Pain is not always present but depresses me. Pain used to be at a very high level but has subsided in time to a low level but has not gone away. Pain used to flare after sex but not as much as before although it still like playing russian roulette./
/Lack of SleepHelped By: I haven't found anything that has helped to my knowledge. Tried many many sessions of PT, accupuncture and chiropractic care but still have not found steady relief that takes me back to a pre CPPS state.
/Lack of SleepHelped By: I haven't found anything that has helped to my knowledge. Tried many many sessions of PT, accupuncture and chiropractic care but still have not found steady relief that takes me back to a pre CPPS state.
I have never held back with most people and I get the question "how are you doing?" - 4 words that I always have a tough time answering, but it keeps me honest about where I am. Others I just tell them it is a chronic pain thing.
Ken
Ken
I HAVE NO MEDICAL TRAINING JUST CPPS
Age:48 | Onset Age: 39 | Symptoms:mod to extreme Pain in testicle (both), right epididymis, lower back lower right and centre abdomen. Urination frequency and urgence, decreased or no urine stream, ED, night time incontinence after riding in a vehicles or too much movement. | Helped By: eating ice frequency by Elavil, urine stream by Hytrin or Flomax. Pain control Methadone and Hydromorphone but more so by Triamcinolone epidurals. | Worsened By: Too much movement, SSRI's, Hot baths or showers. eating warm or too much food,DMSO treatments. Frequency by caffeine, stress or SSRI's.
Age:48 | Onset Age: 39 | Symptoms:mod to extreme Pain in testicle (both), right epididymis, lower back lower right and centre abdomen. Urination frequency and urgence, decreased or no urine stream, ED, night time incontinence after riding in a vehicles or too much movement. | Helped By: eating ice frequency by Elavil, urine stream by Hytrin or Flomax. Pain control Methadone and Hydromorphone but more so by Triamcinolone epidurals. | Worsened By: Too much movement, SSRI's, Hot baths or showers. eating warm or too much food,DMSO treatments. Frequency by caffeine, stress or SSRI's.
OTHERWISEREAD, this is a good topic you brought up on this forum this is a problem I think all of us have had to deal with many many times with this condition. I am 26 yrs old now and this problem started not long after my 22nd birthday so the one point you made about a lot of your friends are young and immature has been true for me not so much the immature thing but the young issue I know times when I have brought up what I feel like and you tell them they get this confused look on there face like I never heard that before and get the feeling they do not understand and they usually say ok?. I know with my family cousins and uncles and aunts and my brother they listen to me and I think they understand but some get it and understand it better then others I believe but for some of them I get the feeling that the problem is not that big and I make more out of it then I should but again this is just a feeling I get in my mind. As far as a relationship goes I have not really been in a steady relationship with a girl since this problem started and I am not married so how you deal with this condition and the ladies I am not the best to give advice. I still live at home and have been there since this problem started so my parents know all about my condition especially my mom who has dealt with me and this problem from a day to day bases for the last 4 yrs and she is the easiest person in my life to talk to about my problems and pain. But like some people have said they try to limit there talking about there problems with there partners and feel some times they talk to them about there pains to much and on a day to day bases I know I feel this way to when it comes to talking about it with my mom.
For me the biggest issue is how to deal with friends when you hurt and can not do much and the ways to get out of being with them. Some times I find myself not talking to them for varies days or weeks when I have my most pain and try to not be around them. Also I some times do not answer the phone when they call or I get some one else to answer the phone and have them tell them I am not home all of these things I have brought up get me upset because I know it is not right to do it to them and it has put a dent on some of the relationships with some of them but at times it is just hard to tell them what is wrong or I just get tired of always telling them I am in pain and can not do some of the things they ask of me.
All in all it is much harder to talk to friends then it is my family from my stand point on this issue.
For me the biggest issue is how to deal with friends when you hurt and can not do much and the ways to get out of being with them. Some times I find myself not talking to them for varies days or weeks when I have my most pain and try to not be around them. Also I some times do not answer the phone when they call or I get some one else to answer the phone and have them tell them I am not home all of these things I have brought up get me upset because I know it is not right to do it to them and it has put a dent on some of the relationships with some of them but at times it is just hard to tell them what is wrong or I just get tired of always telling them I am in pain and can not do some of the things they ask of me.
All in all it is much harder to talk to friends then it is my family from my stand point on this issue.
Age: | Onset Age: | Symptoms: | Helped By: | Worsened By:
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otherwiseread
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ZR your situation is surprisingly very similar to mine. I too had to move back in with my parents, rents in NY are going crazy, 1500 a month for a small ghetto apartment an hour subway ride away from the center is too much for me too pay right now, and I'd rather keep my part-time flexible hours job..
Definitely easier to explain to older people I can just say muscle problem somewhere in lower back and they understand.. And also , I'm tired of hearing "lazy" more and more when people talk about me.
anyway, I think I am going to use words like physical therapy, muscle trigger points, massage, muscle pains/cramps, need to stay home tonight and relax on my couch next time somebody asks me.
Definitely easier to explain to older people I can just say muscle problem somewhere in lower back and they understand.. And also , I'm tired of hearing "lazy" more and more when people talk about me.
anyway, I think I am going to use words like physical therapy, muscle trigger points, massage, muscle pains/cramps, need to stay home tonight and relax on my couch next time somebody asks me.
OK, too lazy to change my signature, but my sympoms have improved significantly, some went away competely. Old sig below.
Age: 27 | Onset Age: 23 | Symptoms: differ from year to year, anal/buttocks pain(especially when moving around/walking), burning when pee every once in a while, muscle tightness after peeing, sometimes but rarely burning after,, but no urgency , i pee about 4-5 times a day. Stomach bloating, hard to pass gas, occasional sharp pain in right side lower abs.
Helped By: alcohol(maybe i am wrong about this one,, helps some symtoms, possibly makes other symptoms worse), water, Beer always cures urethra pains/burning.
| Worsened By: showers, defecation, massage?, stress, winter, early spring, Snapple diet iced tea?.
Makes no difference: sitting(try putting something under back legs of your chair to tilt it slightly), masturbation(2-3 times a day usually),(update, now down to 1-2 times a day), used to ride bike without a seat on for 4 hours some days 3-4 days a week- no problem, spicy foods - no problem, 3-4 cups of black tea a day- no problem
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scoobysnacks
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Fellas, I can understand your issues. I got this when I was 26, but trust me you have to keep your friends close. Make a point to get out sometimes, it helps you to forget about this crap. Tie a good buzz on some nights, just let loose. But, I do understand where you are coming from.otherwiseread wrote:ZR your situation is surprisingly very similar to mine. I too had to move back in with my parents, rents in NY are going crazy, 1500 a month for a small ghetto appartment an hour subway ride away from the center is too much for me too pay right now, and I'd rather keep my part-time flexible hours job..
Definately easier to explain to older people I can just say muscle problem somewhere in lower back and they understand.. And also , I'm tired of hearing "lazy" more and more when people talk about me.
anyway, I think I am going to use words like physical therapy, muscle trigger points, massage, muscle pains/cramps, need to stay home tonight and relax on my couch next time somebody asks me.
It will get better, if you employ the strategies on this site.
Regards,
Ss
Age:29 | Onset Age: 25.5 | Symptoms: Initially burning in prostate/perineum, burning in urethra, uncontrollable muscle contraction before urinating, dual ache in groin, left testicle pain, feeling of golf ball in rectum, soarness in rectum, and muscle spasms, now mainly very mild urinary tract inflammation, burning mildly after ejaculation, some days after physical activity involuntary mild muscle contraction before urinating | Helped By: .5 mg of Ativan, Aleve (naproxen), quercetin, alcohol in large quantities (vodka and soda), stretching, walking, internal massage the perineum area and levators. | Worsened By: sitting, weightraining, jogging, coffee, caffeine in general, alcohol bothered me at first, overdoing sex