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Old 01-03-2011, 10:15 PM   #1 (permalink)
 
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Old 03-24-2011, 05:49 PM   #2 (permalink)
 
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Hi there. I believe that I may possibly have this, although I'm fairly certain that I do have an odor. My life has been completely ruined. What has your experience been like?
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Old 06-11-2011, 03:57 AM   #3 (permalink)
 
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Hi guys. I've had ORS for quite a while now. And I can sympathize with apr13 because I understand how tough it can be. Anyway, if any of you two (or anybody with ORS for that reason), wants to hear my experience with ORS, feel free to message me and I'd be happy to share my experience and what I know. My best to all of you and God bless.
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Old 10-03-2011, 09:29 PM   #4 (permalink)
 
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I've had this for nearly 20yrs now even though I've only known what its called since 2003. It's so destructive to a person. I can't work can't socialize can rarely leave the house anymore. Mine is breath. My ritual is so harsh now that I've literally brushed a lot of my gums away, takes me hrs just to clean my teeth, so my mouth is constantly sore too. It's a horrible illness the its so I empathise with both u guys greatly. I took big overdose last yr have been sectioned etc for my own safety. Sadly here in UK help u get is very limited, mainly meds that really don't work well. I read a paper bout a therapy called emdr, 4 women with ors were as good as cured in as little as 3 sessions. It posits that it is a trauma based thing, that once the trauma or index trauma has been adequately processed a person is freed of a dysfunctionally stored memory and there lives go back to normal. Many people have had a trauma and don't even know it. The traumas these women and I had were public humiliation, embarrassing with a strong shame component at a sensitive developmental age. Trauma in the dictionary means anything with a long term negative effect on a persons health, sense of self etc. So its not trauma as in a train crash but rather 'small t trauma'. I know what my index trauma is. When I was 13/14 a teacher at the ****ty boarding school I was at (which I hated, got bullied a lot etc) walked up. to me as I was wiring to use shower and decided to publicly refer to me as disgusting and smelly and that he'd had a report that I smelt. bad from another teacher. I imagine is been playin soccer and hadn't had time to get a wash before my next class-not unheard of in a teenage boy. Anyway he said that I was disgusting etc making an example of me in front of all the other kids I remember feeling shocked I had no clue this was the case. He then pulled off my gown and proceeded to draw ink pen all over my upper arms and chest, to 'ensure that I washed properly when I went in the shower, he would check and see if I had or not'. I believe that he quite literally publicly and psychologically marked me as a person who stinks. It's like a tattoo. I can see him doing it now nearly twenty yrs on. Quite quickly after that the person I was changed. I've been on downwards spiral ever since. The women in the paper all had similar incidents at similar developmental age and they all had ors. The first women was speculative, results were amazing like cured, they wanted to see if it could be repeated and the other 3 were too, one lady reported believing that she no longer smelled in as little as 30mins. I wonder if either of u guys had a similar experience in yr.life. this paper was published in 2008, using doctors from the Scotland in the UK it was called EMDR and olfactory reference syndrome; a case series, journal of EMDR practise and research, 2008 by McGoldrick, Therese, Begum, Millia, Brown, Kevin W. I found it on findarticles.com it should still be there if u want to read it. Of course you need a good therapist but that applies to all therapies. Some don't recall what there trauma is, so if it doesn't immediately sound like you it may still. apply you just can't see it yet. This therapy holds great promise and if it works it really works and very quickly. All 4 women were symptom free at 10YEAR follow up which says it all. Anyway hope this. helps u guyssomehow. If you'd like to msg is love to exchange msg with someone else who has ors. I wouldn't wish it on my worst enemy. Much love to u.
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Old 10-03-2011, 10:12 PM   #5 (permalink)
 
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I've had this for nearly 20yrs now even though I've only known what its called since 2003. It's so destructive to a person. I can't work can't socialize can rarely leave the house anymore. Mine is breath. My ritual is so harsh now that I've literally brushed a lot of my gums away, takes me hrs just to clean my teeth, so my mouth is constantly sore too. It's a horrible illness the its so I empathise with both u guys greatly. I took big overdose last yr have been sectioned etc for my own safety. Sadly here in UK help u get is very limited, mainly meds that really don't work well. I read a paper bout a therapy called emdr, 4 women with ors were as good as cured in as little as 3 sessions. It posits that it is a trauma based thing, that once the trauma or index trauma has been adequately processed a person is freed of a dysfunctionally stored memory and there lives go back to normal. Many people have had a trauma and don't even know it. The traumas these women and I had were public humiliation, embarrassing with a strong shame component at a sensitive developmental age. Trauma in the dictionary means anything with a long term negative effect on a persons health, sense of self etc. So its not trauma as in a train crash but rather 'small t trauma'. I know what my index trauma is. When I was 13/14 a teacher at the ****ty boarding school I was at (which I hated, got bullied a lot etc) walked up. to me as I was wiring to use shower and decided to publicly refer to me as disgusting and smelly and that he'd had a report that I smelt. bad from another teacher. I imagine is been playin soccer and hadn't had time to get a wash before my next class-not unheard of in a teenage boy. Anyway he said that I was disgusting etc making an example of me in front of all the other kids I remember feeling shocked I had no clue this was the case. He then pulled off my gown and proceeded to draw ink pen all over my upper arms and chest, to 'ensure that I washed properly when I went in the shower, he would check and see if I had or not'. I believe that he quite literally publicly and psychologically marked me as a person who stinks. It's like a tattoo. I can see him doing it now nearly twenty yrs on. Quite quickly after that the person I was changed. I've been on downwards spiral ever since. The women in the paper all had similar incidents at similar developmental age and they all had ors. The first women was speculative, results were amazing like cured, they wanted to see if it could be repeated and the other 3 were too, one lady reported believing that she no longer smelled in as little as 30mins. I wonder if either of u guys had a similar experience in yr.life. this paper was published in 2008, using doctors from the Scotland in the UK it was called EMDR and olfactory reference syndrome; a case series, journal of EMDR practise and research, 2008 by McGoldrick, Therese, Begum, Millia, Brown, Kevin W. I found it on findarticles.com it should still be there if u want to read it. Of course you need a good therapist but that applies to all therapies. Some don't recall what there trauma is, so if it doesn't immediately sound like you it may still. apply you just can't see it yet. This therapy holds great promise and if it works it really works and very quickly. All 4 women were symptom free at 10YEAR follow up which says it all. Anyway hope this. helps u guyssomehow. If you'd like to msg is love to exchange msg with someone else who has ors. I wouldn't wish it on my worst enemy. Much love to u.
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Old 12-05-2011, 11:01 AM   #6 (permalink)
 
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Hi I'm one of the authors of the paper and I have also published another paper 'olfactory reference syndrome- a systematic review of the world literature' last year. I'm glad our paper is helping people understand their illness and the line of treatment. Good luck with finding the right solution. Happy to answer queries regarding this illness in a general manner but would not give any specific advice.
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Old 04-01-2012, 01:07 PM   #7 (permalink)
 
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Hi,

I'm hoping that you might be able to help me with some advice. I believe my husband is suffering from ORS, - it's really distressing him and I would dearly love to help him. He has strong feelings that he has a physical/biological problem, and has felt this for around 10 years - smelling of waste or bo etc. He has spoken to me and his parents about it, and some friends, - all of us have said that we have never smelt anything bad when he is around, - but he thinks that we may have got used to his smell, and that it's worst at work so we haven't come across it. He feels that there are one or two women at work who he is convinced have been talking about him and think he smells awful, so naturally, he is feeling pretty terrible and is struggling and pushing himself to go to work every day.

He has been to see our doctors surgery, - the first doctor was really dismissive, and essentially said that she had lots of experience being a doctor, had never came across anything like this before, and that he smelt fine to her. Thankfully, he plucked up courage to go back, and the 2nd doctor has given him some prescription medicine to reduce sweating (which worries me as I think he probably sweats a normal amount but is anxious about it) but also referred him to a CBT counsellor. The downside was that there was a month or so waiting list, and the counsellor saw him once, and then has cancelled his last appointment, which was due to be a focus group with other people and then interview them to see if they noticed anything about him. But this needs to be rescheduled, and has not happened yet.

Would anyone be able to update on the EMDR treatment, and how we would go about progressing this? At this point, I think it would be worth us paying for treatment (as the NHS seems to take such a long time, and in the interim, he is seriously distressed) but it would be good to understand if there is accreditation for this treatment, and how many treatments are generally required (is it likely to be a short course?).

We have a baby on the way, so cost is a factor, but if it were to properly help him and reduce his distress, I would gladly pay for the right help.

Also, is there anything I can do to help with this? I love him dearly, but am not sure how best to act. When he talks about the issue, I try to be patient, but at the same time, it is very hard to hear someone you love say that they stink. I also find it hard to know how to act exactly, - I think the issue is likely a psychological one (I have suffered from OCD in the past, and still here and there, and see many similarities) but I don't want to just accept the issue is a physical one when he is talking about it, but I do want to accept and understand his feelings about it. I'm finding this balance very difficult, - so any advice would be really appreciated!

Hoping you might be able to help, - anything you think might be of use would be really appreciated, as it's very hard to understand where to turn!

Many thanks for your time... :-)
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Old 04-01-2012, 01:16 PM   #8 (permalink)
 
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Just a quick note, (in case it is relevant with regard to possible treatment options) we are currently living in London, UK. Thanks :-)
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Old 11-12-2012, 03:10 PM   #9 (permalink)
 
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I have just learned about olfactory reference disorder. The symptoms fit perfectly with my wife's issues. She thinks that almost everyone involved with her life have been talking about her odor behind her back. We can no longer spend time with any of our former friends, my family members, nor a lot of our kids' friends' families. If anyone mentions anything about a smell, she thinks they are talking about her. Does anyone have any advice on how to handle this?
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Old 01-30-2014, 10:28 AM   #10 (permalink)
 
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Dear members:...I am Research associate at the Hospital University of Pennsylvania, I am currently working on olfactory reference research project. There is no doubt that thee are psychological elements in patients who had strong consistent foul smells as described by Pryes Philip and classified as olfactory reference syndrome in 1968, however the development of the chemosensory testing in the smell and taste center at the University Hospital of Pennsylvania revealed that many of these cases could be explained by a real chemosensory problem. We actually have smell and taste clinic three time a month, so if you are interested in having more explanation a bout your condition or wishing to help friend or a family member , you can reach me at my email address : fthussam@yahoo.com , properly we may arrange a visit to the smell and taste center to be tested. Thanks .
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Old 02-24-2014, 08:05 AM   #11 (permalink)
 
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Unhappy help me!

hello,
i am only 17 and im pretty sure i have ORS, i have to get up everyday and shower for about an hour and also as i have IBS if i ever go to the toilet I have to shower again and then also again on the evening because i constantly have a fear that i have an anal odor! i constantly try smell myself to check and i dont smell anything coming from my anal area but im still worried that i have it. i have asked my boyfriend many times if i smell and he's completely sure i never have but i still think that i do. i have even been with my boyfriend many times where i have thought i can smell a smell and that its coming from me and everytime he's said he cant smell the smell and he cant smell anything? im too scared to tell anyone else but its becoming a massive issue in my life. i havent seen many of my friends for months because i dont want them to smell me, most days at college i find extremly hard and constantly have to ask my boyfriend and on many occasions i have ran out of the room or gone away from everyone crying over an odor that he says isnt there. i have self harmed 1 time before where the constanty anxiety and paranoia that i smell really bad has been so distressing. im too scared to tell my parents and by what i read on the internet the doctors arent much help and i dont know what to do anymore.
can somebody please tell me good treatment or something??
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Old 02-27-2014, 10:41 AM   #12 (permalink)
 
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I am running a research project a bout the Olfactory reference Syndrome, and doing some Smell test on patients with olfactory Hallucination.Also we have physician specialized in Smell and Taste. I can refers you to them.
you can reach me at my email fthussam@yahoo.com
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Old 05-23-2014, 11:16 PM   #13 (permalink)
 
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Hello all. I am new to the website and I just wanted to share some of the quick notes I've jotted down about what my daily life and experience has been like. Please excuse the format and any grammatical errors-- it was typed on my iPhone periodically and sometimes in a rush.

Also just for some background, I am a 21-year-old female college student who lives in Los Angeles. I am currently in therapy and will be starting a new medication soon.

Notes:

-if I am somewhere where I am sweating a lot, I have to constantly check to see if I smell or reapply
ex. 1: coachella, 100 degree whether reapplied deodorant 4 times after wiping underarms with baby wipes
ex. 2: party/work, will go to bathroom 3-6 times to check underwear (smells underarms, pants, underwear, put clean finger on clitoris to check)
-afraid to have sex because I think I'm going so smell/especially oral sex
-can't use a dirty bathroom without closing eyes like if bathroom is dirty then I can't see it or else I can't pee or poop
-if I clean something it'll take hours, I've canceled plans because of it
-I won't have a good time when I go out if I can't constantly check on myself, I get instant anxiety relief when I cancel plans
-used to brush teeth/floss constantly but stopped because dentist told me I would strip them of fluorine (I think) now I do this weird throat thing because I think the smell is coming from there
-from this ^ I have tried to find out if I have a sinus infection and regularly do sinus drains and used a tool purchased from CVS to clear sinuses
-I spend hundreds of dollars on deodorants/perfumes/tooth products/going to the dentist/etc
-if someone rubs or touches their nose while I'm talking I think my breath smells. same thing if I'm walking by and they do that
-it takes me 2 and a half hours to get ready for work or to go out. I have to clean my vagina/butthole two times each and scrub my underarms twice as well.
-I have asked almost all of my family and close friends if I smell at some point
-manager was talking to me and another co-worker, while I was talking he turned away and never turned back around
-if anyone says anything indirectly about smell or odor I automatically assume they're talking about me


That's about all I have so far but there are many other things
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