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Postby DozyDawn » Wed Apr 01, 2015 2:36 pm

Hi all, I am a newbie to this site. I am 49 years young and I have been suffering with this condition since I was 12 years old! I have felt such a Freak and felt so alone in this world! I thought it was only me that was smelly! I bath daily but I sometimes get out of the bath and I can still smell this awful fecal smell. It rarely leaves me. I have cut myself off almost from civilisation, staying in my house and only coming out for work which is part time, 16 hours a week and for those 16 hours I go through despair, shame, embarrassment all the emotions. I work in a supermarket and I Hate it as I just want to curl up and become invisible. I dread when someone comes too close. I mask the smell with Tea Tree oil in my pants and I wear perfume, deodorant, body spray the lot but the smell still comes through. There is just no masking it!

I have felt so isolated, so alone. Sometimes I feel so low I don't want to go on but my children keep me here. My youngest is 11 and he still needs me! I am sick of the comments like, "Someones farted", or "what's that awful smell"? I have even had someone in the store going to the toilets with their toddler as they are convinced it must be their child that has filled their nappy!

I find that if I drink plenty of fluid all day long then it does neutralise the smell a bit but I work 4 hours solid on the checkout and I cannot get off to go to the toilet very easily so I cannot drink between 8am and 1.30pm and so my urine is very concentrated by then and I stink!

I plucked up the courage to go to the Dr's about 25 years ago and when I explained to him about my smelly problem he burst out laughing and said "In all my years of working as a Dr I have never had anyone come to me and say I am smelly"! I burst out crying then, I was so mortified. I left with no answers and have lived with this problem until last year. I plucked up the courage to go and see a lady Dr at my new surgery and she was very sympathetic. I had just heard of Bacterial Vaginosis and wondered if I had that. The Dr asked if I gave off a fishy smell and so I said no, I smell more like a toilet! She tested me for BV but The smear came back clear. I didn't return as I thought they couldn't help yet again! It's only 2 days ago that I heard of the Fish Odour Syndrome and so I googled it. Fish Odour Syndrome is inappropriately named as it is not just a Fish Odour that can be smelt. I smell like rotten eggs sometimes, or Poo.

I am off to the Dr's at the end of April to see my nice lady Dr again about it. Hopefully I will get the right Diagnosis. Unfortunately she works part time and gets booked up very quickly as she is so popular but I would rather wait and see her. I don't want another unsympathetic Dr laughing at me ever again! I have been out and bought all the herbs and supplements that people are saying works for them and keeping my fingers crossed. I am praying that I will see an end to the misery that is my life and an end to what has plagued me all my adult life. I have no friends, I didn't want to be near people, nor do I socialise, also because of the smell. But I so envy people who do have a social life, that are happy and smell free. They don't realise how lucky they are!

Please let there be a light at the end of my long miserable life?
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Joined: Wed Apr 01, 2015 12:24 pm

Re: Newbie!

Postby Lisa » Thu Apr 02, 2015 8:42 pm

Hey DD,

If I may correct you on one thing, you say you have no friends? You have, we're all here!!!!!!

Your story sounds exactly the same as all of ours, so, you are not alone.

Print off as much info as you can on FOS, or TMAU, read up as much as you can, then, you go marching in to see that nice lady Dr. with your head held high, and you say that you would like to be tested, politely, but FIRMLY!
As stated on here before, DO NOT start this diet until you are confirmed as having this disease, and even then you must be monitored frequently.

Don't spray yourself with perfumes, etc, they won't help, ATM I am using Johnson's Baby Wash, (the pink one), and Nivea, or Dove deodorant.

If you read earlier posts on here, mine included, (around 2010), you will find that most of us hid ourselves away, but, slowly , we are all getting our lives back on track one way or another, what works for one may not work for another, and you have to try & work out what works for you,
I can also smell myself, I think those of us that can are lucky, we can judge how bad we smell, can you imagine if you couldn't, and the only way you know if there is an odour is if some R's wipe tells you?

To answer your Q, Is there a light at the end of your miserable tunnel? It's YES, and you are already on your way thru.

Let us know how you get on please.

Take care, everyone is here for you!!!!

Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: Newbie!

Postby Lisa » Thu Apr 02, 2015 8:45 pm

Btw, where are you?

Lots of us spread around the country, maybe you could arrange to meet up with someone near you?

Posts: 412
Joined: Tue Jul 06, 2010 10:35 am

Re: Newbie!

Postby DozyDawn » Thu Apr 02, 2015 9:48 pm

Hi Lisa,

Thanks for your reply. I live in Lincoln in Lincolnshire. I would love to be in touch with someone in my area who is of the same disposition as me, who knows what it is like to go through life in this way.

I was never confident and outgoing as a child. Very shy but happy amongst my small circle of friends. Then this hit at 12 years old and I started keeping my distance from people. We moved to another county when I was 13 and I just couldn't make friends then. No one wants to sit next to the smelly kid in school after all! People would even talk about me when I was in hearing distance saying how I stink!

I so want this nightmare to end. Some days I find there is no odour and I get a glimpse of what 'Normal' is. I just want to be normal! I am sick of worrying day to day how bad my odour will be! I am so glad I have found this forum so that I can talk freely about this condition.
Posts: 2
Joined: Wed Apr 01, 2015 12:24 pm

Re: Newbie!

Postby sweatybetty » Tue Apr 07, 2015 12:32 pm

Welcome 'DozyDawn'

Hope this site helps you find some answers and gives you some support - we all understand.

I am 47 year old female London based. It took me a long time to get the diagnosis - probably half of GPs have never heard of it and the GP I have now had heard of it but never seen anyone else with the condition!

On a practical note I think you should be able to have a break during your work shift rather than having to 'hold it' for 4 hours!! - surely you employer would understand some people might need to visit the loo during a long shift. There are many reasons/conditions that mean you need to go to the loo every couple of hours!

Hope you have had a good Easter break and good luck with your GP - if you print off the information re the condition and getting tested that should help but the urine has to be collected in a special way - so hopefully they will refer you to a metabolic specialist. It takes a long time for the test to be processed so unfortunately it may be two months or more before you can get results!
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Joined: Mon Sep 01, 2014 1:46 pm

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