Hello Everyone, this is my story. It will tell you about me, and why I joined the Trimethylaminuria forum. I know it’s really long, but maybe it might help someone.
My Story
I am a 27 year old woman that has a fish odour/smell of urine in the vulvar area (sweat glands) and a fish odour in my urine. It caused me a lot of problems all throughout high school. I was picked on by other students, a few made comments about how I smelt to my face.
I remember one time when I on a school excursion with my music class, and we were going to Melbourne to record a school CD. I was really nervous about the whole thing before we even got there. We had finished, and we were all getting on the school bus. I sat down, then one of the other students walked towards me and said “someone smells like they’ve wet themselves” whilst looking at me, and then sat at the back of the bus. The teacher didn’t say a word, like she was giving the student permission to tell me what everyone else was thinking. I was so embarrassed and humiliated, I just wanted to go home and cry.
There was another time when I was at school, and one of the guys said to me that I smelt like fish, and he constantly kept pointing it out whenever we would see each other. Another guy would wave his hand in front of his nose, call me names and say things like “Gee, something smells around here!” whilst looking at me.
There were many other instances where I could smell my fish odour when I was around other people. I would be out in public where I wasn’t able to have a shower. I would get really anxious, and all I wanted to do was go home again.
After high school, I had two retail jobs. One was at a discount department store, and I worked there for two years. I still had the fish odour, people noticed it, but they weren’t nasty to me. The second retail job was working in the Poultry Department at a local supermarket. It was always freezing cold, so therefore I didn’t sweat at all, and because of that, no-one could smell my fish odour. I worked there for two years whilst doing a short course to become a Personal Care Attendant. When I finished it, I worked for a few nursing agencies.
My fish odour continued to cause me problems when I started working and doing permanent shifts at the local nursing home. Other nurses didn’t want to work with, or be in the same room with me, especially in summer when it was really hot, and I was sweating a lot. I was also sweating a lot because the heating was always on really high, and because I was really anxious, even before I got there.
When we had our nursing handover and we had to work out who we would be working with, people would try to avoid having to work with me. When we were attending to a patient, the staff member I was working with would leave the room/bathroom that I was in really quickly, and get someone else to come in to help me finish attending to the patient. I could tell from their body language, that it was because I smelt bad.
The odour had always been worse when I was menstruating. I would change my tampons/pads every hour and still smell bad. I began to avoid going to work, or calling in sick whenever I had my period, because I would end up in the toilet all the time. I know they must have thought that I didn’t shower. I didn’t want to go to work meetings or education sessions because I was conscious of the odour. I was required to go as part of my job as a Personal Care Attendant, but I would try and get out of them, or not turn up.
I would avoid being close to people, just in case I offended them with my smell. It was really affecting my job performance, and impacting on the care I gave my patients. Social anxiety was a big problem for me, I would sweat even more because I was so anxious, even before I got there, and my social skills were becoming worse because I barely spent any time with people other than my family.
I didn’t want to deal with comments from other staff members (such as “someone smells like fish”). They would mutter comments under their breath, or I would hear comments about my odour down the corridor when people didn’t think that I could hear them. I would just pretend that I didn’t hear them. My self-esteem was so low that I couldn’t stand up for myself. Even if I did, what would I tell them?
I didn’t have a diagnosis for my body odour, so I couldn’t tell them it was a medical condition. I had been tested for everything else that it could have been. I believe at that time that talking about it would have made my situation worse than it was.
I got to the point where I was in a lot of financial trouble. I eventually had to declare bankruptcy because I had used credit cards to pay for bills, rent, food, bought things that I wanted online, and I couldn’t make the repayments. After I declared bankruptcy, I had to cut back on food so that I could pay my rent and bills and avoid having the utilities cut off, as well as feed my cats. I ended up only working on the weekends, and even then my anxiety was so bad that I would call in sick and not go in to work. I would intend to go to work, because I knew that I really needed the money. I would get in the shower, get extremely anxious, and not want to come out. When I did eventually come out, I would ring work and say that I was sick. I would have rather put up with them being angry with me for calling in sick again, feel the anxiety my financial situation was causing me, and go without food, than deal with the staff, and the comments about my fish odour.
I mostly stayed at home, where I didn’t have to worry about my odour and what other people thought of me. I spent most of my time on the internet, since it was my only contact with other people, and only went out to see my family or get groceries if I really had to. I started looking for jobs where I could work from home, or not have to be around other people. I was so lonely, angry and depressed. I really began to hate myself, and everyone else. This had now gone on for over 10 years.
One day I thought to myself “I’ve had enough of this odour problem, it’s ruining my life, and if I have to go through another summer putting up with people’s comments about my odour, I am going to kill myself.” This was a turning point for me. I made the decision to figure out for myself what was causing the fish odour, despite what the Doctors told me. They didn’t understand what I was going through, and thought that it was all in my head or that I was being paranoid because they couldn’t smell the fish odour when I saw them.
I had been to Doctors so many times over the 10 years with no solution as to what was causing the odour. I would be tested for a bacterial infection; each time the test would come back negative, or be given antibiotics or anti-fungal tablets. I had never been sexually active, up until recently, so it wasn’t Bacterial Vaginosis or Trichomoniasis (which could also cause a fish odour) or any other STD. I was referred to, and went to appointments with the Psychologist and Psychiatrist for Social Anxiety/Phobia and Depression because it was affecting my self-esteem, and impacting on my ability to work. I was given anti-depressants, and tried about three or four of them. I also tried anti-anxiety medication, so that I could at least get through work, but the side effects from the drugs were too severe, so I didn’t continue taking them.
I had been taking the contraceptive pill. I thought that maybe that could be contributing to the fish odour. At that point I was only taking them to regulate my periods. I didn’t want to continue taking them anymore, so I stopped taking it.
After a few months, the odour was still there. I had decided to go on a vegan diet, because I didn’t want to eat animal products anymore, so I eliminated all animal products from my diet.
About two years later, I went to a first aid class. I had to go because it was required, and if I didn’t do it I would lose my job. I was really anxious about how bad I would smell. I had not eaten much during that week because of stomach problems that I was having at the time.
The class finished, it had been a really hot day, and I was covered in sweat. I came home, and I realised that even though I was covered in sweat, the odour had gone. I tried to think about what I had changed in my diet. The only thing that I had done differently was that I had not eaten any soy products for week (I had eaten a lot of soy products, being on a vegan diet.)
After doing some research online, I found some information on Trimethylaminuria (TMAU), read about the low choline diet and taking supplements with chlorophyll in them, that women are more affected, and that researchers suspect that this metabolic disorder has to do with female sex hormones. The symptoms I had fitted the description of TMAU almost perfectly. Before I went on a vegan diet, I had consumed a lot of meat, eggs, fish, soy products, and was also taking oral contraceptives. No wonder I smelt so bad!
I spoke to my mother and aunt who have also had the same problem as I have with the fish odour. I told them about Trimethylaminuria, and that this metabolic disorder was what we could all possibly have.
I also wanted to cut out coca-cola from my diet. It wasn’t good for me, and I was drinking way too much of it. I was drinking a 1.25 litre bottle a day sometimes. I had stopped drinking it for a few months. I went to work one day, and I was really tired when I got there in the morning from lack of sleep. I decided to have one can, figured it wouldn’t hurt me just to have one. I drank the can, and then went back to work. By the end of my shift, I was sweating a lot, and my fish odour was really bad again. That’s what made me finally give it up. Caffeine definitely increased my sweating and exacerbated the odour.
I spoke to my mother and aunt who have also had the same problem as I have with the fish odour. I told them about Trimethylaminuria, and that this metabolic disorder was what we could all possibly have.
I saw the Tyra Banks Show. At the time I was watching it every day. On this particular day, it was about unusual medical disorders, and a woman with Trimethylaminuria was featured on the show. She was talking about her fish odour, and even getting her on the show was a source of severe anxiety for her, because the fish odour for her was so bad that it could clear an airplane. They were talking about the fish odour, which started between her legs as well, and as time went on, the fish odour emanated from her whole body. She spoke about the low choline diet, and avoiding certain foods such as animal products, soy, nuts and seeds.
I went to my current doctor, and told her about the show, described my symptoms, and told her that my mother and aunt had the same symptoms as I did. She actually listened to what I had to say, and rang the Pathologist about testing for TMAU, and I was able to get the Phenotype (urine) test done.
I had to consume fish and eggs that night, as part of the test. The next morning, when I collected the second urine sample, the fish odour in my urine was really strong. I gave the samples to Pathology to get tested. I was really worried about the odour, and about how I would get rid of it quickly because I had to go to work the next day. I remembered reading earlier about taking tablets that had chlorophyll in them. I happened to have some alfalfa tablets in my cupboard, so I thought I would try them and see what happened. Guess what? By the end of the day, the odour was completely gone again.
The urine test unfortunately came back negative. I was disappointed, and the doctor said that TMAU had now been ruled out. I still wasn’t really convinced, but I let it go for a while. I found out recently that the urine test for Trimethylaminuria can be unreliable, and that some of the people that had the Phenotype test done in the United States have had negative results. However, when they had the blood test done, it showed that they had a genetic mutation related to TMAU (FMO3 Gene). If I have a genetic mutation related to TMAU, which I am fairly certain that I have, it only causes mild symptoms, possibly making it harder to detect in my urine.
My urine sample may have also come back negative because I had been on a vegan diet at that point, and had been taking the alfalfa supplements prior to having the urine test done, and only stopped taking them the day before the test. I may not have closed the lid fast enough or tight enough after I got the sample. All I do know for sure is that my fish odour definitely returned the next morning after consuming the fish and eggs the night before. Maybe I should stop taking the supplements for at least a month, and try the urine test again at some point, but that would make it difficult to work and be around other people for that length of time.
I discovered later that soy beans have a natural oestrogen in them (female hormones) which would probably have had the same effect as taking the oral contraceptives. A few days after my boyfriend moved in with me, I needed to take the morning after pill. The next day, the fish odour returned.
I went back on my vegan diet again on 01/08/2008. I started consuming nuts and seeds because I knew that they were really healthy, and is a source of iron and other nutrients. I have noticed that my fish odour has returned, and I can smell it in my urine. I just made a point of increasing the amount of alfalfa tablets that I take when I eat the nuts/seeds.
Now I know that I have to stick to a low choline diet, no animal products, or if I do eat eggs or cheese, I have to have them with alfalfa tablets (I’d gone back to being a vegetarian for a while, now vegan again.) I also have to avoid any hormonal contraceptives, and limit the amount of soy products and nuts/seeds that I have. I’m very lucky that I was able to find out what causes my fish odour. My mother and aunt have the same fish odour problem as well, and in the same area as I do.
My mother also had problems with bad breath, despite regularly going to the dentist. I think the odour may have smelt like a garbage/rotting smell. The dentist could not find the cause of the bad breath, and she was constantly brushing her teeth and rinsing her mouth with mouthwash, as much as 3 times a day, but she told me that the bad breath still didn’t go away, and that she was conscious of it.
My aunt has also had a smell of faeces. She had told me stories about her past. People would say to her that it smelt like she had not wiped herself after going to the toilet, or would be in the same room as her and say that it smells like a dog had soiled itself in here, and she knew it was her. They have had similar experiences as I have, and when I spoke to my aunt about them, I’m sure it must have brought back a lot of painful memories for her, and perhaps for my mother too.
They are currently doing the same thing as I am and taking alfalfa or spirulina tablets with their meals, which luckily has been successful for them too. We have also found that if we stop taking the supplements at all, or eat too much of the wrong foods, our odour problems return.
I am now in the process of trying to get the Genotype (blood) test done for TMAU, which is not available here in Australia. I will travel to the Monell Chemical Senses Center (research laboratory) in the United States at the end of next year.
Until I get the blood test done and it shows that I have no genetic mutation related to TMAU, I continue to believe that there is a strong possibility that have TMAU. I just have to prove it.
There are four main reasons why I would like to get the blood test done:
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I would like Trimethylaminuria put on my medical record. If for whatever reason I end up in hospital, or in a position where I cannot tell the doctors or nurses that I need to not be given certain foods or that I need to take supplements with chlorophyll in them (Alfalfa or spirulina supplements) to eliminate/prevent the fish odour, I may be given anti-biotics or anti-fungal creams/meds, which I don’t want. I know that the doctors would do the necessary testing, but I also know it would be assumed that I have a UTI, a vaginal infection, an STD such as Bacterial Vaginosis or Trichomoniasis which can cause a fish odour, a yeast infection, or be related to poor personal hygiene due to lack of knowledge of TMAU. I could avoid the unnecessary embarrassment, humiliation, and comments about my fish odour. I could explain to people that I have a metabolic/genetic disorder that can cause it, and perhaps they may be a little more understanding. I have always had a sensitivity to drugs. I have found in the past that when I have been given medications (not just anti-depressants, but also quite a few other different types of drugs that I’ve been given, including injections), I seem to either have a reaction to it, suffer additional side effects, or suffer the side effects for much longer than I should. This may be related to the possible mutation in my FMO3 gene, which produces a small amount of non functional FMO3 enzyme in the liver. The FMO3 enzyme may play a role in processing some types of drugs.
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If I am able to get tested and diagnosed, then I can get the other family members tested and diagnosed too, and have TMAU put on their medical records.
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There may be a possibility that I may have children in the future, and if I do have a genetic mutation related to TMAU, I’ll know for sure that there is a possibility that I could pass it on to my children.
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If I could prove that I have a genetic mutation related to TMAU, then I would be in a better position to provide support, educate and raise awareness of TMAU, body odour and Halitosis. People suffer from Social Anxiety and Depression because of their odour problems. It impacts on their self-esteem, and their ability to work because people assume that the odour is caused by poor personal hygiene and not showering, like other students and co-workers did with me. I have joined the two main Body
Odour/Trimethylaminuria forums that provide support. I know the emotional pain and suffering they go through, as I have been through it myself.
Here is a link that you may find interesting. It’s from a nursing forum. This may give you a really good insight as to what my mother, aunt and I had to deal with when you have a fish odour between your legs, the frustration of not being able to get rid of it, no matter what we did, and the comments/assumptions that co-workers/nurses, (in this post) and other students (when we were at school) made.
Now I am working on overcoming my Social Anxiety/Phobia, and improving my social skills, since my fish odour is not noticeable anymore. I am going to make up for the 10 years of emotional pain and suffering, and not being able to live up to my potential.
I am gone back to working in the nursing home as a Personal Care Attendant, in the same nursing home I was working in before. Next year, I am going to university to do the Bachelor of Music, because I am going to be a classical singer and perform, since that had always been my dream. I am also going to be a research geneticist/medical scientist, so I will do the Bachelor of Biomedicine at the same time. I’m more determined than ever to find a cure, or at least find some answers to what causes Body Odour and Halitosis. My first goal is to be part of any current research conducted on Body Odour and Halitosis. My second goal is to create my own charity/fund, raise some money, and open my own research center, specifically dedicated to Body Odour and Halitosis research.
I never ever thought that any of this would be possible for me at all, and I want to make a valuable contribution to this world. I don’t want anyone else to have to go through the emotional pain and suffering that my mother, aunt and I went through from having a fish/body odour. I want to educate other people about TMAU and other body odour problems so that sufferers are not held back like I was from pursuing their dreams.
I now have a wonderful, caring, supportive boyfriend. We met on a Social Anxiety/Phobia forum, and we had been chatting online for over a year. We both felt so lonely and isolated, neither of us had been in a relationship for at least 7 years. I never thought that anyone would possibly love me because of my odour, and he thought that no-one could possibly love him because he suffered from anxiety and depression, and his self-esteem was really low.
We chatted about possibly meeting each other. He knew that I had a fish odour, and where I had it. I made a point of telling him because I wanted him to know the truth, and not hide anything about myself, and I didn’t want him to find out after we met. I had enough rejection from people, and I don’t think I could have coped with any more. He still agreed to meet me anyway. He lived in Sydney, so he flew down to Melbourne to see me. After our first meeting, because of circumstances at the time, he moved in with me. We’ve been together for nearly 9 months now.
He has taught me that there are good men out there. I have learnt so much about myself, and him, and there have been so many positive changes for both of us. I am so grateful to have him in my life, and every day that I get to spend with him is a blessing.
I am also singing in a choir, which I absolutely love. I have the privilege of being part of a group of wonderful, remarkable women who have become my best friends. I have learnt so much from them, about music and singing, and about life. I aspire to be like they are when I get to their age.
Writing this story, and talking to my mother and aunt has brought us so much closer. I love them so much, and I want to help all of us by getting a diagnosis. None of what I have done so far would have been possible without them, nor would I be where I am today without them. They are always there for me, and been there to support me and help me whenever I needed it, and I am very grateful to both of them. I am very fortunate to have had such a wonderful mother, who had done a great job of raising me, and taking care of me, even now. I am also very fortunate to have such a wonderful aunt in my life as well.
I know that other people with body odour or Halitosis haven’t been as fortunate as I have to have been able to at least manage their odour problem. By writing and publishing my story, I hope that it will help someone. Even if it helps just one person, I would be happy. I want to raise awareness and educate people about body odour and Halitosis in the future. People need to realise that body odour can be caused from foods in a person’s diet, can be a metabolic disorder that may not have a cure or a quick fix to get rid of it, and most of the time it is not caused from lack of showering, or from poor personal or oral hygiene.
I am here if anyone needs support, or someone to talk to about their body odour or Halitosis, what they are going through, or anything else really:) Please message me privately on my profile to connect with me personally.
I have also started the Support Trimethylaminuria Research cause on Facebook to begin with. I want to try and raise $1,000 to go to the Monell Chemical Senses Centre by 31st December. I am going to either change my current cause, or I may start a second cause to raise money for body odour and Halitosis research.
I could really use the support, or any donations would be appreciated. The more donations the researchers get, the sooner we can find a cure or solutions for sufferers of Body Odour and Halitosis. The donations do not go to me; they go directly to the Monell Chemical Senses Center.
There is hope yet,
Kristen.
In answer to your question: I am on a vegan diet, so I don’t eat any animal products, and no refined or processed foods. I eat fresh, organic fruit and vegetables.