transient trimethylaminuria related menstruation

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transient trimethylaminuria related menstruation

Postby minnie » Fri Jul 20, 2012 4:21 pm

Hi all,

I have had since the age of about 11/12 a rotten egg/ faeces smell that used to come and go. Its only within the past year that I decided to research this and found that it could be tmau. I am obsessively clean and have been ever since this started. Like most people, I never smell it but only know about it from other people smelling it :oops:

I never used to know when the symptoms were going to occur so I tried the diet and that didn't help.It doesn't seem to happen after I have eaten something with a high choline content either. I read on another tmau site that this could be linked to my menstrual cycle, which I have noticed over the past few months I have smelt on the onset of my period and upto two days during. I read that taking the contraceptive pill makes its worse, although I don't think that's the case in my situation. I am on the combined pill and on the 21 days of taking it I don't smell but soon as I have the 7 day break the smell happens and is really potent. I have done a tester where instead of having a 7 day break I took the next packet and I didn't smell for the following three weeks after that (well, I might of done but no-one made comment). However, I started to have my period before I had finished the 2nd packet and then the smell happened so I think that I can only take two packets at a time before it occurs.

Last month at work some people noticed the smell so I took two capsules of charcoal and after that no-one commented through the night about the smell. I guess that could of been because they knew it was me so didn't want to mention it? But in the morning when the next set of staff came on no one said anything about a smell.

I have only just confided in my partner and mother about this within the last 6 months after hiding this from them for 13 year. My partner has smelt it but has never thought its been me as it only occurs every now and again. I have been to my GP and have now sent off the urine sample so am awaiting some results.

What I want to know is does anyone have the same symptoms/ smells as me and have you taken anything that has worked? most of the treatments seem to be for people that were born with it or have the symptoms from eating certain foods. I am going to carry on with taking the charcoal and I have sent off for some nullo. I am using dettol soap because its suppose to have a ph of 5.7 so going to keep on top of that. If anyone has any suggestions please let me know as I know what everyone is going through and am willing to try anything that may help.

Hope to hear from you's soon :)
minnie
 
Posts: 15
Joined: Fri Jul 20, 2012 3:46 pm

Re: transient trimethylaminuria related menstruation

Postby bubbles » Sat Jul 21, 2012 9:57 pm

Hey Minnie,
I have tested positive for tmau after a very long struggle, my family, boyfriend never smell it but i know at work it raises its ugly head I put this down to me being more stressed about it here and I mean high anxiety as I so fear being judged or have people think I am unclean when nothing could be further from the truth. Anyway alot of women with tmau will see a considerable increase in odour around their time of the month, this is when I am at my most vulnerable, I seem to have the transient type, not a constant odour, I believe that female hormones at this time seem to exaggerate the odour and make things worse so I would say to you be extremely careful in this time frame regarding your diet. If you go into the diet section on the board index I have a thread under protein and calcium and on the second page is basically a list of what I eat, supplements and washing stuff should be on those pages somewhere as well and if not I will message you with them if you want, I have seen a real improvement overall but I have to be rigid with the diet and protocol especially in that time frame before menstruation. As i am off for the Summer I havent been as good as I should be probably but am getting back to being strict this week. Hope this helps a bit!!! :D
bubbles
 
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Joined: Fri Nov 04, 2011 2:47 pm

Re: transient trimethylaminuria related menstruation

Postby minnie » Sun Jul 22, 2012 4:27 pm

Hi Bubbles,

Thank you for your reply :) Its really nice been able to chat with someone openly about this and someone that is going through the same thing. I have had a look at your previous posts and am going to start trying some of the things you mention to see if they help. The diet is so restrictive though :( Around the time of my periods I have hardly been eating anything, only fruit mainly because I have been so scared that the odour will start. I hardly eat meat any more, eggs and most of the veg that's high in choline. I was worried too about protein and developing an iron deficiency so I've started taking multi vitamins to try and make up for what I'm missing.

I have been at work the past two days and have been taking charcoal and just eating fruit and so far so good :D I've not had one single comment so I'm starting to think that I can maybe manage this thing. I have also kept up with using the low ph soap and am going buy some of the sebamed products to see if they help further.

One thing that confuses me is that when I was pregnant I still had the odour. As I mentioned earlier, when I stop my periods by taking the next set of contraceptive pills I don't have the odour so I presumed that whilst been pregnant and not having that time of the month anymore that the odour would stop for a while. I am worried about this because I want to have more children but I have read that its dangerous to be on the choline free diet as choline is important for babies brain development and taking supplements isn't advised. :? Its surprising how much this condition takes over your life :cry: Its really putting me off trying for more as it would mean coming off my pill which I think helps and not taking any supplements that could prevent the odour.

Thank you for your advice though and I am going to try and stay positive about this and just keep trying new things that might help :D
minnie
 
Posts: 15
Joined: Fri Jul 20, 2012 3:46 pm

Re: transient trimethylaminuria related menstruation

Postby bubbles » Sun Jul 22, 2012 8:08 pm

Hey Minnie,
I am no expert when it comes to tmau, I found out late Sept and it took me a good 6 months to get things under some type of control, and I mean I have to be rigid with the diet and the supplements, it is very restrictive and I worry dreadfully about my health because in a perfect world I want to be getting my nutrients & minerals from a well balanced diet and not from supplements but I suppose you have to play the hand you are dealt and regardless of whether I want it or not, I have tmau and have to find some way to live with it and for my own own emotional and mental health I have to stick to the diet because I cant cope with the really bad days very well. I am on holidays at the minute so have been a bit relaxed with the diet but getting back to being restrictive this week. I definitely think my body has a major problem with high protein sources, it cant seem to break these down very well at all.

I think every case is very individual and what works for one person may not work for others, I tried the Sebamed products and didnt like it at all, I would recommend the Nivea Sensitive Balance shower gel (clear liquid), it is very cheap £1.90 in Boots, etc, I have tried every product under the sun for showering and this is the one I have most confidence in. I use Fairy for washing my clothes, dont use fabric softener this can make the odour worse, I avoid highly scented products like perfume , etc because when I didnt know what this was I used to spray perfume over myself and peoples reactions were worse when I did this, I loved perfume too unfortunately it did not make me smell of roses!!!! (Anything but!!)

Some people have said they thought the pill made the odour worse,I dont know I no longer take it and havent done so for many many years, as I am cutting back on unnatural things going into my body as I dont think my body can deal with any extra burdens if that makes sense. Yes apparently you should not follow the low choline diet when pregnant, I have a boyfriend but no kids but I would like them, for a long time I thought it would be unfair if I passed this on but I know I would be a good mum and love my child and feel that more and more I shouldnt let tmau stand in my way of this, perhaps you could relax the diet if you were thinking of trying again, perhaps you could get in touch with Dr Lachmann and ask his advice by email, he is very good and emphatic. To tell you the truth certain foods stuffs scare me now because I associate them with odour which is sad, I dont mind so much if I am off (thought I generally try to be good) but when I am working I am like a food robot because like I say bad days just destroy my hope and make me totally depressed. Minnie good luck in all you do, again I am happy to private message you with my whole routine or what works for me if you would like that. This is a dreadful disorder and most of the medical community are not very well versed about it and it can be difficult to get people to believe you, some of my friends wont believe I have this saying you dont smell, my boyfriend and family never smell it but the reactions at work in the past definitely pointed to an odour and me as the source of this, I dont get this so much now at work, the last time was when I tried to introduce seeds and nuts to my diet to increase my protein intake and the odour occurred again and so i stick to my limited diet now. Keep your chin up Minnie!!!
bubbles
 
Posts: 44
Joined: Fri Nov 04, 2011 2:47 pm

Re: transient trimethylaminuria related menstruation

Postby minnie » Sat Jul 28, 2012 3:59 pm

Thank you for your help bubbles :) My doctor has told me that once my results come back that she will try get me a referral to see a metabolic disorder specialist so hopefully I can get some advice on the diet. I will also email Dr Lachmann to see if he can offer any advice about coming off the pill and pregnancy.

I know how you feel when you have a bad day :( I have tried alsorts to avoid going into work when I know its likely to occur. Even when I don't smell its constantly at the back of my mind and I'm thinking do I smell when I'm around others and are they not saying anything because they know its me? I've been on the verge of underweight from cutting out certain foods and the stress of it all. Not to mention my bad moods swings because I can't stop the odour or know when its going to happen.

Yes you can pm me your routine if you like thank you :D anything is worth a try!

I think we just need to manage this thing for now and hopefully one day there's going to be a cure for it. It seems to be something that's becoming more recognised and it doesn't seem to be as rare to me any more.

Good luck in all you do to prevent the symptoms. You seem to have what works best for you figured out :)
minnie
 
Posts: 15
Joined: Fri Jul 20, 2012 3:46 pm

Re: transient trimethylaminuria related menstruation

Postby teestew » Sat Jul 28, 2012 8:40 pm

Hello Minnie,
I think i might be going through the same thing you are going through and this has been happening since i was 13 yrs old. Whenever i am menstruating the odour is absolutely revolting. I have been to several doctors ,done several tests and there seems to be nothing wrong with me.Some doctors think i am going "crazy".I always have an odour but it gets worse during menstruation.I also need some HELP too.
teestew
 
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Joined: Sat Jul 28, 2012 8:18 pm

Re: transient trimethylaminuria related menstruation

Postby minnie » Sun Jul 29, 2012 8:03 am

Hiya teestew,

Have you had the tmau urine test done? I have heard that tmau doesn't always show up on tests as you need to test at a time when you have the odour. I found this really difficult to do as I wasn't sure when the odour was going to occur so I just tested around the time of my periods as I think that's when it most likely happens.

At first, I went to a doctor and told them about my symptoms and they just said they couldn't smell anything so they didn't think there was a problem. The 2nd doctor I went to I researched tmau and took some information to them as I needed to convince them this wasn't in my head. Its been a really slow process but I'm waiting for my test results to come back so I'm not even sure that I have this yet. After that my doc is going to try refer me to a specialist.

What I have started doing is 3 days before my period I have just been eating fruit and soup and I carry on doing this till I finish my period. I have taken charcoal three times a day and I have washed with anti-bacterial soap a few times a day. I didn't use any deodorant as I need to find one that has a low ph. This seemed to work for me last time I went to work when I was menstruating. I'm not recommending you to try this but it helped me out. I tried cutting out all high choline foods for a few months and I lost alot of weight and was nearly underweight according to my bmi.

Have you been referred to a specialist or an endocrinologist? it might be down to something you are eating if you have the odour all the time or it could be down to the type of tmau you might have. I'm really in the dark about this too and its taking over my life as its the only thing I think about at the moment. have you tried any of the recommended supplements yet? I know you're not suppose to until you have been diagnosed but I'm getting desperate and am willing to try anything at this point.

I found the only way to get help is nag at your doctor and keep bringing them information in on it. I hope some of this has helped as I'm still really unsure about this myself :?
minnie
 
Posts: 15
Joined: Fri Jul 20, 2012 3:46 pm

Re: transient trimethylaminuria related menstruation

Postby teestew » Tue Jul 31, 2012 2:41 pm

Hello Minnie ,

No i haven't done a urine test.Where i am living i dont think there is much known about TMAU. I have been struggling with this problem for 16yrs and just recently (about 2 yrs ago) ,came accross TMAU.I am definitely going to try and take a test .Thanks alot for your assistance .
teestew
 
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Joined: Sat Jul 28, 2012 8:18 pm


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