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[Noestrogen]

Hi all, Im newish to forum, so apologies if this has already been discussed and Ive missed it in the search of old posts but has anyone been diagnosed or thought they have TMAU (trimethylaminuria) or have an unexplained body/breath odour?

INFO LINK https://medlineplus.gov/genetics/condition/trimethylaminuria/  (note odour is all over body and breath, not vagina and can be perceived as eggy urine garbage BO sweaty cheesey, not just 'fish' which is how it usually smells at very low levels that not many people can detect.)


I know individual responses to HRT are unique, but Id love to hear from anyone who feels they noticed a difference, good or bad, from taking or not taking HRT, in relation to their odour/odor?


I am (long) diagnosed with TMAU which isnt improved much by the 'treatment'. Im peri or menopausal (straight from contraceptive implant to HRT so no periods for years and dont know which). I am 52, been taking Evorel 50 sequi for 18 months. It has reduced sweats, vaginal irritation and 'bone' pains. I still have my life-long anxiety and depression, which are much worse since meno. Meno has also added an inability to deal with anything or trust in myself or find comfort in anything. Had to leave job because couldnt follow simple instructions. Often feel suicidal (wont act on it). Have accepted this 'new normal'.


Female hormones and stress are known to affect TMAU odour massively. Because my own hormones are clearly fluctuating greatly, my odour is probably going up or down a lot. By taking HRT, same. I can smell my normal body odour well, but not this TMAU odour, and dont have reliable feedback around me (others smell this specific TMAU odour to variable degrees also).


I had planned to continue HRT for osteoporosis if nothing else but Im getting some feedback my odour might be even worse on it. If I knew definitively odour was worse on HRT I would stop it because the negative interactions with others sends me into downward mental spirals.


GP receptionists are making it long and difficult to get even a phone app to talk about anything meno related, so trying out lots of variations of HRT isnt going to happen easily and I have no fight in me. I somehow (because everyone else was on holiday??) managed to speak to someone knowledgeable who gave Estraderm 50 patch (with provera 5mg progesterone continuously to try and reduce hormone fluctuations). After few months I felt no difference and Estraderm were falling off, so for convenience I went back to Evorel Sequi (Gp they will let me access says I cant have Evorel Conti because Im 'too young'...) .


I know the answer is to fight to speak to 'good' GP and work through every option systematically, but Im clinging on by fingernails and not able to look after myself at the mo.


Im casting this net in the hope a few simillar people might give me an idea if theres something specific helped them during this time, even if its 'come off HRT and wait it out'. I had read years ago that TMAU odour can get a lot better once hormones settle into menopause (so I might be prolonging TMAU odour by taking HRT). Even hearing this would be a help. I might be through peri by now because retrospectively I think I had peri symptoms through most of 40s - I thought sweats heart palpitations etc were purely stress.


Thanks to anyone who made it to the end of this epic 

[Flossieteacake]

I do not have any advice but just wanted you to know I read your post and I really am sorry you are dealing with this. Sending you a virtual hug.

[CLKD]

Fishy odour is common from the vagina if there is infection there. 

MayB get to see a Nurse Practitioner for a vaginal swab. 

I think that I have noticeable body odour when it's hot - DH tells me he can't smell anything  . Who is giving you 'feedback' and certainly, HRT shouldn't cause symptoms. Which regime are you on?  What did you want to ease initially?

Certain food stuffs and cancer medications may cause whiffs or bad taste .........

MayB ask for an appt to an endocrinologist in the first instance? 

[Noestrogen]

OMG you are so kind to reply! Thank you, I am tearing up at your lovely hug, I can feel it, sniff 

[Noestrogen]

Thanks CLKD,

The odour Im talking about is from my diagnosed conditon TMAU.

Im just wondering if anyone who has TMAU (or has a weird undiagnosed breath or body odour - which I know COULD be TMAU) has found peri/meno or HRT has an effect for good or bad on the odour.

There arent many people diagnosed with TMAU because for some reason its really hard to get tested, even fewer who are female and in this age range, so Im casting the net amongst 'normal' peri/meno women, on the off-chance theres something really specific I could be doing to make my life easier.

And just for info, the TMAU odour isnt specifically vaginal at all, it comes out of eevery pore across body and on breath. I agree if you have fishy smell in vagina only thats something very different

[CLKD]

HRT protects heart and bones ;-). 

Tnx for the explanation.      which Specialist diagnosed the condition and how and is there a specific support group?

I know that curry can ooze from pores all over and my Uncle apparently had Very Smelly Feet ........ is it any more noticeable at specific times of day?

[Flossieteacake]

OMG you are so kind to reply! Thank you, I am tearing up at your lovely hug, I can feel it, sniff 

You are so welcome. I used to talk to somebody online with your condition and I understand the sadness it causes. She was in USA so perhaps they are more able to test for it there.

[CLKD]

I've bounced a thread from the Forum .......... she was in the US.

[Noestrogen]

Thanks both.

CLKD there isnt much forum-wize. They are just full of people pretending theyve got it, but really selling magic cure pills on Amaz'n, because there isnt a 'cure' and people are desperate.

Im not really expecting anyone to give me a cure for the odour, nmore trying to get an idea how hormones after peri and +- HRT have played out for people odour-wize.

I'll look for the bounced thread. Thanks, bye!

[Noestrogen]

sorry CKLD do you know which bit of forum the htread is or a keyword in the ttile so I can find it? thanks

[Flossieteacake]

https://www.menopausematters.co.uk/forum/index.php/topic,46434.0.html


I found it. 

[Jenna]

Hi Noestrogen,

 

I know you are mainly asking about HRT, but you might find this info helpful 

https://www.dietitianslife.com/special-diets/diet-to-reduce-a-fishy-odour-tmau/

[Noestrogen]

Thank you Jenna, thats really kind of you.

When I post in main bit of forum Id better make it clearer that Im not looking for advice about TMAU condtition - Ive had it  along time.

ITs just about this new development of peri/meno/HRT. Im asking if anyone has any experience of it affecting a breath/body odour condition they have ie this made it worse/betteer? Love to you all. You are so efficient, Id sleep a lot better if you guys were running the country right now!...

[RubyRuby]

Hello Noestrogen!
I am also a Tmau sufferer and I am currently going through chemical menopause with Zoladex.

The Zoladex takes away all my hormones and makes my body think I have had a surgical menopause. Fun huh?!

The effects of the no hormones on the TMAU condition has been quite dramatic. It's either that or the actual zoladex ingredient is causing my body to be more malodourous.

Anyway, l was having such awful reaction in other ways too, (including serious mood changes)that I've been put on Tibolone (hrt).

The tibolone has alleviated some of the symptoms I was suffering. In terms of the smell, I'm thinking it has also alleviated a little bit of it (I hope!) Before the injection, most of the time I couldn't smell myself, it's usually others who tell me. But atm I can smell myself which is quite disconcerting- sort of ammonia.

Have you ever taken HRT?

You are not alone, there are many of us who have been diagnosed through Sheffield Children's Hospital when Nigel Manning was in charge.
I completely understand your situation and the complete lack of concrete facts about how hormones affect tmau sufferers symptoms.

Let me know how you get on, Ruby

[CLKD]

tnx for the update