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Had ETS 4 Months Ago, My Story

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Can't say I'm looking forward to the supposed boiling hot summer we've got coming up in the UK.  Wish I could enjoy it like I used to.  :(

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Because for at least the next six months I know I am going to have to go through the following (thanks to the NHS) Befree:

- Severe compensatory sweating from my shoulder blades down, my stomach, chest, sides and legs
- Little-to-no sweating through 'normal' areas; hands, feet, underarms, face, forehead, scalp and neck
- All of this leads to unreal discomfort, overheating, flushed feeling, exhaustion, embarrassment, low-mood, and just generally feeling (in many ways) very isolated

This is the honest picture for a post-ETS and post-LS patient.  As I've said before, maybe life's not as bad with just having ETS, but damage from both operations is absolutely soul-destroying, and I seriously wish they would just ban the operations for both conditions.

I'm sorry, this is not a knock, it's just how I feel.

Edited by IJR

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Apologies Befree, guess I was just feeling a bit low and fed-up.  :(

On the plus side I managed to burn 1000 calories at the gym earlier, so I try to not let the side-effects impact on my energy levels as much as possible.  :D

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No need to apologise, glad you're feeling a little better today. It was very hot yesterday and also today seems just as hot but a bit more breezy. 

Are you really suffering badly in this heat? Even when it's breezy? It's good you are very honest and have shared your story so far and your energy levels seem very high lol you've done brilliant at the gym burning all those calories! 

It shows just how different people are after ets, I read a lot about people having low energy levels and not being able to get motivated and have trouble losing weight etc it's brilliant that you haven't been affected like that. I've lost 1stone 3lb since January too, trying to shed some weight for my summer holiday! ??

 

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No need to apologise, glad you're feeling a little better today. It was very hot yesterday and also today seems just as hot but a bit more breezy. 

Are you really suffering badly in this heat? Even when it's breezy? It's good you are very honest and have shared your story so far and your energy levels seem very high lol you've done brilliant at the gym burning all those calories! 

It shows just how different people are after ets, I read a lot about people having low energy levels and not being able to get motivated and have trouble losing weight etc it's brilliant that you haven't been affected like that. I've lost 1stone 3lb since January too, trying to shed some weight for my summer holiday! ??

 

Is low energy and weight gain another possible side effect of ETS at L2 Befree?

This is one I hadn't come across before. Interesting. Why can't it be high energy and weight loss?! ;)

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When I was researching the surgery before I had it done it was always the same things coming up, people complaining of no energy and weight gain due to no energy to do anything. I haven't seen any posts on here saying this and I certainly don't feel that way. Its good for people to stick around the forums to fully explain their symptoms, whether good or bad but most of the time people kind of post once or twice then never to be heard of again! For all we know they could have had some condition before hand that they haven't told us about x

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Thanks Befree, really appreciate it.

Yes, the only times of the year where I feel fairly comfortable is probably Oct-March. Basically it feels like I'm always another level above everyone else around me in terms of temperature, so a cold day is mild to me, a mild day is warm, a warm day is boiling...etc.

Lol, well I actually managed another 1000 today too! :D For several years I believed that the side-effects had a bad effect on my energy levels. Now I'm not so sure. During those years (22-30 years old) I was drinking too much at times. This was for several reasons, inc been at uni for three years, and also a feeling of needing to make up for lost time (having not gone out much at all between 18-22 when a lot of others were doing so). However, looking back I think it was also self-medicating for feelings of depression, low self-esteem, and generally feeling 'different' and the odd one out in social situations because of my condition/s.
My weight in summer 2005 was about eleven stone (aged 22). By summer 2013 I was thirteen-and-a-half stone (I'm embarrassed about this!), so in 2014 I decided to start taking action. I now go out twice a month maximum, and try to eat well and burn 2500 calories a week. Through this I've got my weight to eleven stone twelve pounds. I'd love to reach 11.5 stones, but I'm realistic and don't think I could be eleven stone again – the same weight at 33 as I was at 22 is probably not gonna happen eh. :P

Anyway, the side-effects are very, very tough at times but I realise time cannot be turned back. As much as I sometimes perhaps do not sound like it on here I do try to live positively. I've kept up tai chi which I love, and do several self-help / self-care activities to try to improve my health and outlook as much as possible. I've stopped going for acupuncture for now. I absolutely loved it and psychologically it was a massive boost, but physically I just don't feel any different in terms of my nervous system, although I do think it probably helped my energy levels, and so if it helped me lose the twenty three pounds I've shifted so far then it feels like it was worth it.

Hyperhidrosis and the side-effects can cause me a lot of isolation at times though. Standing in a room with people and knowing that few (if any) will have this condition can be difficult, even more so the side-effects because I would imagine that the percentage of people in the UK who have had any of these operations must be extremely low. Saying that I did see (in the acupuncture centre) a testimonial from a fellow sympathectomy patient, which I was really taken aback by.

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Could somebody tell me a good place to have the ETC operation in the Uk ?

I've been thinking about it for years.

Blushing has stopped me going for certain jobs, giving my opinion about something, laughing and wanting to meet somebody new.

I'm in my 50's but have been plagued by this since I was a teenager.I'll be so much more confident if I didn't blush

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Hi everyone

I had ETS in Melbourne Australia about 3 years ago. I was extremely low/depressed having suffered from blushing for 10years or so, my mum had the Operation about 20 years ago as she also suffered from terrible facial blushing. I had T2 and T3 cut. I do suffer some CS when it's a hot day or I get anxious, around a 6:7 when it's bad but I also notice a lot of my friends sweat like this too and haven't even had the operation! I tend to swear in my inner thighs, top of stomach, chest and back. I do still blush sometimes but it's def not as intense and horrific as I used to, it's a lighter blush and disappears a lot quicker than before. I am still very sensitive to hear and stress and think I suffer from Rosacea/high colour in my face so whenever I feel stressed or am in a warm/hot room my cheeks and chin go super red, not a blushing feeling just a high colour. I'm not sure whether this is a side effect or it's something I would have Suffered with anyway... Anyway I am struggling with it as I get nervous about being in warm places as I know my cheeks will go red and then people comment and it makes me very anxious!

I do feel like the surgery stopped the feeling that is associated with blushing and the intense blush I used to have frequently but unfortunately I am still very concerned with my high colour/Rosacea... Triggers for this include stress, hot temperatures, wind, hot spicy food... 

Our nervous systems are extremely complex systems and everyone's is wired differently so I think it's extremely hard to know how the operation will effect different individuals. 

It is nice to know I'm not the only one that suffers as it does often feel that way and can be very isolating!

Troubled I totally get why you waited and then went for it when you finally felt ready even though you were in your 50s! It's amazing to hear how well it's worked for you :) 

 

 

 

 

 

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Hi Minnock1, if it's ok to ask, where did you get your op done and by whom. I'm 53, and like Troubled here I've gotten to a stage where I really need to do something. As such I'm having ETS in the very near future. No date yet, but I've met with the surgeon and confirmed. Just interested where you had yours done, as I think there only a couple of options here in Melbourne, one who clamps and another that cauterizes. Great to hear that the blushing has gone away. At least that's one stressor that you don't have to worry about. Hopefully over time the Rosacea will lessen a bit as well, due to the veins not dilating all the time with the blushing. You never know. Good luck to you.

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Hey 

Dr Roger Bell did my operation, he has performed many and he cauterises T1 and  T2. 

Yes my mum has similar side effects to me but not really Rosacea, she just gets red if it's very warm or is in the sun. 

It still amazes me that soooo many people suffer from this and the terrible mental impact it can have on your life. It's crazy! I always felt so alone with it. 

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That's great, he's the one doing my surgery as well. After looking around a bit, I thought that he was the one that seemed to have the most experience. After having a chat with him, I found myself feeling quite confident in his expertise. 

I know what you mean by feeling all alone with this affliction. You never seem to meet anybody else that understands what you're going through. When you read peoples stories on these forums you do get to realize that you are not alone at all. Pity there aren't blushing groups where you can get together with others and have a laugh, and not worry about being ridiculed for going red. Now that would be therapeutic. 

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That's great, he's the one doing my surgery as well. After looking around a bit, I thought that he was the one that seemed to have the most experience. After having a chat with him, I found myself feeling quite confident in his expertise. 

I know what you mean by feeling all alone with this affliction. You never seem to meet anybody else that understands what you're going through. When you read peoples stories on these forums you do get to realize that you are not alone at all. Pity there aren't blushing groups where you can get together with others and have a laugh, and not worry about being ridiculed for going red. Now that would be therapeutic. 

how did it go with dr bell? I am wanting to go with him in September, so looking for any feedback 

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Hi, 

I had my ETS for blushing done 2 weeks ago. Its my first time posting in these forums, but I just want to tell you my story (short version).

My blushing started when I was 22 years old, I still remember the first time. At this stage I didn't even know it was blushing, as I didn't normally blush before this time. It was clearly a physical problem, I was very confident at the time and the situation was not embarrassing at all. After around a year it became a psychological problem because of the fear of blushing.  At the age of 26 I decided to do the ETS surgery for blushing. I was aware of the side affects and the risks, but I knew that they would never outweigh the blushing problem, so for me the decision was easy. I went to Rome to get the surgery done 2 weeks ago. The surgeon was very open and honest about all the side effects. He also used a new Technique which would reduce the CS. I don't know exactly what the new Technique is, but he said he clamps the nerves in a way that will reduce the side effects as much as possible. 

When I woke up after the surgery I had some pain in my chest and back. Especially when breathing or lying in some positions. The pain was totally gone after around 10 days. I haven't blushed since the surgery. I even tried to put myself in very embarrassing situations, but I just cant blush :) My hands and face are not sweating at all. what surprised me the most is that I haven't had any compensatory sweating at all until now. I have been walking sunny 25 degrees Celsius for 30 minutes and the only place I felt an inch of sweat was on my feets, but that was not more than normal when I wear socks and sneakers in a hot summer day. 

I am 100% satisfied with my surgery, and it has changed my life back to how it was before the blushing problem, maybe even better. I feel like i'm released from prison after 3-4 years with this blushing problem. I also feel like a super human with mutant power (my power is that I cant blush what so ever, also I barley sweat anywhere). Its still only 2 weeks since the surgery, but for now everything is perfect! I hope you all will have the same success as I had.     

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Hi, 

I had my ETS for blushing done 2 weeks ago. Its my first time posting in these forums, but I just want to tell you my story (short version).

My blushing started when I was 22 years old, I still remember the first time. At this stage I didn't even know it was blushing, as I didn't normally blush before this time. It was clearly a physical problem, I was very confident at the time and the situation was not embarrassing at all. After around a year it became a psychological problem because of the fear of blushing.  At the age of 26 I decided to do the ETS surgery for blushing. I was aware of the side affects and the risks, but I knew that they would never outweigh the blushing problem, so for me the decision was easy. I went to Rome to get the surgery done 2 weeks ago. The surgeon was very open and honest about all the side effects. He also used a new Technique which would reduce the CS. I don't know exactly what the new Technique is, but he said he clamps the nerves in a way that will reduce the side effects as much as possible. 

When I woke up after the surgery I had some pain in my chest and back. Especially when breathing or lying in some positions. The pain was totally gone after around 10 days. I haven't blushed since the surgery. I even tried to put myself in very embarrassing situations, but I just cant blush :) My hands and face are not sweating at all. what surprised me the most is that I haven't had any compensatory sweating at all until now. I have been walking sunny 25 degrees Celsius for 30 minutes and the only place I felt an inch of sweat was on my feets, but that was not more than normal when I wear socks and sneakers in a hot summer day. 

I am 100% satisfied with my surgery, and it has changed my life back to how it was before the blushing problem, maybe even better. I feel like i'm released from prison after 3-4 years with this blushing problem. I also feel like a super human with mutant power (my power is that I cant blush what so ever, also I barley sweat anywhere). Its still only 2 weeks since the surgery, but for now everything is perfect! I hope you all will have the same success as I had.     

Thanks for your story and glad it has gone great for you. What nerve was cut T2 + T3 OR just T2?

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Hi, everyone

How's post-ETS treating everyone who has tried it? I'm highly considering going through with the surgery at age 22.

I'm not sure how to start but here it goes; I'm an athletic guy 6'0, have been told I'm handsome by both genders quite often, but I suffer from bad FB. It's really taking a big toll in my life. I try to avoid ANY situations that would make me blush/panic, which is really a hard task to do. I work as management in sales, but I feel FB is preventing me to move up the corporate ladder so to speak.

 Anyways, I feel like living a blush-free life with the side effects of CS, would be paradise compared to how I feel some of these days... 

I really do believe I was born like this, maybe inherited. But I also believe my FB is 70% physical and 30% mental. Unfortunately, my younger sibling also has my curse and has recently told me about his problems with FB. I'll be the guinea pig for him. 

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